Gifted Issues Discussion homepage Forums Twice Exceptional Benefits of getting a neuropsych eval?

Can someone please explain the benefits (and downside if any) of getting a neuropsych eval. I assume it would provide a clearer picture of dd's issues but whenever I try to get the name of one to use I end up hearing how hard it is to find a good one, we may not get any useful info if we don't use right one, etc. I hate to put my dd through any more testing if there is not a really good reason for it but also would hate to skip it if it will provide needed information. Any advice would be appreciated. Thanks in advance.

Hi Pemberley,

You'd go to the neuropsych if you want more detail about learning disabilities, developmental disabilities, or quirks that you suspect are impeding your child's progress in some fashion.

If you already have testing results that you think describes your DD well, you have a good handle on her LD situation, and you think the education she is getting meets her needs, there's probably no need to pursue it at this point.

The main downsides: it can be expensive (the local guy who doesn't take insurance charges $1800 for a full workup). (Ours, however, was covered by insurance.) It takes time (figure 6-7 hours of testing, plus parent and teacher questionnaires, plus a followup meeting to discuss the results). The waiting list to get into a neuropsych can be long. But if you feel you need more information, I don't think those are major downsides compared to the upside of knowing exactly how to proceed.

My leaning is always to have accurate information about the problems I'm solving...

DeeDee

Thanks DeeDee. My insurance might cover it and I would gladly spend the money if it resulted in useful, needed information. I'm just not getting a handle on what that information would be.

My school district is certainly willing - even eager - to provide services but I'm not sure if we really have a handle on her situation. As I've posted before they have made clear that her test results were unusual and they have only seen 1 kid like her in 30+ years. Would the neuropsych uncover the why's of what is happening with her? Or is it enough that the district is working diligently and the exact why's are less important?

Sorry I went to a training today and one "helpful" person accused me of "doing nothing" to help my daughter if I don't hire an advocate, an education evaluator and a neuropsych. I don't see a need to reject the school's plan and hire people just to appear to be doing something. The neuropsych, though, just keeps confusing me.

Ideally, yes, a good neuropsychological evaluation will help you pinpoint the "why" behind what you are seeing, so that you can target interventions appropriately.

Yes, going off half-cocked is a great way to make enemies. Not that I am at all opposed to hiring help-- we have a fairly large therapy team and an advocate. But you don't change the plan unless your best expert information tells you to, and you know exactly why you need to make the change.


What do you know now? I know you have a dyslexia diagnosis for DD-- are you comfortable with the accuracy of that? Who made the diagnosis, and what kind of information did they provide about targeting treatment to her specific issues? I have no expertise in dyslexia, but my understanding is that it's an umbrella diagnosis for a number of different problems-- do you know what type she has, and what the preferred treatment plan is for that type? That's the sort of thing I'd expect from a neuropsych.

You can certainly be forthright in talking to neuropsychs and say "right now we think we know XYZ because of ABC reasons. We need to know more about PDQ. Is that the sort of thing your testing will reveal? How many kids with this kind of disability profile have you seen? Will you be able to direct me to appropriate treatment after you complete the testing?"

DeeDee

I think it would be useful, and honestly, even if they are very well-intentioned--I would want information and expertise beyond what the school district could offer.

Dr. Beljan is very, very knowledgeable about giftedness and dyslexia (also ADHD/Executive Function). Even if you aren't anywhere near him I have corresponded with him and I am sure he would be do a phone consultation to share the benefits of a neuropsych eval, how to find the right dr., etc. He has at least one lecture on youtube where he addresses dyslexia/giftedness.

Edited to add: re: hiring an advocate--while there may be a time...I wouldn't begin with it. Sometimes it can set off an adversarial relationship when the school would have been in fact willing to work with you without hiring an advocate. Pete Wright did suggest bringing a clergy member once though! Honestly before an advocate get the book From Emotions to Advocacy. If you do everything in that book I don't believe that it would come to the point of needing an advocate.
http://www.paulbeljan.com/

I think an eval. could provide useful information that could help you advocate appropriately for your child.

Thanks for the replies. Dr. Beljan sounds perfect but I am on the other side of the country from him. (Frankly if there was a really good reason to use him I would travel there if needed but hopefully there is someone equally qualified in the northeast USA.) Contacting him for a referral or telephone consult sounds like a great idea.

I can't really specify what we actually know and I guess that is the problem. The director of special ed for our town said she never believed dyslexia really existed before she met dd - now she's a believer. The director of special services for the town said it appears we are not dealing with typical dyslexia but instead something between rare and unique. The OG tutor we were going to use if we went with the private school, and who really went above and beyond in finding information for us, was disturbed by these statements and didn't seem to think there was a question about dyslexia or that there was indeed "a rare type." The school pysch who did the testing just couldn't get over the 40 point difference between her verbal comprehension and perceptual reasoning - she was stunned and just kept repeating that this is seen in less than one half of one percent of the population.

We have been told that dd�s uneven performance confirms the ld diagnosis but no one in a school situation has ever heard her read fluently and comfortably. She did it for us for a while and was totally comfortable reading above grade level during a relaxed summer reading program. (The instructor there totally dismissed the diagnosis when we told her about it.) During her eval with the school psychologist her anxiety totally kicked in during the reading portion and she could not read Kindergarten level texts without many, many errors. Some of her errors were reading the right word but putting it in the wrong place in a sentence, reading the name of the main character wrong and changing words without changing their meaning. (i.e. she read "little" as "small" and "went" as "walked".) When she finished the book with 20+ errors she closed it and recounted the story absolutely perfectly - in complete detail.

They said she can cross the mid-line but has trouble integrating. Given a whole she can discriminate. Her math scores were above average (just below superior) but now her teacher is telling me that she is differentiating instruction for math as well because she is having difficulty with simple addition up to 30. (She skips or double counts items and for some reason the number "13" doesn't exist. It is very, very difficult for her to say the word so she somehow just skips it whenever she is counting.)

We had been seeing steady improvement in the fine motor skills but recently seem to have experienced a setback and her OT wants her to go back to strengthening exercises. Recently in school her math work has involved copying shapes on a dotted pattern. Given her visual perception issues and her fine motor deficits I can't even begin to tell you how difficult it is for her. She is not complaining but yesterday came home saying her stomach "really hurt" and she had "a piercing headache." I asked if it started during math working with the dotted paper and she said no, it started during writing time.

I guess all this indicates that we really should do a neuropsych eval huh?

In your shoes, I would, absolutely. School psychs are not allowed to diagnose anything-- their expertise is very limited and this is way out of range for them.

When you find a neuropsych in your area (and that is where the doc recommended by PP may be able to help you; the docs know their colleagues and can tell you who would be good in your area), share with them the test results you already have, and let them know you need to understand your DD's LD better so you know you are doing the right things for her.

DeeDee

Looking at Dr Beljan's website he appears to be very knowledgeable. There was a link to the herberger academy located on Arizona state
university campus. I was wondering have you heard any info about the academy?

thanks

We just finished with a full neuropsych eval and the information is invaluable. We are still waiting for the written report regarding ADHD but it is great to have someone to explain results, etc. and to provide information about accomodations, course of action, etc. who is really on your side. I know several people on this board have recommended Dr. Amend in Kentucky/Ohio which is closer to the NE. Good luck.

I heard back from Dr. Beljan and will be scheduling a phone consult. Thank you!

What a whirlwind couple of days and it's not over. Had my phone consult with Dr. Beljan who really couldn't give a good answer about dd's test results - "very unusual" was said several times. He gave us the name of a top-notch guy about 2 hours from us "Easily one of the 5 best there is - I would take my kid to see him." I called yesterday and after speaking on the phone he arranged for us to come in for a consult TODAY. He wants us to go to a pedi neurologist for an EEG asap to rule out a seizure disorder. I am in the process of making those arrangements now. Also he arranged for one of his colleagues to do a full neuropsych eval on MONDAY - as in just 5 days away! I can't believe this is moving so fast and with such a top notch person. Will keep you posted.

Wonderful news!

that is great news!

Pemberley, I hope you get all the information you need! This sounds like fantastic progress.

DeeDee

Hope the neuropsych eval yesterday went well! Hope you did get info that makes sense and will help you better understand your dd!

The eval seemed to go well - dd got through it in one day and seemed to enjoy the process. She came out invigorated rather than exhausted as I had expected. He declined to give any immediate assessment but said we should have full results in a few days. He really, REALLY wants us to see his preferred pedi neurologist "world renowned expert in pediatric epilepsy" so I guess he made clear what he expects to find. It would certainly explain what we have been describing as "the words just seem to disappear from the page." I doubt that is anywhere near the whole answer but at least it would be something definitive to address.

We have an appointment with his preferred guy late next month, unfortunately scheduled on DD's 7th birthday. Our local pedi neurologist can't see her until late January but they have scheduled a sleep deprived EEG for early next week.

So I haven't gotten the results yet but I think getting the neuropsych was a good idea. I will keep you posted.

Thanks.

p.s. Dr. Beljan has asked me to keep him informed - he seems like a really good guy and a great resource. Thanks so much for providing his info!

Glad your dd enjoyed the testing!

It's wonderful that you can figure out more and better help your kid.

Good luck as you await the results of Monday's tests (and prepare for the sleep-deprived EEG)!

It sounds very encouraging that you've found a private evaluator who is interested in understanding your dd - it will be interesting to hear what he thinks after you have the results of his testing!

FWIW, I have a dd with a seizure disorder and one thing you might want to do before your initial appointment with the ped neurologist is to think back through your dd's developmental history. The neurologist will most likely start before birth and ask a lot of very detailed questions that may seem very odd but all fit together in understanding your child's neurology. It sounds like you haven't suspected seizures, and fwiw we didn't suspect them in our dd until she had the type of seizure that was so obvious you couldn't miss it... but we realized in hindsight, after talking to the neurologist and going through that developmental history, that she had in fact been having seizures for quite some time, we just didn't realize that you don't necessarily lose consciousness or have convulsions with a seizure.

The other warning fwiw, a child may have a seizure disorder and have a perfectly normal sleep-deprived EEG - that initial EEG is just a 45-minute (give or take a few minutes!) look at brain function. Our dd, for instance, doesn't have predictable seizures and they weren't happening constantly, so she's never had one appear during an EEG. It's possible that the neurologist may want to have an MRI also.

Good luck as you move forward,

polarbear

Just found out that our insurance will cover the preferred neurologist at the same level as our local one! Nice surprise indeed. They also sent paperwork to reimburse a portion of the neuropsych testing. I doubt it will cover a large percentage but every little bit will help. It looks like this may be a long and winding road.

Thanks polarbear - always nice to hear a voice of experience. I actually did mention to dh a few times that I wondered if these "words disappearing" episodes could be some sort of silent seizure. No one ever echoed the idea though so I figured it was too far fetched to consider since I have no medical background whatsoever. I actually doubt that this EEG will show anything definitive. This whole process has been so mysterious it would be too simple to have something show up on the first test.

I will keep you posted - thanks for all the support and feedback!

Good news: EEG results were "completely normal"

Bad news: DD was sent home from school today with yet another "stabbing headache". Pediatrician thinks she is developing migraines. Not surprising since DH and I both suffer horribly from them. Our biggest trigger is fluorescent lighting, followed closely by food additives. DH said his headache went through the roof when he entered her classroom today so is guessing fluorescent lights may be contributing.

So now we have fine motor deficits, ld's, anxiety (apparently under control until the headaches started a few weeks ago), possible seizure disorder and apparent migraines. We will get the neuropsych results on Friday. At this point I don't know what to expect...

{big sigh}

((sigh))

Well, Pemberley. At least she has totally devoted parents to see her through and keep looking for the right answer.

No matter what it is, you'll all hang in there together and try. There is great value in that, actually.

DeeDee

I had a migraines as a kid. Brutal -Ii feel for y all! Now 30 years later have discovered I have had Celiac all along and had no idea. She's fortunate to have parents who can actively pursue not only solutions but answers that may help her live unhindered as an adult by some of the challenges cropping up now.

I'm so sorry about your dd's migraine - I hope she's feeling much better today. So many of the teachers at our oldest dd's elementary school keep the fluorescent lights in their classrooms turned completely off due to the large number of kids who are bothered by the lights, as well as being bothered by them themselves.

I'm glad that your dd's EEG was normal, but also totally understand that a "normal" EEG just means no answers which can be so frustrating!

Let us know what you learn from the neuropsych -

polarbear

Thanks everyone. She had another headache at school today but was able to go to the nurse for Tylenol so she didn't seem to be in bad shape when she got home. I also asked the teacher to move her desk so has light from the window behind her to diffuse the fluorescents. Our pediatrician also mentioned that orange juice can be a migraine trigger for some people so we are removing that from her diet. We're already pretty careful about other possible triggers so we'll see if that helps. Now sort of dreading the conversation with the Neuropsych tomorrow. It just seems like this poor little girl is getting a higher and higher hill to climb every time I find out something new. It just doesn't make any sense...

Good Luck!

Spoke with the neuropsych and read his report. Basically he is confirming the really, REALLY unusual numbers from the school psych and pointing out major visuo-spatial issues. Visuo-spatial analysis, constructional integration, memory, etc are all deficient. Verbal memory, attention - especially visual - and sequential motor organization and speed were all deficient. Also �suggestion of slight right, visual hemiinattention.� On the positive side we have oral language and Executive Function. He seems to think the seizure disorder is only a remote possibility but is glad we are seeing the neurologist soon.

I have forwarded the report to my school but have no idea what else to do. He wants us to revisit her IEP to make sure that all her visuo-spatial deficits are being addressed but quite frankly I have no idea what that means. They said she is too young to diagnose dyslexia so I don't really come out of this with any good buzz-words to use. Or do I? Can somebody please help to explain?

DH and I are back to feeling really, really guilty about her gene pool...

Hi Pemb--

If you're still not sure what is needed, go back to the neuropsych and ask: based on these deficits, exactly what do we need to DO?

Ask that the neuropsych's written report contain specific recommendations both for in-school therapies and accommodations, and for therapies that could be provided outside of school.

Keep asking until you know clearly what he thinks is needed. Sometimes experts don't do this unless you ask again...

DeeDee

p.s. don't fret more than needed. Keep looking forward. You're doing so well by her.

I agree with everything DeeDee said - the neuropsych should be able to give you specific recommendations re what you can do as next steps at school and outside of school to help your dd. I've had two of my kids go through neuropsych evals (my 2e ds has had two now), and each of those times I've had a follow-up appointment in person where we discuss the report, and then I've made an additional follow-up appointment for 1 - 1.5 hours one week or so later so I can discuss everything with the neuropsych again after I've had time to let everything the neuropscyh told me at the first report-review meeting sink in and I've thought about it a bit.

It also helps to remember that sometimes neuropsychs can forget parents are at a very beginning/low-level of knowledge/experience point in understanding what their options etc are - so be sure to stop the neuropsych and ask questions any time something's not perfectly clear. For example, our neuropsych is a very good pscyh and she really knows her business, and makes good recommendations. But she also talks fast, tries to fit a lot into an hour long appointment, and has other folks with appointments sandwiched in between so she goes through things relatively quickly. It was easiest for me at first to just try really hard to take notes on what seemed the most important to me and let something slide if I didn't totally understand. This is a very specific for instance which has nothing to do with your dd, but illustrates what I'm getting at - my 2e ds struggles with written expression. At his first neuropsych eval in 2nd grade, the np recommended to us that when we were looking at schools to "be sure they don't put him into the multi-sensory program because he doesn't need that". *She* new that what she was saying was don't let them put him into the program in SPED that is specifically for dyslexic children who are struggling with learning how to read because your son can read just fine, but we parents were sitting there thinking we were focusing on written expression (which we were) and didn't even realize that we could request an IEP eligibility review for our ds, knew nothing about the district SPED program, had never heard of multi-sensory anything before that point, etc. The np was giving us valuable, valid advice, but we didn't have the background knowledge or experience to fully understand what she was talking about.

One thing that really helped us at that point was to talk to our local parents' advocate group. If you don't know of one, you might be able to find one either through the yellow pages at wrightslaw.org or by calling your school district's SPED department. Even though we called our advocate's group specifically because we had questions about obtaining a 504 (initially) and later about the IEP eligibilty process, we found that the advocates also knew and/or had suggestions for how to proceed with accommodations etc for different types of disabilities. They (in our case) were also parents of special needs kids, some high IQ kids, and it was helpful sometimes just to talk for a few minutes on the phone with another person parenting a high-needs child.

Parenting a 2e child is a process. A long process. None of us will have the answers for our children overnight. Know that you're doing all the best things you can do - and that with time, the answers will come (and more questions too!).

Again, as DeeDee said - keep looking forward. You *are* doing so very very well for your dd!

polarbear

Thanks DeeDee and Polarbear. I asked what I should be doing and was told "You're doing it." I asked what I should ask the school to change in light of these new test results and was told "Give them the report - they should know what to do." I heard back from the school and they said once all team members have a chance to review the report we'll meet to discuss any changes to her IEP.

I know she is in a good place with people who are trying their best to meet her needs and we are MILES ahead of where we were this time last year. Any yes, as polarbear says, the neuropsychs tend to forget this is our first time down this path. I just hate feeling so ignorant. Part of me wants to hire an advocate who has been down this road before but I really don't want to risk alienating a district that has been so cooperative. I think I am getting pretty good at asking questions but I'm not there yet in terms of understanding the answers

You can consult with an advocate on the side without bringing him/her to meetings with you. If you want the expertise but not the baggage. Or you could nag the neuropsych some more.

The report should have recommendations, but I have found that if you don't discuss/understand things beforehand they might not fit the school situation/possibilities right. Especially if you have no idea what the possibilities are.

Oh, and I am writing the above as if I knew what I was doing, but we are still flailing here, with a complete failure to get the school to do anything for my son. Who does fine academically, but struggles socially. If there is anything between a 1:1 aide (which we will clearly never get) and keeping him in the office during all recesses and lunch breaks (the latest suggestion from the school), we haven't been able to articulate it.

Pemberley, we never actually hired an advocate, and our school never knew we'd consulted with an advocate. We were able to find a non-profit advocate's group that allowed us to call up and ask specific questions. They also reviewed our private evals and school paperwork etc so they'd understand as much as they could about our ds' needs and abilities etc.

The thing that consulting with an advocate helped us with the absolute most was understanding our local schools - even though Federal Law is the same everywhere in the US, the specific ways in which IDEA and ADA are implemented vary quite a bit, plus there are huge variations even within our school district re how accommodations etc are implemented, how school staff feels about accommodations etc - things like that. Plus the advocate's group was able to give us the language to use when talking to the school staff to give us the best "at bat" chance of getting our ds' needs met.

And I need to give a warning similar to Sia's - we haven't always been terribly successful! It took us 3 years to get an IEP, still had the school trying to tell us "everything is ok", once we had the IEP our ds wasn't given the help he needed and was outlined in the IEP, and ultimately our best successes for ds have come through private therapy that we've had to pay for, and this year we just absolutely bailed on the public schools here and went private because our ds was a mess emotionally both from not being challenged appropriately within the areas of his intellectual strengths and at the same time not being helped in the areas he really needed help. So that's my big disclaimer - and also my sincere wish that the journey is much easier for your family!

Best wishes,

polarbear

Thanks Sia. I was just sitting here thinking of this option. I recently met an advocate who is excellent with the LD stuff but rather confrontational and doesn't seem real strong on the 2E front. It may be worth hiring her to help us understand and prepare even if we keep her in the background and continue working with the school ourselves.

Has your school tried setting up a working group with a couple of highly social, sensitive kids to work with your ds? Maybe lunch once a week with the social worker or school psych to facilitate?

Hmmmm... There have been suggestions along those lines, but they have revolved more around throwing all the problem kids together (with a facilitator, except they can't find one). Thanks for the new idea!

SiaSL,

This might come in handy for the school.

In the light of a new day I am feeling a bit better about all of this. Polarbear I know exactly what you mean about huge variations in implementation. I still can't believe that with all the issues we have discovered and all the services our district is providing that last year I totally hit a brick wall at the regional magnet. If we had lived in the city where that magnet was located DD would still be suffering verbal and emotional abuse while being considered ineligible for even an evaluation. It is SO not a level playing field. My heart breaks for all the kids who find themselves in districts that aren't willing (or able) to meet their needs.

This is the recommendation section from the neuropsych's report. Is this similar to what others have received or should I have expected more detailed input on exactly what to request in terms of interventions? Someone yesterday suggested I look into whether or not "vision training" might be appropriate. Any input?

*******

1) Workup by a pediatric neurologist with appropriate EEG. I made the referral to __________ M.D. at __________.

2) ________ may benefit from a cognitive remedial program with the emphasis on memory, attention including hemiinattention, and visuo-spatial perceptual organization. She is not acquiring reading/writing skills at the rate that would be expected give her verbal IQ and precocious language development, and her educational program should be reviewed in light of these findings


3) Further occupational (OT) evaluation, therapy, and consultation to address fine motor and visuomotor skills. It may be possible to pursue this through school and the OT should provide regular consultation to teacher and parents to help promote generalization of skills.

4) In light of the significant nature of the findings, a repeat neuropsychological evaluation is indicated in 10-12 months to assess any changes in the cognitive status; or sooner if dictated by the changes in the clinical picture.

Although it's not the same set of recommendations, it's similar to what we received (although from things I've heard from other people - I have always felt we didn't receive as much as other people do lol!). We were able to get more specific details verbally from our neuropsych, but this is very similar to the amount/type of info she included in her official report.

If you don't have specific info from her re what type of cognitive remedial program or where to seek that out in your area, I'd ask for the info. Our neuropsych never included those types of specifics in her report but she made very specific recommendations re who/what was the appropriate person or service to seek, or in the case of OT, for instance, she felt any OT would work and recommended we get on every waiting list we could and take the first appointment we could get (waits are very long for OT here).

My older dd has been through vision therapy. It's somewhat controversial, and I can only give you our limited experience but fwiw, for our dd it was *extremely* helpful. It was recommended by a neuropsychologist based on her performance on the WISC and a follow-up visuo-motor test (Beery VMI). She scored extremely low in the one part of the WISC that asks children to find and mark matching characters, and couldn't copy accurately on the Beery VMI. Her scores on the WISC subtest was sooooo so very low it was below the 1st %ile - I'm not sure she actually found even one character, and it was a huge drop from her other WISC scores which were very consistent across the board. On the Beery her low subtest score was also very low, maybe around the 5th percentile. The neuropscyh suspected vision troubles based on that and referred us to a developmental optometrist. I was very skeptical as our dd had just cruised through a regular eye exam with 20/20 vision. We talked to our regular eye dr about it, and she too recommended we give it a try - her take on it was if it was a neurological challenge, vision therapy wouldn't help, but if there was a muscular weakness involved it would help. And yes, it helped *tremendously* - we didn't realize until her vt eval, but she had severe double vision - so severe that much of the time her brain was switching off the vision in one of her eyes. She was 8 years old when we found this out, and she literally had no clue that the rest of us also didn't see two of everything most of the time! Anyway, in addition to the double vision her peripheral vision was very limited and her eyes didn't track. So for her, vision therapy helped tremendously, within just a few months. She went from being a struggling (and perplexing!) reader who hated reading to being a great reader who loves to read and walks around with a book in her nose most of the time.

What I don't know is if what your neuropscyh is referring to as OT for visuomotor is related to the types of things vision therapy would help with. Our ds has a visuomotor challenge, but he's also been screened by the vision therapy folks and came out a-ok with no worries there. I know he scores low on visuomotor type of np tests, but don't remember the specific subtest names at the moment. Our dd, otoh, had an extensive OT eval at 4 but the OT didn't catch any visuomotor issues. So I'm guessing it's two related but different things?

polarbear

Our most recent report not only included referrals for SLP and OT and recommendations for remediation, but numerous specific recommendations for appropriate classroom and testing accommodations and modifications, as well.

My son has/had similar visual challenges, including left-sided visual neglect/hemi-inattention, and that appears to have improved greatly with targeted therapy from an OT specializing in rehabilitating visual issues in addition to "regular" OT.

There's a ton they can do, if they are willing to bother. Keeping him in the office would seem to be a non-starter (how is he going to learn social skills? If this is a persistent issue, he needs more practice, not less.) How old is your DS?

Some options:
--weekly lunchtime social group, facilitated by guidance counselor or speech therapist. Can focus explicitly on friendship themes or be a conversation/book club, depending on need. Can include only kids who need work on social skills, or a mix of kids who need help and peer buddies.

--pushed-in special educator or trained paraprofessional support during particularly social times of day (group work, gym, recess)

--educating the school staff who deals with the child (not just his teacher, also the lunch/recess aides, gym teacher, others who have lunch duty, etc.) about ways to watch for problems and cue him what to do.

Apart from school:

--outside-of-school social skills workshops run by speech therapist or psychologist.

--enroll in Indian Guides, Lego club, Cub Scouts, or any other situations where kids are explicitly learning to work together.

DeeDee

Nice that they think you're doing the right things; but I'd ask for more specifics. Most schools aren't going to be doing everything the neuropsych would recommend-- you need to know exactly what the ideal treatment plan would be, so you can get as close as possible, or as close as you care to get.

If you don't know precisely what's needed, you're still just relying on the school for information; not as good for the careful, planning sort of parent. And that recommendation is definitely part of the neuropsych's job.


I would want to know what program this would be (precisely) and what person the neuropsych believes is qualified to deliver that program. This is an area where there are junk science people ready to take your money; the neuropsych should be willing to say (verbally to you if not in writing) exactly what methods can best be used to remediate these issues.

Vision therapy is very good for some people; some see benefits only during the therapy, and regress after; for some it does nothing. An honest provider will do an assessment and say whether it's likely to be of benefit; a less honest one will just take your money. The exercises are taxing and tedious; finding out from the neuropsych exactly what program will work is likely the best way of not wasting effort and money.


We have found that what schools offer in regard to OT/PT can be supportive but is sometimes not enough to get the job done. YMMV. If your insurance covers some outside therapies, you could look into that. But I agree that the OT in school can be very important for generalizing skills across the day, making sure everyone understands what's being worked on.

Hang in there,
DeeDee

Pemberley, your love of your child comes through so clearly.

I hope, amidst all the tests and worries and research, you are able to just have some fun as a family.

You've mentioned a couple of times feeling guilty about your genetic contribution. Well, here's a pat on the back for the thoughtful, loving approach you are taking to help your child. It sounds like your child has two parents working together with thought and care. Lucky kid!

Thanks Laurel and DeeDee. As I have digested this for a few more days I have tried to come up with an action plan. We have an appointment with the neurologist next week. Several people have strongly suggested an MRI so I am guessing he will order one so we can rule out a tumor causing these headaches and unusual numbers. I'm not sure what else would be done to rule out seizure disorder but I am guessing we'll be finding out. I find that I am not overly upset about these things despite the reaction from everyone around me. I think it is because if they are an issue they would be present whether I know about them or not. It would be better to find out and deal with it so I am being very practical. Also my "mom gut" isn't feeling a real likelihood that they are there, especially the possibility of a tumor.

The LD's and migraines really have me concerned though. These are "invisible disabilities" that will affect her throughout her entire life. I have been totally run off track by migraines (and probably undiagnosed LD's) despite being HG myself. DH clearly has major LD issues which his parents could not accept when he was a child. The combination of those plus terrible migraines makes many days very, very difficult for him too. I so want to waive a magic wand or find a miracle therapy that will save DD from all of this. I know I can't but I really, REALLY wish I could.

So now to some practical considerations, some of which I am hoping the folks on the board can help with. First, if I can't understand the neuropsych's explanations or recommendations I will find someone who can. After we visit the neurologist I think I will get back in touch with Dr. Beljan and see if maybe he can review it all for me and help come up with recommendations to bring to the school. I think that what may have happened was that he sent me to the best clinical np he could think of because of the unusual numbers. Now that I got that info I need someone experienced with 2E kids who can help me bring the info to my school district in the most efficient manner. I also may hire the LD advocate to give us background info but not to bring to the meetings with us.

I also need to make sure that I am preparing DD for future success is school. I totally accept that they really need to focus on basic reading and writing during her take out times in 1st grade. We will continue to do content enrichment on our own. (We make it fun.) I am also going to buy a computer that we set up for her to use comfortably. A friend will be helping us select the machine but she said we need to have an idea of what software it will need to run. Any suggestions for FUN software to help her learn typing and keyboarding skills? Should we expect to have her use Dragon down the road? Any other voice-to-text or text-to-voice software to consider? Mac or PC? With visuo-spatial issues any special considerations for the monitor?

Oh, and if her migraines are being triggered by fluorescent lights any suggestions? I am going to get her earplugs to help with sound sensitivity but has anyone had any success on the lighting front?

Sorry so long but I really appreciate all the help and support you have given me on this journey so far.

p.s. Yes Laurel, we have LOTS of fun. I think DD is about the happiest, most adventurous and fun-loving kid I have ever known. Lots of giggling and laughter around here, despite all that is going on

I loved hearing about the giggling and fun at your house! Sounds like you have a resilient and fun kid!

You had mentioned this concern:

>if I can't understand the neuropsych's explanations or recommendations

When you visit the neurologist, you should get answers and recommendations that make sense to you. You deserve them and answering these questions in a crucial part of the np's job!

It may be all new to you, there may be jargon and assumptions about what you know... ask all questions you need to ask. Ask for a written list of recommendations for home and school. Go back and ask again and again until you get the answers you need. If the doc seems rushed, ask for a follow-up appointment to discuss your questions. DeeDee and polarbear had some great suggestions about this earlier in this discussion.

It's a great idea to have Dr. Beljan or someone help coordinate the plans! But I would say that you deserve helpful info from each specialist you see, too!

Sorry I don't have suggestions about the fluorescent lighting or computer choice--someone with more experience in those areas will chime in soon, I bet!

Good luck, take care!

Saw the neurologist yesterday and he ordered an MRI as well as a 48 hour EEG which means she will have to go into the hospital for 2 days. He is "hoping" this is all something she will outgrow but could be a result of her concussion last February. Also prescribed something to help with the headaches but is thinking ithey may be the result of anxiety. Her happy disposition masks a lot and he pointed out that she has a lot of frustration to deal with as a result of the growing list of ld's. I will have to push the school to add some focus on her strengths along with all the pull-out and push in for LD stuff. I can't imagine how frustrating it would be to spend 6 hours a day working non-stop on things that are so difficult physically and never get to enjoy the stuff you're good at. Classic 2E dilemma huh?

Anyway yesterday was also dd's 7th birthday so after her appointment she had an absolutely perfect day. I can't imagine any little girl having a better birthday. We went totally overboard but she enjoyed every minute. With all she has going on I thought she deserved a day of total spoiling

Bought the computer and fun learn to type software. Now a week and a half break from school will also give the migraines a break. Crossing my fingers anyway...

Quick update: We are just out of the hospital after getting the EEG and MRI. We had to stay an extra night because they picked up a *brief* (i.e. quarter of a second)discharge spike the second night. I don't know what it means - if anything.

Headaches stopped over the holiday break but came back after a few days back in school. Also had a bad headache each night in the hospital. As usual her personality and vocabulary floored everyone in the hospital - "Is she always like this???" She had the other kids singing and dancing - the staff even brought each newly arriving kid by dd's room so she could make them feel welcome. She is being a really good sport about it all - I really hope we can get some answers for her.

We have a meeting with the school scheduled for next week to hopefully implement some recommendations from their OT. I doubt we'll have answers from this testing by then but hopefully we can at least address reducing any anxiety or see about limiting exposure to fluorescents. Still not sure just what to do with the neuropsych results. I don't feel I can push for more info from anyone until we get the results of all these neuro tests. Oh well, this is a marathon not a sprint - right????

Right. I hope you are on the road to useful answers! Hang in there.

DeeDee

Take a look at this if you already hadn't -
http://en.wikipedia.org/wiki/Cognitive_Remediation_Therapy
Hemiinattention is also called Hemispatial neglect -
http://en.wikipedia.org/wiki/Hemispatial_neglect
I have no idea what visuo-spatial perceptual organization means exactly (can't find it on google, never a good sign so stop feeling bad because you don't 'get it' ok?
but this site looks like it might be worth absorbing -
http://www.macalester.edu/academics/psychology/whathap/ubnrp/dyslexia/types.html

Good luck!
Grinity

AARRGGHH! Had a phone consult today with the neuropsych recommended here and it looks like the eval we had done is not valid! Results don't make sense, conclusions are not based on the data, etc. We can't be getting scores in the 2nd percentile followed by scores in the 95th percentile that require the same functioning, etc. I offered to travel with dd to see him but now we can't test again for awhile because he would use the same tests and that would give a "retest" artifact. Absence Seizures could possibly explain these weird numbers but she didn't show any seizure activity when we were in the hospital last week. So we are left with NO ANSWERS!

I am so beyond frustrated I can't believe it! In talking to him today I got a true sense of what we SHOULD have gotten from a neuropsych eval which is not at all what we actually got. We were put in touch with a top-notch neurologist which is good, and we are working on ruling out medical reasons but we got nothing - Nada, zero, zip, zilch that will be useful with the school or assessing ld's. Oh and we "can't" have the happy, outgoing personality with the numbers on this report. Someone with these scores would be so impaired they would be almost unable to function.

It's hard enough running this marathon without being sent back to redo portions of the race...

Did the new neuropsych. say that he wouldn`t redo the testing now because of the possible re-test artifact or is this more your concern?

I did a bit of reading about this because my DS11 was re-tested with the WISC just under a year after an initial test. Our neuropsych. was not too worried about re-test artifact, and I think it has only been shown to change scores by a couple of points. Unless you need the numbers to be valid for entry into a special program (which wouldn't likely accept the second testing), I don't think re-testing within a year would be a problem and shouldn't change the overall pattern of scores.

No - it was him. I'm ready to get on a plane but he said it wouldn't work. We can come in July, a year after her initial testing by the school psychologist. The neuropsych who tested her in November said she should be retested in 10-12 months so this would be fudging it a bit but we could get some answers before the next school year. Besides who doesn't want to visit Phoenix in the hottest part of the summer if they can?

Pemberley - I don't know how many people i have trotted my DD past in the last year trying to get a dyslexia diagnosis. They all umm-ed and ahh-ed.nkostly saying she wasn't gifted, delayed or anything but average. VERY average. I think she's VERY 2e. Last week I took her for an aspergers assessment. They got to the end and said "hands down, no questions asked she's dyslexic!" But they couldn't say on the aspergers yet because she was too borderline, primarily on the school paperwork. I didn't know whether to laugh or cry. But I was at least relieved to finally be speaking to someone who was clearerly talking and thinking about my DD in exactly the way my reading tells ms she needs to be seen. So I really feel your pain and frustration. I hope the answers come in time for the next school year.

You know what would be really, really helpful? If we had a way to compile a list of the neuropsychs that people on the board have had a good experience with. In my area I have been told over and over how easy it is to find a bad neuropsych but just about impossible to get into a good one. I am willing to travel if needed to get to the right person. The person in my area that was recommended by the one I would have travelled to turned out to be a dud - great for neurological concerns but no help at all in terms of LD or 2E issues.

Is this allowed by the rules of this site? Whether this thread is the right place or to create a new one I think the info could help a lot of us looking for the right person to test our kids.

What do you think?

That's one of the hopes I have for the gifted wiki. Open registration is currently closed on it due to spammers, and because I am working on the initial fill of it (I still haven't developed the template for psychologists/testers either, lots of work to do). The reason I was thinking a wiki would work well for that is that it would allow drill-down by topic of interest (i.e. different types of 2E) and also by geographic area. But the most important thing is for the information to simply be collected.

I don't think the rules here disallow that sort of thing. I've seen tons of recommendations for Aimee Yermish, Ed Amend, Deborah Ruf, etc. I hereby put in a massive plug for Laurie (Lorraine) Jensen, for anyone needing testing in New Hampshire. I haven't seen a thread for that-- would you like to start one? If it turns out to be useful enough, perhaps it could be stickied. If it were me, I'd create it in the "testing and identification" forum.

If you do create a thread, I would ask participants to fill in some basic details, providing labels so that they tend to a similar format. As an example of the idea:

Please include in your answers at least the following:

Name:
Organization:
Full address at time of posting:
Website:
State or province (please abbreviate):
Area(s) of expertise: (e.g. "2E", "Asperger's", etc.)
Experiences with the tester:

Something similar would make it easier for people to find appropriate testers with a search.

In northern Illinois I recommend Michelle Navarro

{big sigh}

We are just back from the local neurologist. Last fall when the headaches started getting bad our pediatrician referred us locally and we have heard good things about the practice. The neuropsych wanted us to see his "world renowned" guy so we made appointments with both. Since we already saw the big name guy and had the 48+ hour EEG and MRI I planned to cancel today. We called to ask if we should still come and they said to do whatever pediatrician recommended. Pediatrician thought we should keep the appointment since she feels it's important to have a local one to help with the headaches and it would take 2 months to schedule a new appointment.

Local neuro was not pleased that we were taking her time. She does not expect the recent testing will show DD has a seizure disorder and she does not believe the headaches are migraines - yet. She is thinking the headaches are anxiety induced and we should start play therapy. She was happy we had not yet started giving DD the headache meds "world renowned" guy had prescribed and thinks we shouldn't. Although prescribed for migraines it is actually an antidepressant and would potentially mask the cause of all of this.

She agreed totally with Dr. Beljan that the neuropsych report we got is totally invalid. "The numbers don't add up" and "This clearly doesn't reflect the person in front of me." She also agrees that "you can't fake good" so the parts of the testing that show numbers in the 96th-98th percentiles are accurate but the rest of the testing numbers "are meaningless". She emphatically agrees that we need to get DD retested but does not think we need to travel to get her retested by Dr. Beljan. She gave us the name of someone she considers very good who is local. If there REALLY is someone local who is good WHY OH WHY did person after person tell me "There are a lot of bad ones in the area but none who are good"?

OK, so how would you go about vetting the new neuropsych recommendation? We already paid $3k out of pocket for one that we have been told is invalid, not to mention losing this entire academic year in having no proper recommendations to work with. I do NOT want DD in any more doctor's offices if we can help it.

Ideas?

(sigh)

Pemberley, is there a support group for parents of special needs kids in your area? Some school districts have them, some don't. That's where you will find people who know about neuropsychs... find them, and ask them. If you ask enough parents, you'll start to get a clearer picture, I hope.

DeeDee

How confusing and stressful this all must be Pemberley - it's confusing enough to me just trying to keep track of everything you've written, I can't imagine how frustrated you must feel when it's your own child! I wish we could all give you a huge cyber hug.

I agree with DeeDee's suggestion to try to find a local parent's support group and ask for advice their re experiences with local neuropsychs. The other thing I'd consider doing is going back to the school district with your medical eval results and if you can get it, a letter from the neuropscyh you talked to on the phone who has questioned the large discrepancy in your dd's first testing. I'd request a follow-up eval through the school district based on the input you've had from medical experts and the other neuropsych. You won't' get that eval (most likely) until late spring or early next school year, but you'll get your request on the books.

When you run up into that brick wall of "can't re-test within 12 months" there *is* a way around it - using a different test. It looks like the big question is with the ability test scores, not the achievement tests, so I would try to find someone who can test asap using a different IQ test - that should be something you *can* do. Most likely you can't do that through the school district because I suspect they only use the WISC, although they might be able to administer one of the group IQ tests that are used commonly for screening for gifted programs in early elementary - that wouldn't be the best answer (as far as I know) because you wouldn't get as much detail, but it might be that if there is a huge gap it would show in some way on those tests. I think the best scenario would be to find someone who can administer either a form of the SB or the WJ-III Cognitive Abilities test. Our 2e ds has had the WISC twice and the WPSSI before kindergarten privately, and the WJ-III Cog through a school district evaluation. Although his gap is in a different area then your dd's (it's all in processing speed), he has a large gap in scores. The key thing is - it is consistent throughout each of the IQ tests he's had over the years, which helps confirm it's not the result of anxiety or distraction etc on the day of the test. One more test for your dd could help answer that question, which would allow you to move on, so that would be the primary thing I'd be looking for at this point, either through the schools or privately.

The other thing I'd do is go back over yourself, what types of troubles (not just her migraines) your dd was having in school last year and this year, when did they occur, what activity was happening, where was she, every little detail you can think of. Look for patterns, go over again what appear to be the issues - to you - then take a close look at the abilities tested in the parts of the WISC that your dd's scores are low in. If you see a relationship, don't be deterred by a professional who says the gap is too large - what's more likely in that case is that your dd really is a very unique individual and unique enough those professionals just haven't seen anyone with a similar IQ profile.

I'll also add another thought - as parents we tend to worry about, are we going to find the best professional to test, will they be familiar with gifted children (or whatever else is in play with our kids), will they take their time and do a thorough eval etc. When it comes to taking this next IQ test, my honest opinion in this case is that - as long as you feel you've got a competent professional, don't overthink the choice of who, just try to get it done. If it really was anxiety or some other off-thing that impacted your dd's test scores the first time around, then you'll see a very different profile whether or not your dd is tested by the best neuropsych on the planet. If she's got a true gap, that's going to show too. In my ds' testing, we had tried our best to get him a good's night rest before his private appointments, and made sure he wasn't stressed out etc. Then when he was tested at school - yikes. The school wouldn't tell us when they would test, but we didn't realize that - we thought they'd let us know when, and we were also used to the school moving *very* slowly on things. We'd just come back to school after Christmas break, and at our ds' school those first two weeks are a special class time where kids get to study a class of their choice that's outside the normal curriculum and in general something they really really enjoy and want to study intensely - that year our ds had an astronomy class which he was *loving*. One day after school we went ice skating which, at that point in time ds loved. Then he got run over on the ice by a huge adult, took a hard hit on his head plus bit through his lip to the point we considered taking him in for stitches. DS was screaming and had a horrible headache that night which we had a tough time giving him enough pain meds to even get to sleep - he kept waking up all night. Plus he was so freaked out by the accident he kept remembering the big guy plowing into him, over and over and over again. I think he slept for maybe 2 hours max all night, then had to get up and go to school again and then.... you've most likely guessed it by now... he gets to school, is in this way awesome class he's so enjoying and that only happens for two danged weeks and sure enough, he gets pulled out for his IQ test. ARGH! My normally very laid-back mellow ds was sooooo beyond mad about getting pulled out of the class that he spent the next week complaining about it and would still bring it up even more than a year later if there was ever any mention of anything to do with his IEP etc.... clearly not the ideal scenario that I as a parent would have picked for my son to take an IQ test! But.... I mention all that because... his IQ scores were still consistent - the highs were still uber-high and his low was still totally completely obvious. So - absolutely try your best for a good test situation with a good psych, but also don't overthink it - if there's a gap there, it's going to show.

Last thing - I'll have to go back and re-read what your neurologist said about seizures again and why they are convinced your dd doesn't have seizures... I'm not convinced! Seizures can be such a very very random thing - my dd's seizures did not happen often - there was no way we could have predicted when to have her set up to be running an eeg to catch one simply because of the randomness of it. However, our neurologist walked us through a very detailed history with a ton of questions about dd's history from the first day she came into our lives, and was able to draw out specifics that we would never have related to seizures and pull together details into a picture that made it clear she'd had seizures. Then... when we had a follow-up appointment with her *real* neurologist (neurologist #1 who made the diagnosis was a colleague who was taking calls while the real n-dude was on vacation)... the real neurologist had a clear eeg, was in a hurry, and couldn't be bothered. The same thing has happened with our same dd with other medical professionals when she doesn't fit an easy-to-diagnose pattern. Really really frustrating! But it doesn't make the symptoms disappear... just because they are difficult to make sense of and don't fit what is "typical". Sorry, I'm getting off track - basically just wanted to say, hang in there, keep a list of what you do observe, and just because a person is a professional, don't doubt what you feel is going on either. You're the person who is living with your dd and knows her best.

My apologies for rambling - I hope some of it helps.

polarbear

Neurologists tend to be difficult to deal with, in my experience.

I'm not sure why, but that seems to be the way it is.

Thanks Polarbear - yes your stories help. I have had several people who know DD very well say that they think she is "unique" and likely to come up with a profile no one has ever seen before. I can't wrap my head around that possibility but it does keep coming up.

We just got back from a meeting at the school to talk about adding OT to her IEP. Ironically that is how this whole journey started. I tried all last year to get OT in her terrible school and they would not even consider her eligible for testing. Despite all the private OT and PT she has had for the past 2 years she *easily* qualified for service. We were also able to clarify and tweak a few things with the IEP. Unfortunately because the neuropsych eval was invalid we couldn't address the underlying cause of all the LD's as I had hoped. The special ed teacher confirmed that it would be good to get her retested appropriately because it may mean adding some useful interventions. I asked about an LD parent support group in the area but no one knew of anything. I broke the cardinal rule and started tearing up at the end of the meeting when someone said "She'll be ok" and I just blurted out "No she won't - look at all this..." I still can't believe that all of this is really, truly happening.

Also I had a long phone conversation with the local neuropsych. She really can't understand why no one provided her name earlier but no one at the school meeting knew much about her. She has asked for all the reports to date and will review them before scheduling more testing. She assured me that she would be very cognizant of DD showing any signs anxiety or stress during testing, especially since we already have 2 reports with such bizarre numbers. "It's unusual but you may really have that kind of split going on." The difference is that it seems she would look for an explanation of what the underlying cause might be rather than just presenting the numbers the way the other neuropsych did. She suggested ways I may be able to get the school district to pay for additional testing but I decided not to ask about that today. Maybe at the next meeting.

I am hoping we can get to the bottom of all of this - frankly I think it is a combination of a true learning disability being exacerbated by stress. I am hoping - just hoping mind you - that if we can work on both at the same time we may get somewhere. But we have to work on both parts - not just one. And of course this assumes that there is not a seizure component. I can't even fathom the three together...

I have my network of "spies" working on finding out if this woman is really good. If so then the cost of another set of tests will be only a little more than a trip to Arizona before the cost of testing there. I just want this all to be figured out and I want DD to relax. Just relax. I think only the parents on this board can understand wanting that for your 7 year old...

{another big sigh}

Keep sighing - it's a form of breathing.
Hugs to you - sorry so many road blocks. How soon will Beljan allow you to fly out for a retest. I wouldn't go local after all you have been through - even if the local person is terrific and does everything right, how are you going to know you can trust it?

But - what I mostly want to say is that relaxation is a skill that can be practiced no matter what the underlying situation is. Watch a few 'Dog Whisperer' episodes and practice that calm assertive energy then teach your DD how to do it. It takes a long time to see the results but it's a great life skill.

Love and More Love,
Grinity

One of the issues with psychologists/neuropsychologists is the (relatively) broad range of quality. It truly seems to be hit or miss. There are excellent ones and there are horrendous ones.

There is really no good way of figuring out the quality of the professional except for word of mouth and speaking to someone with experience in the general area of testing.

[/quote]
Keep sighing - it's a form of breathing.
Hugs to you - sorry so many road blocks. How soon will Beljan allow you to fly out for a retest. I wouldn't go local after all you have been through - even if the local person is terrific and does everything right, how are you going to know you can trust it?



Love and More Love,
Grinity [/quote]

I agree with this. Hoping you get some answers for your dd soon.

Latest update:

MRI was normal - no tumors or brain damage from last year's concussion. Yeah!

EEG showed rare epileptic type spike and waves patterns. (Rare referring to frequency not type.)This could mean that she has "a predisposition for partial seizures" or it could mean nothing at all. Since she didn't have any of her "staring" episodes when in the hospital we can't rule out absence seizures. Sometime in the next couple of months we will do an ambulatory EEG to give it another try to pick something up. We will also do a sleep study in case sleep apnea may be at the root of the headaches.

Still no one with any info on the local neuropsych. We are sending Beljan some writing samples. We'll see what he says. I have 6 months before either would retest her so I don't have to decide now. Will keep you posted. As always I am happy to receive any input from those who have been down this road before me.

Pemberley, I think you're doing a great job following every lead and doing what you can for your DD.

Is school willing to try incandescent lighting in her classroom to see if it helps with the migraines? Does the doc think this could matter?

Hang in there,
DeeDee

Agree.
Glad to hear no Brain Damage.
I think sending writing samples is a good step for now.

Smiles,
Grinity

AAARRRGGGHHH Again! Just got a call from the school. We had discussed at our meeting that it has been recommended that dd try wearing a hat and yellow tinted glasses to see if the headaches are reduced. She came home yesterday feeling awful and this morning asked to wear her hat. (A pink sparkly one her grandma bought for just this purpose.) The school nurse said the principal - who was at the meeting last week - asked her to call because "the school has a no hat policy." They want a doctor's note before they will allow her to wear a hat in school.

I let the school nurse know in no uncertain terms that I was NOT happy. This is the first thing this school has done that is not totally cooperative. She just kept repeating "the school has a no hat policy - we need a doctor's note." I said that I would not be calling Arizona and writing a check for a consultation fee just to get a letter about something so simple.

I then left a message for the school social worker telling her that we will reject the IEP and ask for another meeting if this is really an issue. All 10 people at the last meeting can take another hour to discuss this ridiculous issue. I pointed out that dd has been dealing with so many difficulties, so much discomfort and so much pain and has been a good sport about all of it. I really can't believe that a simple accommodation that was discussed at our meeting is really becoming an issue...

IF they really insist on this then I think we will insist that they replace the fluorescents in her classroom with incandescent. Personally I think a hat would be a MUCH simpler solution to try first. But hey what do I know...

FWIW, I've never had to pay a consulting fee to get a doctor to write their orders for the school. In fact, when I've called the doctor to report I was getting flack from the school, the note was faxed within 10 minutes. I hope you experience the same, but Whooeeee, the school nurse seems out of the loop.

Ugghh. Just came from speaking with the school social worker. She is not very bright but is unfortunately the one in charge of dd's "team". She acknowledged that we brought up the hat issue at the meeting last week and no one ever said anything about requiring documentation. We ran into the special ed teacher - who is really really good - and she assured us it was no big deal and would be easily handled. Can she be in charge of dd's team? Nooo it had to be assigned to sw. So I just finished sending off a note rejecting the IEP. All of our solid cooperation is out the window over something so ridiculous. So now I guess we have another 10 person meeting but now I bring an advocate because things will become confrontational. Oh and sw said she can't do anything about the hat recommendation "because the neuropsych eval turned out not to be valid"! What the heck? I informed her that up until now we have been writing checks and doing whatever needed to be done ourselves but if the school chooses to get confrontational over such a ridiculous issue - which affects no one else and costs them nothing - that we will move in the direction of demanding that the school district start paying for these tests and maybe change out the lights in her classroom. Instead of a free, simple accommodation we will instead be looking at accommodations that could cost thousands of dollars.

As I said, I don't think she's very bright...

Pemberley, hang in there. Seems to me you should politely, and very firmly, hold your ground. Hats *are*cheaper than incandescent lights...

DeeDee

Got a nice phone call this morning from dd's teacher apologizing for the whole mess and saying "not a soul in the whole building has a problem with her wearing a hat." According to teacher the entire issue was whether or not we have gotten confirmation of migraines and whether or not she should wear her hat during gym. Teacher says the nurse, who just started at the school last week, totally misunderstood and misrepresented the issue. Not so sure I believe it but at least it looks like my decision to reject the IEP made an impression. I explained that I thought a no cost, simple accommodation that affects no one else would be preferable over the expense of changing lights in the classroom or providing tutors at home because dd can't be taught in the building. It really doesn’t make sense for anyone to try to make an issue out of it. Needless to say she wholeheartedly agreed and will pass along my thoughts. I still can’t understand why SW couldn’t grasp the concept yesterday…

Was called to pick dd up today - another headache - and the nurse wouldn't even make eye contact with me let alone say hello. Apparently I did not make any friends in the nurse's office over this one. She told me over the phone that she did not see any reason for dd to go home - she looked fine - but dd insisted she felt really awful. When I took her to say goodbye to the special ed teacher (we were leaving just as take out would have been starting) the teacher said she could tell just from looking at dd how terrible she felt. The nurse issue could really become a problem As I asked the teacher on the phone this morning when you are dealing with parents who are running around to doctors, getting tests, having their kid in the hospital, etc and the kid feels awful why would the nurse choose THAT parent to give a hard time over something so ridiculous?

So I finally broke down and filled the prescription for Elavil to try to control her headaches. I wanted to avoid it but I just can't have her debilitated by headaches day in and day out. I will start it tonight unless someone or something convinces me in the next few hours that it's a bad idea. Very low dose used for headache prevention not as an antidepressant.

Yes, of course you want to help your daughter deal with the pain of these headaches.


I wanted to ask one question. A while you back you had written:


Any way you can take her out of school for the remainder of the year (e.g. homeschool)? That would buy you time as you investigate the possible seizures, lds, etc. (I know this may not be appealing and/or possible for you or her, but just wanted to throw this out there as an idea.)

If you are using Elavil for headaches, it is still an anti-depressant. Make sure you are keeping track of the possible side effects (especially anxiety and depression), per the recommendation on the drug use facts (not sure what kind you got, but for example, see http://www.webmd.com/drugs/drug-1807-Elavil+Oral.aspx?drugid=1807&drugname=Elavil+Oral).

Whatever you choose, your daughter will feel your love and concern, and we will be thinking of you both. Good luck tonight.

I'm so sorry you're getting attitude from the school nurse. She's a medical professional, so of course, she "knows" your daughter is faking her debilitating headaches.

It's frustrating to have to deal with people like this nurse, but know you're doing the right thing. And we've all been there in one way or another.

Hope you find the right solution for your little one.

My son tried Elavil (Amitriptyline) for his migraine headaches. We were told to try it for a month because it might take that long to start working. Not only did it not work, but that whole month my son was like a zombie. He stopped making jokes and was tired all the time. He decided it was better to live with the headaches than to feel like that. Our migraines are usually triggered by weather changes. I asked family members what worked on their headaches and my sister told me she took an over the counter medication with Ibuprofen and Pseudoephedrine like Advil Cold and Sinus (non-drowsy). It doesn't totally take away the pain but it helps enough that we can function.

My son was getting a migraine just an hour before he had to play the part of Linus in A Charlie Brown Christmas and after taking the Advil Cold and Sinus he was able to do the part well enough that I don't think anyone noticed that he wasn't feeling well.

Thanks all. DD is getting headaches just about every day in school and this new nurse keeps insisting on giving her Tylenol instead of ibuprofen because she is also complaining that her stomach is bothering her. In my world headache and stomach problems go together in migraines - not exactly sure why she won't give the ibuprofen which the docs are saying will work better than Tylenol. We have given her ibuprofen the last 2 days and her headache has cleared in about 30-45 minutes. No headaches (or very, very few) on days she is not in school. I have a call in to the big name neurologist who prescribed the Elavil. Hoping I can get a letter that will clarify things for the nurse. (I will also ask them to include the hat request just to be a good sport. The original suggestion came from an out of state neuropsych we did a phone consult with – not someone I can easily ask for a letter unless I am willing to pay again.)

In any case they are saying that a) if she has 3 or more headaches a month we have a serious problem to address. (Our response - 3 headaches a week would be an improvement) b) She can't take Tylenol or ibuprofen so often or she will get bounce back headaches.

Excedrin usually works for me - nothing is really helping dh these days.

Lori - what dose did your ds use? We are going to start at 5 mg. I have really wanted to avoid this but seriously - a first grader with a daily headache/migraine? As if the ld's, fine motor deficit, anxiety and possible seizure disorder wasn't enough right?

Laurel - I have never really been a big fan of homeschooling but I have seriously considered it with what we have been experiencing. It wouldn't work, though, because dd has so much special ed now. Take out for reading, OT, speech therapy and anxiety along with push in for math. She is also very, very social and would be miserable without the social aspect of school. If the light situation gets totally unbearable I can see a possibility of battling down the road to have some of these services provided at home but right now it's not really an option.

The school has offered to revise the IEP to include that she can wear a hat/sunglasses if needed. I just can't believe such a simple thing became so contentious. I do think I will be hiring an advocate after this experience. I think this has opened the door...

Yes, get a written order for the ibuprofen (and dose). This nurse has no business contravening your instructions, or even giving meds without consulting you. If you give her the written instructions and she doesn't follow them, you go to the principal with a written complaint letter in hand.


After you have all the paperwork in a row, I will be surprised if they don't come around.


I use ami. (still can't spell it) for my migraines, and it's been a godsend. I'd say trust your doc, try it, and see how it goes. It has a cumulative effect (needs to be taken every day) but once it's fully in her system you'll know whether it's working or not.


It sounds like you have a very good sense of what is to be lost/gained in the various tradeoffs that are possible. I imagine your DD knows exactly how hard you are trying to make things feel right for her.


We love having an advocate; not because things are contentious (any more) but because it's one more thoughtful mind working on the problem of educating a complicated child. When things were contentious, I couldn't have lived without her; as it is, we still use her and are grateful.

Hope to hear that things are improving soon...

DeeDee

I don't have any advice for the school, but one of my internet friends has a slightly-older elementary-aged kid with migraines. At the advice of their doctor, they've been supplementing with:
- Vitamin D3: 1000 IU/day.
- Fish oil: 2-4 grams/day.
- Vitamin B2 (riboflavin): 200mg/day
- magnesium: 500mg/day

It's apparently worked really well. Before that, they'd gone through a slew of medications, with mixed success.

Got it. I now know you're not interested in home schooling.

I do think it's great to know about homes schooling in case you want to have something in your back pocket for your final back-up plan. I love having those;) We have, on occasion, ended up resorting to plan b, I mean c, I mean, well, okay, plan g... and sometimes have ended up really happy--albeit surprised:)

Just FYI (hope I am being helpful but sincere apologies if I am beating a dead horse here):

Often state law requires that the school still provide services (e.g. OT) to your child if they are home schooled.

In some states, a child can attend school part of the day (e.g. French and recess and speech therapy) but do the rest of the school day at home.

Some children attend school in the morning (see peers, get services) and go home for the afternoon.

All sorts of combos can be possible; it doesn't have to be an all-or-nothing choice.

Not sure what state you are in--depends on the state. The Home School Legal Defense Association provides a summary of rules for each state.

Anyhow, glad you are getting support/advice from folks who know about the topics of relevance and interest. Good luck, and let us know how it goes.

I really like the look of this protocol:

Both the vitamin D and magnesium will help alter the calcium and magnesium balance in the direction higher of magnesium, which will tend to increase the firing threshold of nerves, making them less irritable with respect to minor stimuli and decreasing the likelihood of triggering vascular spasm. Magnesium is routinely used medically to help relax muscles, dilate peripheral blood vessels, and as an anti-convulsant. Since you are dealing with a possible seizure disorder, this seems to be relevant. The fish oil acts as an anti-inflammatory, decreasing cerebral blood vessel inflammation. None of it is likely to cause side effects at these doses.

Pemberley, have you looked into possible environmental causes of the migraines?

Does the school have a mold issue? Has carpet recently been installed? Do they clean the carpets with noxious chemicals?

It's worth looking into.

I don't remember what the dose was and I threw away the pill bottle. I just remember the neurologist saying it was a low dose. Tylenol did not work well for my son either. Ibuprofen worked better but we were afraid to give it to him so often. His headaches got worse around the time he turned 11 and started puberty. He was getting them almost every day during times of frequent weather changes. He took Tylenol for his migraine the day he was tested by a neuropsychologist in one all day long test. I remember telling the neuropsychologist that some of the test results did not make sense to me and wondered if his migraine might have caused some of the crazy results. She said she didn't think a headache would affect the results that much. She diagnosed him with dyspraxia along with dysgraphia. I agree with the dysgraphia but I have trouble understanding how a kid with a motor learning disability can play piano only during his once a week lessons and still make progress and how he could learn a dance and sing well enough that the group he performed with last year won a talent contest. He had to sit out and watch at some of the rehearsals, so he didn't get as much of the kind of practice that would develop motor memory as the other kids. He had to also use visual memory. It is only on the days when he has headaches or right before getting one that he has trouble. When the piano teacher hears that the weather is changing she doesn't even expect us to show up. It really doesn't do any good for him to try to work through something that requires motor skills when he has a migraine. For some reason his migraines don't affect his speech as much. Even with a migraine he can speak very well and several people told us after his last performance when he had a migraine that they could hear and understand him better than most of the other kids in the theatre group. I have trouble talking when I have migraines. I still read to him a lot and I sometimes say the wrong word or pronounce words wrong and it only happens when I have a migraine or if I am about to get one. I didn't talk very much as a child because I had anxiety about possibly saying something wrong and I hated reading out loud for the same reason, but I did very well on written tests and was always in the highest reading group even though I was always one of the youngest kids in my classes.

My son also has more than one disability to deal with and it is hard to watch kids going through so much and not being able to help with the pain. My son worries about taking pain medication since a family friend died from an accidental overdose of pain medication. He also knows about possible side effects because he looks up medical information on the internet.

Since we homeschool it is easier for us to work around the pain. I don't think my son could handle going to our public school.

Yesterday, my husband took off a day of work to go with us to our state capitol for homeschool day. My husband and I talked to our state representative about the problems we had at our public school and why we had to homeschool and why we needed to have the freedom to homeschool our outside-the-box child without worrying about government regulation. We told her how my son started kindergarten at 5 with a May birthday already reading a a 5th grade level but that his disabilities made fine motor tasks difficult. My son could not get OT or PT in kindergarten for his disabilities because he was not failing and then later he ended up with disabilities that cause chronic pain. She didn't say anything about changing the state laws so that kids like mine could get OT and an appropriate education. She just said she agreed that homeschooling was a good thing and she supported our right to homeschool.

 

Well, OT and the rest of the services your son needs would cost money to provide. The rest... You homeschool and still pay taxes. Neat benefit to the state, right?

Sorry, feeling cynical today.

Yay to the OP for the hat victory.

+1 everyone about the nurse. She has no business modifying drug protocols for your daughter. You need a doctor's letter, and then escalate if she still won't follow instructions.

Advocate, good idea. It will keep them on their toes.

Quick update:

DD went to the nurse with a headache again today but this time asked to go back to class after about 20 minutes. (Still got Tylenol...)

DH has decided to try the combo Alexsmom suggested! Aculady's explanation makes so much sense. Now to run to the healthfood store to get everything on the list. Crossing my fingers for him - he's been in a really awful migraine cycle lately and nothing is helping him.

Thanks forumites!

Have you talked to the Principal about this woman giving her tylenol every day? I have to seriously repress the urge to come through the computer and find this nurse and slap her upside the head for you.

Have you tried feverfew for migraines? I know some adults who've used it successfully, but I'm not sure it's suitable for children.

I'm sending your dd a big hug Pemberley! I have migraines occasionally and even as an adult they are beyond bearable so I can't imagine what it must be like for a child to have to deal with them. This is lame advice and perhaps something you've already tried, but I find drinking a Coke helps mine just a tiny bit because the caffeine opens up the blood vessels that are constricting in the brain during the headache.

Re the school nurse, I would *write* an email and send it to her every single darned time something happens that is an issue and keep a copy of all the emails. We had quite a struggle with our school nurse when our dd (seizures, food allergies) was in early elementary - when our dd had allergic reactions at school and went to see the nurse she was turned away and sent back to class and told to come back 20 minutes later "if she still had hives"... of course she never went back - she hated the nurse! In first grade dd had a seizure at her desk and passed out - her teacher panicked when she couldn't wake her up and ran screaming from the room to get the security guard to come in and try to wake her up, she also couldn't wake her up (for anyone reading who's kid has never had a seizure, this is all really ok, it's what happens to my dd after a seizure and she wakes up about 20 minutes later)... anyway... eventually the school nurse called me just to let me know "everything's ok but your dd fell asleep in class and maybe you should come get her". You know, as a mom of a kid with seizures, I didn't panic and wasn't really even concerned, was definitely not going to rumble into the school throwing out accusations or anything - and I was met at the door to my dd's classroom by the nurse who made a huge point of telling me "Your dd is fine. There is nothing wrong. She did NOT have a seizure. She fell asleep at her desk. She's FINE. She did not have a seizure." (repeat on and on and on). I know from what everyone else told me - she had a seizure. I know from what dd told me - she remembered having her aura (tingly arms and legs and then going to sleep). I wasn't worried about it. Why on earth did the nurse so adamantly deny it? Maybe she didn't want to have to fill out a report, maybe she was worried that we might say something that happened at school had caused it - who knows. It was ridiculous. Another time she had a bad allergic reaction with severe stomach pain when dh was already on his way to school to drive on a class field trip. Once when the nurse was out I got a call from the school telling me the TA had brought dd to the office and she was lying on the floor screaming in pain and what should they do. I told them to give her her antihistamine ASAP and if it didn't help, give her her epipen - all written down on her IHP that was on file at the school (meds and symptoms). School called back and told me they couldn't do it because she really wasn't having an allergic reaction. DH showed up about that same time and just gave her the meds himself and she was fine - which meant, um, yes, it was an allergic reaction. Imagine what would have happened if it was a severe anaphylactic reaction?

Oops... I'm starting to rant about my dd's school nurse instead of writing anything supportive or helpful for you and your dd - sorry about that! Clearly I have some issues to let go of - lol.

polarbear

Wow polarbear - your story reminds me that things can be soooo much worse. Actually a mom I ran into from dd's terrible school last year is suing because the nurse refused to administer an epipen in the midst of an anaphylactic response. (Kindergartener with a peanut allergy was given a peanut candy as a reward by a teacher.) Despite clearly written doctor's orders the nurse flat refused to do it. Mom ran to school, administered epipen and called pediatrician who had an ambulance meet them enroute to the hospital. The kid is ok but really? Her son clearly could have died...

Anyway I am sure we will be able to address this with the nurse it just will take a bit of time. I still haven't heard back from neurologist's office but will try them again this afternoon. Once we have a clearly written note and others familiar with dd step in to help explain how to read her happy demeanor I assume all will be ok. Well, maybe too optimistic but I have to hope. The nurse was actually pleasant to me on the phone when she called and I think dd asking to go back to class is a good sign.

Only one more day to the weekend when she will hopefully be headache free. Then one more week until February break when she will hopefully be headache free. By then maybe the Elavil will have kicked in.

We have tried feverfew but I don't know how consistent dh was with taking it. I am hoping if he gets miserable enough he will stick with the supplements. Well, he's definitely miserable enough. Maybe I can get dd to help with this - she would love to remind daddy to take his pills when she has to take her Elavil. Hey... that's a really good idea! I love when I come up with great ideas as I sit here typing

The state I live in is 49th in per pupil spending and our state constitution mandates a balanced budget each year. There is no money to provide services for smart kids with disabilities like mine who can find a way to make it on their own without government help. I used to be really angry about having to pay taxes so all the other kids could get an appropriate education in our public school until I realized that so many of them were probably not getting the education their parents thought they were getting. My son's cousin made straight A's and got a football scholarship but struggled academically because he was not adequately prepared for college level work.

At home, my son spent his elementary years reading classic books and books on economics, history, science, psychology and sociology. When he was interested in neuroscience he studied using free online sources. He did not get OT but he got lead roles in musical theatre which helped him feel comfortable speaking and acting in front of an audience and he learned that the show must go on even when you don't feel well. He learned to work as part of a team with other cast members and to improvise when something didn't go as planned.

If he had been in our public school he would have been loaded down with homework that would have taken him much longer to do because of his dysgraphia. He would not have had time to do musical theatre or piano. He learned much more at home than they would have taught him at our public school.

I forgot to add that my son also drinks a Coke with his ibuprofen/pseudofed. His pediatrician suggested taking caffeine. I usually drink a cup of coffee when I have a headache and it helps.

Depending on the person, caffeine can lead to wicked rebound headaches. Depends on the individual's tolerance...

DeeDee

I dropped all caffeine from my diet so I can use it when needed to help with a migraine. Very helpful.

Got a message from dd's teacher that she tried to talk to the nurse about the ibuprofen but apparently nurse has her heels dug in. If dd mentions her stomach along with her head she will not give her ibuprofen. Hopefully letter from the neurologist will help but at this point I'm kinda doubting it... This may get interesting.

Anyway, back to the original purpose of the thread - neuropsych evals. I heard back about the writing samples I sent - "The writing obviously is dysgraphic and the spelling looks dyslexic."

Soooo.... on one hand this feels like more info than I got from the original report. On the other hand - do I need another report? I feel like I knew that much going in. Can someone please explain - very... slowly... and... clearly... - what I should be hoping to get from another report and what I will then be able to do with the information?

DD is already in pullout for reading and OT. How can I expect info from a neuropsych to change or improve this.

Thanks!

Formal diagnosis of dyslexia and disorder of written expression could get dd better accommodations, such as a scribe or use of voice recognition software or keyboard with spell-check and use of a reader or screen-reading software on tests and assignments, extended time for writing assignments, decreased volume of written work and reduced copying requirements, and other supports that might make a real difference in her ability to learn and perform at the level she is intellectually capable of without having to use all of her mental energy just to manage the basic processes of reading and writing.

ETA: Sometimes schools and other professionals will present accommodations and rehabilitative therapies as an either/or choice, if they were mutually exclusive. I think that it is important to give kids with disabilities a way to get around them while you continue to work on rehabilitating the underlying issues, and that you don't make them give up the accommodations just because they learn some strategies to help them function better, unless it is clear that the accommodations are really no longer helpful. You wouldn't deny a kid with functionally impaired legs crutches just because the eventual goal was to get them to be able to walk unassisted, and you wouldn't tell them that they couldn't leave the house until they could walk there on their own...and you wouldn't necessarily expect that even after that child learned to walk, that they would be able to successfully compete in a marathon without using some assistive technology, even if they could manage to get around the grocery store all right without it.

Hi Pemberley,

I don't know much about dysgraphia, though I suspect my DS9 is an undiagnosed dysgraphic (amid his other issues). I don't know what (if any) recommended treatments for dysgraphia look like, though I would be delighted to find out.

We had to do serious remediation to get him to grade level in K-1; we did this as part of a course of behavior therapy. The therapist would have him do speed drills, and he'd get rewarded (at first) for keeping his pencil grip correct, then (later) for copying more and more letters per minute. This was basically just a fluency exercise. It worked very nicely. Some of his process is still a little odd (he goes around the wrong way for o, for instance) but it's functional and he doesn't seem to be held up much by the writing process.

I tell you this only slightly relevant story because I don't know of any OTs who would recommend this style of remediation; we got it "off label" so to speak from someone whom we hired mainly to fix other problems. We have found that sometimes the regular channels don't get us what we need, but we can get it done another way.

So in your shoes I'd evaluate this way: Are you seeing progress as a result of the school OT? What's being worked on there? Do you think their strategies are useful for your DD? Are you seeing improvement in writing (process and product) over time?

If you think what the school is doing is working for your DD, then it's okay to cool your heels and watch the progress, supporting from home as needed. If you think she needs more/different therapy, then it's back on you to figure out what that is. In that case, either you could get the written report and talk the school into trying something different, or you could get a verbal recommendation (or the report) and just pursue the recommended therapy outside of school.

DeeDee

ETA: listen to Aculady, though, she knows more than I do.

A prescription for ibuprofen should take care of this. I think the nursing board would have something rather strong to say to a nurse who refused to give medication as prescribed and instead substituted another medication with a different action and the potential for serious liver toxicity on her own authority.

The spelling could "look" dyslexic for different reasons - one could be dyslexia, one could be dysgraphia (it's *very* common for kids with dysgraphia to have challenges with spelling while writing), and it could be something else - my youngest dd has challenges with spelling while writing that are due to a weakness in her associative memory ability.


I don't know that you need another eval+report, but it sounds like there may be additional info in the reports/evals you already have that would be helpful to understand. Has your dd been screened for dyslexia? Have you had any concerns about her reading comprehension or fluency? It would probably help to know if the spelling challenge is just related to dysgraphia or if there is a component of dyslexia also present. There are probably some tests that she's already had through her neuropsych eval that would help you determine whether or not she's dyslexic... otoh... I can't remember for sure - has she actually had a neuropsych eval? I'm sorry - this thread is getting so long I don't have time to go back and re-read at the moment! I'm also not an expert at dyslexia, so I can't tell you exactly which tests they are, but all three of my kids have been suspected of possibly having dyslexia but don't, and part of the way that was determined was through the results of their IQ testing combined with some other types of screening and neuropsych testing.

I'm going to go back and re-read the original post and your updates since then and then give some thought to what you might get out of a new report - I vaguely remember that dd's original testing had a huge discrepancy and then later there was a question about that split. Realistically, whichever it is, the primary thing I'd be wanting to address right now is - how is she doing in school, and does she need something more? If she needs more, do you have the data you need to support your decisions re what to do next?


If she's dyslexic, the approach to learning to read might need to be altered. If she's dysgraphic and she's in OT for handwriting, you might want to rethink, should she be learning to type instead? It helps just to know what's driving the reasons for the need for extra help with academics and OT. Also helps detemine what type of accommodations are needed in the classroom. But again - you might already have a lot of the info you need.

polarbear

This is getting absolutely ridiculous! Got a call this morning that DD was at the nurse with a headache again. DH got to the phone before me and told her that she needed to give ibuprofen then send her back to class. Nurse said since DD only said headache she would give ibuprofen but would not give it if she said her stomach hurt too.

Just got another call - this time from district's chief nurse (who is spending time in DD's school since nurse is new and before that we had "floaters".) She was upset because I had let the teacher know about starting the Elavil instead of communicating medical information directly to the nurse. I explained that we have been having a terrible time communicating with the new nurse, who is insisting on giving DD Tylenol instead of the ibuprofen which helps more, and have found it easier to communicate with the teacher and allow her to advocate for DD. Head nurse agrees with other nurse and would not be willing to administer ibuprofen either.

This is twice this week that I have lost it with the school and both times the dang nurses have been the cause. I told her that I spoke with neurologist and they are sending a letter clarifying the order. Well, then we are going to have to get a totally new set of orders since the current order is from local pediatrician. So does this mean DD won't get anything for her headache because I arranged for a letter from the specialist to supposedly clarify things? Well now that is going to depend on what the letter says.

This is when I kind of lost it a bit... I said ALL of this was discussed in the meeting last week. The original order for Tylenol was replaced with an order for ibuprofen when we found out in the hospital that it was more effective. Temp/floater nurse and I discussed and agreed that we would leave the Tylenol there in case it was needed but AT THE MEETING agreed that if I needed to medicate DD before school it would be with Tylenol since they would be administering only ibuprofen in school. Apparently none of this matters! Apparently I - who have no medical background whatsoever - am somehow responsible for knowing that when they changed nurses none of the previous conversations I had would have any meaning. Jeeeeeshhhhh! We had even talked about whether or not DD could have abdominal migraines, but now the stomach pain is telling these nurses she doesn't actually have migraines at all...

So apparently if I had not left the Tylenol they would have either not treated DD for her headaches or just gone ahead and used the ibuprofen but I couldn't really tell which one it is. Now she won't get anything until the school nurse talks to our pediatrician. So why the heck am I getting the letter from the neurologist? Am I just losing my mind here or does this make sense to some of you with more experience than me?

I left a message for a highly recommended advocate. I think the time has definitely come. Hopefully he will be able to help navigate this mess as well as clarify things with the neuropsych eval.

Sorry for the rant... I am just sooooo frustrated!

FYI: Pediatrician is sending a letter which will make clear that DD is to get *ibuprofen* for headache or headache/stomachache. I will remove the Tylenol from the school this afternoon. (She will also mention the hat nonsense...)

I also have an appointment with the advocate on Monday afternoon. He will review all the testing so far and let me know what he thinks. He had good things to say about local neuropsych I spoke to and thinks we can get the district to pay for all the testing.

Put a fork in me... I'm done...

Scan the letter before dropping it off wherever you meant to (nurse's office?), and send an email summarizing the doctor's orders, scan attached, to the nurse, copied to the head nurse, teacher (or teachers, if your daughter goes to other classrooms), and as many people in admin as appropriate (principal for sure, vice principals if you have them, school secretaries if they are the gatekeepers to the nurse's office...).

Have extra copies to attach to IEP once you get there.

If you feel annoyed enough (might want to wait until after talking with the advocate/checking to see if the nurse behaves differently) you could send a letter to the super, cc'd to the school board, expressing your worries about nursing staff that think that their 5mn evaluation of a child they don't know well should trump written doctors' orders. People like this kill children

http://abcnews.go.com/Health/Allerg...lergic-reaction-school/story?id=15295949

Good grief! I have no (useful/legal/non-violent) advise, but I am very hopeful that at some point one of these damned nurses will pull their heads out of their rear ends and get with the program!

Pemberley:

I've been following your saga and I have to say I am shocked by the behavior of the school nurses. As SiaSL recommended, document this process. Can I recommend you draft a letter to the principal and cc the classroom teacher & the superintendent? It frightens me that these so called nurses are second guessing the parents and two specialists.

I'm still confused as to why they won't give ibuprofen if her stomach is upset. Vomiting often goes along with migraines.