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/AllergiesFo...ory?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!