Gifted Issues Discussion homepage Forums Twice Exceptional Dysgraphia? PANDAS? Or just gifted and intense?

Hi, my ds (6.5) is really struggling this year...just barely hanging on in the first grade. I see lots of people posting their kids' scores and getting interesting responses, so maybe someone can help!

He basically will not write. He CAN write-- to fill in one-word responses, spelling tests, etc-- but when faced with a blank page and asked to express himself, he completely flips out. I mean he becomes very anxious and begs to do anything else. It turns out he has not filled out his in-class "reading log" (which requires him to answer long comprehension questions) since SEPTEMBER-- the rest of the class dutifully fills in the pages but he ignores the expectation and just keeps reading whatever he wants, apparently. He is supposed to fill in a weekend journal each week, and his entries generally read someone like, "I played. It was fun."

Anyway, here are his scores:
WISC:
VCI 148
PRI 145
WMI 120
PSI 115
FSIQ 144
(I did not get the GAI but calculated it myself, it was 158-- not sure if that's right.)

WIAT:
Word reading 160
Reading comprehension 135
Pseudoword decoding 148
reading composite 160

numerical operations 116
math reasoning 133
mathematical composite 130

spelling 115
written expression 118
written language composite 119

listening comprehension 142
oral expression 160
oral language composite 160

wiat composite score 149

To put this another way, he reads at grade level >12.9 but spells at grade level 1.8, written expression 2.8.


Initially, the teacher thought he had ADHD, but I resisted. It did not quite add up... I didn't buy it.

In Oct/Nov he had 4 different cases of strep, and his behavior grew more and more erratic (jumpy, anxious, nonattentive, defiant, glassy-eyed)-- but then, when he was given the right antibiotic (in early December), it was like all the behavior problems suddenly, immediately disappeared. His teacher noticed it to. When he went off the antibiotic, the strep came back and so did the behaviors... then, on the antibiotic, it all went away again. Now he has a diagnosis of PANDAS-- which is an autoimmune disorders in which the body overproduces strep antibodies, which in turn attack the basal ganglia region of the brain. PANDAS could cause all the strange behavior. Another symptom is a deterioration of writing ability. And sometimes numerical operations.

And meanwhile, though his behavior is MUCH better, he still refuses to write. He is about to flunk first grade.

Raising this child is really wearing me out.

Anyone have an opinion??? Thanks!

Hi Bronxmom:

BK mom here, also with a DS who doesn't like to write.

There can be many different reasons for this behavior. I think you should ask for an evaluation for dysgraphia or a full-blown neuropsych exam. If DS is in public school, you can just address it to the Committee on Special Education, care of DS's school.

On the other hand, if it isn't dysgraphia, or not related to PANDAS, there are lots of other reasons kids don't write. I think it is common for GT young kids to resist writing. They can rarely keep up with their train of thought while writing, so it becomes very frustrating. For my DS, now in 4th, the teacher allows him to dictate ALL his homework, including the reading journal. It has made a big difference. He then spell checks it and checks his reading level using that tool. That has been a motivator for him to write more complex sentences, because he wants to increase his score.

Also, there's something about the level of maturity of the child. My DS is only just now getting the idea of writing for a reader who isn't him. DS's school uses the Writers Workshop model where there is a real focus on early story writing, and his stories would be practically incomprehensible, because he used so few words and sentences and didn't explain anything about characters. Characters would have names, but no explanation of who they were or very much detail on what they were doing.

Also, because of that maturity issue, he wasn't thinking about writing something the teacher would like to see or to show her that he knew the material being covered. For example, the mini-lesson might have been about tags to use instead of "said," but he wouldn't bother to use any.

Finally, he also tends to freak out when he has to organize sentences into something bigger. Our OT recommended using graphical organizers and that did help somewhat. Filling in the forms helped him organize his thoughts. It was still frustrating because it involved handwriting. Perhaps you could do this with him and write down what he says IN the graphical organizer.

Finally, for performing what the school wants -- i.e. boring and useless (for child) reading logs -- We told DS that the teacher thought these sorts of things were important, she needs to know what and how much you are reading, it is part of her job, and it is showing disrespect to her not to do this and turn it in.

We got letters home that DS was not meeting grade level standards in writing/grammar/spelling for two years in a row. He still got promoted to 3rd and 4th grade. I think in NYC public schools at first grade they are most concerned about reading level and if your child has a high reading level, he will get promoted. They don;t even seem as concerned with math, at least not until end of 2nd grade. For first grade, they do a predictive test you can ask your DS's teacher about, called the E-CLAS, I think, that pretty much is their main measurement of progress, and it is ONLY on reading/comprehension, as far as I know.

Finally, if you are having power struggles, or tears and more over the hefty homework, I recommend Why Bright Children Get Bad Grades by Sylvia Rimm. Great advice that has helped us somewhat.

GL,

bk1

Hi, Bronxmom,

First of all, welcome. With those scores, your son meets the DYS criteria and I highly recommend you apply. My DS had similar handwriting issues - caused by fine motor issues, poor environment, and more. He just despised writing. Now he's in third grade, we're homeschooling, and it's starting to come together. Basically, I just took the pressure off and went back to having him write less so that he could work on speed and fluidity in workbooks, science notebooks, etc. Seems to be working. And I let him dictate when he can't even get started, and then copy it over in his handwriting.

I'd say apply to DYS, and get some help from the experts.

Hi BronxMom,
i don't know anything about PANDAS, but I do know that raising a kid with scores like yours can be E-X-H-A-U-S-T-I-N-G! But this PANDAs thing sounds very scary? Are there internet sites for that?

My son was a 'reluctant' writer until age 9, when his typing skills finally 'came it' and he was able to type at 100 wpm. After that he became a wonderful (although still strange) writer. Folks who don't like his style feel that if they were reading one of his research papers aloud, that they would never have a chance to catch their breath. I was stunned reading one of his papers at the sheer 'density' of the information that was presented. I found it dazzeling.

In 1st and 2nd grade it was exactly as you described. Short answers, sentence fragments, stick figures when he had to draw. The teachers were always writing ' Show More Details!' on his paper and wanting him to use a graphical organizer. He still is reluctant to use an outline or graphical organizer - but now he can juggle the whole thing in his head. Seriously, my estimate is that it would require a paper over 20 pages to get him to actually NEED an outline.

My advice would be to gently hothouse keyboard technique, try to get accomidation so he can dictate, or make powerpoint presentations or video blog entries, and have faith. I would work on the handwriting itself a bit with the 'handwriting without tears' workbooks. Basically the writing will take care of itself. I don't care if he flunks first grade and never writes a whole sentence in the classroom all year and all next year. His miserable life in school worries me much more. You want him to develop self esteem - the way that happens is if a child eventually overcomes a challenge that is challenging in their view. You want him to develop a work ethic. That also demands that he work at his 'readiness level.'

The phrase 'Asynchronous Development' really seemed to fit my son. The writing will come eventually. But being in a classroom situation that makes him miserable can cause harm that is very tricky to reverse. 1st grade is supposed to be fun. It isn't normal to 'hate life' or 'hate school' at this stage.

Love and More Love,
Grinity

Just want to let you know you are not alone!

DS7 has similar score in a few area of WISC IV. Last year in KG, he fought so hard with the teacher and us. He would sit in class for journal writing and would not write anything for 45 minutes. I was volunteering and the teacher showed me. He was the best reader in class and the worst writer.

This year in 1st grade, his teacher complained again about him not writing. So we sat him down once again and told him he could not avoid writing in his life. DS7 was stubborn, but we persuaded him that if he didn't start writing, he will have a serious problem later on.

DS has caught up a lot since the beginning of this year. He is not the best in terms of handwriting. I can't ask for more. One time just a few weeks ago, his handwriting was so bad that it looked like a paragraph of letters. The process is painful. We are still going through it. I just want to let you know you are not alone and hopefully there is light in the other end of the tunnel for you.

Cindi,
Not all GT kids are stubborn - but the ones who are stubborn are REALLY stubborn. Also a lot more of them feel 'up against the wall' in the school environment.

I think I have an idea for you. The 'handwriting without tears' has a thing that is aimed at OTs called 'The Print Tool'

The print tool is a way to turn 'ugly writing' into an actual score. I talked DS into being my first 'test subject' on the pretext that I wanted to turn this into a side business. Once he saw that 'pretty handwriting' had actual criteria, that translated into a score, he got the picture. He was 10 at the time, so it might be 'too early.'

At age 7, DS12 fought us so much on things like - 'leave a space between words that is twice as big as the space between regular letters,' and 'Leave a margin on both sides of the page.' But when he was 10, spending about 30 minutes with the actual scoring sheet was enough to convinse him that 'these really are the rules.'

DS12 didn't handwrite at all in 6th grade, and mostly used his laptop in 7th grade, but towards the end of last year, he started showing me his 'classroom notes' and they were so beautiful! So much for the idea that one has to practice handwriting to improve!

Anyway - good job convinsing your DS that it was in his best interests to practic writing. I think that some of these great readers set the bar so high that they become discouraged and can't bear to even try.

Smiles,
Grinity

My ds is similar in the writing avoidance (you inspired me to start a thread, I didn't want to hijack yours!), but we don't have the health issues ...

I think Grinity's advice is spot-on, and maybe I should have re-read it! Will they *really* make him repeat first grade if his writing isn't better? What are the odds that his writing problems are actually related to PANDAS? Were there writing issues before he got sick, or do they seem sudden-onset?

It may just be a maturity issue and he'll grow past it, as the ladies have told in their kids ... I don't know, since I'm in the same boat!

Bronxmom - welcome! WOW on those scores. I definitely second whomever said to apply to DYS!

My friend had a son who sounds a bit like yours as far as writing. He's now being homeschooled for 3rd grade, and he writes very well! Things can get better.

IMHO I think schools focus on writing much too early and it's developmentally inappropriate for many kids, especially boys from the reading I've done on the subject.

I would think your DS needs some time to get over his illness and be further removed from the pressure he likely felt to write when he was ill and no one knew what the issues were.

I can't imagine they would fail him.

The best typing game I've seen on the web:
http://www.bbc.co.uk/schools/typing/

My ds hated to write too, perfectionism, maybe. Sorry to hear your ds is struggling/struggled with this illness that seems to have pushed him away from area where he might really excel.
Very big welcome, and hugs!!

One thing that was sort of a breakthrough for ds was a weekly writing 'prompt' that the teacher would send home. It had a subject and a question to sort of get the ball rolling at least. A huge blank page can be a bit much for anyone!
Then on the other end of the spectrum ds started attaching too much significance to the prompt and it was sort of stiffling his creative juices. I explained to him that he could just write about whatever the prompt brought to mind, he didn't have to necessarily write 'what he thought the teacher wanted'. Really, at the point we were at, I would rather he write something fun and interesting and get an F instead of write the minimum number of sentences with no joy at all.
He finally hit a happy medium; he is still a minimalist but will have a beginning-middle-end thing going most assignments. (Unfortunately this year it is harder for me to tell since most writing is done at school. )

Also, about failing 1st - you might want to check with the teach if you are just assuming that is the case. You might be surprised by what passes as passing...maybe it'll just take a summer school class to make things up, especially considering he's been verifiably sick, poor guy
I think in this case it is a good thing that schools usually recognize that a child's self esteem sometimes trumps 'showing mastery' of a subject before moving on. Hopefully you will find some flexibility that will work for your ds. You are probably already meeting with the school, but if not, you might want to get that ball rolling.

Hi all, thanks for your comments!

About DYS, we did join-- I got the testing done not for this purpose but because I was worried and teacher was pressuring me (in fact the testing was done at the height of the PANDAS crisis-- he came out of the WISC with a 102 fever, so who knows if that affected his scores)-- but when I saw the scores I did the DYS application, and now I am waiting to start talking to them. But I don't want to be an overwhelming PITA from the very beginning! How much help can I hope for from them? Basically I am trying to decide whether to home school, or to find another school.

I will definitely get "handwriting w/o tears" as this has been recommended more than once.

My instinct is to just let him be a little on the writing... because at this point all the pressure seems to be generating a real phobia. So I want to let it go completely for a little while, then come back to it calmly. My husband (not his father) vehemently disagrees and of course thinks I cater to him way too much. And the teacher also doesn't agree, so we are sending mixed messages, which he reads loud and clear. And the assignments really ARE stupid... he knows I agree with him.

I don't really think they will FLUNK him, but this is a school in NYC which people basically chop each others' arms off to get into...if I voluntarily give up a spot it will probably make the news. I think the school could make our lives miserable until I decide to withdraw him.

I'm sure others have been disappointed by a "gifted" school which seems to have no idea how to help a truly gifted child.

Oh boy... homeschooling, here we come! The problem is that my husband might not support me, I am also working (p/t time, evenings, so it's doable) and have a new baby. Also this child is EXTREMELY stubborn, so...

About the test scores... is a difference of 115 PSI/158 GAI a red flag, or just normal for gifted kids? What about the difference between 160 in reading and language comprehension vs. 115 in spelling and numerical operations?

Also, I believe he's had this PANDAS since he was a toddler and first had strep... and this has been the cause of at least some of our difficulty... since his behavioral problems have waxed and waned over the months, confusing everyone. His handwriting HAS deteriorated a little this year, or did it never really develop? He shows a lot of signs of dysgraphia that have been mentioned earlier... mixing upper and lower case... poor spacing, etc.

Here is a link to a site about PANDAS:
http://www.adhd.com.au/PANDAS.htm
Interestingly, this seems to afflict precocious children mostly, especially early talkers.

Thanks again... baby needs me!

Don't worry about asking for help from DITD--that's the ENTIRE REASON they exist! Ask for help! Seriously!

How much help can they give? Well, it depends. They can offer advice, put you in touch with experts, write letters, make suggestions about advocacy strategies, etc. If you're thinking about homeschooling, they can ask questions and help you walk through the decision so that you're happy with the decision you make.

It's worth a phone call! Honest! And you can even call to say "I'm not sure what I need from you" and they can help you figure it out.

We pulled our DYS DS7 out of a "good school" (Not NY reputation "good," but still, one of the best in our area) to homeschool. That doesn't mean HSing is the right choice for you, but it does mean that sometimes it's the right call. The flexibility is very nice to have when it comes to HG+ kids, that's for sure. But there are other ways to make it work if you are willing to advocate.

My DYS consultant did warn me that sometimes (not always!) private schools (even private GT schools) can be harder to work with to get the education an HG+ child needs because they have a product to sell--like any business!--and they don't always take kindly to being asked to adapt it. In GT schools, all their kids truly ARE GT! So if they don't recognize asynchronous development and LOGS, it can be a terrible fit for some HG+ kids. Fortunately, many GT schools do recognize these factors, thank goodness, but as always, it all comes down to the individual school and even the individual teacher.

If you are in one of these not-so-good situations for your child, it doesn't matter how "good" the school is. You have to do what's best for your child, whatever that might be.

As for the PSI, I have a child with very similar scores. We do find that it is a "bottleneck" to his learning. That is, it's not really a learning disability, as that PSI score is still above average. But it does affect the way my DS7 learns and the way he must be taught. I often say that he is "deep, but not fast," and frankly, the stereotype of a GT kid is one who is fast. That means not everyone will recognize just how GT your child is. With my son, before we bagan homeschooling, teachers would comment on the fact that he didn't even finish the work they gave him, not realizing that he really needs extra time to do things. I feared that for that reason, grade-skipping or even subject advancement might not work well.

We had a dismal HSing math co-op experience (for 9-12yos) with the mom of an HG+ child who ignored DS7 when he spoke because he wasn't fast. I had to pull him out. OTOH, he is now taking a HSing math class with 9-12yos with a teacher who totally gets him, and is near the top of the class. She told me "He is in the exact right spot." So as I say, the teacher makes all the difference.

So is the PSI a red flag? Not exactly. But it could have a significant effect on how well he can fit into educational situations.

I think of it as having a 10+yo thinker who works at the speed of a normal 7yo. That means in some ways he's going to seem even slower than he is because he has so much in his head to process!

HTH! Keep talking if you need more...

And if you want to discuss the pros and cons of HSing, just say the word. Many of us here have been where you are and we're happy to help people who are considering HSing without pushing. I'm an "emergency HSer" myself, so I don't push it on anyone. Promise!

I agree.

thanks, Kriston-- do you consider your son "2E"?

I'll come back when I want to talk more about homeschooling. I do have concerns-- I'm not sure how it will work for the rest of my family; my son is extremely extroverted so I am afraid it will damage him; also he can be infuriating, and it certainly is not productive to keep him home and yell at him. So I need to be sure I am strong enough to do this...

It's just such a shame that he seems to be losing his passion for learning-- at age 6!

Does anyone know other kids' typing websites? Maybe a site where they are giving a picture and asked to write a story to go with it or something? Some kind of kids' word processing, maybe? We tried the typing website someone suggested earlier, but he didn't understand why he was typing random letters...

My son also has a simlar 'normal processing speed' - PG everything else. I call it a 'Bottleneck' instead of a LD, but in certian circumstances, I did think of his as 2E. Now that he's a fast typist, it doesn't come up, but he gets 'tired and worn out' much much faster than 'seems normal' to me. So maybe that bottleneck is still there.

I would definitly ask on the Davidson email lists if anyone else has experience with PANDAS and join the homeschool list and ask about 'reluctant spouces.'

Sylvia Rimm is one of their consultants who has done phone call consults about the 'triangle dynamics' in families. We aren't a blended family, but with our gifted OEs, we've had plenty of experience with this.

Bronxmom, is your son's bio-father also in the equation?

Love and More Love,
Grinity

Kriston wrote:


I like that explanation!!!!


On the subject of PANDAS. A neighbor's DD developed OCD after having strep a few times in school. I emailed her the info on PANDAS as she has never mentioned that to me.

Grinity wrote:


What do you mean by "he gets tied and worn out?" The psych said something to me about DS mentally fatiguing quickly. His PSI came out at 109. I must say I observed this when I brought him home to HS this year. He has built up stamina though. He had a lot of stamina before going to school so I'm not in his case if this was learned behavior or not.

Welcome aboard!!

You will find if you spend any time here that issues with writing comes up often. Many of us with GT kids notice that the writing skills tend to "lag" behind everything else. When I've questioned my DS6 about it, he claims that his pencil can't keep up with his head. He gets frustrated and quits.
Several people have recommended keyboarding and I wholeheartedly agree. We used a kid friendly program to get started but I'll have to look it up and get back to you, because I can't remember what it was called.

DS12 just seems to 'need' much more time without anything scheduled then I expect. He also hates having'nothing to do. Go figure.

Hi Bronxmom,

We haven't yet had DS7 IQ/Achievement tested -- scheduled for this summer, but we have had a similar experience with Strep, although it's been a year or so since he had it.

He had Strep several times beginning at about age 3. His only symptoms for Strep are: 1) strange behavior -- getting more anxious/upset than normal about unusual things, 2) a headache that lasts for about an hour, 3) a stomach ache that lasts for maybe one meal. That's it. He's had Strep several times, and each time, when the Dr's office would ask his symptoms, they'd balk when I told them, and then I'd insist that we just need to get him tested, and sure enough he'd be positive.

He's a fairly anxious kid to begin with, but the Strep made him REALLY anxious.

PANDAS has never been suggested to us before, although I recall seeing it online when we were going through the rounds of Strep (and the regular antibiotics don't work on my kids either).

His behavior is back to "normal" once the Strep goes away and he doesn't seem to have been permanently changed. We do have the same issue with writing as you're describing, but I've just chalked that up to a lag in that part of development.

Glad to have you in the forum!

Hi Bronxmom, (Wish I had the time to edit this down!)
I have a son with PANDAS. After experiencing seizures with the presence of strep throat, he is now on antibiotics twice a day. He was diagnosed with PANDAS at about 10 years old, although our pediatrician caught it at 4yo as an affect connected with strep. We didn't get to treat it aggressively until later.

Anyway, my son just turned 16. He did have trouble writing and even walking after each seizure, but other than soon after the seizures, he never gave me any attitude or behavior problems.
With the weak tone in his hands, I had him dictate outlines to me, then later he would write the main ideas, and I'd write his more detailed ideas down. Later, the main ideas turned into sentences that he wrote. Eventually, the other details were added at each level of outline.
BTW, I had an IEP for him through PANDAS, to allow this. I'd advise you to do the same for the reading log and journal work. Have him start with just an outline for the journal. Tell him (if the teacher okays this) that you and the teacher made another choice for him to make. He can do it like all of the other students do, or he can work really hard at making an amazing outline with good vocabulary words that you will write for him while he dictates what to write. He'll work hard on it then and see it as an equal alternative. Have him first start with a title, date, then each week or so, hold him accountable to write a little more.

Worksheets that distinguish between good and better writing also are helpful. My son had to simply check the sentence that was better and pick the reason why. He had several objective writing programs he followed. Some fill-in-the-blank. He also did "Editor in Chief" editing programs on the computer.
When he couldn't write, he read a lot to compensate and fill up the time, picking books only from the Great Books list from Adler.

Overall, I think the behavior issues are not related to PANDAS, just based on my one son's experience (which is therefore not valid ).

The main thing isn't to worry about grade level, or grades on a report card, but to consider if he is learning an appropriate amount about writing. If he isn't, then help the teacher find some methods to accommodate. HWT was a handwriting program he did, but I can't say it helped tremendously. When experiencing multiple seizures, each time you kind of go back to square one, and well, the enthusiasm of the program (if there ever was some) wains. It is understandably frustrating to know that you already knew how to do this and went through the program, but still have to go back and redo it again! This is where PANDAS/seizures cause some attitude problems, but I don't believe that it warrants major behavior problems, if the program has been modified appropriately.

BTW, my 16 yo has been attending a state university, and just this past week we found out he was admitted to a private university full-time as a regular student. I say this to let you know that if you stick to it (don't give in and throw writing out of his academics), and get his behavior so he can learn independently, most likely everything else will be okay!

Hi Bronxmom,
I have a DS6 who also hates to write. We decided to homeschool for a lot of the reasons listed above. He is doing much better with writing now, actually with everything. His behavior changed almost overnight with the elimination of stress with school. He was so happy during the summer and when school hit, he basically went into a shell and had tons of meltdowns or outbursts. He was a lot like your son in that some days I would pick him up from school and he would have gotten into trouble for this or that only to find out he had a temp of 100+ when we got home. He never complains of aches, pains, sore throat, rarely stomach aches, but he has tested positive for strep several times. He does not have seizures though so does that rule out PANDAS???? Anyways I think he is just not in touch with his body signals or messages. We are working on that. He was a bear to toilet train and still gives us 2 seconds in the car before we have to pull over. Anyways welcome and good luck!

Hi Bronxmom,

Welcome and congrats on DYS. I do hope you find some help there, I second what the others have said.

I know nothing about the health issues, so I can't comment. Other than, it sounds very challenging and I know that chronic conditions can be so very draining.

We are in a school district that is also highly sought out, especially for gifted programs. I was perplexed as to why it wasn't working for my HG/PG girls. We also have an HG magnet that is supposed to be great and DD9 should qualify to attend next year.

DH and I did decide to strongly request that the school work with us in attempting to dual enroll them. We were also worried about *fall out*, however, it's worked very well. Like Questions and Kriston, we've found that when exposed to a learning environment that suits the way they think, they respond beautifully. And since DD9 is also going to the public school in the afternoon, her performance in math has seemed to instantly improve upon having that break from the whole school day.

She seems to struggle verbalizing her thought process, especially in math. You have to remember, that most schools follow a very linear and auditory sequential type method for teaching and there are very valid reasons for doing so.

For some kids it doesn't work as well, though.

As a parent, it's very hard to figure out what the right path is for a child who doesn't seem to fit well in the school system. It's a little disconcerting to look around and see all the other kids fitting/doing well and wonder why it's not working.....

It probably took us about a year to figure out a good solution, but we did eventually. I'm sure you will, too.

It's a journey........

Thanks all, reading all this is very helpful.

About PANDAS-- I think one of the strange things is that everyone's experience is different, so it's hard to create a support group or anything. I had not heard about seizures being related to this before-- mostly OCD and tics and behavior problems. I'm not totally convinced PANDAS is what's happening with my son, but I AM absolutely sure that a certain antibiotic (Omnicef, a global antibiotic) changed his behavior, dramatically, for the better. They have changed him to a weaker, prophylactic dose of amoxicillin (just a few days ago) and I think the strange behavior is coming back... so I am confused and trying not to get desperate...

I am starting to believe that lots of psychiatric conditions may in fact be autoimmune problems-- related to infections.

thanks again--

Grinity wrote:

Was this in reply to my question?

That is exactly my DS8!

Yes Dazy, I was posting from my phone, and a bit limited...

Let me know what you find that works, ok? I'm still shaking my head.

Here's another Datapoint: At the young scholar gatherings, he can 'go and go'all day and almost all night for three days with only a melt down or two - which I find amazing.
Perhaps he is an extrovert and drawing energy from the crowd? At home he is an only, and DH doesn't arrive home until 8pm, so things are a bit to quiet.

We recently got a Wii Fit for the family, and it seems that he is finally going to get some physical conditioning, so perhaps that will make a difference.

Love and More Love,
Grinity

Grinity - interesting. DS8 has always been able to go and go and go if we're out at museums or a party or playing at someone's house. He has a 5yr old brother and 2yr old sister, and DH doesn't get home until 8:30-9pm, it's never quiet here!

Sorry to take so long to get back to you. I lost the forum! They moved it on me! (Thanks for helping me find it, Dottie!)


I worry a lot about GT kids losing that light, that passion. I think it's a serious issue and not one to be taken lightly. It says to me that something has to change, and fast. Real damage is being done. You're right to worry, I think.

No, I don't really consider my DS7 to be 2E, though his bottleneck sometimes functions that way. I don't think he'd qualify for any 2E program or anything.

OTOH, I do often deal with his education in much the same way that I would if he were 2E. Since we're homeschooling, I can do that. I think it would be much harder in school, honestly. It sure was in first grade, where the teacher was VERY concerned that DS was not finishing his work in a timely fashion, and was clearly doubting his test scores and GT ID, though his scores and classroom abilities when given challenging work were in the PG range. *sigh* It was really awful to deal with.

We had infuriating times when he was in school, but I can tell you that it often (though not always) gets better when the child comes home. Provided you get your needs met so that you're not worn out and stressed out from too little time alone, it can often make a child much more pleasant to be around if he has enough time to work on his own projects and work that keeps him challenged. This was the case for us.

That's not to say I never yell at him, of course. But it is SO MUCH BETTER than it used to be. A challenged GT kid is often a happy, pleasant kid. Our DS7 made a total behavioral turnaround once we brought him home. He is now generally very pleasant to be around.

Here's one way to help you decide if it might be better for you behaviorally to bring your DS home: think about your son during the summer. Is he easier to get along with than he is during the school year? If so, school might be part of the cause of the infuriating behavior.

Secular homeschooling is much more common than it used to be, and that's good for extroverts because it means that there are lots of very active homeschooling groups around that meet frequently. I know there are some active in NY!

We're even sending DS7 to homeschooling "school" one day a week, complete with classes and recess and Legos and people to play with them! I'd bet there's something like that where you are, too. Co-ops are parent-run, and there's probably something like that around, too.

I'd recommend doing a little research into what homeschooling groups and opportunities are available to you, even though you aren't really ready to make any decisions. Just knowing whether it's a valid option or not will give you some peace of mind. You know?

Also consider finding a sitter or homeschooling friend to share the social burden of taking him to group activites if you need a fair amount of time alone. Personally, as an introvert, that's one of my big problems with homeschooling--to get him the social time, I often have to be social, too, and it's exhausting to me. That's part of why I say that you will need to be sure that your needs are met. If you are exhausted and cranky, it won't matter if the educational fit is good. Any solution you choose has to work for everyone in the family.

Now, if you're an extrovert, too, you'd be in heaven with homeschooling! Really, calling us "homeschoolers" is a misnomer, for we're very rarely home!

Kriston wrote:

Sadly there is nothing within an hour. I'm not in a position to start anything either. But I Think that is unusual.

Hi all,
An update on my son. At the beginning of this week, I was forced to change his antibiotics from a strong, global antibiotic to a prophylactic dose of amoxicillin... On the global antibiotic his behavior was good, his affect relatively calm, he listened and focused-- though at the same time he was strong-willed and excitable as many of our children are-- a regular stubborn HG+ kid... as soon as I switched to the amoxicillin (within a day) his color changed (flushed), his eyes turned glassy, and he became extremely hyperactive and was no longer able to control his irritating impulses. We find ourselves shouting at him. With each passing day, it gets a little worse.

So all these other conversations about how to help a brilliant but uneven kid are beside the point for me really... There is no point trying to teach him anything when he is like this. I don't even think I should send him back to school (they've been on winter break this week.)

I am crushed. It is also affecting my marriage, because my husband, though he notices the change, does not think it's that big a deal, thinks I am overreacting, and hates the fact that I am obsessed with this child.

But I feel deep, deep in my bones that something is terribly wrong!

I just spoke to the pediatrician, who referred me to an ENT specialist. His tonsils are probably chronically infected and need to come out. But the ENT person has no appointments until March 28.

I know this has nothing to do with GT stuff but I am at wit's end.

bronxmom, I just realized that I had sent you a pm some time ago, and it still shows unread by you. Click on your flashing envelope if you want to read it.

sent you another one, too

Hugs Bronxmom - I'm so sorry to hear this. Can they put him back on the stronger antibiotic?


I agree! But I am hopeful that soon you can return to your regularly scheduled worries.



Agggghhhh - this stinks. Golly, if your OverExcitabilities don't get in a twist over your own kid, then I don't know what they are FOR in the first place. Try to stay 'warm and firm' with DH. He will come around. Complain here all you want while you wait.

I am sure that you have learned to honor those feelings by now. I trust you!

Does your pedi know how long you are being asked to wait? If not, tell yhour pedi and ask her or him to call the ENT and beg for an earlier date. Make sure your pedi knows how much of a drain this is on you. Doctors will often 'call in favors' from each other. You'll know because you'll get a phone call saying, 'We just got a cancellation, can you be there this afternoon?'

Everything that affects a Gifted person is related to 'GT stuff' because they experience it in their own Giftie way. Keep us posted, ok?

Love and More Love, (because sometimes that is exactly what it takes)
Grinity

Grinity, thank you. I will definitely find some way to get him seen earlier, it's just so frustrating when everything is such a struggle. Thank you, really.

((hugs))

hi brnx, just posting to send good thoughts your way- I hope you are finding quicker help for your ds.

I just wanted to add from an earlier post to check with your local YMCA for homeschool programs as well. Here my kids go to a gym and swim program once a week as well as regular swimming lessons. They are also a great resource if I need a break to exercise or just sit in the steam room and de stress after a long week. I would never have thought to check with them and was guided to the program by other homeschool moms.

Really hoping you are able to find answers brnx. I have never heard of PANDAS but your son has peaked my curiousity.

Thank you so much for your kind thoughts... I did get an earlier appointment (early next week) and hope to "resume my regularly scheduled worries" (as Grinity so aptly said) soon.

In fact I have resumed them already... because my son is just so miserable at school! They don't explore any of the topics that interest him. He told me that yesterday they studied solids in science, "but it was all stuff I knew a long time ago. It's always like that."

His body of knowledge seems WAY ahead of the other kids, but his concrete skills, especially writing, seem pretty behind.

So he spends his whole day butting his head again a wall. (And getting in trouble.)

Also my son seems to need MORE play time than other kids his age. I mean he gets lost in a fantasy world for hours and hours at a time. It often feels like we are living (or walking down the street) with a maniac. And I know this imaginational OE will remain even when his health improves.

I am wondering if others feel that their kids need more, not less, play time than other kids their age... but maybe that's a question for another thread.

Thanks again! I'll keep you posted on the medical stuff. It really is interesting. I think this connection between antibodies and mental health/behavior is just beginning to be explored!

Big hugs Bronxmom.

I too feel that my son needs more playtime than other kids. I constantly heard when he was in school "I don't have enough time to play." And he was one of the FEW kids that doesn't play multiple sports and didn't have afterschool commitments every day. He just seems to need time to pursue things that he wants to do.

YEs, the connection between the immune system and the brain is in it's infancy. I'd love to be a neuroimmunologist in the next few years. I'm sure some fascinating discoveries are on the horizon.

I was that child. My parents struggled to find a solution to that issue from first grade until middle school. Since sixth, I have typed most of my schoolwork. Within a year or so, school ceased to require any discernable effort. I am now a junior in high school and doing well. If handwriting is your son�s problem, he couldn�t have a better one. How often does one really need to write more than a few words by hand? Computers these days are light, sturdy, and portable. Laptops with long-lasting batteries and restored typewriters can be used during power outages. A PDA with a Bluetooth keyboard is a small and economical possibility. There is no longer any reason to force a child to write by hand. Whether writing physically painful for your son or just distasteful, penmanship is increasingly unimportant. Especially if it is the former, typing lessons could change his life. His active imagination suggests that, if freed from what may be a physical difficulty, he might have some stories to tell.

Hi Bronxmom - glad to hear your appointment got moved up. Yes! Playtime is so important! The skill thing real evens out once the typing ability emerges - until then it's like waiting for puberty.

Hi Arminius - Welcome! I also found keyboarding opened up my whole world, once in high school, then in college - when spellcheck became availible, then recently as a mom with social networks like this one. A great age to live in for folks like us!

I was around during the 'heyday of PDAs' and really miss them. I had a keyboard too. What do you find is the best combo for highschool - portability v. cost v. usability. My son is starting next year. I wonder if those netbooks are 'enough' for notetaking, am drooling over the MacBook Air, and thinking a Blackberry with a keyboard might be 'just fine.'

Smiles,
Grinity

Thanks for the reassuring words, Arminius. If you don't mind my asking...did you give your parents trouble in other ways? Generally defiant and/or stubborn? Or was it just a handwriting issue?

I'm still not sure if his problem is a pencil grip/handwriting problem that can be eased by teaching him to type. He seems to hate typing just as much. It seems like a psychological fear triggered by the sight of a blank page (or screen)...

In the mean time, I am despondent over this child. As I feared, it gets a little worse each day...I feel angry at him all the time, but I know I shouldn't, because on a very real level it isn't his fault, so I suppress the anger-- and the result is that I am slipping into a depression and today had a full-blown panic attack.

You are all describing brilliant children who need acceleration... I have a brilliant child who can hardly get through the day, does shoddy work, and fights a losing battle to control himself.

It's extra frustrating right now, because I saw something that worked-- a particular antibiotic-- but I could not leave him on it, so I've had to watch this all come back again and again...

It feels like that story, Flowers for Algernon...

Horrible.

oh hugs bronxmom. I'm so sorry. WHy couldn't you leave him on that antibiotic? Is he not able to clear the strep from his system? He is not getting continually re-infected is he? A friend whose DD developed OCD after going to school, swore it was the water fountains causing the recurrent strep.

Apparently, the spectrum of microbes it attacks is too broad. I guess he'll run a huge risk of developing a resistant superinfection later. Obviously I don't want that.

I just wish they would put a little effort into figuring out just WHAT infection he really does have and whether there's a narrower antibiotic that will work, since it's tearing our household apart.

Also, does anyone have any advice for me on how to be more aggressive in getting better medical help for my son?

bronxie have you found an internet support group for the Pandas? that is step 1 when is your appointment? i would also like to see you get a daily vent time - phone, blogging, journalling whatever works for you but it must be regular....... love and more lv, grimity

http://www.pedrheumonlinejournal.org/April/reviewarti.htm

this stuff is confusing! Sounds like a very new method for identifying a syndrome, hopefully you will have good luck with getting some better treatment, but I would recommend digging around - doing research on your own.

I guess I am just accepting what a long-term thing I'm looking at...thanks for the article...

I am not knowledgable in this area at all but I am wondering, is there a way to test for what microbe his is infected with? We test for infections on the skin, in the blood, on mucous membranes and in secretions you think they could figure it out. Someone please enlighten me, I'm sure I am missing something.

bronxmom- my son was diagnosed by a pediatric neurologist. He worked with another specialized ped neurologist. His tests were very thorough, since my son had had a gran mal seizure, and they were looking for a pattern for the onset from past ones.

I don't know if it helps, but at the time, pediatric neurologists were the only ones who could diagnose PANDAS. Maybe if you go to one, they would be more knowledgeable and help more. They also might be available. We have to now go only every six months for follow ups.

BTW, did you know there is a vaccine they are working on for strep throat? The last I heard it was being tried on a specific sample population. It will keep these guys from prophylactic doses of antibiotics. We hold out hope then that it will be overcome someday.

How is your son doing now? Is he taking prophylactic antibiotics? Which one?
What is the prognosis of PANDAS kids into adulthood?

I guess I should ask my pediatrician for a referral to a pediatric neurologist. My pediatrician does not seem to understand the agony that I am going through.

The first thing you needs to do is to eliminate the infection. It sounds like your son is still infected, because once you change the antibiotics to Amoxicillin then the antibodies increases and causes the changes in his behavior.

The 4 different cases of strep throat he had back in Oct/Nov may not be 4 seperate cases. It could be that the antibiotic from the first strep throat did not eliminate all the bacteria that caused the infection. So it came back over and over again. A few courses of antibiotics could cause bacterial resistance. If his infection is persistent, does he need to see an infectious disease specialist?

Did the doctor do a throat culture? Can he run an antibiotic susceptibility test to see which antibiotics is the best to fight this infection? Is it possible that the bacteria is resistant to antibiotics, or maybe the bacteria is resistant to just that type of antibiotics?

There is also something called plasma exchange or IVIG to filter out the antibodies. However, the infection has to be eliminated first. See this article: http://www.childadvocate.net/PANDAS_treatment.htm

Good luck!

yes, in my mind the real issue here is that there's a resistant infection lurking somewhere in my son's body-- which is suppressed but not wiped out by global antibiotics. It does seem like an infectious disease specialist is what I need, but I dread calling hte pediatrician again...

Or what I really need is that TV doctor, House...

I have heard about the IVIG/ plasma exchange--

thanks!

Bronxmom, A friend from another board directed me here to your discussion. My oldest ds is gifted but not like your son...he's a 133. We are having the same issue as you with PANDAS. Although I only read the 1st and last pages of this thread (we are off to the dr for another strep test in 30 minutes), I feel your pain. I will share our story here and then maybe we can talk later and I can go back and read what you've been dealing with.

DS has an Aspergers diagnosis since 6 years old...barely qualified but we needed help due to behavioral issues, mostly aggression but one could say it's primarily due to fixation on a frustration. Just before turning 8 he developed chronic headaches and behavior declined after 2 pleasant summer months. We got him glasses for a mild vision problem, got sinus xrays and had an MRI done. The only helpful thing we learned was that he just barely tested positive for strep (after 3 weeks of headaches which struck the dr as odd - if he'd really had 3 weeks of symptoms there should have been lots of strep in his system). He was treated and 2 weeks later we had the most delightful, beautiful child! That's not to say he suddenly became a social butterfly, but he was kind and thoughtful, helpful and sweet. We had 1 good month and then it all started again. He had strep a 2nd time. Then another good month and behavior declined again. This 3rd time we caught it faster...he had no other symptoms besides behavior. However, although his behavior improved, it was not as dramatic as the 1st 2 times. 2 more decent months and then his little brother picked up strep at school. Behavior declined AS we were waiting for the strep results to come back. Again, behavior improved quickly but not to previous levels.

This was 2 months ago. Now in that time he's presumably had croup (oral steroids which mess with his behavior and confused things), a cold (headaches too so another false alarm), horrible double ear infection (resistant to amox so he switched to augmentin), and then 4 days after finishing his anitbiotics he develops a horrid headache and vomits all over the nurse's office at school. He is complaining of a mildly sore throat as well. To my amazement, the strep test was negative. I should have ben more skeptical. It has been 8 days...the low grade headache and sore throat have persisted and then this evening he woke up and started vomiting again. Now he says his throat hurts horribly. His stomach still hurts. I'm SURE he had strep and they missed it bc he'd been on antibiotics so recently. I was assured that 3 days post antibiotics was plenty of time for an accurate test but what else causes 8 days of headache, vomiting and stomachache in a child? Especially with his history.

His behavior has been horrid...we feel like we've gone back to this time last year and lost all 'progress' behaviorally. I want to bring him home to homeschool in the fall. We thought we'd figured out that the behavioral issue were strep-related and that we could now manage him at home. If we could keep him healthy life would be so much happier for all of us. Now I'm not sure I can handle schooling him at home...if this keeps up...if he becomes resistant to all the antibiotics and continues to get strep...if this isn't strep at all. I don't know what dr to turn to anymore. We've seen an infectious disease specialist (strep specialty...useless), a neurologist (thought he was developing migraines) and we've been on a waiting list for a year for an autism dr who might actually take us seriously but the date we were told just keeps getting bumped back time and time again.

To add more relevant to this board and learning...ds has stayed on track at school but he used to be WAY ahead. He seems much less able to learn when he is having these headaches (i.e. strep). He also had handwriting issues in 1st grade. It was agonizing for him although the teacher wasn't concerned bc it was legible. OT eval showed huge delay in line tracing masked by skills that were very advanced for his age. This year is much better. I thought it was due to OT and age but perhaps not, now that I think about it. Last night he was tortured by switching back and forth between printing and cursive on his spelling hw...maybe it was the sign that symptoms were about to resurge last night. I had commented to dh that it was the most difficult night of hw we've had all school year but initially I had thought it was an inability to switch gears back and forth...hmmmm

I would love to talk to you.

Brownie

Well - back from the dr and they admittedly have no clue. The 2 suggestions were (1) environmental allergies {obviously not since he's been asleep for 4 hours since coming home and now finally is spiking a fever} and (2) a resurgence of mono {I forgot to mention that we had a bunch of bloodwork done in October and they proved that he'd had mono, probably recently, in fact likely approximately coinciding with the first in the run of 4 strep diagnoses}.

I've read through your posts and it's amazing how similar our experiences are. I would love to keep in touch. Brownie

Hi Brownie,
I was going to send you a PM but... I cannot even figure out how.
So feel free to pm if you want.

Did they give your child another strep test today? Did anyone check his antibody levels? Though at a certain point, if this thing gets really entrenched, I think exposure to any illness, even a virus, can set it off. One of my son's episodes was set off this year not by a strep infection, but by staph. I think if your kid is helped by antibiotics, he should be on the antibiotics, indefinitely, because as you've noticed, each time this thing is harder to control. I now feel iike I spend half my life going around trying to get my hands on more antibiotics.

There is another forum I check on-- it's hugely helpful if you think your kid has PANDAS. Maybe you could get some help there finding a doctor who knows about PANDAS.

http://www.latitudes.org/forums/index.php

Good luck.

I can imagine that once you've had so many episodes of strep, that once you get any infection, you may be getting by-stander activation of the anti-strep B B lymphocytes.

My friend is a nurse. She said she had a patient that came up positive for strep. They tested the stool, emesis (vomit), throat swab and nasal swab/lavage. She said the throat swab came up negative but one of the other samples came up positive.

Bronxmom, I PM'd you...double click on the flashing red envelope near the top of your screen. Brownie