IEPs, spelling, lates, absences.....

[EAMom]

My son had PEX and then regular IVIG, and he is doing great emotionally, I keep waiting for this to improve but so far... nothing.

 

 

Hi Bronxmom (and others),

 

how long ago was IVIG?

 

I would say the things that (for us) that definitely improved with IVIG was handwriting (she doesn't have beautiful writing, but definitely much much better) as well as a weird problem with "margin drift". In 1st grade/early 2nd grade her margins were fine (all lined up on the left). After her big PANDAS explosion in 2nd grade, and ALL of 3rd grade, she had a problem with Margin Drift. At the top of the page, the line would start at the left hand margin, but each successive line would "drift" further left. We actually worked with an OT for this problem, and made very little headway. (Unfortunately, the our health plan also griped about covering the OT visits b/c of some strange technicality, even though it was "in network". It was suggested we work through OT at school, but school OT eval. said she didn't qualify for in school services.) ANYWAY...the whole Margin Drift problem resolved nicely with IVIG #1 (just before start of 4th grade). After a relapse (FEVER--Feb 2010) the Margin Drift came back a bit, temporarily (teacher noticed it too). But, didn't stay. So, right now her margins are fine.

[Fixit]

Hey dcmom!

my 8 yo son is also 2E and it's the same exact "menial" areas that are affected (addition, multiplication, spelling) while he gets pleasure from the more difficult things-- graphing, geometry, fractions, etc. His reading comprehension and reasoning skills are really way way way beyond normal but the act of writing (anything) is so psychologically painful to him that it makes him cry. It is really frustrating for both of us. My son had PEX and then regular IVIG, and he is doing great emotionally, I keep waiting for this to improve but so far... nothing.

 

It would have been even worse to have seen him excel in those areas, and then watch his skills erode. How frightening! I'm so sorry you've had to go through this. I have to say that I read most posts on here, trying to track people's stories, and I think I have yet to read about a kid who recovered his academic skills and/or attention span.

 

As you may recall I am homeschooling my son. I just can't imagine him in a regular school at all. At this point I've decided to let him skip the multiplication tables altogether and let him go straight to geometry. I'm lucky if I can get him to write one messy sentence but he has the reasoning powers of an adult.

 

Your school should be understanding. The typing IEP is a good one. Good luck.

 

bronxmom....i don't know if this would help..but i did do the brain balance program for ds...it is pricey...

..i do think they have success with add, adhd, and other such issues...they claim to help ocd and ts and autism......and of course when i came in with possible ts they were a little gun shy as i think that is the one area the have the least success with.......

the premiss is that the brain is not developing equally, right vs left hemisphere....maybe this is something that needs to be addressed once our kids get ill....

ds did have some adhd tendencies..nothing i would med for...

when i did the program...it was for the tics....they did get better...not cured...they also integrate diet..high aminos, vitamins, food restrictions(this is when we were on the taurine)

anyway...the one thing that did happen was his a.d. remitted. or maybe he just got older..but it was only a 3 month program...so idk.....

i was a drill seargent...3x a day for 1/2 hour ...gfdf.etc..if i'm paying 6k ish..and more important his brain is only young once..i really wanted to attack this

 

mind you ds has (knock knock) had academic isssues otherwise...even now as i try to get eip or 504 they say they can't do it because he is excedeing all his classes!!!!...

i said yah ....but where would he be if he did't have to find his place on the page every 10 seconds(this is when he had severe head tic)...

 

just a thought...

there is also a place called the handle institute and they have some exercises on their page

maybe check some add/adhd info...just as we see things cross the boards from ts, ocd and lymes this may be another..

and just like some rage with pandas, some become internal....so maybe add/adhd can express in different ways too???

[Megs_Mom]

Oh, we can relate! Spelling and multiplication memorization have improved, but I wonder if they will ever be back to normal. She is way ahead of her peers on reading and math concepts - behind (but not horribly at this point) in spelling, multiplication and handwriting. This was so much worse in an exacerbation (she fell into the lowest spelling group last year, from the highest the year before), but is still notable. I really don't care about spelling & handwriting, but her school does timed multiplication tests (which I think is stupid, but makes her feel bad if she is behind), so we spent much of the summer working on these in a low key way. She would not do anything that seemed like actual focusing on the multiplication tables, so instead of having her do the computer games or videos, I watched the darn things, and then tried to find ways to use them in real life.

 

We set up games, such as "war" or "matching" using multiplication cards, and did a "two hard ones a week" goal, where we literally just tried to learn 8x7 and 8x12 in one week. We'd spend about 10 minutes at a time on this maybe 2-3 times a day. We used a lot of math tricks, to aid memorization (such as the 5,6, 7, 8 song for 7x8), and then taught concepts for 9's, logic for 12's, patterns for 11's, etc. We found all the factors of 24 as another example, and then spent one week learning all of those, instead of memorizing them in the 4's, 6's, 8's, etc. We talked a lot about what makes sense - like if you know that 8x10 is 80, then 8x7 cannot be 84.... She is pretty good at them now, but she has them memorized more from logic or concept than from pure memorization, if that makes sense. This keeps her slower than the other kids, but she is surviving.

 

She is now the last kid to finish most math tests, but gets better scores - so I just keep telling her that I'd like my scientists to go slow anyway. No point in measuring the wrong amount because you do it fast. I'm not sure she'll ever get all 100 problems in 3 minutes, but she knows that I do not care, so long as she does her best. On the flip side, she is one of only a few kids that can understand the concept of place value in 2 or 3 digit multiplication, and is begging to do long division. I'd rather have that.

[smartyjones]

these talks about multiplication make me wonder . . . .ds6 (onset at 4.5) has not shown deterioration in math skills, although when looking over last years (kindergarten) writing, i see definitely pandas deterioration in the spring. he then had big problems with teacher b/c he refused to do much, i now think it's b/c most of it involved writing and he'd avoid anything that would make him write.

 

is this just how pandas has affected him, or was he too young to have this affliction? is the issue with math skills one of some way of abstract concept processing? was he hit at a young age when he didn't really have abstract thinking anyway so no one expected him to think abstractly and so therefore, we don't see a problem?

 

ds8 (non-pandas, although does show slight symptoms only a pandas mom would see) is an extrememly concrete person. if you ask him "8 times 4", he gets a bewildered, lost look - panicked with multiplication. if you ask him "what is 8 taken 4 times?", he will come up with it quickly just adding 8+8+8+8. this is partly b/c he is so concrete by nature and partly b/c he's gone to montessori school that emphasizes concrete with a gradual move to abstract.

 

we're in the process of moving, so i am doing homeschool right now to avoid too many transitions. i just made a montessori multiplication checkerboard that allows a child to multiply something like "3249 x 31" by moving beads and reducing it to addition.

 

my nephew(11) ( i believe undiagnosed pandas) struggled with multiplication and only recently learned it b/c he learned division first and then multiplication made sense to him.

Edited September 19, 2010 by smartyjones

[EAMom]

 

 

We talked a lot about what makes sense - like if you know that 8x10 is 80, then 8x7 cannot be 84.... She is pretty good at them now, but she has them memorized more from logic or concept than from pure memorization, if that makes sense. This keeps her slower than the other kids, but she is surviving.

 

 

 

This is good...the logic stuff (that is how I think of the multiplication tables). I have tried this a bit with dd, but she sort of balks, and won't listen (anxiety!).

[MomWithOCDSon]

She is now the last kid to finish most math tests, but gets better scores - so I just keep telling her that I'd like my scientists to go slow anyway. No point in measuring the wrong amount because you do it fast. I'm not sure she'll ever get all 100 problems in 3 minutes, but she knows that I do not care, so long as she does her best. On the flip side, she is one of only a few kids that can understand the concept of place value in 2 or 3 digit multiplication, and is begging to do long division. I'd rather have that.

 

 

So true! Our DS, too, always struggled with the danged times tables and the teachers' insistence that you be more or less "automatic" about them. They would have drills in class where she would hold up a big flashcard with a multiplication problem on them, and it was a race among the students to be the first to shout out the answer. DS repeatedly came home from 3rd and 4th grades talking about how "stupid" he was because he couldn't "do math fast."

 

Fast forward to 8th grade and he's still one of the last kids to finish a quiz and can be painfully slow about math homework (those "explain your answer" and "show your work" problems are the bain of his existence because he, too, struggles with handwriting and math doesn't readily lend itself to working off a keyboard), but he remains in the gifted math program and can do things in his head I've NEVER been capable of!

 

Smarty -- I've discovered my DS thinks "backwards" sometimes with regard to math, which sounds similar to your DS. In first grade, they used to make a big deal about the First 100 Days of School. And for math, they would build this bar graph (10 columns by 10 rows) to show where they were in terms of reaching 100 days. At the open house that year, the teachers asked what day of school it was (43), and then she had some of the students demonstrate how you might come to that answer. So one kid says 10 x 4 + 3, and another one says 10+10+10+10+3. After which, my DS volunteers: "100-(6x10)+3." For the entirety of first grade, that's what he would do: take his math out to a big number, and then subtract instead of add or multiply. I couldn't figure out why.

 

And, to this day, he still seems to do his math differently, but he almost always gets to the right answer. "Slow and steady wins the race."

[michele]

My son has had PANDAS since age 1 with high fevers and strep/ear infections back to back. Now at age 8 he still has exacerbations when ill. His latest sice Aug. involves tics, hyperness, defiance, attention deficit, and compulsions with OCD. We have been really diligent about getting help from the school. OT for motor delays, PT for toe curling walking issues. He really struggles with fine motor and gets OT at school and private. His IEP at school is under other health impaired. He gets a tutor in Math and Writing, Spelling and handwriting at school. Math facts are really hard for him too. His visual motor skills are delayed. I also get him social skills at school and accomodations such as extended time, organizational help, a daily notebook between home and school, not taking off for handwriting, state testing accomodations in a small group, read aloud, extended time. I am in the process of having a independent evaluation done for him at the schools expense. We may get more services then if they are suggested by the evaluator. He scores in the average range IQ on the schools testing but struggles with daily work. His attention is short and he gets easily distracted and frustrated. Brain Gym is a program we have used to help with the right brain, left brain connection.We also go to a private tutor after school.