What sort of academic struggles does your child face?

[LNN]

I'm curious. When my son was first diagnosed with Pandas, I thought he was the only one who struggled with reading. Unlike the published symptoms, he's strong in math. I'm now coming across others who are in the same boat. So I figured I'd try out this polling option to see what sorts of challenges everyone faces in school. This is my first attempt, so apologies if I screw it up.

[Megs_Mom]

Hey! Our dd8 is good with Math even in midst of episode, so it might be hard to see a change (she is usually so far ahead of her class). But her writing falls apart - it seem physically painful for her. Reading is hard to evaluate, as she goes in and out of interest here - but never so bad that we'd notice anything major. It's the ability to put it on paper that is so hard. She cannot spell to save her little life, which is strange when you see how good she is at reading and math. Her art also falls apart, and becomes very interpretive or modern - more like a very young child than a 3rd grader.

[Suzan]

For dd8 its timed tests and focus. ( I think I messed up on the poll results ) Also, comprehension. When she's in an episode, she can't understand her homework nstructions.

 

For dd6, it's her handwriting. It goes completely during an episode and takes a while to come back.

 

Both are very good at math. DD6 is having trouble with spelling and reading, but she's only in the 1st grade so they are not considering her behind at this point.

[EAMom]

I'm mainly commenting pre-ivig since things are improving now post-ivig:

 

SPELLING: absolutely terrible, neither parent (esp. dad) is great speller, but she is even worse. I think IVIG is helping this, but her spelling is still bad.

MATH: terrible at memorizing "math facts", terrible at timed math tests. Initially she was pretty good at the algebreic concepts in math but even that began to suffer as her pandas progressed. Math skills now are improving post-ivig.

HANDWRITING: terrible, worse during exacerbations. She also has trouble with "margins", can't line up her sentences on the left side of the paper. This is all improving post-ivig. Her handwriting actually looked nice the other day.

COMPOSTION: good. She knows how to compose a good story/paragraph. She has a "way with words". She also doesn't seem to suffer much from writer's block.

READING: initially had trouble (K/1st) with learning to read. She really struggled with "phonemic awareness". We thought that she was dyslexic. In 2nd/3rd grade something "clicked" and she learned to read. She read by "sight" vs. sounding out the words. We had some testing done in 3rd grade (last year). Her reading comprehension was 98th percentile. She is also a fast reader...her reading efficiency (speed) in 3rd grade was at college level. This was all pre-ivig.

 

Last year homework was a big stress. Lots of meltdowns. Probably b/c it was so hard (writing/math/spelling) for her and also b/c of the emotional stuff that pandas causes. Homework is getting better now.

[dcmom]

My dd is in first grade. I did not really notice a lot of learning issues last year, however, I think she is now somewhat behind from missing the time pandas stole from her. During her episodes she has NO interest (this is putting it mildly) in schoolwork, homework and/or reading with me. I guess this is probably because it is harder for her, I just haven't been able to figure out exactly what. I didn't really worry last year, since it was K. First grade is a big year- so I am hoping she doesn't lose as much time this year. Right now she is doing well, and progressing.

[Worried_Dad]

Please pardon the parental bragging! Before PANDAS hit, our son was doing great in school: loved math, was reading adult SF novels voraciously (at 10), had been selected by the Northwestern University Midwest Academic Talent Search as a candidate (with more testing) to take some classes at the local college. Then PANDAS hit. During the worst of exacerbations, he could not read anything and remember / comprehend it. Could not do more than a few problems of any kind (math, English, science, social studies, whatever) without complaining that it "made his head hurt."

 

He missed all of 7th grade last year. We're trying home school this year and praying he'll get through it. Guess we'll see....

[T_Mom]

Prior to PANDAS and when not in an exacerbation--gifted and talented. When my d has had exacerbations her handwriting went down-hill fast. Written composition has also been greatly affected. In fact her written language became so bad that last year the school said they would no longer grade her writing! On the report card for that quarter they put NA...

 

Math was affected in that her writing and concentration made it almost impossible to carry through on multi-step problems. Her drift in handwriting also made problem writing in math very difficult.

 

Overall concentration was affected.

 

We believe our younger d has shown some signs of Ps now as well--though relatively mild and controlled with antibiotics right now.

She is in 4th grade and her reading "focus" was affected. This results in a lack of interest in reading--

 

LLM-- I would guess the reported "academic issues" associated with Ps will be correlated somewhat with the grade-level of the child as what is asked of a child academically will vary across age--so you will see differing results somewhat according to age, just my guess:)

[EAMom]

Math was affected in that her writing and concentration made it almost impossible to carry through on multi-step problems. Her drift in handwriting also made problem writing in math very difficult.

T.Mom--are you talking about margin drift?

 

 

We believe our younger d has shown some signs of Ps now as well--though relatively mild and controlled with antibiotics right now.

She is in 4th grade and her reading "focus" was affected. This results in a lack of interest in reading--

 

I have noticed that pandas dd reads more when her pandas is controlled...after her steroid burst she was reading a lot, and now that she's had IVIG she's reading a lot.

[LNN]

EA Mom - my son also reads more when he's feeling better. It's like he can finally enjoy the sense of accomplishment instead of dreading it.

 

T. Mom - you may be right about age of onset effecting different subject matters. My son was a beginning reader when he was first diagnosed (start of 1st grade but probably had milder episodes even as a preschooler) and never had this skill under his belt. He also has yet to lose his first tooth, tho he just turned 7. His teacher thinks that kids don't really grasp reading until they've lost a tooth. Something corresponds with the body's development and the ability to process reading with ease. You hear about Pandas causing age regression in behavior and baby-talk. I sometimes wonder if it doesn't also slow down other types of physical development (e.g. losing the tooth, enuresis, etc), which in turn delay certain cognitive developments/achievements.

 

As I mentioned, I am collecting questions for a questionnaire. If anyone has questions they'd like to suggest, please feel free....

[T_Mom]

EAMom, I watched for the "margin drift" after you mentioned it last year, and I too often noticed a "margin drift" but not consistently. The really obvious example of Ps that I would take to doctors last year was a folder of her writing samples from the year before to the months of her exacerbation...it was a SHOCKING and obvious contrast.

 

Dr. K's website was the first place I read about Ps kids having writing issues, and it blew me away.

 

We kept coming back to that issue on his site as it was so striking and obvious in our case. It helped us define the issue really.

 

My professional background is in the area of teaching writing and written language development and it was definitely an obvious change in both handwriting AND more importantly written construction. Margin drift seemed to be part of the whole "writing-disconnect" that our d experienced.

 

LLM, the "first tooth" analogy makes sense but it is typically an age-based issue in my understanding...related to "what teachers say" re: reading:) I think the age-regression issue can take the child by storm in Ps as far as their resulting behavior "acting out" as a result of brain inflammation, at least it did with our d. I wonder if all children actually experience it or if that is based on the experiences of a few? During her worst exacerbation she was like a naughty 4 year old, in all ways. She was 10 at the time.

[KeithandElizabeth]

This is an interesting thread.... Dr. K mentioned to us, and I believe he states in his website, that many of these children are very strong in math and were very articulate at an early age. I would say that our son was/is super strong and above level in math and reading, but can barely write and his art work looks like the art work of a 2 year old. Last year (1st grade) our sons teacher said she never saw a student before who wrote so poorly and whose fine motor skills were so behind, yet they did so well in math. Now I realize, after a year of wasted time in occupational therapy, that this was all related to PANDAS.

 

If we were not so emotionally vested, this could actually be pretty interesting....... So, not only do these children have a genetic predisposition and perhaps a weak immune system, but they usually have a personality prototype for this disease.

 

Elizabeth

[Megs_Mom]

It's so interesting that so few are listing Math as the main issue. The lack of math issues was one of the reasons that I initially wrote off PANDAS when I read the literature. She is SO good at math, that it is a little freaky sometimes. And yet, I am always shocked when I see the art that her friends can produce. I always call Meg my "modern art girl". She actually wants to be an artist when she grows up & is SO frustrated when the dreams in her head simply will not come out on paper. Perhaps she will be my Picasso.

 

I also read the phenotype of a PANDAS mom (Dr. K's site), and I have to say, that it made me laugh. If we weren't computer geeks and freakishly organized, we would never have found PANDAS, never mind medical professionals to help! I really don't think that means that we are the typical PANDAS mom. I suspect this is much more common, but that without good doctors or luck, most people are resigned to pyschiatric drugs, and a limited life. I wonder how many are diagnosed with autism at a very young age.

 

Elizabeth - as your child heals, and some emotional distance is possibe, this does become a rather interesting disease. Trying to find the connections, educating doctors, finding additional answers - for many of us, it has become more than our child's disease - but more so a quest for knowledge that does not seem to fade. During an episode, I care only about Meg and finding answers for her. Afterwards, I have the time and energy to look at what role this will now play in my life. It is an interesting question - and I am not sure that I know the answers yet!

[fuelforall]

YOU NAME IT.

Terrible up and down the chart. Reading, writing, math, you name it. A grade behind his classmates but he is in an inclusion program so they pull him along. Can't draw. No short-term memory. Learns visually so won't read unless there are pictures and now there aren't any so he won't read.

 

Loses focus, makes vocal noises in class.

Somehow made it through third grade testing-symptoms were down then. Fourth grade coming up... whew. Can't wait for IVIG, hope it helps!

[bronxmom2]

Mine is impaired is writing-- his spelling and penmanship are OK (not great) but the composing, getting thoughts on paper, are the real problem.

 

Math computation is bad--math reasoning skills are strong-- so he gets really frustrated.

 

His drawing is terrible, for the most part he simply don't do it.

 

If you turn a timer on, he goes berserk and gets paralyzed with anxiety.

 

Reading is a huge strength, thank god!

 

He loses focus, can't follow directions, and does poorly in a group.

 

After my meeting with his teacher last week, when I learned that he spends much of his day in the hallway for disrupting class (without even a book!) I pulled him from school.

 

This way, I will also protect him from strep.

 

He's upstairs reading right now. When the baby wakes up, we're going to spend the rest of the day in the playground. Wish me luck with this!

[ShaesMom]

I'm curious. When my son was first diagnosed with Pandas, I thought he was the only one who struggled with reading. Unlike the published symptoms, he's strong in math. I'm now coming across others who are in the same boat. So I figured I'd try out this polling option to see what sorts of challenges everyone faces in school. This is my first attempt, so apologies if I screw it up.

 

 

My dd is also strong in math but struggles with reading, spelling, and writing stories. Her drawing is horrible which causes her a lot of stress because her brother is very good at art. Homework is always a struggle and usually results in meltdowns.