shared traits of PANDAS children?

[EAMom]

Hi Bronxmom (also Michele),

 

I would think if your son's learning issues are from PANDAS that IVIG would help. I know "Jena" said that the IVIG really helped her child's handwriting. In my dd's case I don't know if PANDAS is the cause of her handwriting/spelling issues or if it is merely compounded things by adding an extra fine motor component.

 

If IVIG helps my dd's spelling/handwriting that would be a big bonus for us.

 

My dd doesn't have quite the "empty sheet" anxiety that your son has. When she does write she has no problem thinking up stories/poems. Once you can get past the illegible handwriting, spelling, margins, random capitalization what she writes is usually very well written. It seems that it is the physical task of writing itself that is the big problem (and so much effort). She tested at the 1st grade level (she's in 3rd grade) on the Rosner test of Visual Analysis Skills (fine motor and spatial planning...important for writing and copying.) She also tested at the first grade level on the Rosner Test of Auditory Analysis (reduced phonemic awareness) which may account for her trouble in learning to read (in K, 1st) until she became a fluent sight reader (and now she reads well above grade level).

 

I would call what my dd has Dysgraphia as well. For some reason the neuropsychologist didn't want to call it that. Maybe they felt that oversimplified her situation?

 

Michele, she did fine on the Beery VMI. Her visual perception skills were above average (we got them tested at UC Berkeley Optometry b/c the OT thought this might be part of the problem).

 

My dd's artwork is pretty good, although it does tend to get messy! During the height of her bad PANDAS episode last spring her drawings did get weird and distorted. This seems better now.

 

Bronxmom...is your son's school public or private? I did see a show about NYC kindergartens. It was amazing what these kids/parents had to go through to get into good public/private schools. Ha ha...in Northern Ca we just have to shell out big bucks for an expensive (but often small) home to get into a "good" school district...

[T_Mom]

Hi BronxMom,

My daughter had been assessed as talented and gifted in 3rd grade.

 

Her first obvious/severe PANDAS-like episode was in the middle of 4th grade. By the end of that year I was questioning the school about WHY they were not doing a better job of teaching handwriting ... as her handwriting and written expression showed a significant decline from the start to the end of that year. At the end of 4th grade she again tested as talented and gifted (Hopkins).

 

She had a very severe episode (much OCD, etc.) that summer (08.) She recovered (after treatment) and in Sept. her new teacher saw nothing wrong, though she told me in October that she was surprised that our d. had ever been assessed as "gifted".

 

After our d.s 2-3 moderate episodes in the fall her writing (handwriting and written expression) remains far from what it was the previous year. (In January the teacher told us our daughter was the "worst writer" in the class...) There has been some improvement in the past 3 months since she has been on full strength ongoing antibiotics (know we need to switch to prophy. soon.)

[bronxmom2]

Hi TMom and EAMom,

Well, I am just trying to be hopeful! One of the scariest parts of this whole thing is that your child may be suffering permanent brain damage. Like many people have posted, it was originally suggested my son had ADHD but this never added up... though I knew something was wrong...

 

EAMom, I probably should not admit this, but it's just such a coincidence-- I think we were in the show you saw about kindergarten in NYC... not the smartest thing I ever did...

[EAMom]

Oh my goodness...okay, were you the one who got into the good public school? I'm trying to remember the show better now. I think there was a single mom (you?). There was also an african amercian couple with a little girl who got a scholarship to a private school. There was also a married couple with (I think) a little boy.

[T_Mom]

Hi TMom and EAMom,

Well, I am just trying to be hopeful! One of the scariest parts of this whole thing is that your child may be suffering permanent brain damage. Like many people have posted, it was originally suggested my son had ADHD but this never added up... though I knew something was wrong...

 

EAMom, I probably should not admit this, but it's just such a coincidence-- I think we were in the show you saw about kindergarten in NYC... not the smartest thing I ever did...

 

 

Absolutely Bronxmom2-- Many have gone through severe episodes and then had a solid recovery. Treatment (various) according to the testimonials (research findings, etc.) helps and indicates there is recovery along the way. I am hopeful!!

Back to 100%--

T.Mom:)

[bronxmom2]

I was the single mom.

[EAMom]

Okay, that is a coincidence. The show was very interesting. It made me glad I didn't live in NYC though!

 

According to Sue Swedo, PANDAS kids do well if treated. She didn't delineate exactly what "treatment" was though (abs, IVIG, etc.). Nor did she exactly say what "well" is (80%, 90%, completely normal?). I also wonder if there is a difference in boys vs. girls once they hit puberty. Every PANDAS kid is a little different, which is one thing that makes this dz so tricky.

 

In some (more severe?) cases, if it goes on long enough (or the child past a certain age?) not all kids (so far) have complete recovery (we're still keeping our fingers crossed!) with IVIG. PMoreno and Worried Dad are a couple with kids who have had IVIG and not completely better. I don't know if a 2nd IVIG will do it.

 

Dr. K. thinks that those that doen't have IVIG will have problems into adulthood (esp. anxiety). I personally believe there are quite a few kids that are diagnosed as tourettes (treated with tic meds, not abs or IVIG) that will become chronically tic-ky (or have OCD into adulthood) adults b/c they are actually PANDAS and not being treated appropriately.

[michele]

Wanted to let everyone know I fought it out with the school IAT team and got the IEP for Other Health Impaired with a diagnosis of PANDAS, Tourettes and ADHD plus grades that were not meeting standards for first grade. He will get academic support in Math and language arts by a small group instruction support person( tutor). Plus OT at school once a week. They wrote in a few accomodations like extra time and checking for understanding of assignments. The rest of my concerns they say they will pass on with a transition form teacher to teacher. I am thinking this is a positive gain because he will have less frustration and stress over school work because he will have more success in school. I know I made a few people mad along the way but if he is happier and more less stressed then it will be worth it.

Michele

 

 

Hi Bronxmom (also Michele),

 

I would think if your son's learning issues are from PANDAS that IVIG would help. I know "Jena" said that the IVIG really helped her child's handwriting. In my dd's case I don't know if PANDAS is the cause of her handwriting/spelling issues or if it is merely compounded things by adding an extra fine motor component.

 

If IVIG helps my dd's spelling/handwriting that would be a big bonus for us.

 

My dd doesn't have quite the "empty sheet" anxiety that your son has. When she does write she has no problem thinking up stories/poems. Once you can get past the illegible handwriting, spelling, margins, random capitalization what she writes is usually very well written. It seems that it is the physical task of writing itself that is the big problem (and so much effort). She tested at the 1st grade level (she's in 3rd grade) on the Rosner test of Visual Analysis Skills (fine motor and spatial planning...important for writing and copying.) She also tested at the first grade level on the Rosner Test of Auditory Analysis (reduced phonemic awareness) which may account for her trouble in learning to read (in K, 1st) until she became a fluent sight reader (and now she reads well above grade level).

 

I would call what my dd has Dysgraphia as well. For some reason the neuropsychologist didn't want to call it that. Maybe they felt that oversimplified her situation?

 

Michele, she did fine on the Beery VMI. Her visual perception skills were above average (we got them tested at UC Berkeley Optometry b/c the OT thought this might be part of the problem).

 

My dd's artwork is pretty good, although it does tend to get messy! During the height of her bad PANDAS episode last spring her drawings did get weird and distorted. This seems better now.

 

Bronxmom...is your son's school public or private? I did see a show about NYC kindergartens. It was amazing what these kids/parents had to go through to get into good public/private schools. Ha ha...in Northern Ca we just have to shell out big bucks for an expensive (but often small) home to get into a "good" school district...