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IVIG and social deficits


libera

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Hello,

Newbie here . . . dd13 got PANDAS dx in August after years of trying to figure out what what was wrong (I am sure many of you have been there). One of the things we most struggle with is the social deficits . . . over the years, what I have heard is "Asperger-like" but not ASD. And that darn stare. What I really want to know if anyone saw a great improvement with the social deficts after IVIG. Part of me thinks that the deficits are really because her brain has been inflamed all this time, and she missed out on the social learning process. If that is the case, then IVIG won't magically cure the social deficits, but maybe will give her the platform to be able to learn them.

 

Right now, we have put IVIG on hold because of the cost. She is supposed to start high school next year, and I really want her to be a much better place then we are now. If IVIG will help in this regard, I am going to really push for it (DH is somewhat of a skeptic).

 

As a side, I have seen a improvement with the abx . . . she actually began brushing her hair.

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we do a lot of biomed for healing but for social we use either prescription oxytocin (a bit expensive) or prescription propranolol (not expensive) - they work differently and can probably be helpful together for different reasons, some people also use abilify, we dont see social benefits we see calming though many people do see social benefits we could not get to a hi level with abilify --

 

f w i w we did a lot of ivig 2 1/2 years monthly and there were no benefits for socialization though we did see benefits in cognition and mood though our kids were already socal, but sick

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It helped our DD tremendously.

 

She had many ASD symptoms (loss of language) and inability to thrive at 2 1/2 years old. She started Lyme et al treatment at 3 1/2 years old. She is now 8 years - 4 months. At 6/7 years old she still had difficultly connecting with peers, was very impulsive, mood liability and typically played down for her age (younger children or children who were immature for her peer group), had learning disabilities but was talking. She started monthly IVIG at 7 due to immune deficiencies subclasses 1 to 4, IGA, IGM, overall serum. She just started 3rd grade and is at standard or above standard at the beginning of the school year: writes at 4th grade level, tests in 80% for math and is reading at grade level standard for beginning of year, is musically gifted (true for many ASD kids).

 

She is extremely social now with more friends then we can contend with. It was life changing. We tested her immune function regularly and her ongoing deficiencies got us approved and she receives treatment at home with a nurse every three weeks.

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That "damn stare" should be evaluated for absence seizures and/or Bartonella. My daughter had them. Unfortunately I did not realize that this is a concern, until many years have passed. We are treating her for Lyme/Bart and seeing positive results. (hoping for the best!)

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