Back with Questions about IVIG and prognosis

[Stephanie2]

I have not posted in several months b/c we have had such dramatic ups and downs and my husband has been out of town for 2 months.

 

Anyway, as some of you may remember we are seeing Scott Smith, PA. He is with the Bradstreet group in Melbourne, FL. I highly recommend this group, especially Scott. He follows all of the studies (Swedo, etc.), sits on the medical advisory board for the pandas resource network website, speaks at national conferences and has two pandas boys of his own.

 

Well, I just started both of my boys on prophylactic zithromax and so far so good (only been 2 days, though, so we will see how the rest of the week goes). My issue is that my son's do not tolerate antibiotics and certainly not high-dose long-term abx. My 5 year old gets bacterial and yeast infections that create even worse symptoms than the strep! So I am thinking that we will be fast-tracking it to IVIG (already did the steroid burst which helped for 3 weeks). I don't think we are ready to do IVIG in my 2 year old because he seems to do well with one round of antibiotics and then he is good for a few months.

 

So what do you think is the prognosis with IVIG for a 5 year old who has had PANDAS (undiagnosed) since the age of 18 months (maybe even 15 months). I hear that the best outcome happens with rapid treatment, but he has had pandas now for almost 4 years. Do you think IVIG will work for him?

 

We have BCBS and my son's immune testing came in just above the required numbers so I'm not sure what that means as far as coverage. I am getting my 2 year old tested soon. I hear that IVIG is $2000 per infusion, what are the chances that he will need them monthly? Just how far can that initial treatment get us?

 

Thanks for any input!

Stephanie

[peglem]

My issue is that my son's do not tolerate antibiotics and certainly not high-dose long-term abx. My 5 year old gets bacterial and yeast infections that create even worse symptoms than the strep!

What kind of bacterial infections does he get while on abx?

 

So what do you think is the prognosis with IVIG for a 5 year old who has had PANDAS (undiagnosed) since the age of 18 months (maybe even 15 months). I hear that the best outcome happens with rapid treatment, but he has had pandas now for almost 4 years. Do you think IVIG will work for him?

 

We have BCBS and my son's immune testing came in just above the required numbers so I'm not sure what that means as far as coverage. I am getting my 2 year old tested soon. I hear that IVIG is $2000 per infusion, what are the chances that he will need them monthly? Just how far can that initial treatment get us?

 

I'm not an expert about IVIG, but generally, what I hear from other parents is that a once or twice IVIG infusion at higher dosage is what is most likely to work for PANDAS.

Usually lower dose monthly, or every 3 week infusions are treatment for immune deficiency- but it sounds like immune deficiency is not what your child is dealing with?

 

Insurance will cover IVIG for some conditions. It seems to depend on the insurance policy and how the practitioner codes it.