ratlenhum

My son takes it like a champ but he's used to IVs. He gets weekly chelation IVs. The diagnosis code for PANDAS is 279.8 but it won't get you covered by insurance. Your doctor may need to find something else with he immune system that he can diagnose or he needs to be creative with his codes if he's willing, otherwise you pay out of pocket, like we do. And it HURTS us more every month than it hurts my son My son threw up twice after IVIG and both times it was on the 3rd day after his first IVIG. No problems since

The AAP highly recommends that if the rapid strep is negative then the 72 hour culture should be done. My son's doctor refused and my son's strep went untreated. Now we're playing the PANDAS game and it sucks. Because my son has PANDAS on top of autism.

I posted this the other day and the post is gone. We are using Privigen and I'm not sure if it's doing what it needs to. I wonder if anyone here used a product before privigen, then used privigen. Did you see a difference? Did it work the same? thanks

Prospective identification and treatment of children with pediatric autoimmune neuropsychiatric disorder associated with group A streptococcal infection (PANDAS). Arch Pediatr Adolesc Med. 2002 Apr;156(4):356-61. "BACKGROUND: The current diagnostic criteria for pediatric autoimmune neuropsychiatric disorder associated with group A streptococcal infection (PANDAS) are pediatric onset, neuropsychiatric disorder (obsessive-compulsive disorder [OCD]) and/or tic disorder; abrupt onset and/or episodic course of symptoms; association with group A beta-hemolytic streptococcal (GABHS) infection; and association with neurological abnormalities (motoric hyperactivity or adventitious movements, including choreiform movements or tics). OBJECTIVE: To assess new-onset PANDAS cases in relation to acute GABHS tonsillopharyngitis. DESIGN: Prospective PANDAS case identification and follow-up. RESULTS: Over a 3-year period (1998-2000), we identified 12 school-aged children with new-onset PANDAS. Each patient had the abrupt appearance of severe OCD behaviors, accompanied by mild symptoms and signs of acute GABHS tonsillopharyngitis. Throat swabs tested positive for GABHS by rapid antigen detection and/or were culture positive. The GABHS serologic tests, when performed (n = 3), showed very high antideoxyribonuclease antibody titers. Mean age at presentation was 7 years (age range, 5-11 years). In children treated with antibiotics effective in eradicating GABHS infection at the sentinel episode, OCD symptoms promptly disappeared. Follow-up throat cultures negative for GABHS were obtained prospectively after the first PANDAS episode. Recurrence of OCD symptoms was seen in 6 patients; each recurrence was associated with evidence of acute GABHS infection and responded to antibiotic therapy, supporting the premise that these patients were not GABHS carriers. The OCD behaviors exhibited included hand washing and preoccupation with germs, but daytime urinary urgency and frequency without dysuria, fever, or incontinence were the most notable symptoms in our series (58% of patients). Symptoms disappeared at night, and urinalysis and urine cultures were negative. CONCLUSION: To our knowledge, this is the first prospective study to confirm that PANDAS is associated with acute GABHS tonsillopharyngitis and responds to appropriate antibiotic therapy at the sentinel episode."

What brand of IVIG is Dr. K using? When we saw Dr. Gupta in April he just switched all his patients to Privigen and that's what we're using.

Thanks for the kind words everyone. I've actually posted here before for a while but couldn't remember my user name, and had to start a new one. My son gets his IVIG at home. We flew from NY to CA to see Dr. Gupta. Our DAN sent us out there rather than write the script himself for some reason. He is primarily getting it for the PANDAS. His PANDAS profiles are the "worst I've ever seen" according to 2 different doctors and one physicians assistant. Even his pediatrician, who knows nothing about PANDAS but knows what the antibodies they tested for are, said they are horrible, scary numbers. We were basically told that my son's brain is on fire and that IVIG would be the fire extinguisher. I emailed with Dr. K a while back, when the PANDAS first started and he told me something along the lines of because of teh co-morbid condition of autism, he really wouldn't see my son. I thought that was odd. We didn't do a steroid burst according to how I hear others describe it. My son did do 4 Bicillin injections and saw nothing. Then he did 30 days of zithromax and saw nothing but GI issues. He did do a medrol pack and saw nothing with that either. Is there a set protocol for the steroid burst? Sarah, I'm definately curious to know why they don't think IVIG will help in your case. Is it PANDAS in general or just your particular situation?

Wow, that was harsh. I guess 4 years later I still haven't gotten used to the autism diagnosis. 4 years isn't gradual enough. In my son's case I had a normal functioning child, then he got his MMR and within a week he was gone. 4 years later, my son who was getting much better and close to functioning like a typical child (is anyone really "normal?" My son is "normal" he just happens to not have developed typically) got slapped in the face with PANDAS too. So I lost my child twice. Please choose your words carefully. There just may be other parents of children with autism, who also have PANDAS, and my not have had that chance to get used to things gradually. It wasn't any easier for us. The way I look at it, you had a typical child and know what it's like, and know what your child could say, think and feel. I never had that, and may never, and I don't think I'll ever "get used to" that We've done 5 IVIG's and will have # 6 in 12 days. Gradual improvements. It's not a magic bullet. I've only heard of one kid that was miraculously cured by IVIG and it took 17 infusions.

The problem with oral glutathione is first off, you don't know how much the body is absorbing. Secondly, it can cause major gut yeast. We do IV glutathione and also use the lifewave patches. They help stimulate the body to make it's own glutathione. My son wears one Mon/Wed/Friday nights http://www.lifewave.com/hubsmom Any questions, feel free to email me