NIH PANDAS study participants -- what is your kids status today?

[pr40]

I am curious to hear if any of PANDAS NIH study participants are on this forum today. If you are, would you mind telling us how you child is doing now?

 

[Kimiejoe]

I just provided an update. See post regarding update to 9 year old with Pandas. The IVIG he had was through NIH.

[bigmighty]

Here is the update. Sorry in advance for the length -

 

DS had his first IVIG at NIH in May of 2011 at age 12. He seemed only slightly better after that. DS had his 2^nd IVIG at NIH in June of 2011, around the time of his 13^th birthday. Within a week after that 2^nd treatment, DS was 85 – 90% well in terms of resolution of PANDAS symptoms. Additionally, his lifelong textural sensitivities diminished greatly and his long-time difficulty in processing foods containing corn disappeared entirely. In July of 2011, DS got Strep A, while on prophylactic Azithromycin prescribed by NIH. All of his OCD symptoms quickly returned in full along with the sensitivities, with the addition of extreme paranoia. By the time we left the study in November 2011, DS remained in an exacerbation of PANDAS symptoms more significant than the initial exacerbation that brought us to the NIH study in the first place. His anxiety was moderate to high and his rituals took up 4+ hours per day.

 

In December 2011, DS was placed on Augmentin 875 2x daily by Dr. B. In February 2012, DS continued on Augmentin, but added a three week steroid taper (starting at 35 mg prednisone daily). On April 16, 2012, DS’s light switch simply turned back off. He went from full OCD one moment to literally zero OCD the next. His symptoms resolved as quickly as they arrived, after 16 1/2 months of OCD and anxiety. In April 2013, DS reduced to Augmentin 500 2x daily. In June 2013, he attempted to reduce to Augmentin 250 2x daily. Within 48 hours of the reduction, the majority of the PANDAS symptoms had already returned. We returned DS to Augmentin 500 2x daily, and the symptoms all gradually disappeared within two weeks. In early August 2013, DS was reduced to Augmentin 875 one-half tablet 2x daily. That slight reduction appears to have been successful. So, DS is in “remission” and doing well, but it appears to be dependent upon continued use of Augmentin. At Thanksgiving, we will try again to reduce to Augmentin 375 2x daily and see if the symptoms return.

 

In addition to PANDAS, DS has been diagnosed with a Common Variable Immune Deficiency. His overall IgG hovers in the high 500s to low 600s. At present, we have been advised not to treat the CVID unless his IgG drops lower, as it is suspected that the low-dose IVIG used to treat the CVID might end the current PANDAS remission. Additionally, DS has recently been found to be compound heterozygous for the mutations C677T and A1298C in the MTHFR gene. To treat this, DS added liposomal methylb12/methylfolate drops about one month ago. DS has experienced a significant increase in social cognition since the introduction of this supplement.

 

DS is now 15 and a sophomore in HS doing well socially and academically. He has been on antibiotics for nearly three years, so far.

[EAMom]

BigMighty...what dose was the NIH using on your son (Azith) when he got strep, and how much did he weigh?

[bigmighty]

At the start of the NIH clinical trial, they were recommending only 500 mg per week of Azithro. DS weighed in the 72-77 pound range at that time. They wanted him to take it all at once in a single dose, but he was on liquid medication back then and it was multiple syringes of medication and it upset his stomach. He ended up getting permission to switch over to taking half of an Azithro 250 pill 4x weekly. He was only on it for a brief period before he got strep and was switched over by ped to a high dose of Cefdinir.

[bigmighty]

I heard from NIH staff that DS was not the only one in the clinical trial who got strep after IVIG. I heard from other parents of kids in the trial that NIH changed its recommended prophylactic antibiotic and dose at some point during the trial, but don't know to what.

[EAMom]

Well...I certainly hope this comes out in the paper...that these low doses of prophylactic antibiotics don't prevent strep in these PANDAS kids! IMHO a 77 pounder (unless very PANDAS-wise stable for a few years) should get at least 250mg/day Azith...even 500mg/day should be considered if symptoms are severe.. I also hope they realize that it isn't necessarily that Azith doesn't work (although that may be the case in the East Coast where there are resistant strains) but that LOW dose Azith doesn't work.

[bigmighty]

I suspect that they were trying to prove that IVIG caused the improvement, NOT the antibiotics. So they were going with the lowest possible dose so it could not be assumed to be curative and negate the rest of the study. I must say, we were devastated at the time though. To have DS back for a few weeks and then lose him again was awful. But I do understand their reasoning.

[otksmama]

Big mighty can you say more about the social cognition improvements you saw after treating methylation issues?

[bigmighty]

DS used to miss a lot of social cues. Talked too loud at times and seemed unaware he was doing it. Stood too close for others' comfort sometimes. If someone asked what he had done for a science fair project, he'd launch into the long-version with every last detail of his experiment instead of saying "Mine involved snow melt-off rates. What's yours about?" He would attend a group event with our family that included many others with whom we'd been friends for years, but he might attempt to hide behind me and would not make eye contact when others were speaking to him. Standard spectrum stuff. All of that disappeared within 48 hours of methyl b vitamins. Comments he has made since make it clear that he understands motivations and feelings of others and sub-text within conversations in ways he never seemed to before.

[otksmama]

Whoa, that's pretty powerful. We haven't done any testing. It feels overwhelming to me, but if it could help my child with those things, I WILL figure it out! Any tips? We are going to see a functional medicine provider next week. Can you tell me about how you tested, assessed results, determined appropriate treatment, etc.?

[bigmighty]

Doc said that the lab test for the two most common MTHFR gene mutations is a one vial blood-draw that would cost about $100 out of pocket. Ours only cost a $15 co-pay. The test is covered by most insurance including, I believe, medicare/medicaid. Perhaps you can ask the new provider when you go next week.

[pr40]

you can do your entire genetic code analyzed by 23andMe for $99 plus shipping. it is not covered by insurance as far as i know

[momcap]

you can do your entire genetic code analyzed by 23andMe for $99 plus shipping. it is not covered by insurance as far as i kno

Just an FYI on 23andme - they don't analyze your entire genetic code, but specific parts of it, including MTHFR. Here's their explanation:

 

https://www.23andme.com/more/genotyping/

 

Hope this helps!

[Mayzoo]

BCBS did not pay for the MTHFR gene test. They determined it was not medically necessary as in their opinion it is experimental/investigational. Just an FYI, it depends on your insurance company in case you have BCBS.