pr40

we are giving steroid taper for the first time. any advice of what to expect? should we give it in the morning or evening?

to answer "fencelatitude"'s question: how did we determine the need for b12? we did not determine it before trying. We gave both dd and ds 1000mcg of methylcobalamin vitamin b-12 lozenge just to try. The effect was immediate. they took it everyday for two weeks. Unfortunately, the effect did not last. It decreased during a bout of croup. Now, we will be trying the same dose every other day. As I understand it, mb-12 works for some kids, but not for others.

Our ds4 has some similar behaviors. We had some positive effect with he following, Abx, metylcobaltium b12 vitamin, gluten free diet. we think that ds4 has PANS. good luck!

our dd8 was diagnosed with PANDAS and she has RLS. When she is on abx and her PANDAS symptoms all but disappear, RLS disappears too. How is your son doing on abx?

yes, please, post it.

unfortunately, I will not be able to make it to the meeting today.

I don't understand the mechanism. There is much on this forum related to MTHFR genetic mutation. there are few good lectures on Youtube that explain the basic process of methylation in which MB 12 takes part. MB 12 had remarkable results with some autistic kids. my understanding is that you can be deficient even with a meat diet.

mb 12 is methylcobalamin vitamin b12

Our ds 4 and dd 8 are on abx. 4 days ago, we started them also on mb 12, 1000mcg once a day. The effect was like a switch was turned off. Suddenly, they stopped and became nice, easy going, kind kids. We could not believe it. I still cannot. Now, we are afraid that this effect is not going to last. Did you see this with your kids? what happened?

fixit, can you comment on the videos on the site by any chance? they present a miracle-like recovery of speech, and what seems like a cessation of autism. can you confirm those effects from your experience? thanks.

I am wondering if anyone had experiences with Dr. Neubrander (the one, as I understand, who was the first to use methyl-B12 for Autisim)? Hi web-site lists PANADAs as one of the conditions he treats. http://www.drneubrander.com/PANDAS.php

This is what our Dr suggested about vaccination "Specifically, I suggest that they (you) (1) avoid, if possible, multiple vaccinations at the same time and (2) to screen her for any inflammatory condition. If does have an inflammatory condition I would recommend that you put off her vaccination until she has fully recovered." Our DD did not have IVIG yet.

Please, e-mail me the location info. thanks

In my experience, treatment of PANDAS is trial and error. Abx., steroids, anti-inflammtories, NAC, and so on. If I were in your place, I would try and see if it worked on me. ALso, you may want to contact PANDAS drs. Dr. T may be easiest to reach by phone. Also, there is that popular case now of auto-immune encephalitis which happened to a person in her 20s. good luck

Please, tell us what you tried and what kind of success you had with treatments of MTHFR mutation.

We have an apt with Dr. B for our son in May which is a 6 month wait. So, I need to instruct his pediatrician what kinds of test to order. Is there a special name for the test for mycoplasma? The same question for MTHFR? thanks for your replies, Dedee and LLM.

Our dd 8’s PANDAS is more or less straightforward. After she started abx, we saw steady improvement over time. She has what seem to us as not terribly serious behavioral issues. Our ds4 case, PANS probably, seems to follows a different route and I want to seek your insight about it. When he started on abx, the extreme of his behavior (meltdown after a meltdown) had disappeared. Now, we seem to be able to direct him and, in a way, discipline or educate him. But, every day, and every thing we do seems also to be taking us to the beginning as if he cannot learn or build on what he was able to do previously. We read Explosive Child and it taught us how to help him during the worst episodes pre-abx. On abx, ds4’s behavior includes the following: 1) using deep or “other” voice 2) throwing things around 3) doing things others don’t want done 4) what seems to be willful disobedience 5) going around and cleaning. This while he is doing relatively well in school, where he is not as much of a disruption as he is at home. I should add that he changes a lot in a small amount of time and that I cannot predict or understand those changes. His blood tests done during the worst exacerbation showed nothing unusual, ASO, ANA Titer, DNAse, all normal. We think he has PANS for two reasons: because his sister has PANDAS, and, second, because his behavior got out of hand during a horrible cough episode within a month. He is currently on second dose of abx, Augmentin and Zytromiacin. When we stopped the first 30days of abx, penicillin, he had reverted to his horrible behavior which I have no other term for but out of hand or “crazy.” We are not sure what to do and want to see if someone on the forum can recognize this behavior and give is some insight into it. Thanks in advance.

I have to second the previous post. Our DS4.5 had similar symptoms before abx. After abx, during the first month, which is where we are now, symptoms became much more manageable. There are days when they are completely gone. I am not sure what the future holds, of course.

Yale Child Study Center that treats PANDAS/PAns accepts Medicaid. You may want to contact them.

perhaps I am missing something but my understanding that gut issue is actually an microbial flora issue. you want to create a "good" as opposed to "bad" flora. There is an article in the last issue of the New Yorker about this. What the article shows is that no one seems to know what exactly makes flora "good" and how to create it. Apparently, taking probiotics that have yogurt cultures may not be enough. This would be in addition to GAP diet not as an alternative to it.

our daughter's behavior (anger and separation, rivalry with a younger sibling, and so on) was very similar except that she also had restless leg. all blood results were fine but she did have a documented strep two months before the onset on major symptoms. When she started 250mg penicillin x2, all symptoms have subsided after 30 days. she is still on it. She is also taking 600mg NAC in the morning, and melatonin to sleep. You may want to see a Pandas/pans specialist.

We are also trying to change from an HMO. Our options include POS and EBPA. I don't quite understand the difference btw the two. Does anyone have experience with these? What I think I get is that EBPA has the annual maximum which is under $6000, but then I am not sure if we can go to any dr and if they cover 100% of the cost drs charge us or 100% of the customary and expected price?

EmilyK, if I may ask. You are in Rhode Island, we are in New Hampshire. Did you use dr B or someone else?

No, we did not check MTHFR mutation. I know little about that mutation and how it might influence behavior. what was the proper treatment for it?

we found Dr. Natter, rheumatologist, at Tufts Floating Hospital for Children. He was very thorough in his examination, covered all possibilities, and, finally, willing to consider PANDAS diagnosis. He helped us to see Dr. Lekman at Yale and seems a very nice guy. But he did not have much experience with PANDAS/PANS before seeing us. I can give you more detail if you PM me.