bigmighty

Just curious - does he have MTHFR gene mutations?

DS was on ibuprofen for quite a while a few years ago. If we gave it to him 3x daily, he was able to function in the world, to some degree. Without it, he could not touch doors and could only walk single file. The reduction in brain inflammation caused by his taking the ibuprofen made a significant difference in functioning.

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 2nd IVIG at NIH in June of 2011, around the time of his 13th birthday. Within a week after that 2nd 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.

DS's changes were immediate. But we started him at 1/5 of the recommended daily dose. Switched to 1/4 daily dose and he "became" adhd overnight. Back to 1/5 of the recommended dose and all is golden. It's definitely a matter of finding a sweet spot.

We found out DS had MTHFR gene mutations after he had already gone into remission. Now that he takes methylb12/methylfolate drops, he has significantly better social cognition and is much quicker at identifying subtle innuendo.

DS has had 22 documented cases of strep from ages 4 to present (15). DH has had strep 1/2 dozen times as an adult, and was routinely checked every time DS popped positive during childhood, because DH was so likely to get strep from DS. So far, I have never had strep before. Tested many times. Whole family has been tested every six months for the past three years. Only DS has had it during that time period.

Forgot to add - after each IVIG, DS was extremely tired and run down. The 2nd was just as the school year had ended. But after the 1st, he missed two full days of school, then started attending just a few classes per day for the next couple of weeks. He would go to two morning classes for a couple of days, then two afternoon classes for a couple of days (he was in middle school at the time). So, beyond the two days off, he went to school only part-time for the next week and a half after that. Most of the teachers gave him work to attempt at home if he felt like it during his part-time days. So he really didn't fall far behind. I did end up doing some reading aloud of textbooks to him while he rested so that he could keep up with the academics. It is a good idea to prep the school so they know what to expect. Also, you'll need a doctor's note to the school to get permission for the flexible schedule. DS was told to shower every time he came home from school because of the reduced immune function post-IVIG. Also, NIH gave DS benedryl before each of the IVIGs. I hear that this is commonly done.

DS had HD IVIG 2x - both as part of the current NIH clinical trial. Each was about seven hour per day over the course of two days. In DS's case, since he was part of the study, he stayed in the hospital for the full week, as they were doing other testing. Most outpatient is seven or eight hours per day over two days in a clinical setting with the port for the IV left in overnight, so they don't have to find a new vein the 2nd day. For outpatient, the child gets to go home with you if local, or back to your hotel with you if you are visitors. I know some people arrange for visiting nurses to do IVIG in their homes, but have no experience with how that works. If you are doing IVIG, be sure to hydrate A LOT before, during, and after the procedure. Starting about two days before the IVIG, have your child drink 8 ounces of liquid every 90 minutes during waking hours. Keep it up for about three days after IVIG. The hydration reduces the risk of significant headaches. DS's personality changes during IVIG - as in he gets angry and upset for a while, followed by silly and very immature. During the anger, it was important that DH and I seem to think this was perfectly normal and not react to it or look concerned or upset. Only a small percentage of kids have the mood swings. But, just in case yours is one of them, it's good to be aware that it's a possibility, so it doesn't take you by surprise. Do you have specific questions? Let me know.

Our son is doing well so does not have many challenges at the moment. Here is the letter our doc put on file with the school last fall. Obviously, you can drop into this format whatever accommodations your child requires. When there's a clear and obvious medical issue, most peds are more than willing to allow you to draft the letter to the school and forward it to them to print out on their letterhead and sign. Along with other documentation, this did, by the way, qualify DS for accommodation on the SAT and AP exams. Date To Whom It May Concern: Child X is a X year old boy (DOB XXXXX), who is well known to our practice. In Month, Year, Child X received a definitive diagnosis of PANDAS Syndrome by the National Institute of Health in Bethesda, MD. His NIH diagnostic team included Dr. Susan Swedo and Dr. Paul Grant. PANDAS Syndrome is an autoimmune disorder that causes inflammation of the basil ganglia area of the brain. This results in behavioral, motor, and neurological challenges that are sometimes severe. Currently, Child X displays characteristics of motor deficit/hypotonia, and has significant struggles with math facts and rote memory. It would be appropriate to offer any accommodations that might assist him in his school and/or testing environments. These may include, but not be limited to: calculator use when calculators would not otherwise be permitted; the opportunity to use a keyboard on written assignments; modified PE assignments, as needed; and additional time on tests. If you have any questions, please do not hesitate to contact our office at the above number. Thank you for your consideration in assisting Child X in a successful academic experience. Sincerely, Pediatrician

Nancy, thanks for the "pyromaniacal" comment. I needed to smile today.

Looking for thoughts on whether this seems to be a solid plan. Would love some BTDT advice. DS 15 (now in remission after a 16 mo severe exacerbation) was on Aug 875 2x daily for over 14 months (and on numerous other antibiotics for the 12 months prior to that). Successfully tapered down to Aug 500 2x daily about six months ago. A few months later, tried to taper to Aug 250 and all of the OCD and paranoia came back within 48 hours. Ramped back to Aug 500 and symptoms receded in a few weeks. Two months ago, DS started breaking an Aug 875 in half and taking half in the morning and half in the evening. Managed to do that successfully. So, at present he is on Aug 437.5 2x daily. If his labs are okay in Nov, the plan is to switch him to Aug 375 2x daily around Thanksgiving (he would be taking 1 1/2 of the Aug 250 twice a day). In Feb, he would continue with Aug 375 in the morning but switch to Aug 250 in the evening. In May, he would then cut down to Aug 250 2x daily. In August, he would cut down to Aug 125 2x per day (breaking the 250 pill in half). If that is not successful, we would switch back to Aug 250 in the daytime and Aug 125 at night. We haven't discussed what next after that with the doc. I assume Aug 125 in the daytime only, then stopping completely sometime in 2015. I am very conflicted about this path. Part of me knows we're playing with fire. He is on florastor and eats yogurt daily. But I know it must be awful for his digestive system for him to have been and continue to be on high dose antibiotics for all of this time. He has had no luck with adding additional probiotics. They cause long-term systemic hives, nausea and vomiting. We have tried five different kinds now, all recommended on this site, but without success. So, there is a very real fear that he will end up with a C-diff infection or worse. On the other hand, when we tried to reduce antibiotics too quickly, we ended up on a potentially fast track to a residential program. If we stick with the antibiotics, he functions extremely well, is involved in school activities, does fine academically, and (with the addition of methyl b12/methylfolate drops for the recently diagnosed MTHFR gene mutations), is actually doing fairly well socially. DS really does not want us to mess with that. He's a sophomore in high school and an exacerbation would mean totally screwing up his academics, which might keep him from getting into college. So - I'm totally questioning myself and have no idea what to do or which way to turn. I have a kid who has been on high dose antibiotics for three years, and the tentative plan is for him to remain on them for at least another year and a half. WWYD or what have you done if in a similar situation? Many thanks for reading my brain dump/saga. - Suzanne

Thanks, all. All of the other brands indicate that they include Mannan Oligo Saccharides, as well. So they are not identical to Florastor, right? Just similar?

Hi. DS has been taking Florastor w/o difficulties, but it is expensive. Anyone know of a good brand of Sacc B that's less expensive and possibly a link to the seller? Many thanks. - Suzanne

Lice do not like Tea Tree Oil shampoo. They sell it at whole foods and elsewhere. Switch shampoos. Also, if you think there might already have been exposure, put mayonnaise all over your child's head very thickly and cover with plastic wrap for 30 minutes while she is in the bath. Then wash and rinse as usual.

While you are figuring this out, try ibuprofen 3x daily for a couple of days and see if there is any difference. If yes, it may be brain inflammation. See if one of your current docs is open to a steroid taper in addition to extending antibiotics.

I have shared this article with a few people http://thewalrus.ca/a-feverish-debate/

Okay, can I just say "eek!" that someone would take the focus off of the bar mitzvah. How inappropriate. I'd have been inclined to have responded with "Wow, I had no idea your wife had an expertise in exposure and response prevention. It's very rare that social workers have that specialized training. My son is not available today, but assuming that your wife really has all of the necessary prerequisites, I'm sure he'd be happy to interview her as a possible specialist." But, of course, in the middle of a busy day of celebrating, I probably would just have been left speechless..... So sorry you had to endure that.

DS takes this methylb12 methyl folate liquid drop in liposomal solution supplement in a beverage - no discernible taste - http://www.empirical-labs.com/product_p/liposomalmethyl.htm - He weighs 115 and takes 3 drops daily after a meal.

Yay! So happy to hear this report. Wishing that the rest of high school and on into college the story sounds much the same.

My son didn't improve until he'd been on Augmentin for 5 months and had been through a lengthy steroid taper, as well. Even then, it was months after the taper that he finally improved. Do they want to try steroids or consider continuing the antibiotics?

No idea. The PA At Dr. B's office told me on conference call about a year ago that the experience in their practice was that low dose IVIG would cause a relapse in PANDAS kids not experiencing symptoms. Since DS's CVID was deemed not bad enough to treat, I never explored the comment further. Glad you are w/Dr. L. Perhaps she can put in a call to Dr. B's office or send him an e-mail to inquire as to whether he has thoughts on that?

Can you check w/one of the known pandas experts and get an opinion? Maybe a call or email consultation? DS has low overall IgG. We were advised by Dr. B's PA that going on low dose IVIG would probably end DS's PANDAS remission. DS' IgG is in the high 500s, and we have not treated out of concern about the possibility of relapse. Since your DD's IgG is lower, it's definitely worth considering treatment. But it would be good to know if there's really a down-side. Hoping someone with more direct experience will weigh in here.

Any chance of just increasing the dose of Aug for a few days? What would the doc say about that?

DS had a 3 week steroid taper starting at 35 mg prednisone. Two full months after the end of the taper, his OCD subsided instantaneously.

DS did fine on one tablet 3x daily at that weight.