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gwr

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Everything posted by gwr

  1. Thanks all for the information, this is very useful and I appreciate the thoughtful responses. I have since been advised that we should check homocysteine levels and then go from there. And I am also going to order the 23andMe kit. As to the question about the Zoloft dose - we we were told 25 mg for 2 weeks and then 50mg after that (with the understanding that for OCD treatment the dose could go up to 200mg). After 3 days on 25 mg there was an improvement...far from normal but little improvements, such as the ability to sit at the dinner table, the hyperventilating all but stopped, etc...so after 2 weeks we never increased the dose...but did increase right before the start of school to 37.5mg, Again this is for a now 13yo. This reaction was unexpected - ASO and anti-DNase B titers were high, but we never saw improvement like this with long-term antibiotic therapy.
  2. Hello, I am a frequent peruser of this forum, though an infrequent poster (this may be my second). We have been dealing with PANDAS/OCD for many years now - with the help of the physicians at MGH in both ID and psychiatry. After a particularly challenging episode last year my son (now 13) found some relief with a low (arguably, non-therapuetic) dose of Zoloft. Due to his swift and positive response (atypical for strep-induced OCD, I am told) we had a GeneSight test performed to get a possible sense of how he might react to other medications - surprisingly, nearly all of the SSRIs were in the Caution or Avoid category. The other useful bit of info was related to a mutation in the MTHFR gene (specifically "homozygous for the T allele of the C677T polymorphism). Both the subscriber as well as the advisors at GeneSight could not offer any clear information as to how to "treat" this i.e. folic acid vs methyl folate, etc. I am hesitant to make an appointment with a geneticist to discuss only this single, and common, gene mutation. So...I am wondering if anyone else on this forum has any experience with managing this mutation, with a combined use of folate/B vitamins and SSRIs, as it relates to OCD/anxiety...or, has any recommendation for a provider in the Boston-area (Cambridge/Arlington) who is well-versed in recommending supplements for teens. Thanks in advance.
  3. Hello, I have read bits and pieces from this forum over the past couple of months, as I struggled to understand what exactly was happening with my son (10 years old, 4th grade) who had hit a wall with panic, obsessive worrying and separation anxiety...the low points included near-catatonic states in the morning, daily gagging and vomiting. Diagnosis from the therapist (primarily for 504 plan purposes) is Panic Disorder w/o Aographobia with a rule of out of GAD. He had his tonsils removed at age 3, has never had a strep infection, but his strep titres (which I asked the pediatrician to check after consulting with an acquaintance) were elevated slightly, around 400 each. The only other possibly relevant bits of information are that he has a genetic predisposition for anxiety, had a sinus and staph infection (treated for MRSA but not cultured) w/in the past 6 months, and his siblings get strep annually, with his older brother having had it throughout his bloodstream several years ago. He has had intermittent tics over the years...very mild, non-disruptive, and nothing baseline, but looking back they began the year his siblings had strep the most. He has been seen at the pandas "clinic" at Mass General in Boston, given a 23 out of 40 for OCD (by the psychiatrist)...this doctor's gut reaction was that this was not pandas, however there were key components to the story that made him hesitant to dismiss it, so he referred us to the ID doctor at the clinic who has since put him on 30 days of zithromax (he is allergic to penicillin and bactrim). We are 3 weeks in to that 30 days, at which point I will need to consult with the ID doctor and decide where to go from there. It's difficult to asses if he has improved over the past 3 weeks - he had done well with the CBT alone, and while the worries are still occasional since starting the zithromax, the vocal tics are mostly gone, and things that used to cause stress (such as eating dinner) for years before this big flare have dissipated a bit. It's the latter that makes me think he is responding in some way. I should add that he has not been on an psychiatric medication, however we were considering it, and he's been on probiotics since before the antibiotics, and we tried daily flax oil doses without success (they came right back up). I guess my question(s) to all of you wise and experienced folks, does this sound like pandas? At the end of the day I think it will be my decision as to what to do with antibiotics - what would you do given this case history? What other things should I be asking/considering? While I feel that we are at the right place with MGH, we have a pediatrician who has no experience at all with pandas, and a psychiatrist and a therapist who, while fabulous at what they do, have doubts. Thanks very much for your insight, and for listening...
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