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Milleraj211's Achievements

  1. Does Dr T use this lab? I looked up the order form and it says you need a petitioner, which I am assuming is a doctor. Thanks!
  2. That's very helpful. Thanks for spelling it out for me. .
  3. Thanks so much for the responses. One more question: would you recommend running Yasko's test for MTHFR mutations or does the 23andme give you the same information? I've already ordered the 23andme kit, but was wondering over the last day or so if Yasko would compliment this or provide duplicate information. I guess I could also do the test through Lab Corp although I doubt I will be able to get it covered by insurance given our current situation (Kaiser HMO). Thanks very much!
  4. I was just wondering, other than MTHFR, what the most common genetic issues found among PANDAS children have been? Any data or insights appreciated. Thanks! Our story: We suspect ds3 does have PANDAS and are doing the testing, but know from past experience that he has a horrible reaction to extended antibiotic use - last time we did 5-6 rounds for ear infections he was regressing and I thought he would be dx with autism. He recovered, for the most part, once abx were stopped. The worst is Augmentin. Anyway, we've had an organic acids test done that had some mildly funky results but nothing that pointed to one of the very common metabolic disorders. Despite this, however, I strongly suspect there is *something* going on with him genetically/metabolically that really has a drastic effect on his health at times and has let to his mild speech delay and sensory issues.
  5. Just ordered the 23andme test kit. Thanks. Wondering if anyone has found Amy Yasko's protocol to be relevant for their pandas child? Thanks.
  6. One thing we did find was that his kappa and lambda light chain values were both low, although the ratio was in the normal range. Does anyone know what this means?
  7. Thanks so much for all the comments and suggestions. IgG subclasses were checked. They were IgG 1 - 371, 2- 107, 3 - 31, 4 - 4.3. Dd and I just had sore throats last week with small rashes on our backs. So last week three of the four of us were swabbed for strep, both quick and 48 hr culture, including my son. All came back negative. I will look into NC doctor as well as testing suggestion.
  8. Thanks so much for the response. I made an appointment with Dr Latimer for September. If anyone has any suggestions in the Southeast of who we could see in the meantime, I would appreciate it.
  9. Thanks for approving my post. I also wanted to add that I have put him on amoxicillin until I can find a doctor to offer us a road map on what to do - he got the first dose yesterday.
  10. Hello, We have a 37 month old son with what is now a slight speech delay as well as some sensory issues. He has had 13 ear infections that we know of and most recently a fungal infection in his middle ear. He has been my child that always gets sick - constant colds and too many ear infections. No hospitalizations though. We recently went through a round of infections and by the end the antibiotics had totally wiped him out. Horrible smelling diarrhea for two months, pica, and seemed to almost be regressing to a mildly autistic state. I got him on probiotics and pretty hard core nutritional supplements right away and did IgG food allergy testing and restricted the foods that came back as highly sensitive. He started to recover, his attention span is returning, he is cognitively advanced and is very social. Two weeks after he was off antibiotics, in March 2012, his sister contracted strep throat. He was not swabbed be because he showed no symptoms. This was during the period that his health was not doing well - major gut issues, etc. Four days after she was dx, he woke up with a pronounced verbal tic (repeating ending sound of words 3-4 times). The repetitions were rapid and he had a significant speech delay at this time - even I could not replicate his tic as rapidly as he was doing it so it was obviously questionable when professionals told me "maybe he was doing it on purpose". He had a normal MRI and normal micro-array. After that, the neurologist blew us off. After the verbal tic developed, he continued to progress in speech therapy and improve in some areas as his gut repaired but we started to notice other changes. He started hitting more and seemed to be too goofy or loopy at times. His verbal tic morphed a bit but continued to be present. He had trouble sitting still or attending and just seemed to be less "there" - hard to describe. He also developed auditory sensitivity, which we had never noticed before. In April he was exposed to fifths disease and started in a special needs preK due to adaptive and sensory issues (Basically hitting, scratching and tackling classmates) so Im not sure what else he was exposed to. Since then, we have seen more marked regressions in his behavior (very compulsive sometimes almost constant aggression, very bizarre comments, sometimes almost constant pretend play, and behavior when he is tired bordering on what I might consider psychotic for lack of a better word (scratching my face over and over at bedtime and laughing maniacally). Last week was one of the most horrible of my life - he was making so many bizarre comments, seems to be hallucinating one two occasions, and i asked my husband to do bedtime becuase his behavior was so disturbing. I also noticed visual stimming or tics for the first time - eye widening, shaking head vigorously with eyes open, and more rapid eye movements. The day he seemed to hallucinate, I put him on an ibuprofen trial and saw marked improvement over the seven days. I've been back in to see my PCP and other peds in the practice 12 or so times since March, but they are continually blowing me off and sending me to behavioral health. I'm officially "that crazy mom". Today, seven days after starting the ibuprofen, I feel as though I have my little boy back but desperately need to find a physician willing to consider PANS or PANDAS as a possible diagnosis so we can figure out if that is what is going on with him and get started ASAP on treatment if it is, in fact, PANS. My question is: what kind of doctor do we see for dx and who do we see for treatment? Anothrer neurologist for both? Pediatrician? Can anyone make a recommendation in Atlanta? Also, we have Kaiser HMO so they will cover nothing that is not intitiated by them (and according to my dev Ped at Kaiser pandas does not exist). Finally, when should we start with the genetic testing (my dd has ADHD and SPD, so there definitely may be some genetics involved) and can I do this on my own? Btw - igg and igm levels were slightly low, but really right at border of normal, strep titers were not high. So that did not help with convincing pcp that there was an issue. Waiting on a few more test results now that i was able to convince pcp to run. Thanks so much!
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