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chloe5763

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Everything posted by chloe5763

  1. Thank you SO much LLM....you are such a huge help to those of us struggling to make sense of this information!!!
  2. This is really fascinating information....overwhelming yes but fascinating!! I thought I'd put her info out there to see if anyone else with similar PANDAS issues had the same...I'm hoping to have some time this weekend to really dig into the research... +/+ ACAT1-02 BHMT-02 BHMT-04 BHMT-08 MTHFR C677T SHMT1 C1420T VDR Taq +/- CBS A360A COMT H62H COMT V158M MAO A R297R MTRR H595Y MTRR K350A MTRR R415T Are there any Dr's besides Dr Yasko who will review your results and recommend supplements, especially for kids? It looks like Dr. Yasko is very booked up and I assume that we would need to order her lab work rather than the 23 and me? Onward into research land!!!
  3. OH thank you SOOO much! I knew someone would know exactly what to do! So in a quick glance DD does have the mutation +/+ for MTHFR C677....are we finding this pretty common with our PANDAS kids? I've tried a few supplements for her with little or no success but that was just based on other people's suggestions. I will look into what might help based on her 23andme results. This is really all fascinating....I'd love to take a week off from work and go through every little detail....Thanks again for the links, they all were very helpful!! Kathy
  4. Happy Monday Everyone! So our data is in from 23andme....and I have no idea what I'm looking at! Can someone give me a quick tutorial of where I should even begin looking? I'm completely overwhelmed!!! It all seems like great information but I am not seeing where people are finding out what thier kiddos might need regarding suplements and that sort of thing....I wish I could blame it on Monday morning but I've been looking at it since last week..... Thanks in advance! Kathy
  5. Thanks so much for the responses....it's been a whirlwind week to say the least! There is so much to think about, it's a full time research job it seems to try and get our kiddos some relief! I tried to get an appointment with Dr M but they are not taking new patients so we are on the wait list. Dr O is a bit of a trek for us but I will try to get an appointment there...We adopted her at 5 months old from Guatemala so we don't have any family history available and she has been drinking soy milk since she was an infant because cow's milk would cause eczema. Things have been relatively calmer lately since we're in the new house which is in a super kid neighborhood so the carrot of being able to go outside and play has been very helpful in keeping her behavior in check. So, we continue and hopefully Dr. O can make some suggestions for us.....It's so tough because when she's good....she's AMAZING and when she rages she seems tortured.....so sad and scary!!!
  6. Hi there! Our daughter is now 7 and has been on zithromax for about 2 years now, 250 mg 1x/day. This is per Dr. T who we visited back when we first noticed her tic and behavior issues. For most of this time she has been relatively stable but lately is melting down over nothing and having the scary thoughts again. Now, we have just built and moved into a new house and went on a big family vacation...both good things but still things that changed the "normal" routines which can be stressful. I know we should get bloodwork done again but we had a hard time getting in to see Dr. T as he is very busy....are there any other really good PANDAS Dr.'s in the CT/NY/NJ area (we are in CT). I worry that we may be undertreating her for the PANDAS but I also worry that maybe it's NOT and that she might actually have some other issues that we are not pursuing since we believe it to be caused by the PANDAS. I am torn between thinking that she can't help it when she will completely lose it and start slamming doors, screaming, hitting and being verbally abusive to us and her little sister and thinking that she can control it and is just trying to control us....We try to be consistant and give her one warning about taking away a privilege and if she continues we take it away. But, lately she is losing a lot of things which she hasn't over the past say 6 months....I guess I am just looking for some advice on what the next step should be.....she definitely needs the abx to be OK, we have tried to skip a day here or there and she goes downhill FAST....so does that difinitiely mean PANDAS? I am just so worried that we should be looking for something else but we did 2 rounds of blood work for Dr. T and nothing really jumped out at him. She has always had dark circles under her eyes which get worse from time to time and yesterday after being fine all day, had a huge meltdown just before dinner and then fell asleep for around an hour at 6pm. When she woke up she was fine and appoligized for her behavior.....I took away a major privilege and I guess I am feeling guilty since I just don't know in my heart if she has control over it.......very sad situation all around...... Thanks for any suggestions you may have, Kathy
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