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Nela

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Posts posted by Nela

  1. cara615,

     

    How long did you stay on the diet or is your son still on the diet? We are going to run some bloodwork (per our Integrative Docs orders) to check for methylation issues. My son has 35 different food sensitivities (food allergy testing through blood). I did keep him on a GFCF diet for a few months but saw no change regarding tics. We are supplemention with Bovine colostrum, Vitamin D3 4000IU (his level was 13), and Nystatin here and there to control yeast levels. His arabinose was high and his amino acid levels were almost 0. We have not supplemented with amino acids though. So hard to decided what to do.

  2. Mpatti,

     

    I have not found a single thing to help with the tics. We have vocal ticcing as a main concern. It is constant and he never gets a break. That's why I am researching like crazy to see if he has an infection/virus that we are not aware of. He is not taking any antibiotics so far, and that concerns me. We have a pandas diagnosis from Dr. K in Chicago, but he is a big proponent of IVIG as a treatment at a later age.

  3. Mpatti,

     

    It seems as if you are talking about my son....He has his tonsils and adenoids out at 3.5 due to sleep apnea. He has suffered and continues to suffer from sinuses infections/congestions. I also have a hunch about strep in his sinuses. We have negative strep results though. Did you ever run any other tests on your son? What other treatments were helpful to you? How is he doing now?

    Thanks

  4. I am about to contact Dr. K and ask him to run more bloodwork for our son. I have contacted other doctors, but have decided to stick with him for now since he is only 1 mile away....(He is a great doctor!) I just have to push him to run more tests. Can anyone please advise me on the test we need to run. We have already done Strep, and Immunoglobins. I am thinking of ruling out Myco, Lyme, Epstein Barr Virus....but wanted to make sure we run everything since my son hates having blood drawn (don't blame him). How about asking him to have other members of the family tested as carriers of strep? I would love any advise you might have from your experiences. Much appreciated.

  5. Thanks everyone for their suggestions. We saw Dr K and he's 90% sure my DS has Pandas. We have been dealing only with motor and vocal tics for 1 year now. We ran bloodwork for strep and it all game back normal. We we're put on 14 day trial of Augmentin 600 ES and saw some mild improvement. He's not giving us any more antibiotics for now but wants to wait and see until my DS is old enough to try IVIG (he says that there are more results with IVIG once the child reaches 6 ). So now we are doing nothing and I'm not comfortable leaving my son go untreated. His tics are high frequency but not high severity. They drive me crazy.

     

    I want to have more bloodwork done on him like test for Myco, Lyme, cocksaxie virus and whatever else might be needed to rule out other infections. Dr K is a big believer in strep induced Pandas and not Pans in general.

     

    I don't know where to go from here. Please help. My heart breaks for my DS.

     

    Thanks

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