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Everything 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. Is he taking prophylactic Clindamycin then? What count/billion Florastor do you give him? Thanks
  4. 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
  5. You are right Philamom. I really want to do the Igenex so I will have our chiropractor sign the form, then if necessary, seek treatment from an LLMD. Are viruses usually found through blood testing? Which doc have you found the most helpful in your case?
  6. Mpatti, Why clindamycin? Did you every figure out what infection was present?
  7. Does anyone in this forum have a child who only exhibits tics as a Pandas symptom? If so, what have been the best treatment options for you (antibiotics, steroid burst, IVIG ?
  8. 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.
  9. Dr K did an immunological work up on our son in addition to strep testing but all came out normal. Are there other tests we should consider? At this point I want to do bloodwork for other infections to see what his trigger is....myco, lyme, cocksaxie, etc. What does Dr B test for? Thanks everyone
  10. Sorry I meant your DD. Hard to get used to the abbreviation.
  11. How is your DS doing now? Glad you found the real trigger.
  12. It sounds like my DS. He had an adenotonsillectomy at 3.5 years old. He has suffered terribly from sinus and ear infections. In fact, when he had the onset of tics, I rushed him to the ER not knowing what these tics were at the time. They performed a cat scan and found a sinus and ear infection. Will contact Dr T. He seems to run the most tests on his patients.
  13. 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
  14. Does Igenex need a doctors order to run bloodwork? Im having a hard time finding an LLMD in our area. Will contact Dr L. Thanks to everyone.
  15. Any suggestions on LLMD? The local ones (we live in the Chicago area) are not highly recommended. Lyme and co infections are tricky so we are looking for a good one. Are mycoplasma blood tests conclusive? Can a lyme literate doc also test and treat mycoplasma? I appreciate all of your suggestions. It's been the hardest thing dealing with all this.
  16. Hi all, Who of all the Pandas doctors ( Dr. T , Dr. L, Dr. B, etc) is willing to consider infections other than strep as possible triggers for Pandas tics. Dr. K is only considering strep for my 5 year old DD's Pandas symptoms. I would be interested to find out if we are dealing with Myco, Lyme, and/or other infections/viruses.
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