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Everything posted by Christianmom

  1. My son my be looking at high-dose IV steroids as the next step in his recovery. Don't know the dose but I have read fr88's post and she was given 30 mg./kg which I think would be about 1,500 mg for my son--obviously for a short period of time. I know this dosage sounds crazy, but I also know that similar amounts are given to patients with MS (actually even high dosages). I was wondering if there are others besides fr88 who have had high-dose IV steroids given to their children and what the results were. I am not talking about the 30-day taper which is usually between 40 and 80 mg. or th
  2. It is IgG. Also, I meant to say the doctor prefers high dose steroids or PEX over IVIG.
  3. I'm not sure I should be replying because I am so new with this infection, but I thought this might be of interest to you. My son tested negative for mycoplasma two months ago and had a high ASO and DNase. He was treated for the high ASO by Dr. T and new blood work was done a couple of weeks ago because my son was not responsive to a 30-day prednisone taper (80mg.). In the new blood work his ASO was normal (240 went down to 170) but his DNase went even higher (315 to 340) and he tested positive for mycoplasma (105). Dr. T said the blood work is showing that the group A strep is gone but
  4. Yes, DS was on antibiotics (Biaxin and then Omnicef) during the prenisone 30-day taper. DS is still on the Omnicef. If prednisone would affect the Cunningham test, should I wait a while until getting it? No, DS did not get worse on prednisone. DS's overall picture is that antibiotics and prednisone have taken DS from unhealthy to healthy, from 104 lbs. to his normal 112 lbs. (5' 5"), from hardly talking to talking normally, from little movement to normal movement for the most part, from OCD so bad that he was hallucinating to just severe OCD. The problem is the OCD left behind--unwan
  5. I have been going to Dr. T for 2 months now for my DS. Lots of blood work was done and DS was found to be healthy except for a high AS0 (240), DNase (316), and streptozyme (100). Was diagnosed with PANDAS and has been on augmentin xr, biaxin, and omnicef. He was given a 5-day prednisone burst with 2 days of 80% improvement. Recently DS was on a 30-day prednisone taper with no change. Dr. T ordered new blood work (guessing that the strep had become resistant to the antibiotic and was therefore active again). The results were: mycoplasma 105, ASO 170, DNase 340, streptozyme 200 with everyt
  6. My son was just put on a 30-day prednisone taper. The tablets are 20 mg. and he is taking 4 per day the first week, 3 the second, 2 the third, and one the fourth. He is 16 years old, 5' 5" and weighs 112 lbs. Does 80 mg. seem high to anyone with a similar age or weight child? He is also on Clarithromycin prophylactic. Also, I was wondering if I should start pursuing IVIG/PEX now in case the prenisone doesn't work or if I should just wait. How long should I wait until I see some results and when will I know if the results are permanent? He did extremely well with the 5-day prednisone burs
  7. My son had lots of blood work done by Dr. T the only thing that came back high was the ASO (250). The DNase test was not in yet. Dr. T is treating him for PANDAS. He is on 2000 mg. Augmentin and just finished a 5-day Prednisone burst. No change in my son yet, though I know it is early. Here are the results of his Lyme test done by LabCorp. Western Blot IgG: P23, P66 Western Blot IgM: P41 I know that Lyme is often misdiagnosed. Does anyone have any comments on these test results? Thank you.
  8. Sorry, writing to a forum is new to me. I think I accidentally sent my original post again! Formedbrds, I assume Dr. T. will continue the antibiotics. Didn't mean to be unclear about that. What is your next option since the IVIG's didn't work? Does you doctor think the PANDAS will get better with long-term antiobiotics. If so, how long. Thank you. Tampicc, thank you for your reply.
  9. My ds-15 was diagnosed with PANDAS by Dr. T and was given two 10-day doses of 2,000 mg. Augmentin (which he is finishing up) and finished a 5-day Prednisone burst yesterday. There have been no changes in his severe OCD which has really been his only symptom (no tics for the most part). I was wondering if it would be OK to start him on some B vitamins (through Kal Wheat Flakes), vitamin D, omega-3, magnesium, and vitamin E. My reservation is that if I see improvement, I wouldn't know if it was from the Prednisone/Augmentin or the vitamins. At what point would it be OK to start giving him vi
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