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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 the 5-day burst that so many children are given. Thank you.
  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 that there is an ongoing mycoplasma infection. (He also said that other types of strep are showing as still present because of the DNASE being high and the ASO low. He said an ASO test is specific to Group A strep but DNASE is not--it shows just that some type of strep is present.) He switched my son's antibiotic to clindamycin for 30 days and wants to run more blood work in a month. He also ordered the Cunningham test in a month (have to wait a month because my son just came off prednisone) as well as a CBC (complete blood count--I suppose to rule out any other hiding infection). He compared my son's results to a yeast infection. In other words, you treat one bacterial infection--say bronchitis for example--and you get a yeast infection as a result. The yeast infection was there all along, but was not causing you problems. But when you tried to treat bronchitis, the yeast (another bacterial infection) tried to fight the antibiotic so it could live so it become more active than ever. So in other words, the mycoplasma was there, but it wasn't detectable until my son was put on an antiobitic for the group a strep. He also said that the results on any of these tests are averages and each person is different. In other words, a low number for mycoplasma on my son's first test may have been a high number (i.e. positive) for my son. Every person is different. He said the only way to truly see if an infection is active is to see if the numbers rise--which my son's did. I also asked, since he was ordering the Cunningham test, if it would show a reaction for any PITAND disease, including mycoplasma, and he said "yes." Please excuse my ignorance if some of this doesn't make sense. It is not a reflection of Dr. T. He tried hard to explain it to me. Also, I thought it might be of interest to you that he prefers high dose steroids, over PEX over IVIG. After treating the mycoplasma infection he said we will probably move to high dose steroids. He wants to see the results of the Cunningham test first though. Thank you for posting. You have been a big help and encouragement to me.
  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--unwanted thoughts that plague DS constantly unless he is distracted. DS has all kinds of rituals he goes through to try to rid himself of these thoughts, but as I know everyone here knows, they only make things worse. If DS is distracted--playing a video game, talking with siblings--you would never know anything is wrong. But if you ask DS to do school work that requires concentration, DS will spend an hour and and half and get half a page of work done. During the 5-day prednisone burst DS had two days of relief from his unwanted thoughts. He said they didn't go away, but he was able to put them off and function normally. During the 30-day taper, he had no relief from his OCD, though he is able to manage his OCD better simply because he's learning to live in this odd way that he has been living. His abnormal life is beginning to seem normal to him as time passes. DS has been on heavy antibiotics since he was diagnosed with PANDAS. Dr. T is treating DS aggressively because of his age. DS has been checked for lyme twice and DS has passed both tests well. Thank you all for your time and concern. I would welcome any comments or suggestions.
  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 everything else negative. I have an appoint on Friday and he wants to talk about these results and about possibly getting a Cunningham test. I don't mind getting the Cunningham test, but won't the results be inaccurate since he has been on so much prednisone and antibiotics? Also, does anyone have any idea why the 30-day prednisone taper didn't work when the 5-day burst did? Even if the strep was still active, shouldn't DS have gotten relief with the 30-days prednisone taper? Thank you.
  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 burst--seemed almost back to normal for 2 days.
  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 vitamins? Also, if there is no change after a month from the Prednisone burst, can I assume he would not be a likely candidate for improvement through IVIG? Should I assume that his OCD is permanent and therefore seek counseling for him? And would it mean that the PANDAS diagnosis was incorrect--that instead my son is just suffering from regular OCD that was possibly exasberated by the strep? He has had extensive blood work done and everything came out negative except his ASO was about 250. The Dnase results are not back yet due to some "activation agent" needed to complete the test that the lab does not have. Thank you.
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