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Everything posted by Christianmom

  1. My son's ASO and anti-DNase B have been tested 3 times (10/2010, 12/2010, 1/2011) and he has been agressively treated with antibiotics since October. Here are the results: ASO: 240, 171, 146 anti-DNase B: 316, 340, 680 Has anyone else had this happened? And what does it mean?
  2. My son's ASO and anti-DNase B have been tested 3 times (10/2010, 12/2010, 1/2011) and has been agressively treated with antibiotics since October. Here are the results: ASO: 240, 171, 146 anti-DNase B: 316, 340, 680 Has anyone else had this happened? And what does it mean?
  3. Dedee and dcmom, What was your dosage of IV-steroids?
  4. SF Mom-- The mycoplasma titer is back to normal and it was never really that high anyway. Originally it was normal and then rose to slightly above normal when my son went on 30 days of prednisone. After more antiobiotics, it is back to normal (actually my son has not gone off of full-dose antibiotics since diagnosed last October). ASO is now normal. Still waiting for the anti-DNase test. Still waiting for Cunningham test results. Western blot has been tested three times--all normal. CBC normal. Celiac normal. Iron normal. Immunoglobulins all normal. How long would you continue on the azithromycin? Dr. T said to switch back to biaxin since my son did better on that.
  5. My son has been on augmentin xr, biaxin, omnicef, clindamycin, and now azithromycin. He by far did the best on Biaxin and worse on azithromycin. Doctor said it was unusual to do better on biaxin vs. azithromycin. It seems to me like he should have done well on both since they're both immunomodulators. Has anyone else's child done better on biaxin than azithromycin? Did we perhaps not try the azith. long enough--only 13 days? None of the antibiotics have helped all that much in terms of his OCD, though they have removed his infections--strep and mycoplasma. We are looking into IVIG soon.
  6. I was wondering if anyone has any advice on how to get IVIG paid for when my son has no immune deficiency. His only problems are strep and mycoplasma which have both been treated, so even those titers are normal now. All bloodwork is coming back normal. We are waiting for results from the Cunningham test.
  7. Could anyone with HealthAmerica in Pennsylvania tell me if they have have had success getting IVIG or plasmapheresis covered. I am especially interested in anyone whose child's only immune problem is strep or mycoplasma. My son's immune system is strong (all tests normal), but he has been treated for strep and mycoplasma (ASO and mycoplasma tests are now normal). Any suggestions on how to deal with HealthAmerica if they require a preauthorization? Would possibly be using Dr. Elia at CHOP who is in-network for HealthAmerica. Does anyone know what codes she uses?
  8. Well, I'm not sure I know what I'm talking about enough to comment, but I agree with what pandas16 is saying. I am familiar with Janice's case and it does seem that the second PEX was different because her daughter had a vaccination. Perhaps if her daughter had just had another strep infection the second PEX would have worked. But what is confusing to me is that it seems that there are people on this forum who have had PEX and it has not worked, even the first time. What would be the reason for this? Could it be because they still had an infection when they went in for PEX? Or would there be other reasons?
  9. I can only get 8 250 mg. pills per too and I can't understand why. Yet they have approved other abxs that were more expensive. I am really disappointed because so many on this forum seem to have done so well on azithromax.
  10. I just found out from my insurance company (Health America) that my son's azithromycin prescription was denied. They have approved augmentin xr, biaxin, omnicef, and clindamycin in the past with no question. My son has had great improvement in his overall health on antibiotics and antibiotics have gotten rid of strep A and mycoplasma, but none of the antibiotics he has tried have helped with his OCD. Do you think it would be worth it to try azithromycin for a while, even if we have to pay for it ourselves? Also, was wondering if this denial of azithromycin is any indication of possible denial of IVIG or plasmapheresis? Does anyone have any thoughts on that? Thank you.
  11. P.Mom -- Do you think that Dr. Latimer is routinely suggesting that tonsils be removed even if they aren't inflamed. My doctor (Dr.T) has not suggested seeing an ENT doctor at all. At least not yet. Kimballot -- Also, my son's ASO has gone back to normal with abx, and we just ran bood work hoping his anti-dnase and mycoplasma numbers have come down. If these numbers are all normal, would there be no reason to have an ENT work up because they probably won't find anything or would you still have it done?
  12. kimballot -- I have no idea where the infection is. He has no symptoms. And if I took him in today to the doctor, probably his tonsils would look fine. I do have some guess that he may have strep in the sinus area. Again, there are no symptoms, but he usually gets yellow discharge from his nose with a cold (he is perfectly health right now and rarely gets a cold--maybe twice a year). Do you think I should take him to an ear, nose, throat doctor? But since he has no current sinus issues, would they not find anything? The reason I am asking these questions is that we are looking into IVIG or PEX and I want to make sure we have done everything possible to make sure he is free of infection first, hoping this will help with the success of the IVIG or PEX. But maybe I am just being overly cautious. The doctor (Dr. T) has already gotten his ASO down and we just ran blood work to see if his mycoplasma and Dnase numbers have come down (has been on antiobiotics since the end of October--Augmentin XR then Biaxin then Omnicef then Clindamycin and will be switching to Azithromycin on Monday). If ASO, Dnase and mycoplasma are in the normal range, should I assume we are in good shape in terms of infections and therefore feel free to move on to IVIG or PEX? Thank you all for your responses!
  13. My son had high ASO, anti-Dnase, and streptozyme test but came up negative on the typical "throat swab" test for strep and did not have swollen tonsils. He has never had problems with sore throats and, as far as I knew before the tests, had never had strep or strep symptoms. Maybe this is a silly question, but I was wondering if anyone has ever had their child's tonsils removed just to help with the PANDAS symptoms and not because the tonsils were inflamed. The only reason I am asking is because I have read of so many children with PANDAS who improved after removing the tonsils.
  14. I was wondering if others would share what tests their doctors are ordering to check other family members for strep. Do doctors order just an ASO test or do they order ASO, DNase, and mycoplama tests for all family members. The reasons I am asking is because ASO, DNASE, and mycoplama numbers are all high for my son. It seems like all three should be checked for our family, but maybe that is not necessary.
  15. I was wondering if anyone could tell me how long it is currently taking to get results back from the Cunningham test?
  16. We are about to have the Cunningham test done for our son. The next step in his recovery seems to be high-dose steroids, IVIG, or PEX. I was wondering if others had trouble getting doctors to consider these procedures if their child tests normal on the Cunningham test? I am a little afraid my son will test normal, only because he is not currently in a full exasperation.
  17. I was wondering if you have any idea why the pulse steroids helped you over the PEX. And which one helped the most with the severe OCD. Thank you so much for posting.
  18. Does anyone know the insurance procedure code for PANDAS? I want to see if my insurance covers IVIG, PEX, or IV steroids for PANDAS. My son has no other immune issues so it can not be coded as any other diagnosis. I have Health America/Health Assurance. Has anyone else with this insurance had success getting them to pay for these procedures with a PANDAS diagnosis? Thank you.
  19. No, my son did not have the typical mycoplasma symptoms. But he has never had symptoms of strep either--no fever, sore throat, cough. As far as we knew, he had never had strep. Up until two months ago I can only remember two days in his life when he was even sick enough to miss school. He is considered to have asymptomatic (no symptoms) strep. His only symptoms were the sudden onset of severe OCD and weight lose (not sure if the weight lose was do to infection or the OCD). We spoke with a counselor about my son's OCD and and the counselor suggested we read literature on OCD. The literature suggested having a strep test done. When we did, he passed the rapid throat test but his ASO was high. Through the internet we found out about PANDAS and through a PANDAS forum we were recommended to Dr. T. Dr. T said my son has a classic case of PANDAS. I agree the rise wasn't alot, but I do trust the doctor's opinion because he has seen many, many PANDAS patients. He has also treated many patients with mycoplasma-type PANDAS and is known for his close reading and handling of blood work. Anyway, I am willing to try a month of antibiotics and to take another blood test in a month before going to something as strong as high-dose IV steroids, IVIG, or plasma exchange. My son's dbase tests was still high as well in the second lab test, though his ASO was back to normal. Dr. T wants to see that number go down too before we look into stronger treatments. I will try to remember to post the results of his blood work after a month for those that might be interested. He will be getting ASO, anti-DNase, mycoplasma, Cunningham, and CBC tests.
  20. fr88: Here were the results of my son's two tests for mycoplasma First test IgG <100 (negative), IgM <770 (negative) Second test two months later: IgG 105 (positive), IgM <770 (negative) The doctor said comparing the two results showed "an ongoing [mycoplasma] infection."
  21. Here are the eaxact results of my son's two mycoplasma tests: First test: IgG <100, IgM <770 (both are negative results) Second test: IgG 105, IgM <770 (IgG positive result, IgM negative result) Dr. T said since the test is kind of obscure because what does <100 mean? In other words, did my son score a 1 (indicating a very strong negative) or a 99 (indicating almost a postive) on the IgG test? He also said that each child is different. In other words, a 90 might be a negative result for the average child but might be a positive result for my child. He was much more concerned in the fact that the IgG number was rising than in the fact that the original IgG number had been a negative result. His exact words to me were that the second set of mycoplasma test "suggest an ongoing [mycoplasma] infection." He is treating the mycoplasma with 30 days of clindamycin 600 mg. He wants another blood test for mycoplasma (and other blood work) in a month.
  22. That's the way I took it. I don't think he was saying you can in every way compare it to a yeast infection, but I think the point he was making is that you can start out with one infection, but there are actually two brewing. Additionally, he said just because my son passed the mycoplasma test the first time did not mean that infection wasn't there all along. The pass/fail number for these PANDAS-like illnesses seem to be specific to a child. (For instance, Dr. T said he has seen children who have an ASO count of 40, but they have a Group A strep infection. The reason he knows this is that the child will be re-tested in a month or so and have a ASO count of 60. Therefore, since the titer are going up, there is infection. For whatever reason, that child doesn't create very many antibodies. So the "above 200 number" that you would normally look at for the ASO test is meaningless to them.) One thing Dr. T did say for sure can be seen in the recent blood work is that my son has two infections--mycoplasma and some form of strep other than A. From the first lab work done it can be shown that my son for sure had group A strep. This group A strep seems be gone based on the recent blood work. The question is whether he had three infections from the beginning.
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