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Everything posted by Christianmom

  1. Just wanted to let people about the new Crescent Health Care location in New Jersey. It just opened. The address is: 11 B Commerce Way Totowa, NJ 07512-3107 Phone:855-877-4276 Fax: 855-855-1564 They are located about 30 miles from Dr. T and are very easy to work with. They take some PA insurances as in-network, and their quote to me for IVIG was cheaper than Coram. They also do home infusions and cover a broad distance--even into PA.
  2. Worried Dad, Thank you so much for the helpful links! I copied this from Dr. T's post: "This is what I find it most useful for: Distinguishing non-immunological TS and/or OCD from PANDAS-like illnesses." Does this mean that a high CamK (above 150?) is definitely linking the TS and/or OCD to an immunological cause (i.e. PANDAX condition). In other words, the TS and/or OCD in a child with high CamK has to have a infectious cause? Would it then be impossible for a child to have regular TS and/or OCD and have a high CamK? Their OCD must be caused by PANDAX? Is that the way you understand this? Or is it possible for a child with regular TS and/or OCD to get strep, not have PANDAS, but just have a high CamK because of having had several strep infections that weren't properly treated.
  3. I was curious if there is any mom out there whose child is being treated for lyme by a lyme doctor and the only symptoms are severe OCD (no tics, no joint pain, no stomach issues, no fatigue, overall good health). I know that a lot of lyme doctors treat lyme as a clinical diagnosis because it can be hard (and expense) to detect, but are they treating children whose only symptoms are OCD? Or do they require a positive IGENEX test before they will treat if OCD is the only symptom?
  4. Shouldn't a high CamK (above 150) mean some sort of PANDAX condition (could be caused by strep, lyme, mycoplasma, or anything)? What exactly is the CamK showing? Brain inflammation with an unknown cause (though it is usually caused by strep)?
  5. Does anyone have an e-mail address that would go directly to him and not through his nurse?
  6. I am considering getting a second opinion from Dr. Latimer concerning my son who has been "hard to treat." I was wondering if anyone with an older child that was hard to treat could share their experience with her. My son is 16.
  7. Who was your doctor? And what were they expecting to see in the anti-neuronals before they would diagnose PANDAS?
  8. I was wondering if anyone is being told by their doctor that their child doesn't have PANDAS because although the CamK II is elevated (above 150), the anti-neuronals were normal. Are most of your doctors telling you in this situation that you child still has PANDAS based on the CamK alone?
  9. I was wondering if anyone who is out-of-network with Dr. Bouboulis could give me some idea what they paid for IVIG from him. Assuming he could get IVIG covered for my son, I would also assume (since he is out-of-network for me) that he doesn't have to accept the insurance contract rate and that we would have to make up the difference. Can anyone give me any idea what this amount might be? And what was the total consult charge including follow-up?
  10. I was wondering if anyone could give me some information about Dr. Elia of Children's Hospital of Philadelphia. Have you gone to her? What did you think? Was she helful?
  11. I e-mailed this to someone and they found it helpful, so I thought I would post it here. It is an answer to a question I asked of Kathy Alvarez at the Cunningham lab concerning my son's "normal" anti-neuronal numbers yet high CamK (168). "his cam certainly is in the pandas range, and the only anti neuronal antibody.. the anti D1 was elevated.. even tho his titer of 2000 falls within the normal range, it is still twice that of the normal mean. its better to look at the normal mean for those titers and not the 'range'... the range includes outliers, or very high or very low scores. the avg mean gives you a better idea of what a normal score should be. we do assoc. the Dopamine with ocd.. finding it elevated in those kids symptomatic with ocd. we do see that sometimes the cams are high and the titers for the others can be within normal range. We think that because the cams are run on living brain cells onto which we place your childs serum... that they are more sensitive than the ELISAs that determine the other titers. Elisas are run by binding the antigen to a plastic plate and coating it with a diultion of serum... then you look for the binding to happen, determined by a color change that is read by an Elisa reader. we really dont have a 'pandas' cut off for the titers... not like we do for the cams. the avg score for a pandas positive kid is 150. normal being 120 and below. just as impt for making a dx is how they clinically present and respond to antbx."
  12. Just had my whole family's titers run: ASO, DNase, mycoplasma, streptozyme -- all the tests my PANDAS son failed. We had already reached the family deductible so it didn't cost us anything so we probably had more tests run than we might have otherwise. Have not seen the results yet, but Dr. T said my daughter had high ASO, DNase, and mycoplasma titers. For some reason he said not to treat it since my daughter is almost 19 and does not have any PANDAS symptoms, but I am going to have her treated anyway. To be fair to Dr. T, we really didn't discuss it long enough because it was not the real reason we were talking. I will definitely talk to him about it again once I see all the results. I didn't bother with the strep swab because my son is asymptomatic and none of us have any signs of strep or any illness for that matter. It was my suggestion to have the titers run. I think these PANDAS doctors are so busy, and frankly after awhile all our cases look so similar to them, that they just forget to cover all bases. As soon as I e-mailed him suggesting the tests, he e-mailed right back with a script.
  13. Sorry but I don't know the dosage yet. Do you know what code Dr. T used to get your son's IVIG approved. Did it have to be pre-authorized.
  14. I bumped up this thread because I was curious if the people who replied with diagnosis codes had to have their IVIG pre-authorized. And if the IVIG had to be pre-authorized, what was the insurance company looking for to allow it. I believe my insurance company will not approve IVIG for any diagnosis code without reauthorization and I am trying to find out what that means. What lab work, etc. did the doctor have to submit for the diagnosis codes suggested in this thread to be "pre-authorized." Or did your insurance just allow the diagnosis code to go through without pre-authorization.
  15. Has anyone gone to Dr. T, had him order IVIG and had it done through Coram Specialty Infusion? If so, what was your experience? Was there anything you wished had been done differently? I will be in this situation with my son very son and I would appreciate anyone's advice. We will be doing a home infusion through Coram in Mountville, PA.
  16. The lyme test is not through Igenex it is through Lab Corp. Have not decided whether to go through with Igenex testing since my son's western blot only showed one band--IgG P66. The western blot was done three times. Hate to put out the cost for the Igenex, especially since we may have to pay the IVIG bill. We did a 5-day steroid burst with great results--2 days at about 80%. I would say he was at 100% those two days, but I didn't want to push him to find out since he had been so ill. He was definitely much, much more like his old self. Two weeks later we followed the 5-day burst with a 30-day taper and there was no improvement. Dr. T doesn't no why. We did run blood work at that time and found that his DNase was rising, but he didn't think this should have affected the results of the 30-day taper. He did suggest recently that possibly the taper dosage wasn't high enough. It was 80 mg. (my son is 16, 115 lbs.). After the rifampin is done on Saturday, Dr. T wants to do a 10-day (I think) steroid burst at 100 mg. If there is the positive "burst" again, he wants to go on to IVIG.
  17. mdmom-- What would be the profit of going to Dr. Bouboulis? Is he having success getting IVIG for kids that basically have good immune systems but have PANDAS. That is where my son is. I would gladly go to him, but I hate to pay for another out-of-network consult and then still be denied the IVIG. My doctor now is Dr. T.
  18. My son's blood work (ASO, mycoplasma, western blot, immunoglobulins, IgG subclasses, ceruloplasmin, ferritin, cbc) is all normal now except for DNase (is rising significantly) and streptozyme (200). He has been on antibiotics since the end of October--augmentin XR, Biaxin, Omnicef, Clindamycin, Azithromycin. He is now on Clindamycin with Ripamfin on days 7-10. Dr. T said the Clindamycin/Ripamfin is the "strongest strep protocol we have." He said if after my son is off the Clindamycin/ripamfin we don't see major improvements in his OCD he wants to go to IVIG. He says we could be tracting infection forever and that basically there are no other strep drugs to try. He also ordered erlichia, babesia, and bartonella titers and we are awaiting the results (he's not expecting to find anything). At this point, assuming the erlichia, babesia, and bartonella tests are negative, would you move on to IVIG or keep trying to track infection. One of the reasons I am asking is because the IVIG will probably not be covered by our insurance since he has no immune deficiences that can be shown by blood work. So I want to make sure we have the best possible IVIG outcome the first time. Thank you all for your posts. I have learned a great deal from this forum.
  19. Wilma Jenks and peglem -- May I ask what your children's IgE's were. My sons IgE was 8 and his IgG4 was 63. He has severe OCD only (no tics). My doctor is also Dr. T.
  20. I just got off the phone with my son's doctor and he had the labs back for our family's strep tests. Everyone's came back normal except one daughter: ASO 281, anti-DNase 960. He said this meant she was a strep carrier. He said my son (the one being treated for PANDAS) is a strep carrier as well (ASO originally 240 (now back to normal), anti-DNase 315 and rose to 340 and now 680 while on antibiotics). From what I have read on the internet, I thought a strep carrier was someone who has no typical strep symptoms but has strep in the back of their throat all the time. Therefore if you do a rapid throat test on a carrier it will come back positive. My son had no typical strep symptoms and his rapid throat test for strep came up negative. But his ASO and anti-DNase were high. So he had asymptomatic strep, but he wouldn't be a carrier since his throat test was negative. Is that right? Also was wondering. Is it safe for my daughter to take the nursery at church if she's a strep carrier?
  21. My son had the same CaM K score (168) and my doctor said my son was "well in the PANDAS range" and that "this confirms a PANDAS-like condition." He seemed to have no doubts that my son has PANDAS.
  22. I forgot to mention that the Januray test was actually 1/31. So the first DNase titer (316) and last (680) were 3 1/2 months apart. So I would think the titer was not still rising because of the original infection. The doctor seems to think the DNase is showing an infection from another type of strep (not strep A) and that it has become resistant to the antibiotics. So we are trying clindamycin 300 mg. (given every 6 hours) with Rifampin for the last 4 days. He said this is considered to be the "strongest availabe strep treatment protocol." I had thought DNase was only an indicator of strep A, but he said it could be an indicator of other types of strep as well. ASO, however, is only an indicator of strep A. We have my son's CamK score (168) and are awaiting the rest of the Cunningham test results. When the doctor sees these results, he will decide what to do next. I would assume it would be best to clear all infection before going to IVIG, but I'm not sure we will be able to get this DNase number to go down. Thank you all for your posts.
  23. SF Mom -- So why are you husband's titers rising? If the strep A is gone (as indicated by ASO lowering) shouldn't his anti-DNase B go down as well?
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