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welshfam

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About welshfam

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    Female
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    Illinois
  1. @ beeskneesmommy...are those numbers crazy? I questionned the dr. about those numbers and her said it showed that she was infected in the past but now has the antibodies to protect herself against it, therefore she is not currently affected. Does that make sense? I don't really get it!
  2. I am still investigating to see if IVIG is the right way for us to go. Not convinced in either direction. The IVIG was just recommended by Dr.K and we went ahead and checked to see if it was even an option through our insurance, as I am investigating all options at this point. I am new at this and believe my daughter deserves for us to make the most educated decision...don't know what that decision is yet. She is currently on a 40 day round of augmentum.
  3. My 8 yr old daughter had sudden onset of OCD symptoms in Dec. of 2012. We met with Dr.K and he did bloodwk (titers and dnase) all normal, and then 14 day round of augmentum where we saw significant improvement in her OCD behavior. He would like for her to do IVIG. The surgical location he would like to do it at does not accept our insurance. We then found a local immunologist who was willing to do whatever tests I wanted to check for other infections. I brought him Dr. T's list of suggested tests...Here are the results. The immunologist found nothing to be problematic in his opinion except for the vit D (referred me to my PCP) and didn't know what to do with the reverse T3, serum results . I am wondering if I should be reading more into the results or take his word for it. Does anyone see something different, and where do you think I should go from here? STREP PNEUMO TYPE... 1-0.55 Immunoglobulin A, QN, Serum - 98 3-0.23 Immunoglobulin M, QN, Serum - 189 4-0.21 Immunoglobulin E, Total - 2 8-0.35 Immunolglobulin G, QN, Serum - 907 9-0.26 IGG, Subclass 1 - 504 12-0.37 IGG Subclass 2 - 348 14-<0.68 IGG Subclass 3 - 25 19-4.90 IGG Subclass 4 - 32 23-14.47 26-16.44 Tetanus Antitoxoid IGG AB - 0.36 51-4.45 56-1.19 Diptheria Antitoxoid AB - 0.54 57-6.87 68-0.97 Lyme IGG/IGM AB - <0.91 Lyme AB INTERP.,EIA - Neg Lyme Disease AB, QUANT, IGM - <0.91 Lyme AB IGM INTERP., EIA - Neg Antinuclear Antibodies Direct - Neg EBV Early Antigen AB, IGG - <0.2 TSH - 2.100 EBV AB VCA, IGG - <0.2 Reverse T3, SERUM - 31.0 EBV Nuclear Antigen AB, IGG - <0.2 M Pneumoniae IGG ABS - 962 M Pneumoniae IGM ABS - <770 Ferritin - 37 Calitriol(1, 25, DI-OH VIT D) - 62.7 Vitamin D, 25-HYDROXY - 23.8 Ceruloplasmin - 24.9 CBC Differential W Platelet- ALL Normal Bartonella: B. Henselae IGG, IGM - Both Neg B. Quintana IGG, IGM - Both neg Ehrlichia AB Panel - ALL neg Enterovirus (ALL Coxsackies and Poliovirus) - Neg Diptheria Immune status - 0.5 Haemophilus Influenzae B IGG - 0.21 Tetanus Immune Status - 0.4 Strep Grp A CUL-SCR - Neg
  4. I went to my immunologist and felt the visit was productive. He is a believer of PANDAS and although he is not extrememly knowledgable on the subject, he is willing to work with us and learn with us. I brought Dr. T's list and he went through it all with me and agreed that all the tests on the list were fair and ordered them all for my daughter. She had the bloodwork yesterday and we are now waiting for the results. Thank you guys for your help!
  5. Any luck on getting a list of labs/tests others have done? If so can you share?

  6. Any luck on getting a list of tests suggested for PANS?

  7. Can you PM me the list Dr.T suggests for tests for a PANDAS/PANS child? I have been looking everywhere for it! Thank you in advance!

  8. We are seriously considering doing IVIG for our daughter with Dr.K but have been reading all of these forums and are not finding any people stating that IVIG worked permanently the first time. Everybody seems to feel IVIG is worth it, but we are wondering why when most children are having to do it over and over again? Are there any children out there where IVIG worked the first time and their child has been in remission for an extended amount of time?? Any info is greatly appreciated!
  9. I googled her name b/c we live near Naperville and I found info stating there was a malpractice suit against her...did she help you when you went to her?
  10. I have put out an email to Dr. Karen Onel at the University of Chicago. No response yet but when I looked her up she is one of the top 15 pediatric rheumatologists in the country and is on the PANDAS approved dr.'s list. Has anyone had any experience with this Dr.?
  11. I am new on here and am reading all of the posts and trying to absorb all of this information. I have an 8 year old daughter who has been newly diagnosed with PANDAS. We have been told by our Dr. (Dr. K) that he recommends IVIG for her after blood tests and one round of augmentum. We are in the process of submitting to our insurance and are waiting for the denial ;0)...sorry, but we are learning very quickly how much "on our own" we are in this fight to help our daughter! Anyway, after reading all of the threads on here, I am learning that it seems to be standard practice for PANDAS parents to have their child first tested by an immunologist before going through with the IVIG. I then found a thread on here where someone wrote that there was a list of tests out there suggested by Dr. T. I cannot find this list and am determined to obtain it before my daughter's apt. on Wed. with an immunologist who claims he works with PANDAS patients in our area. Can anyone please help?
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