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kc35

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  1. Thanks for your responses. I guess I'm just expecting too much too soon. The reason I really wanted to get started is that it affects my DD walking and the compulsions are multiplying which is what the therapist said would happen if it isn't addressed early. It is hard for us to go out without her retracing steps, in and out of doors, hopping around and touching things in awkward ways multiple times etc. I guess the truth is I am having a hard time with it because it is so strange and we get some strange looks. This has all started in the last month so it is distressing since it has NEVER
  2. I went to a PANS Dr 2 weeks ago. He took 4 vials of blood and ran a PANS panel which included the Lyme Elisa and Bartonella test at my request. The panel included strep titers, mycoplasma, thyroid , adenovirus, CBC, EBV. I am still waiting for results since the panel is incomplete. I am not sure if the Dr is waiting for the lyme results to come in. I was told I wouldn't get any results this week. Has anyone had to wait 3 weeks for the results for this type of bloodwork? What about lyme tests through Quest, do they take 3 weeks or more? I am getting impatient. I took my DD6 who has OCD
  3. The PANS doctor wants to do steroids without abx which doesn't sound like the standard PANS protocol for possible diagnosis. So I don't feel comfortable giving her steroids only if no one else here was told to do that. The Dr told me that he won't prescribe abx at this point. Meanwhile her symptoms are getting worse - she can't walk without hopping, stopping etc. She is so upset by it. She came out of school crying because of it today. It is becoming very noticeable. My only option seems to be a phone consult with Dr T on Tuesday to see what he thinks. Advice on what to do?
  4. I went to a PANS dr yesterday. He is not one of the big names but he was on the PANDAS network page. He ran some bloodwork to determine whether my DD has PANS. The panel he ran included the following - antistrepO, CBC w Diff and Plt, IgE serum, Adenovirus AB, Immunoglobulins (G,A,M) ser, Lipid panel, myco pneumonia AB (IgG,IgM), comprehensive metabolic panel w EGFR, Dnase B antiobody, IGG subclasses, EBV panel, thyroid panel and TSH, lyme EIA w reflux, Bartonella (IGG,M). I have no idea whether this is comprehensive enough since I am just starting down the road to determine whether my DD h
  5. On the webpage of Dr. K (big PANDAS Dr in Illinois) - under the section "Updated Pandas signs and Symptoms" point number 7 reads "Measurable improvement following steroid burst" in red. I am confused about whether the child needs to be on abx while having the steroid burst or not. My DD has not been diagnosed with anything yet. She has no obvious active infection and is no longer on abx. Her OCD symptoms really ramped up one week after the abx were finished. Bloodtests are being run to test for infections. My understanding was that the steroid burst was to determine whether it was an au
  6. The PANS Doctor said nothing about an antibiotic since DD doesn't seem like she has an infection. She was cleared of walking pneumonia by listening to her lungs 2-3 weeks ago by her regular pediatrician who knows nothing about PANS. It was 1 week after the azithromycin that the OCD really picked up. PANS Dr only suggested the prednisone. It will take 10 days to get the results back from the bloodwork. Which of course may or may not show anything. From what I'm reading here it doesn't sound like the prednisone is a good idea without taking abx at the same time. I am quite certain that
  7. I went to a PANS Dr today. My DD6 OCD behavior has steadily been increasing over the past 2 weeks. This started suddenly after a 5 day course of az for walking pneumonia. She can barely walk because of her OCD - hopping on one foot, going back and forth, in and out of doors etc. It is very distressing. I can't even believe this is happening. When I was first on this message board about a month ago, she was just having some tics but now things are so much worse. The Dr agreed to do a panel of bloodwork through Quest - including Myco, strep, thyroid, Adenovirus, lyme and other immune
  8. Thanks Nickelmama. That makes me feel better that Dr J. K. in OH corresponds with one of the big PANS/PANDAS Drs. I really need a Dr who really understands this to determine whether this is what is happening to my DD6. Things have gotten really bad in the last week - major OCD where she can't walk anymore without backtracking, counting, repeatedly touching stuff etc. I feel like I'm in "Saving Sammy". Do you know whether he does Igenex and Moleculara tests as well? Thanks.
  9. Does anyone have any experience with Dr. K near Cleveland Ohio? I made an appt with him next week to determine whether my DD6 has PANS/PANDAS. Her OCD symptoms are increasing daily. I got an appt with him sooner than Dr. L near Columbus and he is closer to me. A few of the people on here mentioned that they know of others who have worked with him. Does anyone know what blood tests he does for diagnosis or treatment protocol? I saw a link someone sent me that stated he treated a boy who was originally diagnosed with TS but then Dr. K determined he had PANS/PANDAS and was treating him with I
  10. LLM How do you search the archives? I can not find the Megs mom info on ERP. Can you post a link or be more specific of where to find out? Sorry I'm frazzled today.
  11. Thanks for info on OCD and therapy. I will have to read about it since I don't know much about it. I contacted ILADS about an LLMD in my area(western PA) but no response yet. Does it take a few days? A mom from my area found an LLMD- Dr S in Hermitage PA. Does anyone know anything about him? I don't think that Dr. L in Gahanna, Ohio does lyme and coinfection testing.
  12. I bought the book "What to do when your brain gets stuck" by Dawn Huebner when I started noticing low level OCD. I know they talk about putting thoughts in the junk pile. However my DD didn't want to read it at the time. Now things are so much worse. Since I have no experience with OCD I don't feel qualified to handle this. I don't know if I should read her the book or not. If things worsen with her OCD and other things, then I will move up her appt. with the CBT/CBIT person, especially since many of you have had good experience and recommend it. Thanks.
  13. The therapist that I saw for CBIT for tics also treats OCD. She said that the therapy involves throwing the bad thoughts into a junk pile or labelling them differently. Is this ERP therapy? Right now my DD doesn't have fear of germs. Like I said she is doing things repeatedly due to a "feeling".
  14. My DD6 who started off with tics, now has lots of OCD. This really picked up this Sunday which is about 1 week after she finished a 5 day course of az for possible walking pneumonia. I am still in the process of trying to figure out whether this is PANS/PANDAS. I am doing strep titre, myco IgG and IgM, and Lyme IgG and IgM on Saturday. Now she has to go up and down the stairs a number of times to get the feeling right. She has all these weird feelings to do weird things like touch things, repeat things, have me repeat things. I called the CBIT person we saw a week ago who said this is OC
  15. Has anyone worked with Dr L in OH? He was on the PANS/PANDAS website. He also works with children with other issues ie)autism and uses an integrative approach testing for deficiencies etc. Please PM me. Thank you.
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