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Everything posted by bhenry

  1. We are going on 10 years, six of those years she was misdiagnosed so went untreated. She was so ill during that time she could barely leave the house, and missed probably four years of schooling. It has been a steady improvement with some setbacks when she developes mycoplasma or small setbacks if exposed to other viruses. I can say she is 90% better than she was six years ago. She has been on two antibiotics for four years now with symptom returning when she is weaned off. We have been trying to get IVIG for two years now hoping it will return her to 100%. She clearly has an autoimmune response to viruses, but has no symptoms in between any more, and her life is very normal in between setbacks. When she flares, steroids bring her right back. We never thought she would recover to this point considering how sick she was for so many years, it is quite miraculous. Even if IVIG does not bring her to 100%, it has become very managable. We have been working on methalation issues and immune support through supplements as well. She is very social now and has a lot of friends.
  2. My dd14 presents like she has bipolar when she is flaring. It used to be continuous until we realized the symptoms disapeared and she became very mellow while doing prednisone bursts. She has a PANS diagnosis. So, when we see her becomming manic she gets a predisone burst. We are waiting for IVIG approval because of the dangers of constantly taking prednisone.
  3. croatianmom, My sons rash did not come and go but ive heard that they usually do. We are convinced it is definately bartonella because it is clearing now on antibiotics. Like I said it is hard to get a possitive for bartonella. It is also important to take something like bolouke or lumbrouske( not sure if i spelled that right) as a blood coagulator because bartonella forms in the arteries. I definately think my son has both and both need to be treated. Immune system issues from PAndas can make it hard to clear up the bartonella. Or, it could just be bartonella in your case, it can cause neurological symptoms similiar to PANDAS. It would make sense that IVIG would be inefective if he had and active bartonella infection going on. Good luck and hope you find the right treatment. If this isnt enough to make us all crazy!
  4. I have been told never mention PANDAS when getting approval for IVIG. The diagnostic codes that Dr's are using are: 323.62 other post infections encephilapothy 279.49 autoimmune disorder NOS 279.03 specific antibody deficiency Hope that helps.
  5. Croatianmum, Im sorry to hear those other treatments didnt work . i would definately test for Lyme! I advise you to see someone who specializes in it. My son 18 had a bartonella rash on his back for 3 years. I thought they were stretch marks until i saw a picture of bartonella rash and brought him to a lyme specialist. His tests all came out negative but we treated anyway because of the rash and it is going away now two weeks into antibiotic therapy rifampin and mynocycline. He also told me he can concentrate better in school and mood swings have improved. He is also being treated for PANDAS.
  6. Croatianmom, Thank you for your words of hope. Its exhausting when you have finally reached a place that you know is the right decision and then someone has to interfere, making you question your decision., we are just waiting on insurance appeal right now and praying it will go through. Have you tried different antibiotics? My dd was on biaxin for two years and showed improvement but not fully . Then developed myco and was put on augmentin and saw a drastic improvement. The steroid bursts are also worth trying. I was very hesitant at first and put it off for a long time, but in the meantime while you are getting IVIG you may want to consider it. I wish you well, its a long journey for us all.
  7. She gets striggered even by cold viruses, but flu'e really affect her and she is really suseptible to mycoplasa.
  8. Yes, she has been tested for all viruses and has been on antibiotics for three years for infections. Her Igg levels are low and her responce to viruses are strange because she doesnt show physical symptoms of illnesses but instead has psychiatric symptoms and a low body temperature. Her Dr said she has clear markers for autoimmune disease and that IVIG every two weeks for 20 minimum would stop the autoimmune response and put it in remission. We have been working towards IVIG for a long time with her Dr always stalling, so we finally went to an out of state Dr specializing in autoimmune encephilitis and believes she can successfully be treated. Then a family member contacted a doctor who treats PANDAS at New York prespiterian Hosp who told her it wouldnt work and was very dangerous and doesnt work if it has been long term. So im dealing with a medling sister who is probably trying to help, but isnt in the least. My motherly gut instinct is to go with the IVIG. My dd is so sick of living with this it sems worth the risk.
  9. My dd 14 has had PANS since age 6. Was misdiagnosed until age 11 when she started antibiotic therapy which we saw a great improvement. She continues to have flares with every illness, even when she is around someone who is sick. Prednisone works great for those flares, but symptoms return when she is triggered again. Last winter she had 5 prednisone bursts.We decided to seek out IVIG for her but am getting conflicting veiws as to whether IVIG will work to stop the autoimmune process. Has anyone had success with HD long term ( 1X month for 6 months) IVIG to stop the autoimmune process? I spoke to a different doctor who said IVIG would be useless since she has had it for so long. She is perfectly healthy in between flares. We have even considered plasma exchange. The winter months are for her. Has anyone had sucess with this after their child has been ill for so long?
  10. Does anyone know of a treating Doctor/Neurologist who performs plasma exchange and/or IVIG for PANS? preferably both because I've had two different opinions on how to treat my DD's PANS. She is currently treated with antibiotics and steroid bursts and continues to flare with every viral/bacterial contact.
  11. I would avoid taking him to the hospital.Took my dd in the same state, wouldn't leave house, severe anxiety. Took hours to get her to the hospital which was what her doctor recommended, and we were questioned for eight hours. Will never do that again ! Most doctors don't know what PANDAS looks like when its at its worst.
  12. My dd 14 has this behavior when she is flaring. She has been on biaxin for three years so major symptoms have improved but age regression is always a sign of a flare. Once she is put on prednisone burst silliness/doll playing, ect..goes away immediately. it all goes away. It took me a long time to figure out this was a sign of a flare. Good idea to have yeast checked as well. I never thought of that and think Ill have my dd tested for that also.
  13. Did anyone have mycoplasma as the offending virus? I wonder if it depends on what the viral trigger is as to whether plasma exchange works effectively. Strep,Myco, Lyme?
  14. She has had PANDAS for nine years, 6 years undiagnosed. She has been on Biaxin for past three years and was really helping her until the beginning of this school year. She has had a lot of flares and has been on four prednisone bursts since September. The steroids really help but then she is around another virus and starts flaring. She has missed alot of school, and although she is much better than she was during the 6 undiagnosed years, she has had it with this illness. She has done years of EBT therapy. Thank you all for your comments.
  15. Has anyone in this forum gotten plasma exchange for their PANDAS child? What was the outcome? What is the cost? With what doctor did you have it done by? My dd has been on an antibiotic for three years and now she is responding to every virus she is exposed to. I am thinking PE would be the way to go with her. She is missing so much school.
  16. My daughter is PANS. She had her exasperation's following mycoplasma pneumonia. She had severe separation anxiety and was unable to go to school and fell apart when she did. I wish that I had just pulled her out looking back.She is on Biaxin full time until she is 18, and steroid burst during mild exasperation's. Mono can defiantly be a trigger as well as any virus for my daughter. You do not need a positive test for either PANDAS or PANS. She never tested positive for strep. I have never tried ant virals but would love to know if anyone has.
  17. Thank you, I suspected that but good to hear it from someone else.
  18. My daughter has been on biaxin antibiotic for three years now. She continues to have minor flares when she is exposed to various viruses. Because of the flares I started her last week on Wobenzym N because it breaks through the biofilm and i was thinking that it would help the antibiotic work more effectively. She is in a pretty bad exacerbation right after starting it and its hard to know if its because of all the sickness at school which is always a trigger or the Wobenzyme N. Does anyone have any experience using the Wobenzyme N ?
  19. My DD is 14 and when she is flaring gets hyperactive and it effects her socially. She has verbalized very clearly to me that she knows when she is being annoying and cant control it. She is different in that she is always trying to hold onto friends and comes across as very needy. Its heartbreaking because she has always had a good social circle even when she was sick, but now that she is getting older friends don't understand it, dump her and then when she is doing well everything is good. Its very hard to watch. Now that she is older she gets very depressed about it all. Just keep the communication open so they know its the illness and not them.
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