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AmbersMommy

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  1. Hi all, I haven't posted here in a long time. Maybe a year or so. Not sure exactly. My daughter has had PANDAS since she was 6. She is now 13. Our life sucks. I don't get to sleep at night. She gets up at night all night. Last night it was about 2:30 in the morning and she never went back to sleep. She yells all the time. She has very obsessive odd thoughts and the list of symptoms go on. She has been diagnosed with an intellectual disability. Who knows if it is part related to her PANDAS. I surely don't. I am tired. I don't want to be her mother anymore. I have no life left.
  2. My daughter was diagnosed with PANDAS in 2010. She had autistic type symptoms at the onset. Eye contact was virtually gone, language regressed. I could go on. She has had IVIG and many different antibiotics. The autistic type symptoms have come and gone and come back again. They did get better with IVIG and antibiotics. Then they got worse even though she was still on antibiotics. I have been wondering if some of the symptoms I have attributed to PANDAS are permanent. I wish I knew. I know she has pandas because she had the Cunningham panel done. I just don't know for sure if she has a
  3. My daughter had her first episode with PANDAS in 2010. We were lucky and had IVIG. However, the insurance company stopped paying, and we stopped the treatment. Fast-forward to this year. We have a new insurance company and they are paying for the IVIG. We have had 7 treatments. Usually she would have a reaction that would include near-rage to just irritability. This time...NOTHING. From what I understand this is an awesome sign. We had been seeing improvements in her the past 2 moths. The thing I think made all the difference is that her Lyme is being treated and the treatment seems
  4. Hi, My daughter was diagnosed with PANDAS and Lyme back in 2010. We had IVIG treatments for a year. Her worst symptoms including hallucinations, OCD and sensitivities to light and sound all but disappeared. However, we had and still have major issues with her ability to pay attention. She also has started laughing uncontrollably and can't really tell us what she is laughing at. Her teachers say they aren't able to teach her anything at this point. She started IVIG treatments again this year. She has had 5 of them. The laughing has gotten worse. One thing that has improved greatly
  5. Hi all, We are in the process of getting pre-approval for IVIG. Now with the possibility looming in the near future I wonder if we are doing the right thing. We have only tried one antibiotic with some success, but really she still isn't herself. She walks around the house in circles with her head down. She seldom speaks. She didn't speak much before, but now it is much worse. She laughs for no reason. She doesn't express, "normal" emotions anymore. She rarely wants a hug or any physical contact. She has numerous other issues I believe are PANDAS related. Should we try another an
  6. Some Quests will draw blood for other labs and some won't. It depends on the, "region" they are in. The quest labs down by Dr. B's office apparently will draw blood for other labs. The Quest labs near me, east of Hartford, CT won't draw blood for other labs. A representative of Quest actually explained that to me. Call the Quest lab you want to go to and find out if they will draw for other labs. Igenix will send you a kit. I had our pediatrician's office draw the blood. Had to pay the office co-pay, but it wasn't that bad. Good luck!
  7. Hi, My dd goes to Dr. B. and we are trying to get precertification for IVIG from Aetna. I spoke to the staff at Dr. B's office and asked them as far as insurance companys go how is Aetna at paying. They said Aetna is one of the ones that usually does pay. They told me the process of precertification goes something like this... The staff submits to Aetna for precertification. If it is denied they ask for a peer to peer review where some doctor at Aetna will speak directly with Dr. B. and he will argue the case with them. Would the business manager at Dr. K's office be able to call about p
  8. I am actually drinking Kefir, and taking probiotics as well..on and off. Maybe I will just switch them to always on. I feel horrible on every antibiotic I have ever been on. I also went on the Specific Carbohydrate Diet which eliminates all grains as well as carbs/sugars except for the simple sugars which are readily absorbed. I thought that would ward off the yeast even better than the probiotics. Nothing for the yeast to eat! Thank you for the response to my post. Much appreciated.
  9. Hi, Dr. B. prescribed antibiotics for me because I tested as a strep carrier. I have been on them for 14 days today. I had a yeast infection in my throat at the beginning of the year because of antibiotics...before PANDAS hit my dd. Dr. B. put me on an antifungal as well at my request. (Thank goodness!) I am beginning to feel really icky on them. My throat was burning today and I really just want to know if I can stop now. There is only 1 day left on them, but I feel like I am really pushing it...like something is looming...major gastritis is what I am thinking. Not good as last time th
  10. Hi. my dd goes to see Dr. B. as well. We need to get Lyme ruled out. I ended up calling Igenix and they sent us a blood draw kit. Then we had Dr. B. fill out the form that was included with the kit and sign it. Quest wouldn't draw the blood for an outside lab where we live. I found out that Children's Hospital in Hartford will draw blood for outside sources, and my daughter's pediatrician said he would, so we are going to the pediatrician to have it drawn and am sending to Igenix myself. I'm sorry I don't know about the lab test results you posted. Try finding a phone number for Imugen
  11. Don't give up! Don't get discouraged by the physicians that don't agree with what you think may be wrong. You know your son. You know the behaviours started after a Strep infection. It is logical to assume that it may be related. My daughter, 6 yrs old, was diagnosed with ADHD inattentive type in Feb. this year. She had a positive Strep test on May 3rd. Within 3 days of the strep diagnosis she was unable to sleep by herself or go to the bathroom by herself, she was hallucinating, and had movement ticks as well as she just wasn't there and would just stare off into space. We went to th
  12. Thank you for the work you have done!!!
  13. Thanks for the info. I will check out the sites in the morning. I am exhausted right now. The ED docs discounted amoxicillin as a cause for the hallucinations as they would have been out of her system by the time that they saw her the first time. I am skeptical. I think that perhaps it did cause some type of cascading effect. I'll read up more on it tomorrow. Thank-you.
  14. My daughter was on 1 tsp a day liquid Azithromycin...so 200 mg/day. She improved greatly for the first 2 days then backslid a few days. We are seeing Dr. B. I called him and he upped the dosage to 1 1/2 tsps a day...300 mg/day. Had a little miscommunication with the pharmacy, and just got the upped dosage started a few days ago, but had been seeing steady improvement anyway since she backslid at the very beginning. Think that was my fault anyway because I was giving her a probiotic with magnesium in it at the same time as the Azithromycin which interfered with it. When I stopped doing t
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