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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. I can't work. We went bankrupt. We lost our house. There is no end in sight. We have tried antibiotics, IVIG, essential oils. You name it. We have tried it with some success, but not nearly enough. I have tried my best. I am just so tired now. I am seriously considering giving up our parental rights and handing her over to the state. I would never have considered it before because I thought they wouldn't be able to help her. The thing is I don't think we can help her either. I just can't do this anymore. Why am I posting this here? Because I now think that there is a point when you have to say uncle. I never in a million years would have imagined that there was. I entertained the thought that I am a terrible parent. You know what? I am not. I gave up everything for her, a career, a home, my life. There is nothing more I can do or give.
  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 autism on top of it. I have a hunch that PANDAS and autism are two different sides of the same coin. It is hard to figure out what to do when you question whether a symptom is permanent or not. Should your focus be on trying to find the cause so you can seek a treatment or should your focus be on alleviating the symptoms?? I am right there with you. It is 6 years later and I am still trying to figure out how to help her. She is better overall. Just this past 6 months her muscle strength and stamina have gotten a lot better. However her eye contact has gotten worse. Go figure. Keep on trying. Trust your gut and be good to yourself. Good luck.
  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 to be working for that. With the Lyme under control I think the PANDAS is on its way out. This has been a long road, and I don't know if we are at the end of it or not, but it looks like we are at least seeing the light at the end of the tunnel!! Never give up. You never know what is around the next corner.
  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 is her stamina, and she doesn't have pain in her knees and feet anymore. So, what is going on with her????? She can't concentrate on anything anymore and the uncontrollable laughing is awful. It isn't constant, but it does prevent her from learning. I was having her read to me tonight and she just kept laughing. Could this be a side-affect of IVIG treatment. Does this mean it isn't working? Any insight would be greatly appreciated.
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