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ejh

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  1. My son had a T&A at the recommendation of Dr L. The tonsils and adenoids can harbor infections. My son's tonsils were enlarged, and he had been complaining of a 'lump' in his throat, and he had difficulty swallowing. He also was on long-term antibiotics and received IVIG two months after the T&A. He had had PANDAS symptoms since he was very little, and he was 12 when he was treated. He is now 14 and so much better. He really is a different kid. I don't know where you live; my son's T&A was done at Georgetown in DC by Dr Harvey, who is very knowledgeable about PANDAS.
  2. I took my son to Dr Latimer in 2016. She diagnosed and treated him she was wonderful.
  3. ejh

    Maybe PANDAS??

    This does sound like PANDAS to me. My son also told me he wanted to kill himself when he was 5 years old. It was heartbreaking and it made no sense. He also had rages, was anxious, and had a number of other symptoms. He was diagnosed and treated when he was 12. He is now 14 and no longer is anxious, is catching up in math and never thinks about killing himself anymore. He is still on antibiotics because I do not want to take the risk of him getting strep again.
  4. I would say No. To me it seems that the risk far outweighs the benefit.
  5. MomWithOCDSon Thank you so much. It is actually really good news for me because I am getting really worried about permanent damage. So a full recovery of academic skills and now in college is really good to hear. My son is getting very discouraged and still needs so much support, and reading what you did for your son is very helpful. I will tell him your story.
  6. For parents who have a teenage child with PANDAS that was treated, how long do you see cognitive effects? My son was diagnosed when he was 12 after an acute very serious episode, although he clearly had symptoms since he was about 1. He had a T&A and IVIG within 6 months of diagnosis, and has been on antibiotics since diagnosis. He is a different kid: the anxiety, sleep problems and restrictive eating are gone, as well as the OCD. He is now 14. He is a smart kid, but he still has clear working memory problems, and attention problems. His math skills are terrible. He has been at a very supportive Montessori so far, but he needs to go to high school next year but I am afraid he will struggle and fall through the cracks. We applied for a supportive private school but he did horribly on the test so they will probably not accept him. Do these eventually improve? Does working memory improve? Attention? Would he need more IVIG? Any other suggestions?
  7. It sounds like PANDAS. Especially the fact that she is very well behaved with others. My son is now 13 and was that way as well. Friends thought it was me because he would have really long tantrums and get extremely angry but only with me. People often think that means it is a matter of parenting, but think of how people who are very depressed often hold it together at work or in school. No one there suspects a thing. My son was diagnosed a year and a half ago. He had PANDAS for many years (including rage when he was little, a period of severe separation anxiety when he was 8, intrusive thoughts, anxiety, serious problems in math and other cognitive problems, etc). He was treated with antibiotics, tonsillectomy, and then IVIG. It has led to a remarkable improvement. In retrospect, I so wish I had known he needed he needed treatment when he was little. It would have prevented a lot of misery for him and for me.
  8. It sounds like PANDAS/PANS to me. My son had a PANDAS episode following a strep infection and his pediatrician diagnosed PANDAS and prescribed antibiotics. The day after the antibiotics were finished my son had another episode. I took him back to the pediatrician who swabbed his throat and then said it was negative so it was no longer PANDAS but a psychiatric disorder and he needed to see a psychiatrist. Fortunately I happened to know about PANDAS so I ignored him and took my son to a pediatrician who is knowledgeable about PANDAS. He prescribed longer-term antibiotics and steroids and recommended further treatment (tonsillectomy and IVIG). It is now a year later and my son is doing so much better. Pediatricians often don't know enough about PANDAS/PANS unfortunately.
  9. ejh

    Paying for IVIG?

    We had to pay up front. I am trying to get our insurance to cover it.
  10. ejh

    PANS after autism?

    I agree with what has been said. I also think at least some kids that are being diagnosed with autism actually have PANS/PANDAS. My son was diagnosed last year at age 12. He had not been severely affected until last fall but in retrospect clearly had his first episode at a really young age and had chronic symptoms (anxiety, serious problems with math, OCD, and around age 11 beginning anorexia-like symptoms) almost his whole life. He
  11. We are in Maryland also and see Dr Latimer in DC. She is very knowledgeable. I think it is really portably to not just get a therapist/psychiatrist but to get any infections treated by a knowledgeable doctor.
  12. ejh

    Could this be PANDAS?

    Yes that does sound like PANDAS. I would contact a doctor with experience with PANDAS and get treatment asap.
  13. ejh

    Am I imagining things?

    I am sorry about how hard things have been for your family. I just want to say I completely agree with llm. This absolutely sounds like PANDAS/PANS. I also agree that the best thing is to work with someone with experience in treating PANDAS/PANS, and the sooner you do, the sooner you will have treatment.
  14. Recovery is rough. My son is 12 and had his tonsils and adenoids removed last fall. Lots of pain and difficulty swallowing for the first five days. After a week he was OK, but it took 10 days to really recover. Staying hydrated is really important in general and for recovery. Make sure you use the pain medication because if it hurts to swallow it is hard to stay hydrated. Good luck!
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