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Everything posted by ejh

  1. A loose tooth and also dental work can be triggers; anything that activates the immune system can be a trigger. My son (17) was treated with IVIG five years ago and was a different kid after that (no more anxiety, obsessive thoughts, suicidal thoughts, anorexia). But I have noticed that when he is about to get sick (i.e., when his immune system is first activated) he will get some symptoms.
  2. My son seems to have recovered, but like Cmac I am reluctant to conclude this is it. He had symptoms since he was very little, they became very serious when he was 11. He was then diagnosed and put on antibiotics, had a tonsillectomy, received IVIG, and stayed on antibiotics for several years. He is now 16 and doing well.
  3. My son was on antibiotics for several years. He was treated with IVIG and put on prophylactic antibiotics for three years I think. He took probiotics also and his stomach was fine the whole time. I was more worried about what strep exposure would do than about the effects of the antibiotics. I believe there is some evidence that some antibiotics (Augmenting) can reduce anxiety as well.
  4. Yes, intrusive thoughts can be any thoughts really. Kids can have thoughts about hurting themselves or others, about others hurting them, or a variety of other things.
  5. I wonder if CBT would be an option? It can be very helpful to learn some ways to deal with intrusive thoughts. My experience with my son (diagnosed at age 12, now 16) is, like PandasDad said, that OCD/intrusive thoughts are hard to get rid of, so managing them is important.
  6. Bloodwork being normal is not unusual as far as I know. And does not mean that it is not an immune problem. Have you talked to a PANS/PANDAS specialist?
  7. My son was diagnosed and treated at age 12. He is now 16 and does a lot of the things you are describing. I know a lot of other boys who do the same things at this age though. I tend to think it is teenager boy stuff. And maybe boys in their early twenties also (think frat houses and bachelor pads).
  8. The sample size in the Swedo study does seem small, and there do seem to be kids who respond week and kids who don’t. My son had one IVIG at age 12 (had PANDAS probably since he was very little), diagnosed at age 12, antibiotics, steroids, tonsils removed, none of these things helped, then IVIG and about three months later he seemed much better, and six months later I realized I had not worried about him for a long time. So for him IVIG clearly did work, and no improvement with antibiotics did not mean it was not PANDAS. I would be skeptical of the idea that if a month of antibiotics doesn’t w
  9. That sounds like a difficult decision. What does your son think? He is the one who will deal with the results of either option. If any ill effects of the IVIG could be stopped by steroids if need be doing the IVIG at the beginning of the summer does sound like a good timeframe.
  10. There is overlap in symptoms for autism and PANS/PANDAS. Some kids are diagnosed with ASD and later with PANS/PANDAS, and when they are treated for PANS/PANDAS the ASD diagnosis no longer applies. Some of the increase in ASD diagnoses may be misdiagnosis of PANS/PANDAS.
  11. Hi. First, it is great that your daughter was diagnosed while she still is very young. My understanding is that the younger the child is at diagnosis, the better the recovery. I think it is difficult to predict how kids respond to IVIG. Even the same kid can respond differently to different times they get IVIG. My son (15) was diagnosed with PANDAS when he was 12. In retrospect he had had symptoms since he was very little. After diagnosis he had a tonsillectomy and two months later IVIG. After his tonsillectomy he got worse: irrational fears, sad, scared, extremely worried about ever
  12. 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.
  13. I took my son to Dr Latimer in 2016. She diagnosed and treated him she was wonderful.
  14. 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.
  15. I would say No. To me it seems that the risk far outweighs the benefit.
  16. 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.
  17. 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 su
  18. 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 though
  19. 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 recomme
  20. We had to pay up front. I am trying to get our insurance to cover it.
  21. 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
  22. 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.
  23. Yes that does sound like PANDAS. I would contact a doctor with experience with PANDAS and get treatment asap.
  24. 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.
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