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lboll

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  1. Wow, thank you both so much for the information. I really appreciate the time you took to help me out. I don't think it would be possible to somehow freeze his blood draw here. Unfortunately, it's very difficult to find people willing to the "think outside the box". However, I will contact the Cunningham people and get their thoughts on it. Fixit: What is Taurine? I haven't heard of it before. My son is on 2 other meds which help with his behaviors: one is Guanfacine which is a blood pressure medication (it lowers it and helps calm him down). The other is Trazadone which helps him sleep at
  2. Hello, we are heading back to the states in June and I would like to get the CaM Kinase test for our son, age 10. From what I've been reading we should do this during an excerbation of symptoms. However, we only have a short window of time (2 months) when we'll be there. So I have two questions: 1. Would it be worth getting this test done if he's not showing symptoms? 2. If it's okay to get one without symptoms, how do we go about having this done? Are regular pediatricians able to order this test? Or, is this only done through Dr. Cunningham? Thanks for answering.
  3. Hi, My son gets the dilated wild look in his eyes when he's having a rough period. Once he starts yelling and running around, the first thing we do is check his eyes and they're always dilated. I'm so sorry your second son is going through this. Once I realized that this was what my son had, I realized that my daughter has it at times as well- she doesn't get the dilated eyes, but she gets the tics and OCD behaviors. It broke my heart when I realized they both have it. So, I know what you're going through. It's not fun! I don't know how to post pics except that you could provide
  4. Hi there, Hang in there. I do know how you're feeling. My hubby is wonderful and so supportive. The unfortunate part is that he's supportive as long as I do the research. He won't read it. He still is convinced my son needs to test positive for strep in order to have PANDAS. I keep telling him that's not the case, but he doesn't get it, or won't get it, not sure which. But as you said, the good outweighs the bad. So hang in there. Know that you have support!!! Take care,
  5. Hi Fixit, Please don't feel badly. Like I said above, when you're feeling low, you feel like the world is out to get you. I should have assumed best intentions rather than the worst. So, I'm the one who needs to apologize. Thank you for your response, and maybe we'll meet in an ostrich hole someday. ( :
  6. Thanks. Well, we really enjoy living overseas, so it's not too terrible living half a world away. But, at times like these it's pretty stressful. I think I can wait til Saturday. I just wish I didn't have to, especially because I know that the antibiotics can help him. I've tried putting liquid meds in sprite, but he won't drink it because it changes the texture. But I haven't thought about trying it in a milkshake. Good idea. As far as respite...at this point there's no one we can have watch him because his behaviors are so out of control. but once we get them under control, then he's ver
  7. ' Thank you, Fixit. But I'm a little afraid to put up postings now. I thought this could be a place where we could voice our trials and be hard and not judged. Maybe I'm taking the wrong thing out of your posting. I certainly understand your advocating for the child...but it's hard to feel judged all the time as a parent. If you could take a walk down the street with my son and me, you would see what I mean. The stares, the looks of disgust...it's painful. And, I know my son sees them, but as you said, he's stuck. As a mom I want the people to be staring at me and giving me the dirty look
  8. ' Thank you, Fixit. But I'm a little afraid to put up postings now. I thought this could be a place where we could voice our trials and be hard and not judged. Maybe I'm taking the wrong thing out of your posting. I certainly understand your advocating for the child...but it's hard to feel judged all the time as a parent. If you could take a walk down the street with my son and me, you would see what I mean. The stares, the looks of disgust...it's painful. And, I know my son sees them, but as you said, he's stuck. As a mom I want the people to be staring at me and giving me the dirty look
  9. Yes, I agree with you 100% We have lived with his pain for about 8 years now. He is truly trapped and with all the interventions we've tried, he is still trapped. The PANDAS treatment is the only thing that we've found that can break him out of this trap. Please don't get me wrong. We love our son and have tirelessly worked to help him. My husband and I are huge advocates for him. I have changed my career and opened a school for children with special needs here in China. Our son is an inspiration. We are just feeling overwhelmed by it all at the moment.
  10. Hi Stephanie, What does that mean that your kids have had a brush with autism? Are their gut problems so bad that they have autistic like symptoms? Just curious. I'm sure you've tried gluten free diet. We did the same, but it didn't work for our son. Sadly... I've read about cruises for autistic families. I wonder if that includes PANDAS kids and families! Respite!!!!
  11. Hi everyone, I appreciate all your thoughts and kindness. Vickie, we have tried the usual antibiotics. The Amoxicillin had no results at all. My son won't swallow pills and if you crush up Augmentin it tastes horrific, so he wouldn't try that. So we were left with the injections. Last night we tried giving him some chewable Ibuprofen. He screamed and protested, but we got one down him. Unfortunately, his dose is 2 1/2 tablet. Any ideas on that? We are the ones living in China, so no other doctor here really understands what we're doing. The doctor we're working with is helping us because
  12. Hi all, It's been so long since I've posted anything. We tried our first steroid burst and round of antibiotics with my son (10 and autistic). It worked! In fact, my husband had said, "If this works, I'll bring you coffee in bed for life." Ha! I'm enjoying my coffee. When I say it worked, I simply mean that he stopped urinating every minute, stopped taking 8 showers a day, and just seemed overall, a much happier little boy. In the last week though, his behavior has shot down again. He is now obsessing with putting all his clean underwear in the wash machine. He can't tell us why as he's aut
  13. Hi, this is really interesting. When I first took my son, diagnosed with autism, in to see a doctor about a possible PANDAS link, he said, "Well, this is kind of fringe thinking. However, it was fringe thinking many years ago when a doctor suggested that the HPylori virus may cause ulcers. So, I'm willing to give this a try." I emailed this to Beth Maloney, and she said, "Look at the dedication in my book". I did, and her book is dedicated to this very same doctor who came up with the HPylori link. I'm so thankful some doctors are willing to keep pushing... When will the medica
  14. I have heard that Molluscum is a virus and will it eventually leave the system. My daughter had about 40 warts on the backs of her legs. It took several months for them all to disappear. Luckily she was only 3, so there was no problem with self esteem. My PANDAS ds did have it, but so did his brother who is healthy as can be They each started with just a few and pretty soon the had more than 20 warts each! The pediatrician recommended that freeze-off stuff. We tried that and they totally freaked out with the first wart, so we were not going to try that on 20 of them! A friend rec
  15. Hi, My non-Pandas daughter had molluscum. I had no idea it was a sign of a weakened immune system. She was taking a swimming class and I had heard that it spreads like wildfire in those situations. My son, who I believe has PANDAS has never had it. However, I can identify with the urination. We have just gone through the entire battery of tests for his bladder issues. At one point they thought he was having kidney failure, but he wasn't. He goes every 2 minutes- most of the time nothing comes out. Did that ever go away for your daughter?
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