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Everything posted by nicklemama

  1. That's interesting. I use Suave kids body wash w/ soothing lavendar on DS. Haven't noticed anything but he hates taking a bath.
  2. My DS7 is scheduled for IVIG in 2 wks w/ Dr K. He said swimming will be fine and he encouraged it.
  3. I had a similar thing happen. PANDAS doc received results and never notified me so we could have a consult. I happened to email Kathy in Dr C's office and ask when the results might be available. When I found out the dr had them weeks ago, I asked Kathy if she could send them to me and she did.
  4. Good luck Wilma. I hope your daughter gets the help she needs.
  5. My son was diagnosed w/ dyspraxia syndrome and developmental coordination disorder before any other rx. He received OT. We found it puzzling how he could suddenly have these issues when he was always way ahead on his gross and fine motor skills from the time he was an infant until his first what we now know was PANDAS episode. As he got better, after PANDAS dx and abx treatment, his OT was amazed. She asked around about PANDAS but no other OT had ever heard of it. He's out of OT now and I should probably send her a follow up and link to this.
  6. My son's intial episode of PANDAS was ODD. His behavior changed overnight. He went from sweet, mannerly, go along type to oppositional, irritible, angry and you never knew what would set him off. He hit, kicked, spit, scratched, bit us and called us idiots and stupid, told us he hated us, wanted new parents. He also had severe separation anxiety and if I left the house w/out him for any time at all, it set everything off. I couldn't take him anywhere and I couldn't go anywhere. I never want to relive those days. Anyway, his current symptoms are mostly tics and ocd. We just saw Dr K las
  7. EA Mom- My DS's initial low ferritin level was taken before he started abx and ibuprofen. I have no explanation for the low ferritin level. Thanks for the heads up on the supplementation amounts. I have yet to get any doctor concerned about DS's low ferritin. I started w/ the multivitamin on my own. Meant to also say, my DS has the hyperactivity associated w/ PANDAS. Maybe its also due to low ferritin. He hasn't always been hyper.
  8. My DS7 has low serum ferritin. Dr T had it checked. Its actually very low. It was 14 (22-322 range) in Oct 2010. It was 16 in early March. I have been giving him a multivitamin w/ 100% iron in it. Dr T said he's been seeing it in PANDAS kids. I have read the articles you reference. I sort of thought the ferritin was used up by some sort of bacterial infection. My DS is not one of the PANDAS kids who seems to frequently have strep. He is rarely sick. Never tested for strep when sick and his titers are completely normal.
  9. He did have a nasal spray but I thought the nose bleeds were more frequent on it and he seemed irritible on it. We thought it was a reaction to the steroid in Flonase. Yes, his eyes get so red, they look bloody. If they get really bad, I give him one Claritin for children. A full dose of two tabs seems to make him irritible, but then, it may just be PANDAS. Is anything ever going to be clear again? LOL.
  10. Well, now that you mention it, he has a touching ocd. He touches/rubs the inside area of his eye, where the tear ducts are, both hands at the same time, w/ one finger, frequently. So much so that he frequently has scratches next to his nasal bridge from inadvertent scratching while doing his touch/rub thing. Hmmmmm. Never thought of it before. He does not have typical sneezing, running eyes or nose, type allergy symptoms. Meant to also say, I use Tide Free detergent and have allergy covers on his pillows and try to keep everything washed frequently.
  11. Do any of your children have allergies? My DS7 has had an ongoing eye allergy. We are at the one yr mark. Last April, he was sent home w/ what the school thought was pink eye. He was diagnosed w/ allergy eyes and given Patanol, a prescription eye drop. For the past year, if I skip a few days of giving him the drops, his eyes turn bright red, itchy and they swell again. I cannot get him off these drops. Also, for this entire school year, he ends up in the office w/ a mild nose bleed. The office staff know him now. Its never gushing and he handles it all himself. He has had these off a
  12. It is sometimes hard to discern between tics and ocd. My DS7 also has the touching/smelling ocd/tic. I've been thinking it was an ocd. If you are/were a Sat Nite Live fan, remember the character who played a quirky girl who touched and smelled her fingers? My DS smells his fingers in the same manner....both hands come to his nose together and he smells the finger tips. I can see the actresses face but I've forgotten her name. My son also has a pattern of touching his face. Tic or ocd. Not sure. Ok, my ocd was driving me crazy so I had to look it up....Molly Shannon playing Mary K
  13. Interesting. My DS is negative for myco, as well. I just had myself tested and I am IgG positive. Please let us know how it goes.
  14. I am so sorry to hear about your fathers passing. I will just ditto JAG10. She couldn't have said it better.
  15. I seem to have trouble w/ the ones I really want to read! LOL. I haven't looked at profiles.
  16. Just got home from our first appt w/ Dr K today. No blood work, but I sent any results I had last week. Your child will be evaluated first, then you will talk w/ Dr K. My DS is now a big fan of Dr K.
  17. I cannot see your original post nor the entire first page for some strange reason. I want you to know I was told my son was Aspergers and bipolar. He also had a sensory processing disorder diagnosed, as well as Intermittent Explosive Disorder. He was diagnosed PANDAS this past fall. After 60 days on antibiotics, most of the symptoms of his diagoses went away. He's been up and down the past couple of months, but the only thing he has is PANDAS and its the only thing he's being treated for. Get your child to a PANDAS expert. I would add, my DS had no issues as a baby. This came on sud
  18. My DS7 has never had a documented case of strep. He has had yearly ear infections. His PANDAS came on after the FluMist. Antibiotics really turned him around. I could not find anyone locally to help me. I consulted w/ one of the above named PANDAS docs.
  19. Given that my son's intial PANDAS episode came after the FluMIst, I'd say there are lots more. I wish this mother had used other means of protecting her daughter. It doesn't help her case having barricaded herself and allegedly shot off a gun. However, I can understand the helplessness she must have been feeling to go to such lengths.
  20. Hmmmmmmmm.....my DS's mycoP was negative. I just had mine done and the IgG was positive at 1.43 w/ a reference range of >1.10 positive. It says on my report that this does not differentiate between past and present infection, but must be interpreted in conjuction w/ clinical signs and symptoms (of which I have none). My IgM was negative. For what its worth, DS was rx'd biaxin as the initial abx for treating PANDAS and did great on it. It started working w/in a week's time. In 60 days, it got him back to maybe 90%. Unfortunately, he was switched to zithro, then augmentin and now
  21. LOL, I would but I'm having my own hard time getting the medical records from my pediatrician. Two weeks now and counting. I have an appt w/ Dr K on Tues and it would have been nice to have been able to send them ahead of time. As it is, I am informed I will not have my son's medical records until Tues, at the earliest, when I am already in Chicago. That will have been three weeks since I requested them. Its actually an unbelievable story of how uncooperative a pediatric practice can be. Believe me, I feel your frustration and frankly, right now, I have a lot of anger .
  22. Sounds like PANDAS to me. The evening anxiety and anger after 5pm happened to my son and still does, but to a lesser degree since he's on long term antibiotics. The NIH is conducting a clinical trial of IVIG (intraveneous immunoglobin therapy) to newly diagnosed children who meet the criteria. I'd look into and see if its something you might consider.
  23. I wouldn't send them any links. It is not the business of the school to determine whether a diagnosis from a medical doctor is valid or not. A school nurse is not in a position to make that determination. I would approach them from the direction of here is the diagnosis, here is what we need and I am not asking your layman's opinions of the medical diagnosis and recommendations I've received. I would put it in writing and send it. I have to wonder if they question the parents of children w/ such diagnosis as diabetes or epilepsy or question the treatment for said disorders. I think we
  24. Expose him to bright light, if you can. I've never heard of this happening. DS7 gets 0.5mg each night before bed. Last night, he woke at 4am from a bad dream. He could not fall back asleep, so about 20min later, I gave him another 0.5mg. That would have been around 4:20. He started waking up at 7:40 this morning, on his own. I opened the blinds and he woke up and got out of bed.
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