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Everything posted by nicklemama

  1. I loved reading this story. Thanks for sharing and good luck w/ the IVIG!
  2. You might call a couple of the national labs in your area and inquire about coverage and getting the bloodwork done. You may be able to get it done w/ a script from Dr B. Check w/ Quest and a couple other of the big labs. I called and was told I could get the bloodwork done and covered, as long as I had a script. I have an HMO too. Fortunately, my DS's ped agreed to run all the labs. Also make sure the lab you take your child to has someone there who does pediatric blood draws. We are switching to a BCBS policy on Jan 1st so we don't need referrals and can get some coverage for out o
  3. You must have been talking to Dr T when I was trying to call and getting a busy signal this morning!!!!!!! LOL. I did talk to him after your consult. I am glad you got your consult w/ Dr T. I was in your shoes just about 40 days ago, when I emailed and left a voice mail message to Dr T, out of sheer desperation. He has turned my son's life around. Forty days ago, my DS was ticcing like crazy, throat clearing and eye blinking. He has/had many ocd's....counting, hoarding, repeating certain words, telling on himself, countless questions about God, talking about death, severe separation anx
  4. My DS6 has been on biaxin 250 mg bid for 33 days. No problems. I am giving him Florastor probiotics each day. I do give it w/ food. Cindy
  5. I found it at Costco, lol. Its Natrol brand of 5-HTP. The bottle says take one tablet w/ food up to 2x a day. Each tab is 100mg. It does not make me sleepy but it helps me have a really nice good deep sleep w/ no waking up in the middle of the night. The bottle says no wheat, corn, milk, egg, soy, glutens, artificial colors or flavors, added sugar or preservatives (for those who are eliminaing those ingredients).
  6. I have tried it for myself to relieve the anxiety of dealing w/ our son. I didn't like the way it made me feel. Made me VERY sleepy and felt kind of jittery in a weird way. What I have found for myself in 5 HTP. It makes me feel relaxed and calm. Never have given either to our DS.
  7. I'm right there w/ you. The severe separation anxiety was my son's worst presenting sign. Last fall, it was beyond awful. Its still lurking around. Went to my neighborhood Ladies Nite Out for dinner last night. Gave a hug and kiss. He followed to the garage, opened my car door, kissed again, went to the door and stood there to watch me leave and the most horrible look came across his face. Daddy tried to distract him. At bedtime, he became difficult, had a 5 min panic, but finally cooperated w/ his dad. He was asleep when I came home. At times, I, too, feel like getting in the car an
  8. What lab did the actual work? My ped's office drew the blood and sent it off and had the results also faxed to Dr T. He emailed me the results as an attachment. Here are DS's results IGG 1 662mg/dL (292-815)range IGG 2 293 mg/dL (83-513) IGG 3 57 mg/dL (8-111) IGG 4 129 mg/dL (1-121) High
  9. Yes, we did phone consult w/ Dr T and I took his recommendations to our pediatrician. She wasn't buying into PANDAS and wasn't much help but when she heard he'd given DS a tentative diagnosis based on clinical symptoms, she agreed to the recommendations and had his blood drawn. We'll see how helpful she is now that the titers and other values are normal. Hopefully, she'll look at the results we're getting from abx. Cindy
  10. Just Biaxin 250mg 2x day, plus the first three days, Motrin 200mg 3x day. We have a neurology appt on Monday w/ a local dr who has supposedly treated PANDAS kids and believes in it. Now, the question remains if she will be convinced by a non textbook case, as in ASO and Dnase titers negative and never had throat swab when sick. We shall see. Cindy
  11. DS has never had a known strep infection because he was never tested whenever we took him to the ped's when he was sick. He's rarely sick. Usually when he gets sick during the winter, it turns to a bad ear infection. He doesn't even tell us his ear is bothering until its nearly bursting, but it always follows an illness w/ nasal congestion, chest congestion and cough. Never has complained of sore throat. When he got sick last fall, I got sick after he did and my throat hurt so bad I was taking Motrin for it. Stupid me, I never even considered it might have been strep. DS never complaine
  12. I could have written your post, except my DS6 has a very low ferritin level (not sure what that has to do w/ PANDAS)and negative Western Blot. We are consulting w/ Dr T. My DS started 250mg biaxin 21 days ago before I had blood drawn for the blood testing. The day before I consulted w/ Dr T, I took my DS to the barber for his regular haircut that we've never, ever had a problem with before, since his first haircut at 18months. He got up in the chair and tic'd so badly, blinking eyes and clearing throat, it was pitiful to watch. He became upset when the barber pulled his hair upward to cut
  13. Tampicc- Are you sure we aren't sharing the same son? I could have written your post nearly word for word, w/ just a few minor variations. My DS6 has and had many ocd's that I did not recognize. I thought he was anxious. He hoards/collects the boxes that Dove bars come in. I have to secretly throw those away. He cannot leave the crayons and coloring paper that are given out at restaurants. He might need them. He's got a million crayons already. He argues or corrects our speech/word usage, as well. We were recently told he was Aspergers and this was given as an example as being
  14. Great news for you. My dh's open enrollment is now. Closes on the 16th. We, too, are switching from an HMO to a standard health coverage. Its a pretty high deductible, $1400 pp, family ded. of $2400 but its monthly premium is $100 less than the HMO, so it almost covers the $1400 deductible I'm sure my DS is going to use next year. The motivating factor for us is not having to get referrals from our primary care docs and coverage if we choose to go out of state. My Dh stated yesterday that HMO's are for healthy people/families, which no longer applies to us. Cindy
  15. Maybe Dr T is out of town. My DS6 weighs 53lbs and Dr T recommended 250mg biaxin, which is what he's been on for 20 days now. Cindy
  16. Kbossman1- Dr T is Dr Trifiletti. He's one of the four PANDAS experts. He has a website where you can send him an email. He does phone consults for a fee.

  17. Be very careful off SSRI's. Our DS was put on Celexa w/ disasterous results. Cindy
  18. I am sitting in your same shoes right now. DS's titers were all normal. However, we are consulting w/ Dr T, one of the PANDAS 'experts' and he says normal bloodwork doesn't rule it out. My DS started biaxin two weeks ago and we've seen positive results in his mood, frustration, tics and ocd's. Hang in there. Consider consulting one of the four experts. Btw, my DS has never tested positive for strep. He was never previously tested. YOu might go to page two or three on this forum. I just asked this same question last week and got great answers. Cindy
  19. Tantrums- My son is also presenting w/ Aspergers. Funny how it just suddenly popped up at age 6 for him, as well. I see you've gotten your CamKinase back and it looks high. What were your son's titers? My son's have come back completely normal. We are still waiting on the test kit from Dr Cunningham. Its been several weeks now. Cindy
  20. The knowledge of my son's intelligence is what keeps me going when I am despairing over how much could he possibly be learning at school when he's got tics and worries and cloudy thoughts and distraction. How on earth could he possibly learn anything? He's in first grade this year and is reading on a third grade level. Math skills the same. He is doing the kindy work and does well. Right now, we have the luxury of knowing if he doesn't learn a thing until we get this under some kind of control, at least he won't be behind when 1st grade is over. The academics are just not that important
  21. Our DS is gifted. We had him tested last fall as part of a psychological evaluation when all this started and we were searching for answers. Cindy
  22. Wow, this is a lot to think about. We are in metro Detroit, not the UP. There is another new person here from the UP. We are not in a high lyme area and I have never known my DS6 to have a tick bite. He just tested negative for lyme using Western Blot that Dr T ordered. We have cats. They are indoors only and have never had a tick or flea that I am aware of. However, my DS sat on one of our cats when he was 3 and she bit him. It did not puncture the skin but he had scratches from her two upper canines where he pulled his hand from her mouth quickly. The soles of the feet pain comes
  23. Our DS6 woke up at 10:30 last night, after falling asleep at 9pm and his hair was literally sopping wet. I didn't think to check his pj's. This is not the first occurance. He's been doing this off and on for a while now. He's also complaining of the bottoms of his feet hurting, usually near bedtime, off and on. Dh thinks its growing pains. For the last year or so, our DS has not been very heat tolerant. His face gets really red and sweat literally drips from his head. Any ideas? PANDAS or not? Cindy
  24. My DS6 was also perfectly fine until last fall when he was 5 when we believe he had his first PANDAS symptoms of raging, ocds, severe separation anxiety. He had an exacerbation in March. Sometime over the insuing months, he began to display autistic behaviors and had a very transient head turning tic that disappeared by the end of the summer. A couple of weeks ago, he was diagnosed Aspergers the same day as he began throat clearing and eye blinking tics. This boy was not on the spectrum several months ago. He has only tentatively been diagnosed w/ PANDAS. Blood work came back normal this
  25. Thank you all. You are making me feel better and more inclined to think I'm still on the right track. Dr T made a list of bloodwork he wanted done. I took it to my ped, who ordered it from the lab her clinic uses. Most of the tests were performed at the Detroit Medical Center University labs. The Lyme Western Blot was performed at ARUP Labs in Salt Lake City. The worst part is I'm not sure how much cooperation the ped will give now that the labs have all come back normal. I hope she hangs w/ us. Dr T said we'd do more labs in 30 days and stay on the biaxin. I haven't spoken to h
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