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Everything posted by nicklemama

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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.

  10. Be very careful off SSRI's. Our DS was put on Celexa w/ disasterous results. Cindy
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. Our son has rarely been sick. He had a couple of ear infections as a baby, then went two years w/out seeing his ped, except for well child checks, because he did not get sick. He had an ear infection in Jan 08, when he was four. He was given amoxicillan and had a terrible reaction to it......tantruming, oppositional. So, after about 5 or 6 days of amoxi, it was discontinued and the ped said his ear infection would get better. It did. Next year in Jan 09, age 5, another ear infection. I can't remember exactly what he was given, Omnicef I think, ear infection went away. All was well unti
  20. I am rather surprised. Stunned really. Got the results of all the lab work done. IgG and subclasses normal. IgA normal. IgM normal. Lyme Western Blot normal. Mycoplasma IgM AB normal. anti strep DNaseB normal. Antistreptolysin O normal. Mycoplasma IgG normal. He shows absolutely no signs of ever having had a strep or mycoplasma infection. Two things outside normal. IgG subclass 4 is a little high (probably allergies) and ferritin is low (needs more iron in diet). My son who seemed to us, perfectly normal, changed overnight after the FluMist last Oct, when he was 5.5yo. Has present
  21. My husband and I saw the rerun of the original on Mystery Diagnosis about 6 weeks ago on a Sun night. We turned to each other and said "This is what DS6 has". I began to pursue it immediately. I had DS in to his ped the next morning. Unfortunately, she did not run the titers and was very skeptical. I am waiting on the results of the labs ran a week ago, at the request of Dr T, which his ped had no problem running after seeing how different DS was last week vs 6 wks ago. He began an exacerbation and was ticcing for the very first time. Our DS is not as bad as Sammy was but he has the
  22. First thing I thought of was PANDAS. I am very new to this but I am starting to believe this is much more widespread and undiagnosed. My DS6 is a perfect example. He was seemingly perfectly 'normal' developing until last year when he received the FluMist. Rarely sick, except for an ear infection each winter. Now, he fits the DSM for Aspergers (except for the age 3 or before requirement). If this had happened after a vaccination when he was a toddler, like happens to many kids diagnosed autistic, we might have never known he had PANDAS. Instead, it happened well after we 'knew' him and h
  23. Never again. The FluMist in Oct last yr set off PANDAS in my DS6. Dr T said no more vaccinations ever for DS, except in extreme circumstances. Cindy
  24. Thank you all for the information. The pharmacist just called me and tomorrow's pharmacist is going to try and get this done or call Dr T and get a new prescription. Not only do they not want to refill the prescription because of the timing thing but they are saying the dosage is too high for a 6yo child. Its 250mg 2x a day. Cindy
  25. Does it never end? DS was prescribed biaxin by Dr T last Sat, for 10 days, 2 refills. I called in the refill this morning and went to pick it up this afternoon. Our insurance company has denied it, saying something like its too soon and doesn't meet some kind of guidelines. DS is supposed to be taking this for 30 days straight. We have enought to last until his Tues pm dose. The pharmacist told me she was a new pharmacist and not really experienced in getting the insurance to cover it. She's going to keep working on it today and if not successful, hand it off to the experienced phar
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