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Everything posted by nicklemama

  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. We have a brand new Yahoo Group.....MichiganPANDASSupport. We are a very small group and the Yahoo group is brand new. We were emailing before. I'm a new member of a few weeks and I've learned a lot. Come join us. Cindy
  9. I received an email from Dr Cunningham last week that they are backed up 7-8 wks from the time they receive the blood. She said they are basically slammed w/ new cases, including ours. Seems the word is getting around. Cindy
  10. Yes! torticollis and plagiocephaly. No helmet. Head went back to nearly the proper shape. Cindy
  11. On Friday night, I desperately sent Dr T a lengthy email at his website and called his office number and left a short message. He sent me an email back giving me a time frame to call him on Sat morning and that's how we started. Took DS6 in on Monday to ped's w/ the list of blood tests to run and abx. Started abx. Waiting on results. Cindy
  12. We are working on a consulting basis w/ Dr T and going through our own pediatrician who is following his recommendations. There are fees for the consultation but it beats traveling several states away. I highly recommend consulting w/ one of the four PANDAS drs, if you are unable to travel. Don't go it alone w/ your own pediatrician if they are unfamiliar w/ PANDAS. I know Dr T and Dr K do phone consults. Don't know about the other two. Cindy
  13. We started the OT for sensory processing disorder in June of this year, before we knew or suspected PANDAS. My son has turned into a sensory seeker. He's hyper now and has a hard time sitting still. It has helped. He has "exercises" was use daily at home, before and after school and he has been taught things he can do in his seat when he feels he's getting wiggly. Our insurance is paying for it. The OT coded it as some sort of developmental problem. Cindy
  14. YES!!!!!!!!!! My son was diagnosed Aspergers this past Monday after a full neuropsychological evaluation. I asked the dr over and over how he could have been normally developing for 5y9m and then suddenly go downhill. He felt there were signs all along. This all started last Oct after receiving the seasonal FluMist. We've had the typical wax and wane symptoms. Better in Dec, Jan, Feb, explosion in Mar. Better this summer. A little over a week ago I told my husband it was starting up again. Right now, he has all the signs and symptoms of Aspergers. Tics and ocd's. Talking in circles.
  15. Steph- I could have written your exact same post. I don't have any thing to really offer you. We are trying to get a diagnosis of PANDAS for our son. Waiting on our CamKinase kit right now. We just returned from DC where my son was given a complete neuropsychological evaluation. He was diagnosed Aspergers, very high functioning, mildly affected. He's about to turn 7. This all started on year ago this month. Just wrote this to let you know you are not alone. We, too, are struggling. Cindy
  16. My DS's issues all started last Oct after being given the FluMist. He will never be vaccinated again. Cindy
  17. I contacted Kathy Alvarez in Dr Cunninghams lab. She responded promptly. They are not sending out kits right now. She said they were swamped w/ new clients and in the middle of revising the consent form. It has to be approved by the University so there will be a wait before the kits will be mailed out again. Thank you all for the information. Cindy
  18. My DS was a licker. Licked everything. Now, he has stopped the licking and he's smelling things. Tonight, I handed him the forks to place on the table. I caught him putting them up to his mouth. I asked him not to lick them. He replied...."Don't worry Mom, I'm just smelling them". We had him evaluated for Sensory Processing Disorder in May. He was diagnosed a sensory seeker and is receiving OT for it. These "sensory issues" cropped up after what I believe was his first episode last fall. Now I see they may be compulsions. Cindy
  19. I need to know how to get a Cam Kinase kit from Dr Cunningham. I'm not going to get any help from my ped. I am going to have to find a new ped somehow. I took him to my ped 3 wks ago and requested strep titers. She agreed to do the ASO titer plus some other bloodwork. I called a week later and was told all normal. I picked up the written report Mon and the ASO titer was not done. I called the dr's office yesterday. The phone call was returned today telling me the lab made a mistake and did not run the ASO titer. I will not be charged. I can take my DS to the ped's office for a repeat
  20. Anyone have a recommendation for a PANDAS friendly dr in SE MI? It looks like I'm going to need one. Feel free to email me privately, if that's an option on this forum. Cindy
  21. Thanks for the suggestions. I'm waiting on a call back from ped's office. I called the lab and they won't speak to me about it. Said I'd have to take it up w/ the doctor's office. Cindy
  22. I know many/most of you have been dealing w/ these things longer than me but here's the aggravation. Took DS to his ped on Sept 15 to talk to her about my suspicions of PANDAS and get her to run titers. She agreed to do the ASO titer and some general bloodwork like liver, kidney, thyroid function, plus some other more routine stuff. I was told I would receive the results. I assumed (you know what happens when you assume?) it would be mailed to me. I waited two wks, then called. Informed they will not mail anything do to HIPPA laws. I would have to come and get it. OK. Well, what does
  23. I give DS Coromega Squeezers in lemon lime. They have a lot more Dha and Epa than what you find in the gummies. I order them online.
  24. I use 0.5mgs on DS5. It knocks him out in about half an hr. I buy the chewables at Trader Joes.
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