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Everything posted by nicklemama

  1. Rachel- I have the name of an LLMD in MI who treats children w/ Lyme. He's the only one anywhere near me (and he's not close) who treats children. In fact, I think he may be the only one in MI who treats children. I got his name from the Michigan Lyme Assoc. Cindy
  2. The American Academy of Pediatrics is taking a very conservative stance on antibiotics. This spells disaster for PANDAS or potential PANDAS kids. They don't even recommend antibiotics for ear infections anymore. The eardrum has to be ready to burst before they will prescribe. I took DS to see his ped on Thurs. This was a follow up after I had him there two months ago when he was at his worst and had just started biaxin, as recommended by Dr T. Now, two months on biaxin later, he's about 90%. She was amazed. Wrote furiously while I was telling her of all the changes. At the end o
  3. Momcap- Thought I'd let you know our pediatrician took the links and told me she was going to listen to them!!!!! Thank you so much. Cindy
  4. I went to add it and its says PicBadge can access your uploaded pics, send you email, etc.... I really don't want them to do more than just put the badge on my profile. Cindy
  5. I am looking for the link to the radio program that had one hr programs where Dr T and Dr L talked plus one other doc, can't remember who. I am taking DS to ped in one hour and wanted to give her the links on the outside chance she's going to want to. Cindy
  6. Here's the address I have Dr Madeleine Cunningham Dept of Microbiology and Immunology Biomedical Research Center Room 217 975 NE 10th Street OKC, OK 73104
  7. I agree I'd not change abx and add lamictal at the same time. One or the other. My son has been on lamictal since April for his anger/raging (before we knew about PANDAS). It did help but it did not completely control anger/raging. I will tell you it takes a while to build up to a therapeutic dose. You have to go "low and slow". You want to avoid an allergic reaction that is rare but serious.
  8. Still lurking around w/ my PTSD radar on, lol! No major meltdowns. Got mad yesterday that he had to do homework before watching tv after school. The good news is, after making his anger known, he sat down in a chair quietly w/ his arms folded. A few minutes later, he got up and he read to me and then did the homework page from his reading. He asked quite a few "what if" questions this morning before school. Hadn't heard these in a while. I haven't seen any more eye blinks since. Overall, he's hanging in there. We are still plotting his behavior/symtom chart. I'm taking it to show
  9. Oh, gosh, so many things to think about. DS6 will be 7 next week. He is in first grade this year. I don't know how he managed to do so well in kindy. He was a top student and still is. 1st grade teacher sent me a message home after he'd been on biaxin two weeks to tell me how much his social skills had been improving and how much better he seemed to be (even though he's reading well above grade level and his math skills are above, as well). She did not know he'd started antibiotics or anything about his diagnosis of PANDAS. He had the regular FluMist, no H1N1. The original test f
  10. We actually don't know exactly what is going on w/ him. He's never been tested by throat swab for strep or anything else when sick. He had bloodwork at the time he was diagnosed w/ PANDAS back in Oct 10. Everything was negative. Negative strep titers. Negative myco titers. Negative for lyme. The only thing he had out of whack is a very low ferritin level of 14, where the lowest range of normal at this lab was 22. He wasn't "sick" at the time of his tentative diagnosis, except for all the behaviors that had been going on since Mar 10 w/out remitting and were getting worse. His PANDAS d
  11. DS6 has been off biaxin for exactly one day. That’s two doses worth. His last dose was yesterday morning. This afternoon, he’s a little irritable. Dh took him skiing and he went down five runs, refused to do more and got a little upset. Just now, dh was taking the bottles and cans to the store to return. DS always helps dh. He decided he didn’t want to go, didn’t want dh to go, so he sat in front of the door to the garage to try and keep dh from going. I went in and asked him what he thought he was accomplishing by sitting in front of the door and he said he was sorry and got up. Then
  12. My DS6's experience w/ Celexa was a nightmare. This was before we knew about PANDAS.
  13. My son was fully vaccinated. His records indicate he received the pneumococcal vaccines from Lederle, which has joined w/ Wyeth and makes Prevnar. He has not had the newer Prevnar 13. It did not stop him from ear infections. It did not stop him from getting PANDAS. His immune blood work that was ran shows NO immune problems. He is rarely sick. Unfortunately that doesn't keep you from PANDAS. He's never had a documented case of strep. His titers ASO and DNAse are normal. What got us here to PANDAS was some kind of infection following the FluMist vaccine last Oct 09. Cindy
  14. My DS6 is doing great on biaxin. We don't know if he's got strep or myco. His titers are normal. He's never been cultured when sick. Biaxin turned his life around. He's been on biaxin for nearly two months now. We are getting ready to go on zith, prophalatictally twice a week and see what happens.
  15. 2000 iu's a day. Sunny Gummies. DS6 weighs 55lbs.
  16. Darlene- We are a very outdoor oriented family. My DS6 could out hike everyone. He seemed to never tire and loved to be out walking. We went to Yellowstone in summer 09 w/ another family and he was a real trooper. Since PANDAS, he tires easily and frequently asks to be carried and complains his feet are hurting. He's undergoing abx treatment right now. He complains less frequently about his feet. It remains to be seen how he will recover the stamina to hike, bike, snow ski, soccer, etc... He declined to play soccer this fall. Cindy
  17. OCD. We've only used biaxin. DS had a terrible reaction to amoxi when he was four (now I wonder if it was his first brush w/ PANDAS, caused irritibility and trantruming). Right now, what exactly is causing his PANDAS is unknown. ASO and DNAse normal. Waiting on Cunningham results. Never had a throat culture when sick. I believe that's why biaxin was chosen and it has been very effective. Raging, anger, anxiety, hyperactivity and all those ocd's has lessened a great deal. Enough so that we are currently leading normal lives but walking on eggshells waiting for the next exacerbation. I
  18. My DS6 has been complaining of the bottoms of his feet hurting for the past year. He started eye blinking tics in early Oct 10. We believe his first PANDAS episode started in Oct 09. It went untreated until Oct 10. When we started treatment nearly two months ago, the eye blinking was the first of his symptoms to go. He still tics some. Throat clearing mostly. TV and computer cause him to tic more. He's only complained of his feet hurting a few times since he started biaxin in Oct. My son has had all kinds of OCD's and fears but the worst part has been his behavior which nearly did our
  19. Its so discouraging and I'm sorry you've had another door basically shut in your face. There will be a day of reckoning w/ these disbelievers. The only two professionals I have on our PANDAS side are my son's therapist, who is totally on board (but does us no good really since she's a LMSW and can't treat) and his psychiatrist. He is not going to treat for PANDAS but he was very encouraging to me at our last appt when I told him I thought DS had PANDAS. I guess its for the best. We'll continue w/ Dr T for now, but I really need the ped to get on board to help us locally and work w/ Dr T.
  20. My friend's son had molluscum. He had it for nearly a year. She took him repeatedly to the ped and to a dermatologist, who told her they would go away. They kept multiplying and she got tired of dealing w/ it. She ordered a naturopathic treatment online called Zymaderm. Its now widely available. She heard Walgreens carries it and lots of places online carry it now. In two weeks time putting Zymaderm on over 80 spots, he had less than 10. It took a couple of months to completely eliminate them. He'd have 5-10 at any one time. Caution, its iodine based, so if your child is allergic to
  21. There might be a correlation. My DS6 had his first major episode after the FluMist vax last Oct. He began his deterioration two days later. He recovered from it w/out treatment in about 6 wks. We did not realize he had PANDAS at that time. His next episode started in Mar 10. He never recovered from it until we consulted w/ Dr T in Oct. He's so much better now its unbelievable. However, we know what we are up against, he's still not 100% and know he will probably have future episodes too. Cindy
  22. Welcome! I came here just two months ago looking for help. I am by no means the expert here. My son is 6 and has been on biaxin for two months now and he's made amazing improvements. Two months ago, he had motor and vocal tics, lots of ocd's, separation anxiety, fears, rages, many aspergerish like behaviors, In fact, a neuropsychologist who evaluated him a few weeks before I found this site told us our son was Asperger's and mood disordered. That kicked me into high gear because I was suspecting PANDAS but our son has never had a throat swab for strep when he's been sick and his titers f
  23. I am planning to send a Christmas card (we do the photo cards w/ my DS in them) w/ a thank you note to Dr Cunningham's lab and to Dr T. It might be nice to send a picture so they have a face w/ a name. Cindy
  24. I'm mixing Florastor Kids powder into applesauce. My DS6 eagerly takes it.
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