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nicklemama

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Everything posted by nicklemama

  1. Glad to hear she did fine going cold turkey. That gives me a lot of encouragement to take my DS off lamictal. What dose was she on? My DS takes 50mg bid.
  2. I'm using Florastor 2x day and Culturelle 1x day for DS7 55lbs.
  3. My son has been on lamictal for nearly a yr now. Prescribed before we knew about PANDAS. He was diagnosed w/ Intermittent Explosive Disorder. Well, that certainly fit. Now, he has no explosions after abx treatment. I have been considering weaning him off lamictal. I spoke to his psychiatrist about it and we may do it this summer. I'd be very careful about going cold turkey w/ something like lamictal. I'd really try and wean from it. Lamictal did keep my son from all out raging but he would still be very aggressive and irritible. Abx took that all away.
  4. My son has done really well with biaxin and augmentin. He was given azith prophylactically and did some back sliding. However, he was only taking azith twice a week. The others was high dose for treatment. Maybe there is something w/ insurance companies and azith. I could only get 8 250mg pills at a time for azith. Currently, I have 30 days supply of augmentin. That's 60 500mg pills. Go figure.
  5. My DS starting getting extremely red eyes back in the spring which coincided w/ an exacerbation (before we knew PANDAS). First, the ped said a virus. Two weeks later, it came back. She changed her mind and said allergies. She prescribed Patanol(an allergy drop) for his eyes and it clears it up. Currently, he's been having red eye issues for several weeks. I can't stop the drops w/out the redness immediately coming back. When his eyes are red, he has absolutely no other symptoms of allergy. No sneezing, no runny nose and his eyes do not get watery, just bright red. Do I need to say
  6. We've seen two neurologists. The first one told me if I'd just be more consistent and firm in my parenting, my DS would not be acting the way he was. I went there before I knew about PANDAS, thinking he might have a brain tumor as his behaviors like raging, etc... came on so suddenly. All she did was a neurological screen in the office. The second one I saw after PANDAS diagnosis, after ticcing started, while waiting on Cunningham test results. She was very interested in Cunninghams work and the test results. She also did a neurological screen. No meds offered or suggested. I sent t
  7. We have four cats and no definite trigger identified. All titers, myco P included are normal. Interesting. Is there a way to know if your cats have myco P? Are they sick w/ URI's? My cats have not had so much as a cold in all their years (knock wood). The oldest is 12.
  8. From my mother- "I never really thought anything was really wrong with him. He just seems kind of spoiled to me."
  9. We have not seen side effects from Florastor. My DS7 has been taking Florastor since Oct when he started high dose abx. We've seen nothing but improvements. He's been taking one packet of Florastor Kids twice a day since Oct.
  10. Hindsight: 1st episode, anger, irritibility, age 4, lasted about a week, then complete remission. Took amoxicillan for ear infection. Hindsight: 2nd episode,anger, irritibility, age 5, lasted a few months after another ear infection, complete remission, took omnicef for 10 days. 3rd episode, major exacerbation, anger, irritibility, rage, severe separation anxiety, ocd, age 5.5. No known illness, received FluMist vax. Lasted two months. Remission to about 85% of previous self. Spent a year trying to get proper diagnosis, knowing something was seriously wrong w/ him. 4th episo
  11. I used the sample letter found on the pandas network and made it tailored to my DS. I sent one copy to his teacher, one to the principal and one to the resource room teacher. He was diagnosed Aspergers just before PANDAS and I was trying to get some services for him. What a joke! He's working ahead of grade level and didn't have many issues as school, so they really balked at giving him any services. He was placed in a social skills class, once a week for about 20min w/ the social worker. After we got the PANDAS diagnosis and treatment, his Aspergers behaviors went away. I had already h
  12. My son was not ASD before PANDAS. He was diagnosed Aspergers at age 6y10m, just before his PANDAS diagnosis. The Aspergers behaviors have disappeared w/ abx treatment for PANDAS.
  13. In my experience (w/ our ped) its better just to go to someone who understands and will treat PANDAS. As for the SPD, you may find treatment of PANDAS relieves the SPD symptoms. My DS suddenly had SPD issues in kindergarten. He was diagnosed SPD-sensory seeking in summer 2010, at age 6.5 and we had him in occupational therapy. Once he got the PANDAS diagnosis and started on abx, the SPD went away.
  14. Welcome. I would add to this discussion that OCD is not always so apparent in young children. Our DS is your DD's age. He turned 7 in Dec and started first grade fall 2010. He's been battling PANDAS for more than a yr now, only diagnosed in Oct 2010. He has a diagnosis of intermittent explosive disorder. Looking back, his explosions occurred when we interrupted OCD's we were unaware of. He has a "just right" and cannot stop what he's doing until its just right in his mind. We took it as defiance and would insist he stop, which resulted in a blowup. He also has counting ocd, similar to
  15. My husband and I caught this episode in Sept and that's how we came to know our son had PANDAS. We'd been to all kinds of doctors. Not one mentioned PANDAS but they mentioned plenty of other scary things.
  16. If I had chosen not to work w/ a dr I'd never met, my DS would still be in a major PANDAS exacerbation right now because there are no local doctors for us to work with. Our ped will not take the lead and treat but she will take the direction of Dr Trifiletti. It took one year to get help for my son, going from dr to dr, trying to figure out what was wrong with him. I had a parent on a parenting board suggest PANDAS to me and then my dh and I happened to catch the Discovery Health Channel episode about Sammy who has/had PANDAS. The longer you wait, the worse it may be for your child.
  17. My DS7 is able to hold it together at school. I don't know how. Right now he's doing very well on abx. When he was at his worst, he had some ocd's at school but they weren't very noticeable. His kindy teacher last year thought he was great because he was always cleaning up the room and picking up even the tiny pieces of paper off the floor. She would tell me how wonderful he was. She had no clue that was his cleaning ocd. He went his entire kindy year untreated, undiagnosed. This yr, in 1st grade, he had lost his social skills over the summer and his teacher had some concerns that h
  18. My DS7, 55lbs did not have good results w/ azith, 250mg 2x a week. He started the downhill slide. After 30 days, we threw in the towel and he's currently on 500mgs augmentin bid.
  19. The flu mist set off my DS's PANDAS. In looking back, we see he probably had his first episode at age 4 when he had an ear infection. Next episode at age 5 with another ear infection. Both those episodes were very mild w/ irritibility and tantrums lasting a few weeks but resolved on their own and we thought it was a phase. The third times the charm. He had the Flu Mist and all ###### broke loose in our house. The rages were the worst. I can't tell you how to turn off the flu mist. DS was still undiagnosed and the 3rd episode remitted in about 2 months. Fourth episode after yet another
  20. Count me in as wanting to know the name of this cream. Cindy
  21. My DS's ferritin is low too. I am giving him a children's multi vit w/ 100% iron in it. We don't know how his iron got low. His is very low, 14ng/ml. The range of normal at the lab was 22-322. I was told not to give him milk or other dairy when he takes his multi vit w/ iron, as calcium interfers w/ iron absorption. Before we knew he had PANDAS, he did some food restrictions. Some days were hard to get him to eat and he absolutely refused most meat. That may have a part in his ferritin deficiency. Haven't redone the bloodwork yet, so I don't know if the multi vit is even helping.
  22. It was confirmation. DS has negative titers and no documented case of strep. His symptoms fit the PANDAS pattern and he responds well to antibiotics. Dr T did not require the test for diagnosis. It was for my peace of mind (if you can be at peace that your child has PANDAS). Cindy
  23. I take hydroxychloroquine (Plaquenil) for RA. I've been taking it for 13 years now. No side effects for me. Milder than the other RA drugs. The drawback is its not very effective for those w/ more than a mild case of RA. Its a thought. I have an appt to see my rheumatologist next month. I plan to ask her some things. My DS was diagnosed w/ PANDAS after my last appt. Cindy
  24. I could write your post. My DS's CamK came back in PANDAS range. His ASO and anti DNAse 2 titers are normal. He started treatment in Oct 2010 and we have seen him have improvement of about 95% after antibiotic therapy. He's still on it.
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