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Everything posted by simplygina

  1. Sounds like our pediatrician. He know what PANDAS is. He's even treated someone with a clear cut first time exacerbation. But he doesn't know enough to help someone like my son, who is 10 and has likely been dealing with this for 5 or more years. He doesn't know enough to feel comfortable prescribing abx, especially for a child that hasn't presented with classic strep symptoms in over a year. He had never heard of intracellular strep. When our titers came back in the normal range he basically decided I was set on something that just wasn't so, even though he did admit that he seemed to f
  2. A great book about allergies is Is This Your Child? by Doris Rapp m.d. My son ALWAYS gets worse in the Fall. Just as school starts. I always thought it was stress about school. This past year was the first year that he actually showed signs of "hay-fever". It also was when he started having multiple tics, including a few vocal ones. Up to that point he had a few behaviors that I couldn't decide if they were OCD or tics but were infrequent and weren't noticeable. The new ones were obvious, like shoulder shrugging, clearing his throat, repeating what he'd said or what someone else ha
  3. I think mold can be really bad. I know my son's last major exacerbation came after spending the weekend in an old musty cabin that I'm sure had mold issues because they were telling us about all the flooding they'd had over the years. Plus it had an old sauna and he spent some time in there. the carpets were from the 1960's and I shudder to think about what was lurking in there. Top that off with a ride in a snow cat breathing gasoline fumes the whole way and it only took about an hour for things to south and stay that way for almost a month.
  4. My son doesn't seem to have a raise in titers. He's had strep a bajillion times though. I think for some kids either they don't mount an immune response correctly, or it is erratic and difficult to time a titer test to capture the full picture.
  5. i would guess he's coming down with something. allergies may be a contributing factor to opening the door for something to start brewing though. but it could be some other exposure or a virus. the last exacerbation my son had in february came after exposure to gasoline fumes and a dusty moldy cabin. i couldn't believe that he was going downhill so rapidly. 2 days later he had a sinus infection and ear infection even though he was on full strength Augmentin. i think the inflammation caused by the exposures let whatever pathogen it was (i suspect strep but his rapid was neg.) really get
  6. My son's handwriting is never great, but during bad times it is AWFUL. One time in 2nd grade I was passing the copy room and heard his 1st grade teacher ask his 2nd grade teacher if his handwriting was still awful. She laughed and said she'd never seen worse. It wasn't said in a mean way so I didn't take offense. It really was HORRIBLE his entire second grade year. It's something I usually mention at the first teacher meeting before school starts. At the beginning of this year (4th grade) they took placement tests to determine their class for language arts. DS has always been at the
  7. Is he trying to be funny? Silliness is a common PANDAS behavior. I watch kids at my gym's daycare twice a week and there is a 3 year old that also blurts out random words that he thinks are funny. It's totally him trying to funny because to him and several of the other younger kids, IT IS funny.
  8. I could haven written your post myself. Even still there are things that I just can not tolerate. DS has to touch things and even amount of times with each hand until it feels "just right". Most the time I just watch and wait because it is never more than about 10 seconds. But sometimes it is ME that he is touching over and over and I HATE IT!!!! Sometimes I muster up the ability and patience to say, "I love to be touched by Myles, but not by OCD", which works and is kind. But sometimes I end up barking, "STOP TOUCHING ME LIKE THAT! YOU KNOW I HATE IT" which also works, but makes m
  9. We parents definitely go through the stages of mourning don't we! I spent the better part of my son's Kindergarten year crying. I didn't know what was wrong, I just knew something was. I felt like a failure. I mourned the loss of the child I thought I would have and the mother I thought I would be. In second grade I spent the year worried sick. I didn't know if the OCD would take over his life. I projected all sorts of disasters into his future and mine. I worried he'd be made fun of, never have a girlfriend, never get married, not be able to work, live with us forever, be depres
  10. We quit using the Bontech Supps a few months ago to see if we did better on individual supplements without the taurine. I decided to give them a try again this past week just to see if they did help and it is so much simpler too. I have to say I have noticed a real reduction in tics this week. The Biaxin has really helped the mood and a good portion of the OCD but it didn't seem to decrease his most common tics at all. So in our case, the taurine, which is usually a tic reducer for most, definitely does help.
  11. I thought I read somewhere (maybe in Saving Sammy?) that the higher dose was thought to have an anti-inflammatory effect.
  12. I haven't read all the replies but I just want to tell you that my son leads a really normal life. He goes to public school, is on a karate team, does summer camps, has lots of friends that are very accepting of his "quirks" and does well in school with teachers who really like him. Most people don't even know he has issues until I tell them. We just have periods that are harder. I think I'm the one that takes it the hardest of all. I don't believe isolating him is good for him mentally and things have never gotten so bad I've considered doing a specialized education plan for him. We jus
  13. He sounds a lot like my DS was at 3. The growling progressed to scratching at one point. We did something we said we would NEVER do and started driving him around at nap time or at bedtime because we couldn't get him to settle down in his bed and we were both so worn out by the battles. Don't let whether or not he's intelligent color things. Smart kids seem to fall under the radar just because they are smart. I can't say it is PANDAS, but it could be. At 3 my son didn't have OCD or tics. He was just difficult and defiant and sensitive and just a little off. I'd do a phone con
  14. I believe my DS, who is now 10, had his "sudden onset" a few months before his 3rd birthday. He also began biting kids at the daycare. The other major "sudden" symptom was the extreme noise sensitivity. Since DH tends to be rather anxious, I figured he just inherited that from his dad. I knew things weren't right with him but I thought it was just an extreme case of terrible twos brought on by not loving his daycare and me being pregnant. I knew I'd be having the baby soon and quitting my job to stay home so I figured it would resolve itself. But he got kicked out first. My sister watch
  15. I had an eye opening experience like that last summer. We went to see a reptile exhibition at the local library. The little room they were doing the presentation in had about 20 aquariums full of snakes and lizards. The snakes were all really active and moving. I wouldn't say that snakes is a big fear of mine, but watching them all move around with so many moms and kids packed into a smallish room was started to make me feel weird. First they showed the boa constrictors and were walking around letting kids touch them. Fine. I've done that before. But then the presenter keeps tellin
  16. I do give my son the adult dose of both. I'm actually considering buying a very high dose supplement. I know some parents do with good success.
  17. Most people here seem to think the XR version (same thing as ES?) is much kinder to the stomach and actually works better. There is some thought that the lower dose of clav acid is better for kids as well. I don't know if you've read Saving Sammy, but XR is what he used. You can still take it twice a day and it actually lasts longer in the system so the benefits are more long lasting and consistent. Augmentin doesn't seem to protect my son at all though. He still manages to get ear and sinus infections on it. Lots of people have great success with it though. We are doing Biaxin and t
  18. I'm wondering the same thing. Plus, I don't know when to say we're finished. We are at day 25 or so with 1 more 10 day refill which I plan to use. Dr. T. mentioned eventually going to a prophylactic dose, but I don't know if I'm willing to risk it right now. I'd rather wait until May when the weather has dried out a bit and exposure to everything that is still going around is down. We didn't test positive for myco, but the Biaxin has definitely worked well for us. I think we were dealing with intracellular strep.
  19. usually Benadryl. It doesn't seem to make him overly tired and I buy the generic dye free formula. I've given him Zyrtec as well but it doesn't seem to work as well for him. I hate that it only lasts 4-6 hours because I'm not very good at remembering to get him the next dose. He usually gets one in the morning and one before bed when I can remember.
  20. I had to hound him a bit after the first round to get the refill called in. Keep trying. I think he is crazy busy and overwhelmed.
  21. Each time we have refilled my son's generic Biaxin Rx, the pills are from a different manufacturer. I remember reading somewhere that generics are not usually exactly the same as the name brand drug, and some people don't do as well on the generic. My son did fantastic on the first round, I switched pharmacies and he hated the smell of the pill during the second round (actually made him throw up one night), so I switched back to the first pharmacy but still got a different manufacturer. Both the 2nd and the 3rd round haven't been quite as successful as the first which I've just as
  22. We are a few days into our 3rd course of full strength Biaxin. Is Biaxin something he can stay on full strength for a long time like the "Sammy Dose" of Augmentin? or do we need to go to a prophylactic dose soon? We've got one more refill and then I will need to contact Dr. T. again to update him and decide what to do. Those who are using Biaxin, how long have you been taking it and what are your plans? Gains have been good though some back sliding this past week or so. He's had a really runny nose which I think is allergies because I've got them pretty bad myself. His mood has st
  23. My son is also on Biaxin and we had also been improving until this week. Mood is still good, but his tics are much worse than they have been. He almost never wakes up with tics, they usually increase as the day goes on, but the past few days they have been pretty constant from the time he wakes up until bedtime. Even some of the ones that were gone for awhile. I need to track all the stuff. Too bad I'm the one with ADD!
  24. I knew my husband and older PANDAS son are because they get so cranky. I didn't realize I was until I had my blood sugar tested a few years back and I was right on the line of pre-diabetic. I changed my diet big time, lost 40 pounds and now I'm not as much. I realized after reading "Little Sugar Addicts" that my younger son is too, but like everything else, he just presents it totally different than my other son. He just keeps coming into the kitchen every 10 minutes and is like a bottomless pit filling up on crap. And he tends to drink his calories. If I'm good about having a hearty aft
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