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Everything posted by simplygina

  1. I was going to say the same thing. usually red ears are indicative of an allergy. a rapid would come back negative anyway because of the abx. how long has he been on the keflix? my son had a rash like that several times like that when he was on amoxicillan.
  2. We had titers done and they were all normal too. Not surprising since he hadn't had a strep infection or obvious exposure for at least 6 months. Unfortunately our doctor is one that doesn't understand PANDAS very well yet and figures if it is PANDAS, he should have a titer response. If there isn't an active strep infection, no need for antibiotics. Lyme and mycoplasma were normal as well. If you haven't done so, I would highly recommend doing a phone consult with one of the big PANDAS docs. It was such a relief to talk with someone who knew at least as much as I did and more about PA
  3. Zoloft was activating my son some and I didn't realize it. I don't think it did anything at all for his OCD. He also gained 15 pounds in less than a year, which is a lot for a 9 year old. Since he's been down to the 25 mg, the he has lost a few pounds and grown a little so he is only about 5 lbs overweight now for his height. Just take it slow and expect a few bumps in the road. Glad to hear the Biaxin has helped so much!
  4. Ok, now that you guys describe it in more detail, my son has his version of this as well. He actually look down and to the side though, then turns his head like he is looking over his shoulder. Interestingly his doctor noted the nystagmus in his chart last summer but then it was just that while checking his eyes we noticed that one eye would bounce a bit when he would look far to the left. Now I realize that the looking thing/tic, which didn't start until around Christmas, is also to the left.
  5. From what I have read about tapering off SSRIs, Celexa and Lexapro are the most difficult because they have such a short half life. You may have to go very slowly and there will likely be some difficult days. We've been weaning my son of Zoloft since October and can't seem to get off the last 25 mg because the withdrawals have been pretty severe and I've been wanting him to be in a better place before we try to just deal with it and push through. I think I may end up cutting the 25 if half again. One way to tell if it is a withdrawal reaction vs. something else is to give her the regu
  6. I definitely like the idea of expanding the definition to include multiple triggers. Not sure if strep is what started it all for us, but I know it has definitely been a trigger. I suspect we are PANDAX now because colds and allergies now cause a downward spiral as well. Do we think that catching classic PANDAS early on would prevent a move to the PANDAX group over time? And I do think changing the age requirement is a good thing. Looking back over my son's medical history, he began to show aggressive tendencies and severe sensory issues at about 2 following a year where he had someth
  7. Total opposite. My son talks loud all the time, but it is so much worse during and exacerbation. On top of that he talks A LOT, pretty much non-stop when it is bad. My other son is really loud as well, so I'm hoping that isn't a sign things are cropping up with him as well. I remember I was a loud talker as a child as well though and seemed to grow out of it by Jr. High.
  8. My son talks more and is loud He gets fixated on more violent things He reads and rereads books, specifically Harry Potter He swears more Separation anxiety, specifically me leaving the house or being late to pick him up, is sure that I've died, so he calls me a lot Wants to sleep in my room, at least on the floor and if I say no he makes the dog sleep with him, or magically he can tolerate his brother and will let him sleep with him only to kick him out of his room first thing in the morning Hygiene suffers (bathing, teeth brushing, nail clipping, hair combing) Very argumentative, argu
  9. Well that would certainly explain why Zoloft made my son increasingly manic with each dose increase. He's down to 25 mg and the withdrawals have kept us there until he is further away from this exacerbation of PANDAS.
  10. That is interesting thought. I wonder if I look back through his records if I will find other times we've used Omnicef and had issues. I know we've had rashes following amoxicillan.
  11. I spent all last year asking about stomach aches. From what I figured out, lots of PANDAS kids seem to have migraine type things going on. We finally decided my son had abdominal migraines. Once he started taking magnesium supplements they decreased in frequency and severity. He will still get them (just not as severe) if he gets dehydrated, too hungry, or spends too much time in front of a movie or TV screen, especially if it is a fast action movie and he sits too close. If I catch it quick a dose of ibuprofen will do the trick. If not, I usually give him a dose of magnesium, ibuprofen
  12. Well I know that magnesium is responsible for so many critical responses in the body and much of our population is deficient. The first article talks about Cam Kinase IV but how that differs from Cam Kinase II I'm not sure. I think it is quite possible that PANDAS kids may either be susceptible to developing PANDAS in the first place because many of their metabolic activities are compromised by inadequate nutrition OR because they have PANDAS they become malnourished and supplementing can bring their bodies back to a more normal state. Either way I think supplementing can rea
  13. I will thanks. He's been taking it for a couple of years now and I don't notice an effect but I'll keep watching to make sure I'm not just missing something.
  14. Emotions all over the place would be an understatement. I don't think I'll ever do Omnicef again for him. He just couldn't handle anything and was going from rages to crying to hyper and silly and back again within hours. The 10 days on Omnicef will go down as one of our all time worst times thus far.
  15. I'm so glad! I agree about Dr. T. He has been amazing.
  16. I've been wondering if what i thought was the initial episode for my son in second grade when the ocd started really was the first. I remembered that he went through a really difficult time around Christmas the year he was in Kindergarten. He was so moody and convinced he was bad so Santa wasn't going to come. I remember sitting at my mom's house the day after Christmas wondering why my 5 year old was so angry and difficult. I also remembered that it wasn't too long after that his teacher recommended we have him evaluated for ADHD. I couldn't remember the dates or the time line exactly, a
  17. Biaxin is a macrolide. A cousin of azithromyacin. It will kill things like intracellular strep, lyme and mycoplasma that other abx can't get to. Probiotics are the good bacteria that is necessary for the GI tract to function correctly. Without them people suffer all sorts of issues like digestion problems, diarrhea, yeast overgrowth, leaky gut, etc. Antibiotics kill both the good and the bad bacteria, so when taking an antibiotic it is a good idea to take one to replenish. You can buy them at the grocery store. A good brand is Culturelle. The good ones with a lot of organisms aren't
  18. I keep wondering if it means some things improve while others are getting worse! He definitely slept better on the Augmentin, but even that is beginning to improve as well. Your experience sounds somewhat like what we experienced on Omnicef. He'd be fine, then so angry, then laughing and silly, then crying because life was hard, then hugging me and loving me. It was crazy. It is the first time I was truly worried about his mental state. He was so up and down it was bizarre. I was extremely apprehensive about the Biaxin. Then I made the mistake of reading a website where people could
  19. My son has one eye that bounces back a bit when he looks far to onside. The doctor is aware of it but didn't seem to think it was a big deal. One of the first things I noticed when my son was 7 was that he would shake his head side to side. He told me he had to do it to "keep the color in the world". He didn't do it for very long though. It was also while he was watching TV.
  20. Sorry you are here because your child is having issues, but Welcome to the Club! You are in the right place because it sure sounds like PANDAS to me! You are lucky to have noticed such a clear correlation between the strep and his behaviors. This board has been a life saver for me! There is so much information and the support is so important to me right now.
  21. Do you think augmentin xr is warranted to ask for until we can do the ivig or sticking with the augmentin 875 is sufficient - we are looking at being able to schedule it within 2-3 weeks, and then depending how far he is booked out prob May?? I asked Dr. T. to switch us to the Biaxin XR simply to help make taking that and the supplements I give him more convenient. You shouldn't give magnesium or probiotics with it and those are two of our staples. I don't see any reason not to ask.
  22. Hard to say. I often wonder with my younger son if he is having issues as well or if he is picking things up from his brother, or if he is doing something that is age appropriate. Yesterday we had to use a public restroom. My PANDAS son has always hated using one. When he was little it was the loud noise of the toilets, now it is the idea of someone else's behind having touched the seat. So yesterday my younger son really had to go but was fighting me the whole time, saying he could hold until we got home but that wouldn't be for several hours. Finally he said, "do you have any idea how
  23. From our experience regarding my son's moods and emotions, I think it is the Augmentin. A lack of stressors may be contributing, but when my son is in an exacerbation pretty much anything can send his mood into a tailspin. From the stories I've read, mood seems to improve first, then ocd, then tics. Maybe not for everyone, but that seems to be the trend and that is what I'm noticing with my own son. Like I said in my post, both he and I can handle the ocd and tics better when his moods aren't so crazy. Hang in there. It sounds like you are making it work and things are headed up.
  24. Wow!! I thought the shiners were pretty indicative of severe allergies! Maybe other sinus issues? Did you do both environmental and food? What is interesting with my son is that he's always had puffy bags under his eyes (not ALWAYS, but more often than not) and those are gone right now but he woke up a few days ago with the shiners. My other son, who displays seasonal allergies both spring and fall also has them going on. Zyrtec seems to help but I'd like to know what it is they are each allergic to.
  25. As many of you know, we switched to Biaxin last week. Our test results have been very uninformative but we know that illness causes an exacerbation so we decided to see what happened with a switch of abx. As with Augmentin, but even more so, we saw an initial improvements within a few days. His head cleared up immediately which confirms my hypothesis that he is getting bacterial sinus infections. His mood went from extremely turbulent to wonderful. His moods are stable, he has reasoning ability back, he has patience and flexibility. The things that normally frustrate him still do, bu
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