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Posts posted by JPdad

  1. My son had two bouts of pink eye last year, but surprisingly did not flare from it. Most other infections have set him off though.


    The only advice I can give is to make sure you wash everything! Pillows, blankets, stuffed animals, etc. Once you get pink eye around, it is hard to get rid of. We went through 3 bouts of it in a row last year because as soon as the kids were better they'd go back to day care and get re-infected.

  2. You might want to ask on the lyme forum or PM SFMom - I know she dealt with Coxsakies extensively. I like L-Lysine as an antiviral (can get at any health food store or amazon). Research has found that it prevents replication of HHV and EBV. Not sure about coxsakies but I want to say SFMom used lysine in addition to some other anti-virals.


    Do they sell L-Lysine in a liquid or chewable tablet? My 5 year old can't take pills.

  3. DS(5) has been flaring for about a month. First he was treated with augmentin for a suspected ear infection which didn't help, then he was given zith for a suspected mycoplasma infection. Finally they actually blood tested him and found a coxsackie B infection. Being that it is a virus, antibiotics don't work. This infection is supposed to be self-limiting to 10-14 days, but we are about 30 days into tics and hyperactivity right now. Ibuprofin isn't helping much.


    Has anyone had a kid flare from this before or have any suggestions?

  4. Thanks missmom - that makes sense to me. What does the ibuprofin do? Is this something all of the PANDAS experts recommend now?




    The way I have heard it described is that the symptoms we see in our kids are an 'alternate fever response'. Most kids get an infection and the inflammation in their bodies causes them to have a fever. In our kids it causes mood and movement disorders. The Ibuprofin helps reduce the inflammation in the brain the same way it helps to lower a fever. You still need an ABX to kill the infection, but ibuprofin helps reduce the kid's symptoms along the way.

  5. You might want to consider other infections as triggers, and not just strep. My son's first episode started with a bad strep infection. A few months later he got a fever and sore throat, but was negative for strep. His tics ramped up as he was untreated, and once they finally treated him for an ear infection he improved rapidly. Now he has a mycoplasma infection and has tics again. Just realize that strep always the only cause, other infections can also be the culprit.

  6. Well, we are 3 days into Azith and have seen a dramatic reduction in symptoms. The pediatrician decided not to even bother testing for Mycoplasm, and just went ahead and treated for it. I'm going to assume that is what this was since the Augmentin didn't help at all and he's greatly improved now.

  7. I have noticed that exciting situations make my son wilder and his symptoms flare or I feel that way. Once was a fall carnival and today a birthday party. Is this common? We are in the two week observation following meds which made him worse in general, but some of the exacerbation were before meds. Thanks :)


    I have a friend who's son has Tourettes and they have talked about going on vacation and to amusement parks and how it always brings out his tics. With my son, he was winding down from an exacerbation and we thought he was just about 100%, but then a birthday party came and he had a big spike in symptoms that soon came back down.

  8. I'm pretty much convinced now it is a mycoplasm infection due to his really bad, dry cough and this thing lingering for 3 weeks. We are going to see the pediatrician today. What is the test for mycoplasm? I know that can do a blood test for it, but is there any other way to test for it?

  9. I cannot speak to that. I do not know any history. We have been thru so many flares over the years that i learned to wait them out. Sounds like perhaps your kiddo was recently diagnosed with PANDAS? Do you have a specialist that you can speak with or are you relying upon a pediatrician?


    Mostly the pediatrician who has a limited knowledge base, but also Dr T. I just can't see paying $300 out of pocket for a phone consult every time we have a question.

  10. Ibuprofen and yes, I would try to get abx. Did he have a Strep test? My son's Strep after time morphed into low grade fever and common cold symptoms. Chances are it's not just a cold. Hope things get better quickly. -Kath


    Strep test was negative. He is on prophylactic Azith every 3 days now, not sure if I should request a full dose of that or something else?

  11. Anyone have any advice for treating a flare up from a common cold? My son started with a sore throat that turned into a runny nose and a nasty cough. He went to the doctor and was negative for strep and ear infections (his usual trigger) but is having a spike in tics and emotional swings. Anyone have treatment ideas? Ibuprofin seems to help a bit, but would any ABX help? Should we just wait it out?

  12. I would consider it unusual behavior, although if it is the only behavior and not interfering with other areas of life, wouldn't worry too much. At this age they are hard to figure out because little guys do some strange things sometimes, PANDAS or no PANDAS! I would certainly monitor him carefully. Even a small sinus infection can cause a flare. Sinus infections are, in many cases, the worst culprit for hiding Strep/bacteria!


    My DS just turned 6 also has increased tics after playing video games. I have always been pretty picky about them and there are some that are worse than others for tic increase. Just a thought - I have been letting my kiddo go onto the computer for Disney's "Club Penguin". It is mild, makes him problem-solve but doesn't have the wild, fast paced stuff that many games are made of. It gives him a little connection and makes him feel like he is getting something special (we use it for incentives) without doing any harm :)


    We also have noticed that when he uses a computer and plays slow paced games on Disney.com or something he has no tics. If he plays Wii, he goes wild. I can't quite figure out the whole TV thing. Is he just mimicking the characters, interacting with the tv, or is it a tic? It seems to come and go, but always flares up with infections.

  13. My DS(5) has been having some tic like behaviors that only occur while watching tv. He repeats a lot of noises and words that occur in the show, mimics characters movements, and nods in his head in a way as if he is following the show up, down, and side to side. The grunting/echoing of the shows has popped up from time to time before, but often disappears for a long stretch then comes back. We figured it might be infection related, but his latest trip to the doctor found nothing but some slightly irritated sinuses. His usual culprit has been ear infections.


    Does anyone have experience or info on things like this? We aren't sure if it's a tic, a harmless childhood habit, or a compulsion. Again, he only does this while watching tv. He never repeats, grunts, or head bobs any other times. After playing video games (Nintendo Wii), we have noticed his symptoms get much worse, so we have eliminated video games. Any input would be appreciated.

  14. I know there are many kids here who have a hard time with taking pills. My DD5 can swallow a big Sachs B., but not my 3 yr old. I was at CVS buying probiotics because we ran out of Sach B. and noticed now that Culterelle has kids chewable probiotics. My kids love them!!


    My son, 5, can't take pills, but we just open the align probiotic capsuls and mix the contents with a drink or food like apple sauce. There is no taste to it and he doesn't notice it's in there.

  15. Hi all,


    I haven't been on the boards in quite a while. But I seem to remember reading that some families experienced success with doing the T&A removal for several months and then at about the 9 month mark (some? all?) symptoms returned. Reading that then was enough to scare me off. However in thinking about it, I'd love to hear the updates at this point. Is anyone regretful that your child had the surgery? Or have the benefits outweighed the procedure? Were the rturn of the symptoms mild or did they come back in full force and remain?


    I have a 6yo PANDAS/Lyme DD and a 5 yo strep carrier that we cannot eradicate. The ped and I discussed remvoing the PANDAS tonsils but also are starting to strongly consider removing the strep carrier's tonsils. I had my tonsils removed several years ago. DH still has his but hasn't ever seemed to trigger DD.


    I'm also interested in hearing some feedback on this. My DS, 5, has had a bunch of issues with recurrent ear infections and he is scheduled for the T&A removal pretty soon. Each ear infection was atypical presentation with no symptoms except for the Pandas movements that he exhibits. A few days on ABX and he is back to 100%, but then a few weeks later he'd get another infection.


    I haven't heard anything negative about the T&A removal, except that you still may need proph. ABX afterwards.

  16. My husband heard this story on public radio today about people with "autobiographical memories."




    Interestingly, they also had OCD. So were they born with OCD or did they have infection as a child that led to their autobiograhical memory/OCD?


    My son, 17, has an "autobiographical memory," but on a much smaller scale than is mentioned in the article. His good memory is all "auto" (remembers events unusually well about his own life only). For example, when he took biology, he wasn't particularly good at memorizing the biology terms.


    He is my only PANDAS/lyme/OCD child out of four. And he is the only one with the "autobiographical" memory." When I asked him about it, he said he felt that this special memory started in about sixth grade. Before that, he only remembers the normal amount that we all do. Interestingly, his first real OCD problems began in sixth grade, though he has had some OCD-like behaviors since kindergarten. At that time, I didn't know anything about PANDAS, lyme or even OCD for that matter, so I don't know what infections he may have had. But for the most part he was very rarely sick. No known strep or even lingering sore throat.


    My wife and I have noticed that my PANDAS son has an amazing autobiographical memory. He can pick up any toy in the house and remember the day he got it, where he was when he got it etc... He oftentimes will just starting talking about "remember the time that" and go on to tell a story about something that occurred in his life in very specific details. He is only 5 1/2, but can recall things back as early as 2.


    On a side note, I have a friend who was hit in the head with a porch swing about 20 years ago. Since that day, he developed an extraordinary autobiographical memory. You name any date of the last 20 years, he can tell you the day of the week, what happened, and the weather. He is taking part in a study at some hospital in California and has been on tv talking about his ability. The human brain is an amazing thing!

  17. The more I read here, the more it seems that PANDAS often occurs in siblings. I have a 5 year old son with a PANDAS diagnosis, and am wondering what are the odds that my 3 year old girl might develop the same over time? I also have a 15 year old step daughter who is symptom free.


    I'd be interested to see how many kids each of you have and how many of those kids have PANDAS.

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