P_Mom

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Absolutely with food....severe nausea and stomach pain if not...also, do not take with any dairy...it interferes with absorption of Doxy. Protect your eyes, too because eyes also become very sensitive to light when on Doxy and my doc had me get special cocoon sunglasses. I took that med for about 6 months and hated it! I didn't have any problems with any others. Sorry all for the double (triple)(no,multiple) posts...don't know what happened.

Same post popped up about 10 times!

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Oh my gosh........what happened?????

Just a piece of advice SFMOm....MAKE SURE you eat when you take the Doxy and stay out of the sun! I am sure they told you that, but, it is no joke. I am like a kid and have to find out for myself....so, took Doxy on an empty stomach and went out in the sun....two VERY BIG mistakes!!!

Nice post, Fixit! I hear ya loud and clear!!!!!!

HI...I had trouble when I first started to read this forum, too! DS is dear son DS2 is dear son 2 (years old) DS(5) is dear son 5 years old DD...is dear daughter dh...is dear husband and so on......

Children's Hospital of Pittsburgh was also a complete waste of time. Not a single doc in the establishment would take my boys on...."we don't believe in PANDAS." You have all heard it before. They are even actually conducting a PANDAS study at the hospital....image my relief and excitement to hear that!! Well, after several phone calls......the nurse woking with the doctor running the "study" let it slip that the doc doesn't really believe in PANDAS and is running the study to disprove it!! I offered to go down and talk to the doc....provide stacks of research, etc. Nope, not interested. I was told if a child had an onset of tics or OCD and they came to the study...they did a throat culture, or, maybe it was just swab, if negative....no PANDAS....bye, bye kid. I am not even sure what this thread is disagreeing on!? The 4 docs who are qualified to treat PANDAS? Anyway, the fact that I couldn't find a doctor anywhere in Southwestern PA who had a clue about PANDAS leads me to believe, no, know, that this disorder has a long way to go. (unfortunately)

Well, I am sure I am not the norm here....but, both my kids take Augmentin 250 mg once a day in the morning. I have 103 and 75 pound boys. Now, I KNOW this does not provide 100% prophylaxis against strep, so, be aware of that, it should be given twice a day. But, all infections are cleared from them, so, for now, the antibiotic only serves to keep strep away. It has worked so far and I will keep them on it until it fails......but, whenever I see a decent (not minor) vamp in symptoms, I always up the dose, so, I may not ever know if it has truely failed...but, we have never seen a major vamp since onset 3 years ago. I like to try to atleast give them the least amount of antibiotic as possible....but, that is just our situation....some kids can't handle lower doses.

Thanks Elizabeth! oh...what is Muscle Testing??

Elizabeth, Good news that your daughter no longer has Lyme! How long do you think she had it before being treated? How long of treatment did she received before she cleared? One more........how do you know she no longer has Lyme? Okay...really one more....what are her remaining symptoms? THANKS!!!!!!

Just Goggle strep testing kits.....many choices will pop up!

Yes, I swab myself, it is easy.

Hi Jill! Hey, a bit off topic. I recommend you get some home strep tests....they can save you lots of time and money. I couldn't do without them now! They work...they are the exact same things they use to swab you at the docs. 3 years of using them for sore throats and they have never failed me. Detected strep when it was there....negative when it wasn't. Whenever anyone gets a sore throat...I just swab and go from there....quite confident in them.

Well, some people have had some success with antibiotics being immune-modulating and anti-inflammatory....that is how it could help with PANDAS when there is not an active infection. Many, however, do not see this result. I am inclined to think, for my boys, the Azith will make no difference, but, it is one last thing I want to try before hanging up my hat on the antibiotics as far as helping with the remaining symptoms.....I do, however, feel antibiotics, as prophylaxis for strep, is necessary for them. Strep is BY FAR their number one enemy....since we have kept strep away for 3 years, they have never gone back to the "bad" point they were at 3 years ago.

okay...so a friend suggested I check out Dr. T's neuro kids r us site and check out the staff pics. I have read the site before, but, didn't look at the pics. Is that him in the early years?? wow!

He got diagnosed in Sept. 2007 after he and his younger brother both contracted strep in July, and, they both presented sudden onset symptoms......younger son the whole range of PANDAS symptoms...my older son as I said. He was diagnosed by Dr. K initially.....then confirmed by Dr. Latimer and Dr. Trifiletti. 3 months may or may not be too late for titers. It depends on how fast your particular child's titers fall, and, if the infection is cleared or not. For us, we also got titers checked after 3 months from initial onset...........by then , the infection had cleared and titers were in "normal" range. (although, since doing serial titers, they were actually high for my boys, but, still in range. Younger son, when strep free, comes in at about 23 ASO...he was 103 then....older son comes in at about 85 ASO strep free....he was 185 then....considered normal, but,it actually was not for my boys...both always "normal" AntiDNAase B titers....no actual number ever given) I would go ahead and get them checked anyway...can't hurt....except if you have blood draw problems like many of us do! My kids were put on Keflex to clear the strep (first round of Pen VK did not cut it), then they were put on Pen VK for about a year prophylactically...then a year of Aug., then back to Pen VK, then back to Augmentin prophylactically (250 mg once a day ..I know)...this is what they are currently on but we are goin to try Azith to see if it helps with the minor remaining symptoms and to cut back on dosing after 3 years. It will be sooooo nice to not have to give them pills everyday.

Although I can't speak of how a child handles IV antibiotics....I was put on IV Rocephin for 28 days.

I have a PANDAS son who presented with sudden onset motor tics...a tab bit of ADHD symptoms at presentation, too. He is just a ticcer now when exposed....nothing else...no ocd, anxiety, rages, etc.

Thanks again!!!! Sounds good to me! We go every week for the next 5 weeks....something new everytime....I'll keep you posted. I haven't seen the face scrunch in younger son since yesterday after school....we'll see today when he gets home.

I find it best to e-mail him..... trifmd@gmail.com

Thanks, Nancy. It is great to hear positive experiences! I guess, so far, it seems that the braces haven't been too much of an issue for the kids. Here's to hoping I have the same experience!

Thanks to both of you! Actually, the compulsion thing is a great thought......I wonder why that didn't cross my mind as my younger son is not much of a ticcer as is my older son......his symptoms, when present, are very much compulsion based. That would explain the sustained part...until it feels right!! He has done this with evening up, licking his arm if the dog licked his other arm...etc. When he does get some tics, they are always more sustained....different than my older son...and they can happen just once....yes...I think you guys are on to something ....another compulsion. Wonder why this cropped up? I am hopeful the braces won't be an issue....he really needs the work done because he has a pretty bad cross-bite which, if not fixed, can cause him a lot of problems in the future. My husband and his Mom had it, too. When you look at him from the side....his lower jaw protrudes forward. I guess only time will tell! THANKS!