thereishope

One the doctors told me that.

Let me begin by saying my son is not on Azith so I cannot give a a first hand opinion on this. However, like you said, long term antibiotics can also have negative side effects, specifically liver problems.Personally, I would probably stick with what is working right now. I would continue with the Ibruprofen. Unfortunately this is when it comes down to the fact that YOU live this, not him so it's a little easier for a doctor to say change this/change that w/o truly knowing what the outcome may be. Now keep in mind, over time, if you continue to give a daily dose of Advil, the effects may diminish from the dose you are currently giving. After awhile, you may have to up the dose of Advil in order to maintain where you are. It is like that when you take Advil or Tylenol for headaches. If you take it every time you hurt, it will stop working over time. Or you find you need to take higher doses or take it more often.

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I'm glad to hear things are on the upside now. Maybe her body was in a state of shock and everything will get better from here.

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Only 25% had vomitting? Wow. So many people may have had it or will have and never know. I would never even think the kids had the flu unless vomitting occurred.

I think it's a side effect. However, when I had my kids, the hospital catagorized it as an allergic reaction for the wristband. It is rare for this to happen. The profile for it is obese women in their 30's. Well, I was 18, 5'9" tall, and weighed 115 lbs. So, definitely not the profile. Now, many people do go on long term tertracycline and have no problems at all. It is common to get that prescribed for moderate and severe acne from a dermatologist. However, because of an existing neurological issue, it is definitely something to keep in the back of your mind if you decide to go that route. It did not happen suddenly but after being on them for a month or so.

I don't have experience w/ tertracyclines and PANDAS, but I do have personal medical problems with those meds. Specifically neurological. When I took long term tertacycline, I found out I had pseudotumorcerebi. Pretty much the tetracycline caused my optic nerves to swell up causing blurred vision, migraines, etc and it looked like I had a brain tumor, but I didn't. I have since found out that I have that same sensitivity to high doses of Vitamin A.

Yeah!!!!!

My son is doing well right now but I find myself constantly freaking out that I may be seeing a precursor to an episode. You have no idea how many times I check his temperature to make sure he doesn't have a fever. Even though I know he doesn't get one with strep. Luckily, I bought a temporal one so it only takes a second. His one year anniversary of PANDAS is his birthday, September 26. I am determined to have him well on that day. If he is well on the anniversary of when this started, I think I will feel a sense of accomplishment and relief. Even though he hasn't had IVIG and right now does not need it, it hovers in the back of my head that I don't know if he will need it someday. That scares the heck out me. Just knowing the hurdles I would have to jump through. Knowing he may not even be able to get it if I can't get insurance to ever cover it. Here I am worrying about things that I don't really have to think about right now. But I find myself reading every post, even those that don't apply to me. I feel I need to learn everything just in case. Life is so different than it was a year ago....

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I don't know what to tell you. I don't get why doctors aren't concerned about this either. I mean all 3 of my kid didn't get symptoms. The peds' reaction..."that's pretty common". He also said last year there were more strep cases than usual. Yet he won't give my son a propholactic antibiotic. They'll address the problem once a strep vaccine is available. That'll be their selling point. Maybe this different strain of strep is man made in order to begin to boost fear and sell the vaccine. That's the theory some have with the swine flu. The strep vaccine will open a whole new can of worms for us...

Welcome, Stephanie! I find it amazing how all of us living with this are told that PANDAS is rare and not many cases yet we all keep finding each other. All I can really give is my opinion on the use of Advil. Ibruprofen is used to bring down the inflamation on the basal ganglia. I believe it it used at different times for different people. For my son, I first used dye free Ibruprofen for PANDAS when he had a cold and I saw some behaviors resurfacing. It helped like clockwork. I now intend on using it whenever I see he is sick and PANDAS symptoms resurface. Also, if he ever has strep again ( I must use the word "if" to keep my sanity) I first intend on requesting a steroid to piggyback the antibiotic. If the doc won't give it, I already know I will religiously give him Ibruprofen for a couple weeks. I will do anything I can to try to keep to much inflamation from occurring. Note:you cannot take Ibruprofen and a steroid at the same time. One or another.

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I've found with my 5 year old son when he was recovering from residual OCD, it got to the point I couldn't allow him to play Legos if dinner was in an hour or less.Otherwise, I got the screaming and dragging. Eventually, he was able to play them whenever he wanted if he agreed to come to the table when told. I'd gave him a 10 minute warning, then a 5 minute warning, he'd come to the table willingly. Now, even though most of the time he comes in a heartbeat, I still give a 5 minute warning to ward off "I didn't get a chance to play yet" or emergency last minute bathroom stops. If he says calmly he needs to finish one more thing, I now trust him to do so and I'll say fine. I know what it's like to have to do something but I want to finish typing out my thought on the computer or I'll forget what I wanted to say. So I try to respect that he is feeling the same thing. I am happy to say dragging, screaming and chasing him back to the table no longer occurs in my house. ps..OCD does get worse if you give into obessions. Giving in is the big "no no". But it's complicated when it involves a child and toys. There's so much gray area. If he has other OCD issues, perhaps tackle those first.

Stay away from FluMist. It's a live vaccine. I think I'm going to give everyone in my house, expect PANDAS son, a flu shot in order to try to, in turn, keep him healthy. I am not giving my PANDAS son even the flu shot this year. I do know at least one mom who has a PANDAS child who gets the flu shot every year and has not had problems. I just don't feel comfortable doing it right now. He's doing well and I am scared to mess with it. No body in the house will get the swine flu vaccine.

I would consider it an obsession if he can never leave it behind. Example...you call him to dinner and he screams and and becomes physical because he NEEDS to continue to play. If he does this even with a 5 minute warning that dinner is almost ready. Another is he refuses to eat dinner because his figure isn't sitting on the table. At 7, he should be able to "let go" for that amount of time. My son is very into Legos right now. He looks at them at every store we go to. He spends hours every day building. He talks about all the time. Do I consider it an obsession? no. I think he inherited the geek gene from my husband who at 40 still owns all his Star Wars toys and Dungeons and Dragons books.

Last year (or early this year, I can't remember), the whole family got the flu, except for my son w/ PANDAS. For once, the odds were in his favor (4/5 people had it), So, there is a chance your son won't get sick. When my PANDAS son gets sick w/ other things that are not strep, I see some odd things resurface but not full force (like w/strep) and it does not stick around.

My son was like yours. He had back to back strep infections. He got it again a little less than a month after being off antibiotics for strep. I'll let you know that second back to back strep infection hit him hard. Like your child, getting dressed was a problem, choosing food was a problem.He'd stare in the dresser and in the fridge for over an hour. Yet, I couldn't make the decision for him either. He had rages, threats, agoraphobia, went through a bout of no eating at all. The list goes on and on. That time, it took longer to see improvement when I compared it to the timeline I observed the first time. During the second infection, he went on a steroid about 5 days into taking antibiotics. I believe starting a steroid that early on ultimately saved him. He spiralled down very fast. He was still recovering from the first bout of strep when the second one hit. How old is your daughter? I would still try to control getting strep. I would also drag the whole family in for strep tests (including cultures). Even if you did last time, do it again. You can skip the bird, though. Just make she washed her hand really good if she handles it.

Well, I guess you can say the good part is you're not seeing more bad surfacing, right? When my son had his steroid burst, I noted in my journal that I didn't necesarily see improvement at first, but instead, he plateaued. He stopped getting worse. That was a positive since he was spiralling downward prior to it. After hitting that plateau, he then began to improve. Always look for the good. No matter how small it may be.Keep us posted.

I'm assuming the IVIG takes the inflamation down. Am I correct on that? I believe there is still some damage done to the basal ganglia as a result of that inflamation. The question becomes how long does it take the brain to heal itself. That would also explain why not all symptoms go away immediately. I would think you want to make sure he's on as many supplements that help with brain function. Sleep is extremely important too. What are his remaining symptoms?

This disorder puts such a stress on the family and relationships. You're not the only one who has fights with their spouse that revolve around PANDAS. Mine does believe and knows our son has it. I can't imagine having that negativity in the house. But he isn't patient. It's hard to have an inpatient person around a PANDAS child. Also, all the info and research comes from me. He gets to sit there and be informed by someone and be given a list of instructions. I'd be less stressed if I had that luxury.