Is this normal for PANDAS?

[jenbug]

Well, my son was on 10 days of azith for M. pneymonia. He started getting better and by about the 3rd day on he was about 80-90% better behavior-wise. THe last day, which was on Friday, he started complaining of a sore throat. Yesterday and today he has been totally back to where he was before the antibiotics! Is it normal for those to wear off so fast? He also complained again of sore throat today (so did his dad), but we cannot get him in anythwere until at least Tuesday to get a strep test done due to the holiday weekend. I did give him ibuprofen today, which realy helped get him through the day. BTW, this is his first ABX treatment for PANDAS, but I believe this has been his 3rd antibiotic in the last few months (one for confirmed strep about 2 months ago, one for possible kidney infection from the above-mentioned strep or something (not sure what), and then now this last one due to M. pneumonia. Is this common?

[Tamistwins]

Well, my son was on 10 days of azith for M. pneymonia. He started getting better and by about the 3rd day on he was about 80-90% better behavior-wise. THe last day, which was on Friday, he started complaining of a sore throat. Yesterday and today he has been totally back to where he was before the antibiotics! Is it normal for those to wear off so fast? He also complained again of sore throat today (so did his dad), but we cannot get him in anythwere until at least Tuesday to get a strep test done due to the holiday weekend. I did give him ibuprofen today, which realy helped get him through the day. BTW, this is his first ABX treatment for PANDAS, but I believe this has been his 3rd antibiotic in the last few months (one for confirmed strep about 2 months ago, one for possible kidney infection from the above-mentioned strep or something (not sure what), and then now this last one due to M. pneumonia. Is this common?

 

It most likely takes more than 10 days to rid mycoplasma pnemonia. It is very stubborn and difficult to fight off with many PANDAS children. My son had a very hard time getting rid of it. Every time we did blood work it was still there and elevated more and more. I would try to get a script for at least a month. Sometimes azith doesn't work and you need something stronger like biaxin. My son used to complain all the time that his throat hurt no matter what antibiotic he was on. Come to think of it that's one of the symptoms that subsided with him, he no longer does that. If you strongly believe your son has PANDAS you need to get in touch with a pandas specialist and get him on antibiotic for a long time until he sees improvement and then possibly lower dose to prophylactic to prevent from getting further strep infections. If you get labs run ask to test for EBV(mono) also causes sore throat.

 

Good luck

[Dedee]

If he had a positive IgG and IgM titers for Myco P, then he really should be on a much longer dose of antibiotics. Myco p can hide out and depending on which doctor you go to (or which article you read), some will say it takes between nine months to two years to clear. Generally one month minimum for myco p with corresponding neuropsychiatric symptoms. My daughter took one month on Zith and is now on Biaxin. The Zith only helped minimally. The Biaxin has made the biggest difference. Also, keep in mind that in some cases myco p can be associated with other infections. I haven't had my daughter tested for Lyme or other co-infections, but her Doctor says that many times when you see myco p. you will also see other infections.

 

Is there an ER in your area that runs a "Fast Track"? Some emergency rooms run a fast track that is similiar to a walk in clinic and you are billed in the same fashion. It is usually staffed by a nurse practioner and is for non-emergent situations such as what you are dealing with when no other health care providers are available. You can simply call the hospital and ask if this is available. It may be able to get you antibiotics a little quicker. Just a thought. Best of luck with your son.

 

Dedee

[jenbug]

Tamistwins--we are currently seeing Dr. T from NJ, and he is a specialist in PANDAS and he has been wonderful! However, we are just starting on this whole journey and I just wondered what other's experiences had been with mycoplasma. I was fearing it would take more than 10 days, but Dr. T did put refills on there, so I was wondering if it would take longer.

 

Dedee--There isn't anything like that around here. We will just wait it out as we are out of town on vacation until this weekend.

[tpotter]

I am being treated for mycoP, which I suspect I had for at least 3 years (every time I felt horrible enough...prior to diagnosis, I would go to the doctor and get a dose of azith, as it was the only abx that worked for me. Sometimes I needed a 2nd dose.) I was using way too much inhaler, and none of the long acting inhalers were able to get my "asthma" under control (the docs kept telling me it was asthma, and it did feel like that). It wasn't until we saw an immunologist for my children's PANDAS, who tested the whole family for mycoP and strep that we finally found out that I was the one with the MycoP. I suspect, I kept it just under the radar, because I would keep going back on azith.

 

That being said, I have now been under treatment for 11 months. Every time I try to get off the abx, I get a flare up. I am now seeing a lung specialist, because I want to make certain I don't have permanent lung damage. What makes me the most sad is that I kept trying to get a diagnosis, and couldn't, and I exposed, not only my entire family (who all tested IgG positive, and my DH was borderline IgM), but I also exposed my patients unknowingly. This is a highly contageous disease, so I would highly suggest you see a specialist about treating this disease completely and totally. Not only for your son and family, but for everyone he ends up being around as well.

 

For the record, we found other infections along the way, and as we are treating those, my mycoP symptoms do seem to be calming down more. But, 10 days is way too short for mycoP, and it takes a specialist to know that.

 

 

If you have difficulty finding a doctor, PM me, and I might be able to give you some direction.

 

Also, you mentioned that there was kidney problems associated with the strep. This is VERY serious, and is frequently treated with IVIG. It is far more accepted in mainstream medicine than PANDAS (just like Rheumatic Fever is, and all are caused by the same GABHS.) Again, I would see a specialist about that if you're not already.

 

Good luck.

[SarahJane]

We were on daily zith & at 4 months post-IVIg when my son showed positive IgG for myco p. He was losing most of his IVIg gains & starting new behaviors. We used 6 weeks of Biaxin, & he's back in daily zith again. Now we are at 7.5 months post-IVIg, and he is doing well.

[bws]

same questions.

 

We've seen significant improvement in my dd12 with abx. however we forgot to give her the dose, several days while on vacation and whoops she really slid. I am for finishing this protocal, but HOW LONG WILL THIS GO ON FOR? She cannot be on abx forever?