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We had IVIG three months ago, with such good results! Our son is still occasionally going through some bumpy periods but they are short lived. I think his body is searching out the last of those nasty antibodies.

 

So now, until he's 21, we've got to keep him protected from strep. Insurance will only cover four 500 mg Zitho pills a month. My doctor says that with the half life of zithro, he's unprotected one day out of the week.

 

Thoughts? Any of you now doing antibiotic therapy post IVIG doing a similar regimen? Does it keep them protected? Or should we go to daily penicillin?

 

Thanks.

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So now, until he's 21, we've got to keep him protected from strep. Insurance will only cover four 500 mg Zitho pills a month. My doctor says that with the half life of zithro, he's unprotected one day out of the week.

 

Instead of an answer I too have a question regarding Azith long term.

Those of teen and adult age doing it, are the patient taking 500mg daily and how long for?

When do doctors who treat with Azith recommend to cut the doze and in what way?

 

Our Sandra started Azith 500mg a day ca 1.5 years ago, but either the prescribing GP who is the only MD supporting us here in Finland nor I know exactly how to proceed. We were hoping to be supported with the necessary info. We could not get any IVIG again (last one was done in 2007 and the neurologist who did it got enough of treating this unknown condition and threw her to the psychiatrists who could not get themselves to believe PITAND or PANDAS existed. When the situation was gravest we thought trying Azith could do less harm then psycho medication (which did lots of harm and only that) or no medication (her condition was real bad, most of the time she could not get out of bed or control herself at all). It did not take too many weeks to see improvements, including the absolutely high IGG level for Mycoplasma which started to declineand was down to the threshold level in 6 months.

Some 3-4 weeks ago I decided to see if she would relapse if I were to cut the dose down to 250mg daily - so far so good and the slight improvements continue, but I am not sure we did right to lower the dose and neither would my GP know.

 

would be great if those who have longer experience on abx, esp using Azith could share it with the rest and if those treating PITAND with AZITH could share with me off forum ( rules must be observed) could share with me their MDs names and contact details (both phone and e-mail so that we could ask for help - we are of course ready to pay for good support) we shall be forever indebted.

 

Bat-Sheva and Sandra

 

 

 

Asith has done her lots of good but we are worried because we

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Hhhmm...

 

So glad you have seen good results.

 

The abx question is tough. My kids are generally healthy (minus pandas, of course). They were on daily antibiotics (zithromax) for a year when we lived in DC. One of the two was CONSTANTLY exposed to strep, and never got it. We then moved to NJ. We at the same time, explored lyme, and put them on multiple antibiotics for about 6 mos. During that time, they both contracted strep (at the same time)- one was on full strength zith and full strength augmentin, the other on full strength zith and rifampin. Obviously, it was a pretty resistant strain.

 

Well- the world did not end. We gave them 14 days of clindamycin immediately. Within a few weeks, we did IV steroids with both (when we started seeing pandas issues resurface). They are now stable, and (temporarily) off all antibiotics- to give them a break. They are hovering around 85 to 90%, I am hoping time will bring us to 100%.

 

Thankfully, insurance has not made an issue of the meds (knock on wood...)- but we are now at a crossroads- deciding what to do.

 

I DO NOT like keeping them on daily antibiotics- if it is not helping them daily, and if it is not foolproof in preventing strep. So far, our record on antibiotics has been the same as prior to pandas- strep every other year. We are planning to re evaluate with our neurologist prior to school starting. In the meantime, I am holding my breath, and giving their systems a break.

 

The neurologist thought we should consider omnicef- as a preventative- due to obviously resistant strains- maybe that is an option your insurance will pay for. I would also consider asking for an exception- as there are many illnesses that require daily antibiotics. (I am a bit of a hoarder with meds- now- so I like to have a daily prescription, and some extra meds in the cabinet- even if we opt to do less).

 

I will keep you posted on what we decide- I think for my own sanity I will keep them on some abx this school year.....

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