Positive Strep while on antibiotics

[RNmom]

I am new here too. My question "echos" the post from cab40: My son also relapsed after tonsillectomy/adenoidectomy in April. We have kept him on Augmentin XR 1,000 mg twice daily for months. It has "contained" the resurgence of symptoms but has not eliminated them. We tried IVIG in May. He got some mild relief but he is still completely home bound and seriously symptomatic. I believe we will be trying plasma exchange in the future. Is this the normal progression of things when antibiotics fail to eliminate PANDAS symptoms? Is there some point where immunological treatments must be done before antibiotics will work again?

[peglem]

I am new here too. My question "echos" the post from cab40: My son also relapsed after tonsillectomy/adenoidectomy in April. We have kept him on Augmentin XR 1,000 mg twice daily for months. It has "contained" the resurgence of symptoms but has not eliminated them. We tried IVIG in May. He got some mild relief but he is still completely home bound and seriously symptomatic. I believe we will be trying plasma exchange in the future. Is this the normal progression of things when antibiotics fail to eliminate PANDAS symptoms? Is there some point where immunological treatments must be done before antibiotics will work again?

Have you considered that there may be more going on than just PANDAS? Lyme? Have you tried other abx?

[Worried_Dad]

Hi, RNmom:

 

Our son has struggled with severe PANDAS for about 3 years, and last summer, things were looking very grim for him. Luckily, the combination of IVIG (2 more rounds with Dr. K in Chicago - 1.5 g/kg over 2 days each time in June and July 2009) and the "Saving Sammy" dose of augmentin XR seem to have been the magic formula for him. He's doing great at the moment... knock on wood!

 

So - if Lyme and/or co-infections have been eliminated as a possibility - that combo may still prove effective over time. If not, then a different bacterial agent may be the culprit for your son (Myco p, Lyme?). Different infections seem to require different abx / treatment approaches for PANDAS / PITAND kids here. (Or maybe it's just different internal biochemistry... but the abx that work well for one child don't cut it for another.)

 

What dose of IVIG did your son receive? There are a number of threads on here indicating that low-dose IVIG (less than 1.5 g/kg) can be counterproductive: pro-inflammatory, "stirring symptoms up" instead of relieving them.

 

Also, depending on your son's age and weight, he may need a higher dose of abx than the "Saving Sammy" dose. Our son happens to be almost identical in age and weight to Sammy Maloney when he started the XR treatment. But Sammy's docs had to experiment with the XR dose - increasing by 500 mg per day as needed, I believe - until they found the level (1000 mg twice daily) that did the trick for Sammy.

 

Hang in there. Thankfully, there are many options to try (steroids, PEX, IVIG, different abx, etc.). You'll find the one that provides relief for your son!

 

 

I am new here too. My question "echos" the post from cab40: My son also relapsed after tonsillectomy/adenoidectomy in April. We have kept him on Augmentin XR 1,000 mg twice daily for months. It has "contained" the resurgence of symptoms but has not eliminated them. We tried IVIG in May. He got some mild relief but he is still completely home bound and seriously symptomatic. I believe we will be trying plasma exchange in the future. Is this the normal progression of things when antibiotics fail to eliminate PANDAS symptoms? Is there some point where immunological treatments must be done before antibiotics will work again?

[EAMom]

ditto the questions/comments from WD and peglem.

 

Also, how much does your son weigh?

 

Are his symptoms primarily tics or OCD?

 

Have you checked (throat cultured) family members to check for carriers?