help with medication

[mmiglio]

My daughter, almost 12, was diagnosed with PANDAS. She's had ADHD almost her whole life. Anxiety started a few years ago and began getting worse last year. In January was diagnosed with OCD. Last month we saw a dr at National Integrative Health Associates who ran a ton of tests and her strep titers were very high so we're treating her for PANDAS.

 

After three weeks on Augmentin, we're seeing very little change. After reading Saving Sammy I really thought abx would be a miracle cure even though her onset wasn't very rapid and her symptoms are not as severe as his.

 

Anyway, follow up with dr today, and she says another Dr looked at records and is suggesting a parasite that I can't remember the name of that is very common with PANDAS kids and is suggesting a new drug route. Wants to take her off Augmentin and put on arithrymycn (sp?) and then add Mepron a week later and then diflucan a week later. She is already taking Nystatin for yeast.

 

So my biggest question is, the three new drugs are only once a day, which is good, but I forgot to ask the dr... can she take them all at one time? And does anyone suggest they're better in the am or pm? Should I split them up so she takes one in the am and the others at night, or reverse? She also already takes a multi-vitamin and a mineral supplement since her minerals are low.

 

I hate to put her on new meds b/c her OCD has her terrified of throwing up and new meds, particularly ones that cause die off, tend to make her nauseous, which makes OCD worse.

 

We are doing CBT and are having good success with that treatment, but she still says she is afraid of everything all the time. I just want her to not feel afraid anymore.

 

There is so much info on the web but none of it seems to address my specific question, and I know each child is different and that they call it "practicing" medicine for a reason. I'm just trying to get someone else's advice b/c I feel like my head is spinning.

 

Thanks for listening!

Maria

 

[Chemar]

Bumping up new member post for responses

[emst]

I'd have the doc give her a good week or 2 weeks on zithro even a double dose of zithro before moving on to chasing parasites. A lot of kids it's either Zithro or Augmentin. A small number take both.

 

Also high dose inositol protocol might be of benefit esp. for those feelings of 'afraid all the time" poor kid we have been there

google inositol in all the acn forums to see the range of experiences

[jan251]

It would be interesting to hear more about this doc's perspective and reasoning.

 

AFAIK, Mepron is typically used for babesia, a protozoa infection commonly found in conjunction with lyme. It's very, very expensive and, from what I've read, liquid only and yucky-tasting.

 

(We are about to start treatment for babesia - we will be using other meds.)

Edited May 16, 2015 by jan251

[mmiglio]

Thank you so much. Yes Zithro is what she wants to move her to. I will do that. And she is already taking inositol but maybe not enough. I'll research more of that. Thank you. Really.

[Mom23boys]

The other thing that was explained to me is that antibiotics don't always work if there is no active infection. Just because there is no active infection doesn't mean the body isn't acting like there is and attacking the basal ganglia. I don't think trying another antibiotic is a bad idea, particularly if you use one that is immune modulating. It just may be that your child is having an immune response that is ongoing, even absent a current infection.