Where to go now?

[jen_b]

My dd was diagnosed with PANDAS after 2.5 months of her changing into a different child. She has been on Augmentin and I also give her Motrin for 10 months. I know she cannot stay on the Augmentin for a long long period or can she? She is 90% back to herself. Where can we go from the Augmentin? Her doctor said she is mild and I believe that she is, but she still does need some kind of medication or supplements to help her. Can I keep her on the Augmentin? How long is too long? Can I see a holistic doctor and will that help? She will not swallow pills , she's only 7, but I can use oils if need be. Her Dr just says Augmentin, Anti Anxiety meds(which I don't want) or IVIG(which I don't want, unless there is a guarantee) I just feel at a loss...I am new to finding all this info out. I think in my heart there has to be another way then traditional meds...different foods, supplements, etc...

[Sirena]

90% back--that's wonderful! What is she still struggling with? Is there a difference on/off ibuprophen? Are her inflammatory markers resolved?

[Sirena]

And have you been using any probiotics or antioxidants?

[Wombat140]

Welcome to the forums Jen B.

 

90% back--that's wonderful!

 

I agree! I appreciate that even 10% of what PANDAS can be could be quite nasty though, so I understand why you're asking.

 

I've heard of children being on Augmentin for at least a year at a time (could be longer, but I can't remember, we lent our copy of "Saving Sammy" to a psychologist and she still has it). I know that children who've had rheumatic fever are often kept on Augmentin indefinitely as a precaution, because the possible problems with that are outweighed by the risk if they get streptococcus again, so it's not a medically unprecedented thing. A PANDAS specialist I saw a while ago seemed to be worried about me taking it for more than a couple of months at a time, but mainly because he couldn't monitor my liver function (I had a needle phobia at the time). I get the feeling that if I'd been able to have the liver function tests regularly he'd have been a lot more comfortable with carrying on with it.

 

What tests has your daughter had, what did they show? Has she had any tests for signs of other infections that aren't streptococcus? It's possible for other infections to be involved instead of or as well as streptococcus, and they don't all respond to the same antibiotics. Lyme disease and Mycoplasma pneumoniae are among the better known ones. So if she turned out to have one of those, then changing to a different antibiotic might make the difference.

 

Again though, if you've found something that reliably works at all, then that's a big step in the right direction! Good luck!

[Wombat140]

Oh, and have you read the e-book ("Your Child has Changed")? It's a good introduction to PANDAS and PANS, worth the $10 if you're new to it - and good for giving to doctors who are new to it, too. It has some basics on other infections that aren't streptococcus, too, and where to go about that.

[Gpookie]

My kids are starting year 3 on Augmentin. We added Clarithromycin 6 months ago. They cannot be without either but are at 200% with both.

[MomWithOCDSon]

My DS took Augmentin for nearly 2 years, to only positive effects. And despite some fear-mongering in some circles regarding antibiotic resistance, he's had a couple of ear infections in the five years since he's been off abx, and good old amoxicillin took care of them just fine.

 

I would just make sure you also implement the use of good quality probiotics so that her gut biome stays well-populated with beneficial flora, since that's increasingly thought to be an important component of both physical and mental health.

 

Good luck!