Boitin

[sf_mom]

Nice to hear your story and to know you've been able to manage for 5 years. I can only imagine with the whole appendicitis/pneumonia debacle.... I'd be scared of the hospital too. You are in good hands with Dr. L. Since we are in Northern California, we are starting to find a decent local support system and also saw Dr. K for IVIG in September.

 

Welcome... you've found a great support system with this forum. I've learned so much and plan to add Biotin as soon as I can get to Whole Foods.

 

-Wendy

 

Hi Wendy,

My son was dx'd almost 5 years ago. We started on cefzil and penicillin then. Mostly we have just always been proactive about being informed of strep infections by school staff and as soon as the cleaning OCD starts we start the ABX. My son has also had very bad episodes from viral infection but they do not typically include the contamination issues like strep does.

My son is still having PANDAS episodes with strep exposure and the OCD is worse with viral illness. We are now on Omnicef and he is doing well. He has always been a real mystery to the docs we have consulted mostly because no one has really wanted to take the PANDAS dx seriously. I heard about Dr. L and we saw her several weeks ago before I knew this forum exsisted! My son was amazingly stable when we saw her, but she got what we have been through so we will test Cam when he is ill and see what happens. We talked about IVIG and PEX but my son was misdiagnosed with appendicitis in the spring (he actually had pneumonia) had he had a very difficult time recovering from this. So did I. He really went backwards in so many ways after this surgery and now he is petrified of hospitals!

 

Cannot imagine being off abx's long term ever...

 

I think Whole foods does have the Jarrow,

 

PatAnne

 

Mom2Alex I'd love to know too....

 

PatAnne: Sorry I don't know your full story and you may have posted before. What antibiotic is your son on and strength? How long has he been on it? Has he ever done IVIG or PEX? Does he seem to be outgrowing PANDAS yet? Do you intend to take him off the antibiotic at some point? Can you get the Jarrow Biotin at Whole Foods?

 

-Wendy

[mama2alex]

I promised I would post after speaking to our DAN doctor. I spoke to him this morning and he couldn't really give me an answer about Biotin being depleted by antibiotics (he didn't seem to know). However, we are testing my son's vitamin and mineral levels, including Biotin, so we will know for sure if we need to supplement this or anything else. If my son is deficient in this, I'll post again. I'll know in a few weeks. He's never had a Biotin deficiency in the past.

[PatAnne]

FWI, all he need do is Google antibiotic/biotin and he will see lots of valid information!

Really surprises that me more docs don't know this.

 

Hope all tests are normal!

 

PatAnne

 

 

I promised I would post after speaking to our DAN doctor. I spoke to him this morning and he couldn't really give me an answer about Biotin being depleted by antibiotics (he didn't seem to know). However, we are testing my son's vitamin and mineral levels, including Biotin, so we will know for sure if we need to supplement this or anything else. If my son is deficient in this, I'll post again. I'll know in a few weeks. He's never had a Biotin deficiency in the past.