HHV6? Genetic Testing? Cunnigham Test?

[T_Anna]

Ok, so the doctor isn't thrilled with the lack of "real" progress from IVIG. Says that DS seems really still stuck in the mud.

 

Last night we added Augmentin (to Azithromycin and Doxcycline). He also wants to test DS(14) for HHV6, which would make sense since Coxsackie is already a trigger for DS. He also wanted to do the Cunnigham test, but we need to wait until more time passes from the IVIG. He also wants to run genetic testing, but we need to do that in NJ since NY doesn't allow it (huh??).

 

Last night I upped the Luvox +25mg so now he is at 50mg. DS spent 8 hours in the bathroom last night and then came out and actually read the paper, haven't seen that in 3 months. Wondering if maybe IVIG is working just not a ton.

 

I just hate waiting. This school year looks like it's gone. I know that getting DS healthy is the important part, but it's hard with holiday milestones.

 

Thanks for reading.

T.Anna

[tpotter]

I like that the doc is looking at virues, and heaven knows that HHV-6 can be a problem. Additionally, I would look at the possibility of other infections, too. Sounds like you are from the NY area, and lyme, babesia and bartonella are big problems there, now. I would definitely test for that, and even consider seeing an LLMD and/or ART for diagnosis, because the lab tests are not terribly accurate, and as such is considered a clinical dx. Also ART can get answers differently. Sounds like your doc is onboard with understanding that if all infections are not taken care of, the problems will not go away. Glad to hear he read the newspaper

[LNN]

Try to keep careful notes. Starting augmentin and upping the Luvox on the same day will complicate things and make it a little harder to know which one - or both - are responsible for any improvement. If you're going to do genetic testing, are you talking about 23andMe or Courtagen? I'm really not clear on what the courtagen testing is for. Is the dr. saying there's a link between mitochondrial disease and OCD?

 

Glad you saw a small improvement last night. It tells you improvement is possible. I know it's very painful to watch your child be so lost but many of us have gone to dark places and gotten our kids back. Always have hope.

[T_Anna]

LLM I agree that we are throwing a bunch of new things into the mix and it'll be hard to know what is working...hopefully, something will work and we can try to reverse detect once he's in a better place. The doctor is trying to figure out why we haven't made any progress. The genetic testing is because he thinks DS may be dificient in something and rather than "stumble around in the dark" (his words) and trying supplements he wants to test, I believe it was the Courtagen.

 

Tpotter, He has been tested for those things, but a LLMD would prob beneficial, except that DS won't leave the house right now (it's been two months) so the goal right now will be to have the HHV6 tested. According to Dr.T the HHV6 can be re activated by abx use : (

 

Thanks for the support. Knowing that others have come back from this far in a whole does make me have faith that there is a light at the end of the tunnel.

 

T.Anna

[LNN]

Others can chime in as to whether Courtagen was helpful or not. I have no personal experience. But in addition, I'd highly recommend the 23andMe test for $99. It unfortunately takes 2 months to get results, but they've been very helpful in guiding us on diet and supplements. Once you get the results, you can post and I'll walk you thru the steps to get the Yasko-like report and use the heartfixer writeup to interpret the results. It won't give you a silver bullet but it will let you know for certain what to avoid and what helps and also what you can do to reduce risks for adult diseases such as heart disease or cancer. etc. In the meantime, have you contacted Mass General or the IOCDF about finding an ERP therapist who does home visits? Dr Jenike (who's an adult therapist) made his name in part by being someone who would treat homebound patients and treating the "untreatable". They may know someone who does the same in your area.

Edited March 31, 2013 by LLM

[T_Anna]

Thank you LLM. Didn't know about Dr.Jenike, sounds like the type if therapist we need! I have a few local names that I will tackle calling this week. The generic test Dr.T wanted to do is $100, so maybe it's the same one, but why would it not be allowed in NY state : ( I will double check what test it is, I believe it was a cheek swab kit?! DH had a heart attack at age 31 (and bypass surgery), so I'm sure 23andme would be useful information since it's a worry we have (no one in DH's family had heart issues and he is fit/athletic).

 

Anyway, my non PANS DS woke up this morning with what looks like stomach flu. Now to go disinfect all the remotes and game controllers they all shared last night.

 

Thanks as always,

T.Anna