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Hi Jen- I would be interested to hear what you find out today. I have the kits at home, but am waiting for mid-year (for insurance reasons) to have it done.

 

Thanks!!

We didn't get a chance to talk about it. Dr. T's mother passed away this AM. :(

 

I will post when we reschedule.

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It did uncover something that has to do with fatty acids that may be linked to her pancreatitis . It was supposed to be covered, but ended up with a 17k bill from courts ten. I called them and they are working on it. I am not worried at all. So, I think if you can get it covered go for it.

 

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It did uncover something that has to do with fatty acids that may be linked to her pancreatitis . It was supposed to be covered, but ended up with a 17k bill from courts ten. I called them and they are working on it. I am not worried at all. So, I think if you can get it covered go for it.

17k?!?! Oh my. I had to pay $600 up front. $200/kid. And they said if the insurance didnt cover it the $600 would cover it. I sure hope that's true!!

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Can someone explain why Dr T seems to be pursuing this with his patients? I gather it's to explore mitochondrial disease but not sure why he feels this is an issue for Pans. Is he just testing a theory? Do your kids have many symptoms (multiple organs) of mitochondrial issues? What treatment is he recommending if your results show something?

 

Mitochondria is something that interests me since my DD often complains about fatigue that isn't showing up as a virus or anemia or infection in her blood work. Out of desperation, I started giving her CoQ10 a month ago and now she rarely complains of fatigue. But aside from the CoQ10, not sure what you do to treat mitochondrial issues. Can anyone shed some light?

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I think there is a difference between Mitochondria damage and Mitochondria disease. Of course, the disease being much, much more serious.

 

Our Pediatrician was focused on mitochondria damage with our children. One thing that indicated damage to her was balance issues when they were younger. It is my understanding it is common to have Mitochondria damage if you have been dealing with chronic infections et al. We are treating with NT Factor... I think Research Nutritionals gives a fairly good explanation of what is occurring. I haven't read a ton on the topic due to recent focus of heavy metals. Our LLMD also discussed the possibility of mitochondria damage impacting me as well and was more focused on boosting ATP at the time. I did not find it particularly helpful but it was at the beginning of Lyme treatment. ATP might be more helpful now. ATP fuel can also be purchased through Researched Nutritionals.

 

http://www.researchednutritionals.com/store/item.cfm?code=crn101

 

I too would like to know more about testing, why Dr. T thinks its an issue and if anyone comes back indicating its an issue.

Edited by SF Mom
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We had the test done for my daughter. It didn't reveal anything that could be of any use right now. There's still so much that is unknown about DNA. I do know that Dr. T is trying to collect info on his patients so he can compare them and try to find out what the common mutations are in PANDAS kids. He has a few things he's found but he needs more kids to get the test done.

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We consulted with Dr.T in September and saw him in person in October and then ran the courtagen tests. We have been rattling him for the report, to which he promises....how do we get him to follow through? He was promising the report well before his mother took her final spiral. My son is in now in residential treatment...his input is important. What have you had to do to get what you need from him. I need ideas, as we have tried. Dawn

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We consulted with Dr.T in September and saw him in person in October and then ran the courtagen tests. We have been rattling him for the report, to which he promises....how do we get him to follow through? He was promising the report well before his mother took her final spiral. My son is in now in residential treatment...his input is important. What have you had to do to get what you need from him. I need ideas, as we have tried. Dawn

I called and asked Silky for a copy of the report to be emailed to me so I may review if before our next visit.

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1362065552[/url]' post='155050']

Can someone explain why Dr T seems to be pursuing this with his patients? I gather it's to explore mitochondrial disease but not sure why he feels this is an issue for Pans. Is he just testing a theory? Do your kids have many symptoms (multiple organs) of mitochondrial issues? What treatment is he recommending if your results show something?

 

Mitochondria is something that interests me since my DD often complains about fatigue that isn't showing up as a virus or anemia or infection in her blood work. Out of desperation, I started giving her CoQ10 a month ago and now she rarely complains of fatigue. But aside from the CoQ10, not sure what you do to treat mitochondrial issues. Can anyone shed some light?

 

We have an appt to see a mito specialist at Mgh, this was dr Hellers suggestion . I barely understand this. Still trying to find all the piecescofvthis puzzle. Awaiting results from dr freedman, pancreas specialist at BI with special interest in fatty acids.

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