Re: Mito and. . . . ./Deb

[Guest guest]

Deb, Thanks for the info, I may investigate leukodystropies, when I get a chance. What sort of white matter changes did have? Chelsea just had her 3rd MRI and an MRS, so I will have to get the results to see if there is more changes. Her 1st showed gliosis, scarring of the glial cells, which is what makes the Shriner's dr think white matter disease. Her 2nd MRI showed very mild atrophy, so mild, her former neuro told us there was no change. It was the Shriner's dr who pointed that out to us, and then sent her films to a pediatric neuro radiologist, just to be sure. When I finally got Chelsea's med file from her neuro after he left, the 2nd MRI report does state mild atrpohy, which just had me fuming!

Chelsea has been tested for FOD's, the U of M neuro did that. I have been tweaking a vegan diet for her for the past year and a half, and it seems she is doing better with more fats and modrate protein, and lot of complex carbs.

I did see Lorenzo's Oil as a teen and bawled my head off. I hate sad movies, but for some reason, I could not stop watching that one and it stuck with me. It was one of the first things I reflected upon when Chelsea was dx'd with mito. That and Plato's Allegory of the Cave, which I finally understood (I must have read that 20 times in college and thought "HUH" everytime). His mysterious ways, I guess=)

I hope you and your family had a wonderful 4th!

e, Chelsea's mom(nonspecific mito)

[Guest guest]

What sort of white matter changes did have? Chelsea just had her 3rd MRI and an MRS, so I will have to get the results to see if there is more changes.

Kris...

His first MRI was done in January of 2002, second done in October of 2002 and both of these left no impression on the readers. Then he had one in March of 2003 following a possible SLE and it showed 'white matter changes' and I know they mentioned something about some ventricles and also mild cerebral atrophy. It was a wierd experience b/c the Radiologist called me twice before finalizing his report...telling me both time of these findings. When I got the report it sounds like its no big deal. When the on-call neuro came in (he wasn't our usual one...we were impatient) he was extremely grave about the results. He was an indian (eastern) man and said "Its up to God now" and I told him we had just gone on hospice because he wanted to assure me that this was a progressive thing and so on. died 2.5 months later. All that said, there are kids who live much longer with these changes and they are considered somewhat normal in older people. If we had not already gone on hospice...let me clarify that--with our hospice you quit going to the dr and doing tests or you forgo hospice, but we had the MRI scheduled before we were admitted to hospice and the machine was being replaced so we had it after...anyway, had we not been on hospice, I would have insisted on them doing the blood tests for leuko because there had never been a reason to do run them before but I always felt it in my heart. But I let it go...it didn't make a difference then.

I am glad FODs have been tested...so many of the kids have this dual diagnosis.

Lorenzens Oil was a great movie...I watched it when I was young and then when we were looking for a diagnosis for it kept coming to mind, so I rented it from our Library and watched it. It was amazing what his parents did!

The fourth was hard but good...it was 's birthday and we did a lot of little special things that day...

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy. www.LifeofLoveProject.orgwww.HeartLiftersGallery.com