Please talk to me about Tuberous Sclerosis and Mito Disorders. - Mothering Forums

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#1 of 6 Old 07-09-2008, 07:10 AM - Thread Starter
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I've posted this all over the place, but if you've read my posts you know that my three year old dd has epilepsy. She's had multiple MRIs showing "white spots" in the right hemisphere of her brain. In the white matter, not the grey matter. They are fairly large, and have stayed the same over repeated MRIs - ones with contrast, ones without - so we know they are a product of her brain, not a mistake on the scan.. Anyway, we're not sure what they are. At our last neuro appt. in May, we talked about maybe trying to figure out what was going on, vs. just watching and observing. The neuro said mito disease was something in the back of her mind, but didn't want to put dd through that and/or genetic testing if she didn't have to, since my daughter has been through alot the past year and was having quite a bit of behavioral and emotional difficulties, which were priority.

However, we go back in August and I really want to talk more about this. I know nothing about mito disorders, though I've seen them mentioned here often.. If anyone could clue me in and/ or point me in the right direction to start reading up I'd appreciate it. I'm not a big googler.

The other thing in my searching that has come up was tuberous sclerosis. I know nothing about this either...Does anyone have more info about this?

Anyone know what else this could be? Whenever I google, MS comes up - but I know that's not it.

If anyone has any insights, I would appreciate it so much. I am starting to wonder if I should have dd evaluated on the mainland. She is stable now, healthwise - but I just need to feel like I have some answers to the why's. The doctor always says not to be fixated on the white spots, but hello! Giant lesions on my kid's brain? Um, hard not to, yk?
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#2 of 6 Old 07-09-2008, 10:26 AM
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I don't know about TS but as for mito a really good site is UMDF

The testing for it consists of blood and urine tests and eventually usually a skin and/or muscle biopsy. We're about to have our muscle biopsy for it.
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#3 of 6 Old 07-09-2008, 10:45 AM
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Here's information I put together on mito:

TS...there is a mom here (redoakmomma) with TS experience with her twin boys. The thing about Tuberous Sclerosis is the way it presents and how severely kids are affected can very widely.

Rachelle, mommy to 8 year old boys! 

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#4 of 6 Old 07-09-2008, 10:53 AM
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#5 of 6 Old 07-09-2008, 04:43 PM - Thread Starter
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Thanks for the information.

Uh.....reading all of that made my stomach hurt. I can see why the doctor wouldn't want to put her through the testing. I don't even think they could do it here -we will have to be referred to the mainland.
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#6 of 6 Old 07-09-2008, 04:55 PM
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Your daughter is beautiful. I am sorry you are having to deal with this. I have been there, myself. My 10 yo DD has those "white spots" you mention, they are in the ventricles, like you said, not in the grey matter. They haven't dx her as TS, but they are watching her. They also want to do a kidney scan and another MRI of the brain, but her ins. (she isn't on the same as us, declined due to other health issues is really crappy and we are in a tight place financially, so we have waited, since they wouldn't actually do anything with the results, anyway! All they will do is watch her, and we have been warned about possible seizures, but again, nothing we can actually do.
Don't be horrified at the description of TS - like a pp noted, there is a huge range, and they tend to write up the worst of it.
I guess I don't have a lot to offer, other than to say you aren't alone!

~*The days are long, but the years are short.*~
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