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 March 19, 2009, 01:17:43 AM
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Gina
Newbie
Gender: 
Posts: 7
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Thank you for the caring responses, re-reading my post I left out some info oops  So we have had 3 mris 2with contrast, 3 eegs and one v-eeg, a geneticist had Kylie get a heart scan because her toes are always purple and cold, but that was also "normal." Alot of blood work which is all pretty normal except she is slightly anemic from the meds she was on at stanford. Kylie is doing okay with it, she gets frustrated because she used to be able to do alot more, i mean she was above average in EVERYTHING just a year ago so its hard for her. i think shes just realizing it now how differant she is now that she doesnt walk very much and she asked why she talks funny and shakes so its sad for us too. Shes an awesome little girl though that much I can say for sure!! We are activally searching for anyone that might be able to help us though I am open to anything!! Thanks again I look forward to chatting more!!
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July 10, 2009, 02:28:09 PM
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Gina
Newbie
Gender:
Posts: 7
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Sorry I get so excited that there are others out there (sounds morbid I guess) that i forget to list all her things :) Yes she sees endo. every three months for a1-c tests. She was dx'd with diabetes in Nov of 2007 and her seizures are not related to her diabetes in anyway :) She has had 4 eegs and 2 v-eeg's that show she has seizure activity. Thats why Stanford said it was continuouse seizures(although it stops when she sleeps) and through a v-eeg our docs here found it wasn't continuouse seizures and in fact it wasn't even the type of seizure she was originally dx'd with and the meds she was on before could have been making it worse not better. So now she is on Keppra 30mls daily and hasn't had any break through seizures. We have jusr recently has NCV/EMG at the request of N.I.H and both were normal. She has since my last posting in March had another Mri and also a spinal mri. Also normal. She is on a feeding tube because she just wasn't eating enough and now at this point she doesn't eat at all although she is able to drink small amounts she says shes just too tired to eat or drink. Also, while at Stanford last summer, the plasma-pheresis took all of her vitamins and things from her body which made her more sick. Her vocal cords are actually where the shaking started and has progressed the most I think and they think maybe its uncomfortable for ehr to eat as another reason for her not eating. I guess with noone doing tests and I have no way of knowing which tests to do, maybe shes not just undiagnosed shes untested too 
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October 20, 2009, 05:21:17 PM
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Gina
Newbie
Gender:
Posts: 7
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Hi just wanted to do an update we are for sure scheduled to go to the N.I.H Dec.13-19! Initially its one week and we will be doing 2 days of neuro and 3 days of genetics from 8 am to 430pm. I guess they have it all planned and we will get a schedule about a week before we go. The only thing I know for sure is the first day we are doing another lumbar puncture because the one we did last year the docs never actually ran tests on *sigh. But we are excited and I am wondering if anyone has been to N.I.H before how does it work? Kylie had a 34 minute seizure a few weeks ago and now has oxygen at night but other than that hanging in there strong. just got to make it a few more weeks 
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October 20, 2009, 08:13:04 PM
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Jr. Member
Posts: 40
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Hello gal Bad story with your daughter.  Did the doctors get some results by now? I wish your daughter good luck and health!!  Yours trancy
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