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Issues with 2.75:1 Ratio   Message List  
Reply | Forward Message #785 of 1163 |
Hello everybody. I just joined this group. My three year old
daugther Darian had her first seizure last year on Memorial Day
weekend, and things have gotten worse ever since. In December she was
diagnosed with Lennox-Gastaut Syndrome. We tried all the drugs but
with little success. She started the diet on May 8, 2006 and had
AMAZING results. Her seizure activity went from between 60-100/day to
less than 5/day. Unfortunately, her first blood draw showed that her
ketones were at 6.5. Our doctor says that the ketones need to be
between 4-6, so she was too ketotic. As a result, we have to reduce
her ratio from the initial 3:1 to 2.75:1. About two weeks after we
made this change, her seizures have started to return. We are anxious
to check her blood ketones again and see if they came down too far,
but the doctor says we have to wait a month to get reliable numbers.
Does anybody have any experience with this issue? We are hopeful that
this is just a minor setback, but we are very concerned. Any insight
would be greatly appreciated. Thanks!

Darian's Mom







Sun Jul 2, 2006 6:51 pm

darian_alexis
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Message #785 of 1163 |
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Hello everybody. I just joined this group. My three year old daugther Darian had her first seizure last year on Memorial Day weekend, and things have gotten...
darian_alexis
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Jul 2, 2006
7:02 pm

Dear Darian's mom, My son has been on the diet for over two years now and during that time his blood ketones have been check only a few times. We check him...
Thelma Fosselman
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Jul 2, 2006
10:13 pm

Thanks so much for the reply. Congratulations on your son's response to the diet. That is absolutely fantastic! We are hoping for the same. Darian is not on...
darian_alexis
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Jul 3, 2006
12:25 am

Hi Shannon! DJ started having seizures when he was 3 1/2 years old (on 9/30/03). It took us until 05/24/2004 to get him on the diet (he had just turned 4)....
Thelma Fosselman
tfsslmn
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Jul 3, 2006
2:14 am

Thelma, Thanks for the encouragement. Darian has really been struggling these last few days. We have increased her felbmate 300 mg in the past two weeks, and...
darian_alexis
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Jul 4, 2006
12:25 pm

Shannon: Has your doctor discussed decreasing the dose of Lamictal? I have been researching Darian's drugs and you probably already know, but lamictal can...
Thelma Fosselman
tfsslmn
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Jul 4, 2006
4:01 pm

Thelma, I had not thought of decreasing Darian's meds while she is still seizing. For the past year, we have only continually increased her meds to meet her...
shannon falon
darian_alexis
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Jul 5, 2006
12:18 pm

We had a nice quite 4th. My husband was home and I was able to work in the garden, which I love. DJ just enjoyed being with his Daddy. DJ passed a kidney...
Thelma Fosselman
tfsslmn
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Jul 5, 2006
1:25 pm
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