Re: help needed desperately

[Guest guest]

Jen

OH NO-hang in there girl

Now here are my thoughts-if you are giving her straight oil and she is not digesting-may-be it could be her liver right now that is not working. What if you tried MCT Oil because it skips the normal digestion process and raises ketones quickly. It may give her diaheria-so may-be try some carb with it? She sounds so tired.........OK why not try a digestive ensyme to help her system to actually digest the fat?

Have they checked her liver function or attempted any digestive remedies. If the fat is not digesting will the meds help-may-be she has some serious stomach virus or bacteria. How is her blood?

When Marissa gets sick -how are her ketones at those times are they low or high?

Jen I'm just thinking out loud here-and sending you and MARISSA prayers. PLEASE BE OK>>

LOVE YA GIRLDiane

help needed desperately

Hi everyone.Marissa is still in the hospital. She has been there a week now. Seizures started two weeks ago with a bought of the stomach flu.Last Saturday we were sent home in the morning, only to return by ambulance at 10pm. She started seizing at 9am and stopped at 10pm. Diastat did nothing.Sunday was slightly better in the morning. She was at least a little alert. Then gone again by nighttime. Monday morning was horrible but last night she was actually playing even though she couldn't hold her head up well. Then today has been beyond horrible. She has had only 6 tonic clonics all day. But she is not recovering at all. She does not respond to her name. She doesn't look at me. Her reflexes are gone. Ketones in blood are small. In urine they are small as well. I have been giving straight oil through her tube because she is not able to eat. It does nothing to raise ketones. She is not able to hold her head up or even wiggle her fingers. I am afraid she is dying. And no one has given me any reasurrances that she isn't. We are most likely starting Keppra in the morning. She has been drug free since June 2000. She had problems with her liver with drugs before where the docs were wondering about transplant. So I'm terrified. I don't want her to live in a drug stupor again. But I have to do something.Here's all I can think of to share. Maybe someone can help.She has had Tai brand coconut milk (calculated the new extra carbs in) and oil, heinz chicken, gerber apple sauce, and safflower oil through her tube. Tried 6:1, 5:1, 4:1 and straight oilShe lost 4 pounds in two weeks during and after the fluI used to give Carnitor. Stopped a while ago. Had levels done and found she was slightly deficient. Didn't start it again until yesterday because her poop is so oily I don't think she is absorbing the fat. The dietician says it will take a week to know if the Carnitor is it.No meds other than diastat, which doesn't work anyway most of the time latelyNo lotions or soaps aside from the natural baby shampoo I have always used.Please please give ideas. I think Marissa is going to die one minute and then the next I think I can help her. I hope the latter is true, but i don't know.Thank youJen "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

[Guest guest]

Dear Jen,

I'm so so sorry that you and Marissa and

the whole family are going through this hard time.

I'm hoping things have changed for the better

already. Two things come to mind - Distat doesn't

work for Rohan either, but Midazalam was better.

It was given given to us to put in his mouth between

lip and gums, but is I think usually given as an injection.

I don't know whether it's the same as ativan.

We've found that the slightest little bit of flax help to

bring up the ketones. I know you don't want to be

changing too many things, and maybe it's not for now,

but could you ask your practitioner about digestive enzymes?

If you think the food (oil) is not digested, they might help.

With love and best wishes to Marissa, for a speedy recovery.

Saro