Tuesday, May 11, 2010

Ketogentic Diet?? maybe??


The book tells me not to use the Ketogentic Diet as a "Last Resort" to rid my child of seizures...
What do I call it then if we have already tried 8 medications?? Let me know.
When MRI, PET scan,spinal tap,etc etc etc come back NORMAL..but my child is far from this "normal" they speak of.

We continue to wait for genetic testing to come back as they will compare us to Madies bloodwork and "try" to find something to explain just why she has seizures. I have seen Lennox Gastaut mentioned in reports but never discusssed to me personally..I have mentioned Retts Syndrome which can be diagnosed with blood test but due to the high price of that test and insurance maybe not covering it it has been put on hold per say..

We have been on increased Valproric Acid for..uh.5 days now..being told to give it 2 weeks and "see" in the meantime she is sleepy and tonics persist...
Now back to the beginning (no wont go back 3 years) of my post as I mention this Ketogentic Diet..
I have only read stories of its sucess in books and Online and do not know anyone personally whom it has worked for. Now all these things that go thru my Mind like Lennox Gastaut..well mid as well forget meds cause she will most likely have seizures her whole life..
Which hell, ya dont want to even say that let alone think that!! Ya wanna keep that warrior face on and not give up and keep hope alive that SOMEDAY she will be able to develop and rid of these seizures..
But Geeze, This mama is tired. I just *sigh* dont know anymore. Just blank mind when it comes to seizures. Most of the books I have read are written by some doctors in Johns Hopkins in Baltimore...Should I go there???? Try Boston? Try New York??
I get the same effin things each place we go. If there was a doctor out there who could fix our kids he or she would be a gazzilionare! (now that is above Billionare!!)

THIS teether is so awesome! We love it! she is doing so well at grabbing it and putting it in her mouth! it vibrates! (U can get em at Target I think is where madies grandma got it for her)
Ohhhhh Gee she is crying I dont think she wants to be in her bed anymore..Ill keep ya posted on anything else...thanks for lettiing me moan and groan.
:)

6 comments:

bluee19 said...

I think you should try the Ketogenic Diet for Madie. There are many children who are seizure free or their seizures have been reduced. My daughter has been on the keto diet since Nov 09 and it took about three months for her to reduce her seizures. Now she has about two or three a week compared to the 50s or more depending on the day. If you haven't joined the ketogenic board from Yahoo Groups. I suggest you join and ask questions. There are many expertise families facing the same struggles.

jocalyn said...

Kendall has been SEIZURE FREE on the Ketogenig diet now for almost 4 months. We started it in July of 09, and it took 2 months to see relief. Then they slowly tapered off. It has been a lot of work, but after failing that many meds...you're probably willing to try anything!!

I can't say enough good things about it. There are risks, sure, but not having any seizures and seeing my baby's personality shine through is worth it.

We're down to one seizure med...Keppra...

Reagan Leigh said...

It's definitely worth a try! I just can't believe no one ever suggested trying it sooner. It's one of those things...changing your child's diet is certainly better than adding more meds! Although with Madie being such a picky eater it may be a slight challenge. Reagan loved the Ketocal formula. I tasted it and it's kind of like a vanilla milkshake! I don't think it matters where you start it...most places these days use the same protocol for the diet. I say just do it!! And I love these picks of Madie...she's such a big girl now!

apaprikao said...

Saying many prayers for you and Madie! She's such a beautiful little girl and I know she is destined for great things in her life! She has great parents who are doing and sacrificing so much for her. That's a very awe inspiring love! I hope you find some relief from her seizures very soon!

Kristine said...

I have a question about vibrating toys/toothbrushes...

I was told by an OT that they can cause seizures. So I've avoided them forever. Have you heard this before? Is this total nonsense? Katie would love them and if my information is wrong I'd be very happy. :)

Sinead said...

My daughter is starting the ketogenic diet on monday. She no longer has infantile spasms. She has partial seizures and possibly myoclonic. Her EEG is showing multifocal abnormalities. So we are hoping this diet will do what eight medications and a brain surgery could not do. I have completely unrealistic expectations. I'll let you know how it goes.