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.