Lauren has been doing such a good job being hooked up to the EEG monitor. She is doing better then me, I am starting to crazy! Dr. Tuxhorn stopped by for a short time this evening. She wants us to have her hooked up until Friday morning and then we can talk more about what she thinks and our plan with Lauren. So far we know that tomorrow we are going to start a new drug called ethosuximide, and start weaning the drug banzel when we get home. She feels that banzel is such a new drug and doctors know little about it. She also stated again that she wants her to stay on the diet feeling that has been the best treatment for her. I also agree with the diet helping but I think in the back of my head I was hoping she was going to stop the diet. It is so hard and time consuming, but I will do anything that will help.
Below are some pictures of Lauren today.
This is Lauren on one of her 15 minute breaks painting. The girl next to her is waiting for a transplant of her stomach,
pancreas (sp?), intestine, and many more things I can't remember.
She was hooked up to so many machines and feeding bags. She was so nice and happy!
This is Lauren on one of her 15 minute breaks painting. The girl next to her is waiting for a transplant of her stomach,
5 comments:
Are you on the keto yahoo group? It's a great place for ideas if you're still finding it hard. I still find it time-consuming and inconvenient for aspects of our lives (like travel), but not too "hard" on a daily basis at the moment. However, we're about to move to 5:1 ratio (ack!) so that may change.
Good luck to both you and Lauren surviving another full day hooked up to the EEG!
Fawn sent me a link to this page because we see Dr. Tuxhorn too! You could not be in better hands! Although she's only an hour from us, no flight from Utah! The Cleveland Clinic is amazing! From the cleaning lady to the neurologist every one is so kind! We've stayed in the PMU twice so the photos of your girls hospital stay are very familiar! I hope you got one of the good room and not one of the "fish bowl" rooms as I call them :)
I have a blog and wrote early on about Dr. Tuxhorn. I'm wondering if they'll send someone from Dr. Parikh's office to meet with you, he's the metabolic and mitochondrial Dr., he'll do everything he can to try to find a cause for the seizures.
I'd describe it this way... Tuxhorn is our treatment Dr. she decides what drugs or treatments to use. Dr. Parikh is our "why" dr. he does genetic testing and so forth to try to determine a cause.
My email is JKeesee@zoominternet.net if you'd like to contact me :)
Fawn, thanks for your nice comments. I am a loyal follower on the keto group and doose group, it has helped me in so many ways! I don't really want to stop the diet, it was just a secret wish. We have gone up to a 4.5 ratio and tweeked everything possible, I have gotten it down to doing it in my sleep almost. It is just that I have 6 kids and it is pretty tough on our kids. But like you know it is worth it! Goodluck going up to a 5:1!
Tami
Jenny,
We did get the fish bowls! We did not see any other doctors. Dr. Tuxhorn felt good about all our metabloic and genetic testing that had been done back in Utah.
I agree about the Cleveland Clinic, they are so friendly! If you pause for a second there is someone there to ask if you need help-we have been so impressed! Goodluck-does you child have a metabolic issue?
Tami
I didn't think to check for replies, so I'm just reading this today.
A lot of things ARE harder with the diet, there's no doubt about that! (All our family is far away, and we'd likely to more traveling if it weren't for the diet.) And don't we all wish we could stop doing the diet? I think yes!
Wow, I can only imagine how busy you must be with 6 kids! I feel like I have enough on my plate with two kiddies plus pets.
I see from your latest post that you're home. Looking forward to hearing all about what you learned. Welcome home!
fawnahareo.com
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