Friday, April 4, 2008

Day 11 wean (10 units)

Not much exciting news today. Reagan is one day closer to being off the ACTH...which is good because her seizures are VERY frequent right now. I'm really hoping that it's the ACTH and that once she's off of it we'll see a decrease. I did talk to the nurse at the epilepsy clinic today about getting Reagan onto the Ketogenic Diet. At first she didn't want to commit to a date...she was saying that we need to wait and see how Reagan does on the Felbatol. But I explained to her that the only reason we agreed to try the Felbatol is that the doctor told us it was something she could begin while waiting to start on the diet. So after going back and forth a few times, she agreed to put Reagan down for the first available slot...May 11th. This way at least we'll already have an idea about whether or not the Felbatol is working. My only concern is she's already scheduled for a MRI/MRS/lumbar puncture on May 7th... I hate to postpone it any further, but it does sound like a lot to go through in a weeks time. They would admit her to the hospital on a Sunday and keep her/us there for a minimum of 4 days to begin her on the diet and monitor her level of ketosis and teach us how to do the diet once we go back home.


Anonymous said...

This Sweetie is sooo precious....I can hardly "Bear" it! Her eyes look GREAT! I am so happy!!! I just know that great things are beginning to happen. I'm excited about every day! "Let us rejoice, and be glad in it." Hallelujah!!!

I love you!!.....The Grandma

angellinds2004 said...

Thank you for your comment. Its nice to know there's others out there going through some of the same things. Your little girl is absolutely adorable!!! Its amazing after every thing our girls go through how happy they are. Just a little bit about her history she has head circumference of 18 inches(microcephaly), myoclonic seizures(suspected infantile spasms not proven), CVI, global developmental delay, and hypopituitarism. The seizures I didnt notice until she was 10 months. I will post more info about my daughters history.

Heather said...

Reagan is just beautiful and I will continue to pray that this next month holds nothing but wonderful things for her. I know the journey to this point seems so long but the destination will be well worth it. We have to have faith in that. Have a great weekend.

Zoey's mom

Sara said...

Your daughter is so beautiful and you guys are amazing! I wish the best for all of you and hope you find the things that will help her. Please let me know if there is anything I can help with. I have told your mom how hbot has helped my son. We have a ways to go but I definitly saw progress afterwards. There are a lot of people who say it stopped seizures. I continue to pray for little Reagan! Take care!

JSmith5780 said...

Why can't the do the MRI/MRS/LP while she is already in the hospital for the keto diet?

I know we combined trips to Boston a lot so as to minimize days I'd have to take off work.

Reagan Leigh said...

Well...that's a good question. Maybe I should ask them about that. We had already scheduled the MRI/MRS/LP for May 7th long before we knew about starting the Keto diet. I'm not sure whether it would be better to just do them all while in patient or not? I guess it depends on how well she tolerates the diet.