We talked to Ruby's neurologist yesterday about what to do next since we haven't seen much improvement with Ruby's seizures. He had talked to a few other doctors in his practice and they believe that we should put Ruby on a special, high fat diet called the ketogenic diet that can control seizures in some kids. I asked about the steroid shots (ACTH shots) but the doctor feels there are too many side effects and complications with these shots to try them yet. They can cause crazy high blood pressure, weight gain, out of whack blood sugar levels...etc. So, we are going to try the diet first and if we have to do the shots we can later on, but we would like to stay away from them.
To start this diet, we are meeting with a dietitian on January 6 to set up a plan. After that, Ruby will be admitted into DeVos Children's hospital for anywhere from 3-5 days to start the diet. It is very strict and it has to start with some kind of fast so they need to watch Ruby to see how she reacts to everything. If all goes well in the hospital, then we will be sent home with special formula and a specific regiment of what she needs to eat. I was told to buy a gram scale that measures in tenths of grams to we can measure everything she eats exactly.
I don't know a lot more than that, but we will be getting more info from the doctor about the diet and when our hospital stay will be. We meet with the neurologist next week so then he can clear up any questions we might have.
I am not excited about the hospital stay, but I am hopeful that this diet will be effective. I am so ready to try something else because it seems like we haven't made a lot of headway with all these meds. I am really hoping we can even wean Ruby off at least one of the meds because when she is not so sedated her personality starts to come out and she is much more active.
So, with every new thing we try there is a lot of hope and some fear. Hope that this will finally stop Ruby's seizures, and fear that it won't and then we won't know what to do next. I am also a little worried about having her food be so regulated, especially when baby #2 comes around; she sometimes has a hard time eating her normal formula so I hope she will do okay having to eat exact amounts of food.
But, once again, God is asking us to trust Him. He is continuing to lead us down this crazy path and we just keep praying that He will give us the feet to be able to walk it. Please pray for peace and healing. Thanks.
6 comments:
Maybe the exact amounts have more to do with the composition of the meal (i.e. everything going into the formula) rather than how much she eats?
Anyway, I'll be continuing to pray for Ruby's situation... I know it cannot be easy walking in your shoes right now. I'm so sorry you are having to continue to deal with this. May God give you peace my friend!
Oh wow, this sounds intense, although everything related to Ruby's health has been pretty intense for you guys. We will pray that this is the answer, and that some resolution comes before baby #2 comes!!!
You all are so amazing!!! I thank God that Ruby is with you both and receiving the best care possible!!! Praying for you all!!
We continue to pray for you guys, that doesn't sound easy but hopefully there will be a good outcome from this! Hope everything else is going well! Love you!
Chris and I would love to meet up with you guys for dinner or have you over sometime soon. We could try to do it when you are at DeVos, or if that is to hectic we could try for another time. Perry is about the same age as Ruby. Tell Mark to give Chris a call sometime soon and they can set something up (616-745-1379). I have been praying for Ruby and for your pregnancy too!
Hi guys,
Hoping the diet will be effective for Ruby. I am around to help especially when baby boy TH arrives. You're NOT alone. So glad you're able to go out for some fun tonight, too! I miss you and Merry Christmas!
Post a Comment