Sorry for not posting in so long; it has been a rough week. Ruby continues to have a lot of seizures (we are up to around 35 single spasms a day). She has not been sleeping well and then today she threw up a few times-- not sure what that is all about but hopefully it will pass soon. We were on the fence for awhile about doing another steroid treatment, but because of the last couple of days, it looks like we are going to start the ACTH injections soon. I think we are going to start her at a lower dose this time and see if it gives her seizure control with less side effects. We are waiting on a final okay from our insurance; hopefully we hear from them by the end of the week. There is a vial of the ACTH in our fridge from last time so as soon as we hear we can start it without waiting for a shipment of the meds.
We are also in the process of pursuing some more holistic/naturopathic treatments for Ruby. We are very impressed with the work of Dr. Amy Yasko and have decided to start her protocol of supplements and genetic testing. I will explain more another time, but we are encouraged by the progress she has seen in kids with neurological disorders.
It has been a long week and we are tired of making tough decisions. We are hoping and praying that the steroids give us a break from the seizures for awhile without all the crazy side effects. Thanks for your support. Prayers for endurance during the next several weeks of steroids would be appreciated.
3 comments:
Kelli, I've been wondering about you guys... I'm so sorry to hear about all the seizures and the difficulties you are facing. I hope you get some good rest soon and get the green light from your insurance.
My heart hurts for all your frustrations. I would definetly try some of the homeopathic stuff out there. there is real data that it works.
I'm so sorry. We continue to pray for your family.
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