We are going to go ahead with the steroid shots. Neurology is staring the process of getting it authorized by our insurance. When/if that happens then they are going to call us before the order the medicine so we can still back out, but right now the plan is to move forward with the ACTH. As of now, this is our only solid medical option left. We are hoping they stop the seizures for good, but if they don't, then at least we will have peace that we exhausted all of our traditional options. Last time we did the injections, Ruby was fussy and chubby, but medically speaking she did okay and she recovered from them quickly. We are hoping she handles them as well, or even better this time around. I think we will add a different med (maybe topamax?) as we wean the ACTH to see if we can get seizure control for a longer period of time.
After next week we are going to take a break from therapy at Mary Free Bed. We think Ruby is making some progress with therapy there, but insurance will only pay for so many visits and we don't want to "waste" those visits while Ruby is crabby on the steroids. We decided it makes the most sense to get her seizure free again (hopefully!) and then ramp up therapy and see how much progress we can make.
After the steroids we are planning on doing some naturopathic type things to get all of the toxins and junk out of her body which will also hopefully help her stay seizure free and help her system recover quickly from the steroids.
I feel good about this plan...even though the steroids are a little scary again. At least this time we know what to expect and we know that shortly after the injections are stopped our happy Ruby will once again return.
Thanks for your prayers for direction; we continue to feel peace and joy that can only come from a loving heavenly Father.
6 comments:
Continuing to pray for Ruby and for you as you prepare for the steroids. My heart goes out to you and Mark as you weigh medical decisions.
Thanks for sharing your family's story:) Have you considered applying for SSI disability for Ruby? Medicaid coverage, respite, and additional help. Please send me an e-mail if you want to know specifics. I work with Iowa's birth to 3 program. vavnvoorsts @ g mail .com (no spaces).
We'll be praying for you guys over the next weeks..for restful, quiet nights and happy moments throughout the day. Blessings to you!
Definitely will pray as you begin this round of steroids. Little Ruby, so many people are praying for your body and your mind and your health.
We have medicaid coverage for her (called Children's Special Health Care in MI) and this helps for some of the equipment we have to order (feeding chair, stander and eventaully a wheelchair). We work with Early On which is MI's 0-3 program and she gets some therapy through them also. Not sure about respite care yet, although we might look into it during the steroids.... Thanks for the info.
Kelli,
I am glad you guys made a decision and a plan you feel good with. We are starting the process on Monday to start teh ACTH for Noah, so it looks like we'll be going through this together.
Big hugs,
Erin
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