Just an update on Ellison!! She has started an all blended diet thru her tube, consisting of chicken, collards, a baby food veggie& fruit, oatmeal cereal, juice,canola oil, & salt. She seems to be tolerating it well! She also got glasses. Her Dr thinks they will put things in better focus, since her stigmatism & near sidedness has gotten worse. We are still waiting to hear if insurance will approve a new seizure med(Onfi). She has been denied twice, even with appeals. Our neurologist, along with the Onfi support team will be writing a letter to our insurance company in hopes of getting it approved. The Onfi support team is also sending her a months supply for now. Not sure whats going to happen if she is still denied? The pharmacist gave us a coupon, but its still $300 a month😳- so geez?! Once she starts this med we can begin weaning her off her other med Topomax. So all of this puts her behind for the 8 hour EEG she is supposed to have in early February. She is supposed to be doing the wean & Onfi for 6 weeks before the EEG. She will continue to take Sabril, her other seizure med. Her neurologist is disappointed in how its not working as well as he thought it would. She is having 20-40 seizures a day, which is about half of what she was having, so it has worked, but is at the max dose for her weight. This week, she has dealt with an infection in/around her g tube, which they think was caused from constipation/ stomach acid build up,talk about a sad little girl!! She could not tolerate any pressure on her stomach & had to be at work with me, Tam even took a day off! She misses school & her normal routine! Today is the second day she is fever free & seems to be feeling a little better(in her pjs & smiling a bit) still in a little pain! She is on an antibiotic & cream! We see her GI Dr Wednesday & hopefully we can discuss switching the g tube out with a MicKey button or AMT mini ONE. Maybe she will feel up to therapy in Atlanta too! It is also still so very important that our Governor, Senators & Representatives are contacted, through e mail, etc in support of cannabis for medical treatment with in state growing. We truly believe it may be the best option not only for Ellison in getting her seizures under control, but for many others as well!
Posted on: Sun, 18 Jan 2015 18:47:21 +0000
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