The last week of July things went from bad to worse. Sadie had been on vigabatrin, her new seizure medicine, for about two weeks. The medicine seemed to have an adverse effect, as her seizures started INCREASING. Each time the doctor would increase her meds, her seizures would go up. The increased medication was also making her drowsy. By the last weekend in July, her only awake time was when she was having spasms.
We were on the phone with the neurologists every day talking about scary remedies, from administering diastat (an emergency medication given rectally to stop seizures), to admitting her to the hospital to begin ACTH, an injectable steriod treatment. We had already decided that ACTH had too many scary side effects for us to try, one of which is possible death. So we were stuck with a baby who is constantly having seizures.
On top of the seizures, Sadie had a conformer put in her eye last week, and the conformer ended up scratching her cornea. Back to the ocularist to get it taken out, and then to the opthomologist to get medicated drops. Ugh. If only I could get paid for coordinating doctors appointments.
Needless to say all of this was super stressful. We were at the end of our rope when the hospital called to tell us they were able to get her in to start the ketogenic diet right away. Sadie was admitted on Monday. She received her first bottle of KetoCal (a special ketogenic formula) on Monday night. It smells like a vanilla milkshake. Sadie loved it...but of course she's never turned away food. We anxiously awaited the arrival of ketones in her urine, which indicates that the diet is working. I don't think I've ever looked forward to diaper changes as much.
Monday and Tuesday went by without ketones. Sadie's seizure activity held steady. She had a few scary episodes at the hospital, one of which lasted 50 minutes. FINALLY late Tuesday night she had a trace of ketones in her urine. Yay! The doctors came in saying they wanted to pop the champagne.
Speaking of the doctors, I can't say enough good things about the staff at Childrens Memorial Hospital, many of whom are aware of sadie's condition and pulled strings to get her in earlier to start the diet. Sadie was released from the hospital on Thursday night and seems to be getting better, slowly...
We are cautiously optimistic.
OH Cathy...I am beyond thrilled that things turned toward the positive. Hang in there and give Sadie my Love! xoxoxoxo
ReplyDeleteCathy - we are cautiously optimistic with you and you are 100% in our hearts. xoxoxox
ReplyDeleteWow, what a month! We are following Sadie's progress so please keep us updated. She is so resilient. Stay strong and let us know if there is anything we can do.
ReplyDeleteWhat a roller coaster! So hard to be scared for your child! I know that Sadie is TOUGH stuff and that they will get this all worked out. Hang in there! We're thinking of you! Dan and Katie
ReplyDeleteCathy, Thank you for the update. So glad you started this blog. Miss Sadie sounds like one tough baby girl! And, we're all behind her! Glad to hear of the progress. And so thankful that you have a supportive medical team. Love to your family.
ReplyDeleteGOOSEBUMPS!!!!! We are SO happy for you!
ReplyDeleteCathy - glad to read the updates. We are praying for you. It sounds like you have wonderful medical care for Sadie and it's great to hear that her new treatment is going well.
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