This blog is to share "our crazy journey" dealing with Jayen's Infantile Spasms. Our struggles and triumphs, all in one place for family and friends and anyone else dealing with this catastrophic type of epilepsy.
About Me
- Jayen Hochstein
- On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.
Monday, May 12, 2014
Another new medicine
After more than a week of trying to get Jayen a new prescription, we finally heard back from the doctor and pharmacy. Our insurance denied the new drug the doctor was trying to prescribe and wants us to try something else first. As if 22 other medications didn't indicate that we have tried many others before this one. The new prescription was sent to the pharmacy only for them to inform me they needed to talk to the doctor's office again because he would then be on two different anti-epileptic medications. I kept questioning the lady on the phone. I couldn't understand why it was a big deal that he was prescribed two anti-epileptic medications. We have been on 5 at a time before. Why was this suddenly an issue? I don't understand why it is so hard to get my son help. Is this even going to be help? What's the point of another pill? We are having seizures every three days. After 22 medications is anything really going to help? I guess I will just shove another pill down his throat and hope and pray that is does something to help. First do no harm!?!?!?
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