A friend recently said that he was surprised that during these past 2 years with Soren we haven't asked for help. And this hasn't been because we haven't needed help or that help wasn't offered. The fact is, the severity of Soren's condition has sort of crept up on us relatively slowly.
For example, when you are diagnosed with cancer, everything happens quickly because you've got to start getting rid of the cancer as soon as possible. One's descent into the hell that is cancer is immediate.
However, our introduction into the hell that is epilepsy was gradual. When Soren had his first seizure in the bath, I thought/prayed it was just a fluke. Even the next day when my sister saw the second seizure and we had all our testing done, we still were given no medication to treat the seizures because maybe...just maybe...they would never come back. And for 3 weeks, they didn't.
But then the seizures started up again. And then the meds started. Now, if you are lucky, your seizures are controlled by the first or second medicine. About 70% of people with epilepsy have their seizures controlled with meds quickly. But if you are part of the 30% that has Intractable Seizures (seizures uncontrolled by meds), the gates to epilepsy hell begin to open. The probability of finding the correct anti-epileptic drug (or AED) go WAY down after the first two meds have failed.
At this point, for us, the gates pretty much FLEW open. We went from one med to the other, but they weren't working. And the trick with Soren is that he was started on meds to deal with partial complex seizures, but then his seizures changed into Infantile Spasms. That's a whole other set of drugs. Plus Infantile Spasms are notorious for being hard to get under control. And, sure enough, the popular drugs to treat IS didn't work on Soren.
Back to asking for help. At first, we didn't know how bad it was. We were in the dark. We were holding on to hope for a simple solution. Then, when Infantile Spasms were introduced, we actually couldn't ask for help because the medicine that Soren was on broke down his immune system and we weren't allowed to socialize for fear of him getting sick. We now were in full-on hell. And while all this was happening, my job ended, so I was suddenly not around my work friends to update them all that was going on. Now I know that any of our friends would have been happy to help, but being quarentined, we suddenly felt very alone.
To add to all this craziness, Soren was holding his breath and turning blue when he was seizing. He was very difficult to feed for reasons I'll explain at a later date and I was the only who could feed him. I really needed help but I didn't know who to ask or how to get it. Finally I met other moms in similar situations who were getting nursing help. They encouraged me to get respite care funded through the state so that I wouldn't go bonkers and we as a family could have some sanity. I did finally get help by getting these respite hours, which has been a true blessing.
So what I'm trying to say is that I know people wanted to help us, but for the longest time, we didn't know what help we needed. And then once we figured that out, it was so extreme, we had to take different avenues to get that help. But we appreciate all the love, good wishes, and kind words we get from our friends and family about Soren. Those really help!
Amy
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