Wow! It's been a long time since I updated the blog, and yet so much has happened in Samuel's life since May 7th when I did last.
The last few months, particularly May, have been rather a roller coaster ride with Samuel's health, but good has come of it. He was steadily having more and more seizures from November through April, progressing from 1 seizure/week
to 3-4 seizures per week. It was subtle, but in late April we chose to add another medication, Trileptal, because it looked like he was getting worse.
Samuel on his 4th birthday, July 5th!
Well, that medication worsened him, and that last week of April he had at least one seizure a day, and so we started taking him back off the medication because of it, but that just made it even worse. For a few days, he had several each day, so the doctor had us remove the medication cold turkey and start him on a different medication. If you will excuse my phraseology... "all hell broke loose" after that. He ended up having 40-100 seizures a day for about a week, some of which were a new type of seizure that made him fall flat on his face, which ended up a bruised and cut-up mess. It was awful awful awful.
I have never been tested in my trust of God and my walk as much as I was during that one week. In the midst of all this we started him on two more medications, in addition to the two that obviously weren't working, and within three days, the seizures very suddenly stopped.
On a Friday morning, he had his usual number of many seizures per hour, and when he awoke from his afternoon nap, he had none at all and stayed seizure-free for two weeks.
We know there were many many people praying for Samuel, around the world, so we testify that God intervened in Samuel's life for sure. The doctor had said that once we found the right medicine, this is what would happen, but we know that God has Samuel firmly in His hand.
Samuel playing in the sprinklers July 2009
Since those two weeks without a seizure, Samuel went six weeks without a seizure, then another two and a half weeks without one. Now he's at 4 days. He has adjusted well to the medicine too, all four of them (!), although there are times where he's just not himself for sure. They make him hyper and moody and squirrely a lot of the time.
We took him to UCLA Medical Center's Epilepsy clinic in early July to get us an "in" to UCLA in case Samuel crashes again. Plus, I now have a doctor there who actually invites me to email him if I have questions, whereas his doctor in Reno doesn't even call back well and doesn't do email (a very frustrating element in the above saga). The doctors there diagnosed him with a type of epilepsy called Doose Syndrome, confirming the Reno neurologist's tentative diagnosis. Kids who have this type of epilepsy usually have a tough time finding the right medicine, are often worsened by certain medications, and many times medicines that work for a while will stop working, so we are prepared that our current respite could be temporary. Samuel could crash again at any time. Right now his medication is helping, but it could stop working just as quickly.
On the positive side, most kids with Doose Syndrome outgrow it before puberty and sometimes as young as 6 years old. From a medical standpoint, there is hope! ...and with God, there is ALWAYS hope!
Like I said above, Samuel's crash in May challenged our trust in God more than anything else ever has, but it didn't crack it. Our trust in God grew more through it. I realized during that time how much I really don't rely upon God for most things in everyday life because life, in general, is pretty easy, and I take care of most things on my own. Then when the really hard thing hits, we're just not ready for it. We're out of practice in trusting God, so to speak.
We also had our own deeply beautiful, real, transforming moment of experiencing that peace which surpasses all understanding. One of those really hard days I could feel myself crumbling inside, getting panicky and depressed and at a complete loss as to what to do (partly exacerbated by problems with the neurologist), and Phil was really low too when he got home from work. My mom was there helping me with Samuel, so Phil and I went back to the bedroom to pray and pray and pray on our faces before God. It was a heartwrenching prayer time for sure. The biggest issue we were praying for was whether we should start him on the two new medications or not because one of them had been a problem before, and we really didn't trust our doctor. Well, at the end of the prayer time, we were both flooded with an amazing peace, and all of our uncertainty and fears melted away in a moment. We walked out of that room ready to order the medicine and completely free of all the panic and fears we'd felt only moments before. It was transforming.
Now, Samuel takes four medications every day: Keppra, Depakote, Lamictal, and Clonazepam. We ask for prayer that he will continue on this current good trend of few seizures and will even improve to having none at all. We'd love for him to outgrow this as soon as possible!
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