After we came home with Jon from the hospital we were faced with trying to get his seizures under control. With the neurologist's guidance we tried various medications but none of them seemed to work. Some of the meds made his gums grow while others produced hair growth on his body.
During this time his seizures were increasing and he had many falls. Quite a few trips to the ER to stitch up his lips or other head wounds. He would fall forward very hard when seizuring. We tried to protect him as much as possible, made a thick padding on his high chair table so that when he seizured he would not hit the hard surface. We also purchased a helmet for him. There was no helmet to be found in his size so his Dad fashioned the smallest hockey helmet we could find to fit him. As Jon learned to crawl he really needed this helmet as he would so often hit his head on the floor as he seizured. One day I counted 35 seizures. After the seizures he was very tired. He had started to string some words together but after a week of these intense seizures he lost all speech and it never came back.
During this time many trips were made to the Children's Hospital in Winnipeg to see the neurologist. We were desperate to find something that would help our son and then finally we got the news that there was a new drug available that had been quite successful in Europe and was going on trial in Canada. The new drug was sodium valproic acid. We were apprehensive but really had no other choice. Jon was one of the first ones in Manitoba to try it, we had to sign for it and for awhile there was no cost to us.
During this time we had asked for prayer at our church that this medication would be the one that would help and God answered these prayers in a most wonderful way. Jon's seizures decreased dramatically two weeks after starting the new meds. He still had many seizures a day but nothing like it had been.
To this day Jon is still on this drug (plus a few others) and although we have had to adjust the amount as he grew it has been the best one we have tried.
It's been good to read this and to understand a little what Jon has had to go through along with your whole family over the years. I'm glad there is a medication that has been helpful for him...
ReplyDeleteIt makes me feel sad that seizures took away some of my brother's life skills. It's so easy to wonder what if the right med had been available sooner....
ReplyDeleteBut I am grateful for a med that made the difference. I don't even want to begin to wonder in the direction what if they didn't find the right med as soon as they did.
I cannot imagine how painful it must have been to see your child seizure and get hurt. Such a helpless feeling! And so hard to see his development go down. I wonder if today they could do brain surgery on children with TS? Your loving example is a big witness to God's grace in your life. Thank you for sharing your story.
ReplyDeleteWhat a difficult period of your lives. We hate to see any child suffer and when it happened so frequently you must have often felt deep despair. I'm glad you finally found something to help control the seizures.
ReplyDeleteI love how Jon's happiness is captured in that last picture.
Wow...what a journey for all of you. Thanks for sharing it with us.
ReplyDeleteI can't imagine 35 seizures a day and trying to make sure he wouldn't get hurt when he would seize! And losing his first words/sentences like that! How did you manage through those early years? Did you have an amazing family and support network to help, or were you mostly on your own at first?
ReplyDeleteOcean Soul..we managed somehow, mostly on our own. We had some help from family and a whole lot of dependence on God.
ReplyDeleteGod put something of His heart into every mother's heart, did He not? How else could we rise above the limitations of human strength and endurance!
ReplyDeleteI can't imagine all the medical questions and concerns that must of poured into your mind consistently...I love pouring over your story.
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