Zachary- December
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| Title: |
Zachary- December |
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This is just a quick upload of some video we've taken over the past month or so. IT shows Zach's great improvement once the seizures stopped on Nov. 6 thanks to God and the ACTH drug treatment.I know it's long overdue for an update. Things tend to get away from me and updating the blog gets pushed off more than it should. First I want to thank all our family, friends, friends of friends and those we have not met who continually check in for updates and news. We really appreciate it.
Back in October, Zachary went through seizures for three weeks while being treated on a medication called Vigabitrin. After the three weeks, the medicine only made the seizures lessen, not fully stop. So on Nov. 1, he was admitted to the hospital to start a new treatment called ACTH - it is a hormone/ steroid injection that has been a neurology standard for treating infant spasms since the 1940s. The treatment is one shot a day. The bad thing about the medicine is the potential for nasty side effects like high blood pressure, high glucose levels, weight gain and in worse cases infant diabetes.
Now the ACTH medication is made exclusively by a company called QuestCor that basically monopolized the rights, patents, etc on the drug and decided that it would be smart to try and tweak the medication and sink lots of money into research. That was within the last few years. Keep in mind this drug has been in existence since the '40s. So because Questcor is a small company and they spent millions on the drug, they decided to jack the price up from approximately $1600 a vial (which is about 10 shots) to $23, 000 a vial.
Initially our insurance outright rejected covering the drug. So we were stuck at the hospital while the insurance company, Questcor and the hospital figured everything out for us to secure this drug to self - administer at home. While in the hospital, the insurance had to cover the injection of the drug so it was almost our sanctuary. And as desperate parents wanting nothing more than to stop the seizures we were willing to do anything. We stayed at the hospital with him 24/ 7 sleeping on the floor.
During this time, Zachary's seizures actually increased in intensity and it was extremely scary. He was also becoming more aware of them and would not only get upset, but would try to fight them. On Nov. 5, he had his most prolonged spasm session ever which lasted 45 minutes with 175 spasms. After that, there were no more.
Zachary has been seizure free since Nov. 6. When a full day passed without seizures, we were convinced it was the work of God and the ACTH. We were not going to leave that hospital until the treatment was complete. But, praise God, on Nov. 8 Questcor was able to make my insurance cover the full treatment under a major medical clause. The total cost of a month's worth of the injection: $72, 000.
After the month's treatment under close monitoring of visiting home nurses and a weaning off period, Zachary is completely off the ACTH, and completely seizure free. We even had another EEG conducted and the brain waves proved there is absolutely no more seizure activity.
Since then, Zachary's development has basically skyrocketed. The seizures held him back considerably and even regressed him a bit. But now he is doing great thanks to the grace of our Lord and Savior Jesus Christ.
We know that Zachary has been in the prayers of Christians around the country and even the world from those that we know and even those that we don't. Prayer requests went out and Zachary was included on prayer lists of many different churches, families, small groups and others. Zachary's success and healing has come from all your prayers and the work of God our Father. We thank you all and praise the Lord!
There's so much more to write about that could all be separate posts in themselves. I want to talk about the change in perspective a parent goes through when experiencing this with their child. And how focused and appreciative one becomes with their family - cherishing them and loving the small, precious, simple moments that mean so much - like your child falling asleep in your arms.
Then there's also Zachary's great achievements. Just this weekend, he started using a spoon and was able to bring it to his mouth to feed himself. He did this for his whole feeding with some minimal assistance from mom. He can say 'mama', bring his hands together, play with toys and does great with 'tummy time'. Smiles and laughter are a regular blessing from him everyday. I'm convinced that one of God's main gifts to mankind is the laughter and smiles of a baby - there's nothing better.
newsnate.blogspot.com |
| YouTube URL: |
http://www.youtube.com/watch?v=yRLLkcZ2tsQ |
| Views: |
3,126 |
| Comments: |
10 |
| Video Tags: |
Cerebral Palsy Zachary Charlan Infantile Spasms West Syndrome |
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