Sunday, December 28, 2008
Kind of a weird day today. We didn't see any seizures from Charlie until about 7:45pm when he had a cluster of about 12. We haven't had a day so close to seizure free in a long time. He was still pretty cranky (which is normal) and cried pretty much the entire two hours of nursery at church...except when I took him on walks around the building to give us all a break from the tears. I even took him out and we sat in the van for about 10 minutes to help him calm down. He loves to sit in the van and tells us about 10 times a day "I want to go ban." It was a good day seizure wise and a bad/normal day for the crankiness and crying. We introduced a new supplement on Friday that may or may not have anything to do with the seizure change/crying. He cries quite a bit so it is hard to know if a new med is making him feel worse. Who knew parenting was going to be such a guessing game.
Saturday, December 27, 2008
A day in the life with Charlie...
Charlie is a wonderful little boy whom we love much, but sometimes life it tricky with him in the mix. With Charlie, we're always at DefCon 5. For some time now, we've been gradually putting our house into lock-down. For example:
This is the gate we use to pinch the stove and the dishwasher doors so Charlie can't open them and use them as a step to get on the counters.
This is the backup stove lock.
Fridge lock so he doesn't push the lever to dump ice/water all over the floor.
This is the gate that protects the pantry from Charlie... for obvious reason.
The chairs are all tied to the table legs so he can't slide them across the floor to get on the counters
Fridge lock (he's broken all the standard store-bought varieties)
Drawer locks - these are on all the drawers in our home.
Now, by now my guess is you're probably asking yourselves, "Why are they so paranoid about keeping him off the counter?"
Here's the answer:
Yes. That's the microwave door, hanging by a thread. Our dear sweet son loves to swing from the microwave door, out over the floor. You only need to turn your head for 1/2 second and bam!
Oh, he also loves to strip, loves to climb, loves to swing/jump/rock...
Bless your heart Charlie. You may send your parents to the loony bin, but we sure do love ya.
This is the gate we use to pinch the stove and the dishwasher doors so Charlie can't open them and use them as a step to get on the counters.
This is the backup stove lock.
Fridge lock so he doesn't push the lever to dump ice/water all over the floor.
This is the gate that protects the pantry from Charlie... for obvious reason.
The chairs are all tied to the table legs so he can't slide them across the floor to get on the counters
Fridge lock (he's broken all the standard store-bought varieties)
Drawer locks - these are on all the drawers in our home.
Now, by now my guess is you're probably asking yourselves, "Why are they so paranoid about keeping him off the counter?"
Here's the answer:
Yes. That's the microwave door, hanging by a thread. Our dear sweet son loves to swing from the microwave door, out over the floor. You only need to turn your head for 1/2 second and bam!
Oh, he also loves to strip, loves to climb, loves to swing/jump/rock...
Bless your heart Charlie. You may send your parents to the loony bin, but we sure do love ya.
Friday, December 26, 2008
Update
There hasn't been much to report as of late. Charlie has been having regular seizures each day. For the last 6 days he's had 'drop' seizures, which means the seizures take him to the ground where he's convulsing. These have been lasting between 1-3 minutes each. We are going to have an MRI and EEG done in about 10 days. We hope the tests will yield something helpful.
As for the autistic challenges, we're still dealing with the same things. The behavior is up and down, etc. It looks like we're going to begin some therapy starting in January. We hope/pray that it will be the answer we've been searching for.
Thanks for all the love/support/prayers.
As for the autistic challenges, we're still dealing with the same things. The behavior is up and down, etc. It looks like we're going to begin some therapy starting in January. We hope/pray that it will be the answer we've been searching for.
Thanks for all the love/support/prayers.
Wednesday, December 17, 2008
The Big Update
This may take some time, but it probably makes sense to give a brief rundown of how we got to this point. So here goes:
Charlie was a wonderful, happy kid, full of smiles and very good natured for the first year of his life. He was progressing well, beginning to talk and walk all on schedule. At 13 months (Aug '06), shortly after his 1 year MMR immunization, we noticed the first sign of trouble -- eye flutters. We monitored him for a couple of months and watched the eye flutters increase in frequency and intensity. In October '06, we brought up the eye flutters with our primary care physician and he immediately sent us up to Primary Children's MC to get them checked. After days of testing which included an EEG and an MRI, he was diagnosed with Epilepsy.
Three months later he was back at Primary Children's for an another MRI. Since then we've tried multiple medicines and many alternative medicine options. Poor Charlie has taken medications that would turn most people's skins and been given the Jedi holistic treatments a few times over. He's been rubbed down with oils, bathed in salts, and lived on a diet that was basically lettuce and rice. Through all this we haven't found any success in treating the seizures, but he's been quite the little trooper.
At this moment, we're still working on finding a way to control his seizures. Yesterday we went up to Primary Children's MC for a follow up visit. When we started the process, they told us medicine works on 70% of the children in helping them control their seizures. We started with a medicine called Topamax, moved to a drug called Clonazepan, then evolved into Keppra. None of these have worked so we've moved on to what is now Charlie's 4th medicine -- a drug called Depakote. We've been gradually increasing the dosage over the last couple of months. At this point, we're nearing the top end of the dosage for his size and we still haven't seen any progress so it doesn't look good. The doctors officially put kids in the 30% category after the fourth medicine doesn't work. After the 4th med, they figure any additional medications only have about a 1% chance of working (or at least that's what they are telling us).
In our appointment yesterday, the doctors started to prepare us for the next steps in dealing with the epilepsy. They're talking about a couple of options - one is a diet called the Ketogenic diet (http://en.wikipedia.org/wiki/Ketogenic_diet) and the other is called a Vagal Nerve Stimulator (http://en.wikipedia.org/wiki/Vagus_nerve_stimulation). Let's just say both options only have about a 30% chance of having any effect and both would suck rocks to have to do. As of yesterday, we're feeling pretty discouraged at the options we have.
In the day to day grind, things on the epilepsy front have been deteriorating for the last little bit, which is why we were at Primary Children's yesterday. On a normal day, Charlie has anywhere from 15-50 small, fast (1-5 seconds) seizures. They come in clusters of 5-15 seizures, multiple times a day. As of Monday last week, Charlie has had multiple seizures that were over the 5 minute threshold for calling 911. He's had two over 15 minutes and one over 30 minutes. This morning Charlie got to take his first ride in the ambulance to the local hospital emergency room, though recently he's been inside ambulances enough to help the paramedics find the gauze if they get turned around. :-)
The other side of the frustration coin
In the midst of all the drama of chasing the epilepsy cure, we watched our happy, intelligent boy start to disappear. Language communications stopped, behavior deteriorated quickly and we were left scratching our heads. It was hard to realize the gravity of what was happening at the time because we were so wrapped up in the epilepsy battle, but soon it became apparent that something serious was wrong.
Charlie was not a normal kid... that much became clear pretty quickly. It was no longer possible to discount his behavior and development as 'just a little rambunctious' or 'all kids learn at different speeds.' In nursery at church he was different. He didn't play with the toys like any of the other kids. In the store he was different. He threw violent tantrums that no amount of discipline could control. At the park he was different. Most kids wanted to play on the playground but Charlie just wanted to run away, in any direction, and never look back... literally.
We began to look for help. Much of the awareness came when our niece Melissa told us about a cousin of hers that had dealt with similar issues that she was seeing in Charlie. Her cousin was diagnosed with Sensory Processing Disorder and as we read about this, it was a perfect fit for Charlie.
Armed with hope that some treatment might help, we looked for help and found relief with an early intervention program. The teachers were wonderful and tried so hard, but after months of working with Charlie through this program, and many days that left Mom in tears as she watched all the other kids progress while her son continued to deteriorate, we realized this was not working. His issues were beyond their help. We started to look again for answers and it came in the form of some additional testing we were doing at the Department of Health at the University of Utah. We met with a Child Psychologist there and after an hour of conversation we had a diagnosis - Charlie was on the Autism Spectrum.
Since finding that out, we've been able to key in on targeting ways to help him. Steff has poured over countless websites, read multiple books and looked into all sorts of therapeutic options for helping him, mostly to find that you have to either have a lot of money to afford it, or have no money at all so you qualify for help. Being in the middle is not a good place to be for this type of situation.
Despite all this, we feel like we've recently been blessed to find some amazing opportunities.
In her research, and through the recommendation of a wonderful neighbor who's walked a similar path, we recently identified a doctor in Salt Lake City named Joseph Humphries. He specializes in an aspect of medicine called biomedical treatment. He is regarded as one of the premier doctors for addressing autism cases in the country. Thus far, we've been happy with the results we're seeing. The basis of the treatments are simply to look at what's happening inside the body and administering natural remedies that help the body move into balance and rid itself of toxins (WARNING: THIS IS A BLATENT PERSONAL OPINION THAT YOU MAY NOT AGREE WITH) from immunizations that could be causing problems. His goal is to 'clear the clouds out' so Charlie can start to learn and develop and play 'catch-up.' Won't that be a miracle. Now the trick was to figure out how we could get him the training he needs.
This is where miracle #2 comes in. Yesterday, we received a call from our niece Melissa telling us about a friend of hers who's helped set up a treatment center for autistic kids. She has a daughter of her own with whom she made this journey successfully. We went by mostly to do her a favor, and were amazed at what we found. The center is recently opened and combines therapies of all sorts and therapists that are specialized to help kids like Charlie. We spent some time there with the Director and were so impressed with how much good it could do for our little guy, but feeling a bit frustrated that it seemed so out of reach. Today we found out there is a chance we qualify for some scholarship opportunities which would help offset a portion of the costs. We're currently working on some other alternatives to make it work and wish to have Charlie starting sessions in January that will focus on speech therapy, behavioral issues, and a host of other necessary developmental challenges.
So, for anyone who's ever wondered about Charlie, you just got the brain dump. We feel as blessed as anyone to have this little guy in our lives. He is just as adorable as anything you can imagine, though he comes standard with the ability to make his parents feel absolute frustration, sorrow, guilt and sympathy at times.
Moving forward we'll try to keep you updated on some of the things that are in limbo and going to be happening.
On the autism side of the house, we expect to know more about the therapy soon and hope to see some progress on the things the Dr's working on (he's currently taking 7 medicines).
On the epilepsy side of the house, we have an MRI and an EEG scheduled for early Jan at Primary Children's. We're hoping to find something that will allow us to make some progress.
Again, thank you all for your support and love and considerations and prayers. This little guy is worth it all.
Charlie was a wonderful, happy kid, full of smiles and very good natured for the first year of his life. He was progressing well, beginning to talk and walk all on schedule. At 13 months (Aug '06), shortly after his 1 year MMR immunization, we noticed the first sign of trouble -- eye flutters. We monitored him for a couple of months and watched the eye flutters increase in frequency and intensity. In October '06, we brought up the eye flutters with our primary care physician and he immediately sent us up to Primary Children's MC to get them checked. After days of testing which included an EEG and an MRI, he was diagnosed with Epilepsy.
Three months later he was back at Primary Children's for an another MRI. Since then we've tried multiple medicines and many alternative medicine options. Poor Charlie has taken medications that would turn most people's skins and been given the Jedi holistic treatments a few times over. He's been rubbed down with oils, bathed in salts, and lived on a diet that was basically lettuce and rice. Through all this we haven't found any success in treating the seizures, but he's been quite the little trooper.
At this moment, we're still working on finding a way to control his seizures. Yesterday we went up to Primary Children's MC for a follow up visit. When we started the process, they told us medicine works on 70% of the children in helping them control their seizures. We started with a medicine called Topamax, moved to a drug called Clonazepan, then evolved into Keppra. None of these have worked so we've moved on to what is now Charlie's 4th medicine -- a drug called Depakote. We've been gradually increasing the dosage over the last couple of months. At this point, we're nearing the top end of the dosage for his size and we still haven't seen any progress so it doesn't look good. The doctors officially put kids in the 30% category after the fourth medicine doesn't work. After the 4th med, they figure any additional medications only have about a 1% chance of working (or at least that's what they are telling us).
In our appointment yesterday, the doctors started to prepare us for the next steps in dealing with the epilepsy. They're talking about a couple of options - one is a diet called the Ketogenic diet (http://en.wikipedia.org/wiki/Ketogenic_diet) and the other is called a Vagal Nerve Stimulator (http://en.wikipedia.org/wiki/Vagus_nerve_stimulation). Let's just say both options only have about a 30% chance of having any effect and both would suck rocks to have to do. As of yesterday, we're feeling pretty discouraged at the options we have.
In the day to day grind, things on the epilepsy front have been deteriorating for the last little bit, which is why we were at Primary Children's yesterday. On a normal day, Charlie has anywhere from 15-50 small, fast (1-5 seconds) seizures. They come in clusters of 5-15 seizures, multiple times a day. As of Monday last week, Charlie has had multiple seizures that were over the 5 minute threshold for calling 911. He's had two over 15 minutes and one over 30 minutes. This morning Charlie got to take his first ride in the ambulance to the local hospital emergency room, though recently he's been inside ambulances enough to help the paramedics find the gauze if they get turned around. :-)
The other side of the frustration coin
In the midst of all the drama of chasing the epilepsy cure, we watched our happy, intelligent boy start to disappear. Language communications stopped, behavior deteriorated quickly and we were left scratching our heads. It was hard to realize the gravity of what was happening at the time because we were so wrapped up in the epilepsy battle, but soon it became apparent that something serious was wrong.
Charlie was not a normal kid... that much became clear pretty quickly. It was no longer possible to discount his behavior and development as 'just a little rambunctious' or 'all kids learn at different speeds.' In nursery at church he was different. He didn't play with the toys like any of the other kids. In the store he was different. He threw violent tantrums that no amount of discipline could control. At the park he was different. Most kids wanted to play on the playground but Charlie just wanted to run away, in any direction, and never look back... literally.
We began to look for help. Much of the awareness came when our niece Melissa told us about a cousin of hers that had dealt with similar issues that she was seeing in Charlie. Her cousin was diagnosed with Sensory Processing Disorder and as we read about this, it was a perfect fit for Charlie.
Armed with hope that some treatment might help, we looked for help and found relief with an early intervention program. The teachers were wonderful and tried so hard, but after months of working with Charlie through this program, and many days that left Mom in tears as she watched all the other kids progress while her son continued to deteriorate, we realized this was not working. His issues were beyond their help. We started to look again for answers and it came in the form of some additional testing we were doing at the Department of Health at the University of Utah. We met with a Child Psychologist there and after an hour of conversation we had a diagnosis - Charlie was on the Autism Spectrum.
Since finding that out, we've been able to key in on targeting ways to help him. Steff has poured over countless websites, read multiple books and looked into all sorts of therapeutic options for helping him, mostly to find that you have to either have a lot of money to afford it, or have no money at all so you qualify for help. Being in the middle is not a good place to be for this type of situation.
Despite all this, we feel like we've recently been blessed to find some amazing opportunities.
In her research, and through the recommendation of a wonderful neighbor who's walked a similar path, we recently identified a doctor in Salt Lake City named Joseph Humphries. He specializes in an aspect of medicine called biomedical treatment. He is regarded as one of the premier doctors for addressing autism cases in the country. Thus far, we've been happy with the results we're seeing. The basis of the treatments are simply to look at what's happening inside the body and administering natural remedies that help the body move into balance and rid itself of toxins (WARNING: THIS IS A BLATENT PERSONAL OPINION THAT YOU MAY NOT AGREE WITH) from immunizations that could be causing problems. His goal is to 'clear the clouds out' so Charlie can start to learn and develop and play 'catch-up.' Won't that be a miracle. Now the trick was to figure out how we could get him the training he needs.
This is where miracle #2 comes in. Yesterday, we received a call from our niece Melissa telling us about a friend of hers who's helped set up a treatment center for autistic kids. She has a daughter of her own with whom she made this journey successfully. We went by mostly to do her a favor, and were amazed at what we found. The center is recently opened and combines therapies of all sorts and therapists that are specialized to help kids like Charlie. We spent some time there with the Director and were so impressed with how much good it could do for our little guy, but feeling a bit frustrated that it seemed so out of reach. Today we found out there is a chance we qualify for some scholarship opportunities which would help offset a portion of the costs. We're currently working on some other alternatives to make it work and wish to have Charlie starting sessions in January that will focus on speech therapy, behavioral issues, and a host of other necessary developmental challenges.
So, for anyone who's ever wondered about Charlie, you just got the brain dump. We feel as blessed as anyone to have this little guy in our lives. He is just as adorable as anything you can imagine, though he comes standard with the ability to make his parents feel absolute frustration, sorrow, guilt and sympathy at times.
Moving forward we'll try to keep you updated on some of the things that are in limbo and going to be happening.
On the autism side of the house, we expect to know more about the therapy soon and hope to see some progress on the things the Dr's working on (he's currently taking 7 medicines).
On the epilepsy side of the house, we have an MRI and an EEG scheduled for early Jan at Primary Children's. We're hoping to find something that will allow us to make some progress.
Again, thank you all for your support and love and considerations and prayers. This little guy is worth it all.
How this is going to work.
For those who are interested,
A number of people have asked and continue to wonder what's happening with Charlie and his battle with Autism and Epilepsy. There are questions about what things we're trying, what's working, etc. We appreciate very much the love and concern of friends and family. It strengthens us. While we'd love to let everyone know what's happening, its hard to keep everyone in the loop at any given time. So, we thought it may just be easier for us to sorta filter out updates via a blog.
That being said, we're going to handle this sorta like a journal of events for Charlie. Sometimes it may not be in narrative format... we may just state some of the events for the day, but we're going to try to keep it updated as best we can.
There is just one expectation/caveat with this blog -- it is not intended to garner sympathy, etc, so we've removed the ability for people to leave comments. While we appreciate any support, we are not doing this to try to get people to feel anything for us. We simply want to keep those people who are far away or with whom we don't get to talk to often in the loop as to what's happening.
Thank you all for your support. We love you all and thank you for all the prayers and support on behalf of Charlie.
A number of people have asked and continue to wonder what's happening with Charlie and his battle with Autism and Epilepsy. There are questions about what things we're trying, what's working, etc. We appreciate very much the love and concern of friends and family. It strengthens us. While we'd love to let everyone know what's happening, its hard to keep everyone in the loop at any given time. So, we thought it may just be easier for us to sorta filter out updates via a blog.
That being said, we're going to handle this sorta like a journal of events for Charlie. Sometimes it may not be in narrative format... we may just state some of the events for the day, but we're going to try to keep it updated as best we can.
There is just one expectation/caveat with this blog -- it is not intended to garner sympathy, etc, so we've removed the ability for people to leave comments. While we appreciate any support, we are not doing this to try to get people to feel anything for us. We simply want to keep those people who are far away or with whom we don't get to talk to often in the loop as to what's happening.
Thank you all for your support. We love you all and thank you for all the prayers and support on behalf of Charlie.
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