Saturday night was a doozy for us.
Dawson laid down Sat afternoon for a nap and when he woke up I went back their he was sitting up in bed. I laid down beside him to see if he wanted to go back to sleep and thats when it happened...
His eyes rolled back in his head, he was completely limp, not breathing, turning colors. Never never never have I seen anything like this before in my life. I screamed for Allison to come and when she saw him she called 911.
After a couple of minutes, he started to come out of the seizure but he was definitely not back yet. Lights on but nobody home!!
She was talking to the 911 operator and we were discussing whether or not we needed assistance and he did it again.. eyes back, limp, stopped breathing the whole 9 yards all over again.. Of course at this point we told them to come as fast as possible.
We have been living with seizures since Dawson was 2 months old and I consider myself to be well kept together during clusters of seizures but I was just not prepared for this. He has never done this before and it scared Allison and I half to death.
At the hospital he was monitored and given an IV ( Dawson put up a great fight!! I was so proud) and after a while he was given a seizure med through his IV that is supposed to stop seizures and shortly after that we were discharged to go home.
We made it to Granny's and Grampy's to get Madison and I was holding Dawson and it happened again.... It's as though whatever they gave him ( cant remember the name right now) made it worse... who knows??? This kid is really putting us through our paces right now..
Why after 2 years would he have this type of seizure out of the blue like this???
Saturday night he was fine, He woke up Sunday morning and had his " normal" cluster of seizures and as of today he is doing really great..
I don't even know what type of seizure to call what he had??
His neuro is supposed to call us later this afternoon and I am anxious to hear what she thinks about all this and what possibly is going in with him..
Our family, our son, is under attack from the enemy. He wants us to cry out in despair and question everything we know to be the truth. He wants to break us down because he knows how much we love God. We WILL NOT be shaken!!
We praise God for all he has done for us!!
Please continue your prayers for us as we fight for seizure freedom for Dawson.
Our love to all
Jeff and Allison
Monday, October 12, 2009
Saturday, October 10, 2009
Screaming Seizures
The other night Dawson woke and started to have what we thought was going to be another cluster of seizures just as he has done many times before. But this night it was different..
With each seizure there was a scream. Its very hard to describe,but if I had to, i would describe it like this.... If you can imagine scaring the absolute BeJiggles out of a two year old.. It was that kind of scream. I mean a really really scared and frightened for his life kind of scream..
Not a scream of pain, but a scream of terror.. And he did this with most every seizure during this cluster. I think it was more of a reflex than him being that scared or terrorized.. At least that's what I'm telling myself because it makes me feel better. In between seizures/screams he was fine but those screams.... good grief.
We have never heard anything like that before in our lives and we hope we never do again. It was absolutely sickening and literally made me sick to my stomach hearing and seeing it. Allison bless her, was the one holding him while he was doing it. Needless to say, we didn't sleep much the rest of the night afterwards.. Please Dawson, I know you couldn't help it, but PLEASE never do that again..
We made the decision to restart him on Keppra. Most of you know I hate Keppra because of how it affects his moods. It makes him angry and act out in rage but I have noticed that when he came off of Keppra his seizures were a lot harder. So we are three or four days into restarting Keppra and we can tell a difference. In his mood yes, but also in his seizures. There have been no more screaming episodes and for that we are truly thankful.
Please continue to pray for him as we seek seizure freedom once again.
Love to all
Jeff and Allison
With each seizure there was a scream. Its very hard to describe,but if I had to, i would describe it like this.... If you can imagine scaring the absolute BeJiggles out of a two year old.. It was that kind of scream. I mean a really really scared and frightened for his life kind of scream..
Not a scream of pain, but a scream of terror.. And he did this with most every seizure during this cluster. I think it was more of a reflex than him being that scared or terrorized.. At least that's what I'm telling myself because it makes me feel better. In between seizures/screams he was fine but those screams.... good grief.
We have never heard anything like that before in our lives and we hope we never do again. It was absolutely sickening and literally made me sick to my stomach hearing and seeing it. Allison bless her, was the one holding him while he was doing it. Needless to say, we didn't sleep much the rest of the night afterwards.. Please Dawson, I know you couldn't help it, but PLEASE never do that again..
We made the decision to restart him on Keppra. Most of you know I hate Keppra because of how it affects his moods. It makes him angry and act out in rage but I have noticed that when he came off of Keppra his seizures were a lot harder. So we are three or four days into restarting Keppra and we can tell a difference. In his mood yes, but also in his seizures. There have been no more screaming episodes and for that we are truly thankful.
Please continue to pray for him as we seek seizure freedom once again.
Love to all
Jeff and Allison
Monday, October 5, 2009
Weekend Get-A-Way
This Weekend we were able to escape for a long, LONG, overdue get-a-way. We went to the Marriott Grand Hotel and Spa in beautiful Point Clear Alabama which is right on the coast. We all had the best time and hated to have to leave. A big thanks to the Prattville Wades for letting us crash on the way down. Dawson was very much appreciative for not having to spend 7 hours straight in the car. ( And so were we!)
The first day Dawson seemed a little weary from traveling and didn't do so great but Saturday and Sunday he was a dream and had a blast at the pool and then we went to Gulf Shores for more fun. Grandmom and Granddad were able to go with us and we were so thankful to have them along. Be sure to ask Grandmom about her bicycle accident at the hotel!!!
Dawson traveled back Sunday for 6 hours without so much as a fuss but that 7th and final hour on the road was kinda rough. He was ready to be back home in his own environment. But all in all he and Madison did great and had a blast!!
Seizures are no better yet and we are supposed to meet with the nutritionist at the Neuro office about starting the Modified Atkins Diet. There have been several inquiries about this new testing he is going to have done soon and as we get info on it and what exactly it pin points, we will pass that along to those who are interested. Apparently its some brand new cutting edge testing..
Just last week he was evaluated with Early Intervention for developmental delays. Although we don't have the official report yet I feel as though he passed all test with flying colors. He sat in her chair and did everything that was asked of him. We are still a little concerned with speech though. He does have language skills, and they are improving, but just not at a rate that we are comfortable with. Socially he is a dream, but once again, we are concerned with these fits of anger and rage he is having... Not sure how common it is or even if its seizure/med related.
One min he is fine, the next he is having this anger fit. Of course he has now learned to find a boo boo on his leg and that's what he blames it on.... yeah right kid!!
Anyway, we are doing good and will report as info comes in on some of these issues posted here.
Our love to all and thanks for your prayers
Jeff and Allison
Friday, September 25, 2009
Dr visit
Dawson had a visit with the Neuro the other day. Nothing earth shattering....
There is some new kind of testing they are looking at in China with I.S. Kids who have failed ACTH treatment and then the rest of the things she said about that sounded like this to me.............................
adsjfadj jaldsjfa;ldsjkf jal;sdjfal;dsjf jafoijeanf aojeojjoijef lajlieajnieja oiuoaiejaeita......................
Beacuse I have NO IDEA what she was talking about.
Its not like I'm dumb or anything but when she starts talking about the inner workings of the human brain and all the gigantic medical words, Well I start to kinda just zone out HA!!
So pending insurance approval, we are considering this new testing. Its only a blood draw and there is a lab in Florida that will do the testing.
The good news is that Dawson was MUCH better in the Dr's office than he was last time. We asked the nurses to do weight, ears, and blood pressure LAST instead of first thing because last time it freaked him out really badly and made him act like a crazy person for almost 2 hours.
Aren't we smart????
She also wants us to try the Modified Atkins Diet. Certainly not opposed but we are worried how that is going to be because Mr. Dawson has become a VERY VERY picky eater the past few months. And when he does eat..... yep you guessed it... He LOVES his carbs...
Not much of a meat eater, but loves fruit snacks, bananas, fruits, vanilla wafers, cereal bars, etc, etc. None of these things would be allowed on this diet and Im realistically wondering what is this kid going to eat. I tested the waters tonight with some of those vienna sausages ( the kid friendly kind that Gerber makes.) When he would open his mouth to scream that's when I would seize the moment and stuff the food in.......
He got very upset and just refused to eat the stuff ( not that I blame him) and so round one goes to Dawson.
Soooooo. what to do?? what to do??
Please keep us in your prayers. Seizures have been a little on the rough side lately and with some pretty high numbers. The day we saw his neuro he ended up having close to 100 that day... YUK!
We remain very aware of all the wonderful things God is doing in our lives and strive to stay in the center of HIS will during this time. In return, he continues to shower us with an indescribable peace.
Our love to all
Jeff and Allison
There is some new kind of testing they are looking at in China with I.S. Kids who have failed ACTH treatment and then the rest of the things she said about that sounded like this to me.............................
adsjfadj jaldsjfa;ldsjkf jal;sdjfal;dsjf jafoijeanf aojeojjoijef lajlieajnieja oiuoaiejaeita......................
Beacuse I have NO IDEA what she was talking about.
Its not like I'm dumb or anything but when she starts talking about the inner workings of the human brain and all the gigantic medical words, Well I start to kinda just zone out HA!!
So pending insurance approval, we are considering this new testing. Its only a blood draw and there is a lab in Florida that will do the testing.
The good news is that Dawson was MUCH better in the Dr's office than he was last time. We asked the nurses to do weight, ears, and blood pressure LAST instead of first thing because last time it freaked him out really badly and made him act like a crazy person for almost 2 hours.
Aren't we smart????
She also wants us to try the Modified Atkins Diet. Certainly not opposed but we are worried how that is going to be because Mr. Dawson has become a VERY VERY picky eater the past few months. And when he does eat..... yep you guessed it... He LOVES his carbs...
Not much of a meat eater, but loves fruit snacks, bananas, fruits, vanilla wafers, cereal bars, etc, etc. None of these things would be allowed on this diet and Im realistically wondering what is this kid going to eat. I tested the waters tonight with some of those vienna sausages ( the kid friendly kind that Gerber makes.) When he would open his mouth to scream that's when I would seize the moment and stuff the food in.......
He got very upset and just refused to eat the stuff ( not that I blame him) and so round one goes to Dawson.
Soooooo. what to do?? what to do??
Please keep us in your prayers. Seizures have been a little on the rough side lately and with some pretty high numbers. The day we saw his neuro he ended up having close to 100 that day... YUK!
We remain very aware of all the wonderful things God is doing in our lives and strive to stay in the center of HIS will during this time. In return, he continues to shower us with an indescribable peace.
Our love to all
Jeff and Allison
Sunday, September 20, 2009
Noahs ark
If anybody has one of these started please let me know. I have some kids and a few animals I would like to bring aboard.....
Will it ever stop raining??
So the latest scoop on Dawson is as follows:
Seizures are a little better but no other seizure free days since the last post.
Mood is definitely improved with only a few outburst here and there and they don't last quite as long.
We are completly weened off of Keppra ( thank God)
We have reached Maximum dosage of Lamictal.
Still on the same dosage of Topamax.
And we have a Neuro visit in Huntsville tomorrow. ( Should be interesting and well let everybody know.)
In the meantime Dawson and Madison have become quite the little buddies. I mean, they always have been, but they spend HOURS playing together now and are having the best fun. Its awesome to watch!!
So that's about it for us for now. Like I said, well let everybody in on what his Doctor says when we get back tomorrow.
God bless and we love you all
Jeff and Allison
Will it ever stop raining??
So the latest scoop on Dawson is as follows:
Seizures are a little better but no other seizure free days since the last post.
Mood is definitely improved with only a few outburst here and there and they don't last quite as long.
We are completly weened off of Keppra ( thank God)
We have reached Maximum dosage of Lamictal.
Still on the same dosage of Topamax.
And we have a Neuro visit in Huntsville tomorrow. ( Should be interesting and well let everybody know.)
In the meantime Dawson and Madison have become quite the little buddies. I mean, they always have been, but they spend HOURS playing together now and are having the best fun. Its awesome to watch!!
So that's about it for us for now. Like I said, well let everybody in on what his Doctor says when we get back tomorrow.
God bless and we love you all
Jeff and Allison
Sunday, September 13, 2009
24 hours
Just a little video of Dawson working his game underneath the basket. Looks like a regular chip off the old block huh?????
Yesterday we went more than 24 hours without a seizure!!! That's right, we had no seizure activity yesterday and we couldn't be happier. For those of you who know us, you already know we celebrate EVERYTHING that can be construed as good news. He did wake up this morning and have a cluster, but oh how grateful we are for that short spell without any!!
I try not to get too ahead of myself but I remember that when they stopped last time, they stopped very slowly. One day with zero, then a week later another day, then we would string a couple of days together so on and so forth. Wouldn't it be awesome if yesterday was the the first day of becoming seizure free again.........
Just the thought of it gives me chills....
The downside to yesterday is that Dawson was horrible. Its hard to know whats going on in that little brain at times, but yesterday you could tell he was really struggling. First of all he slept for almost 12 hours. He has NEVER done that. As a matter of fact, I went in at around 10:00 and had to wake him up because he was way past due for his meds. The first part of the day seemed ok but then all of a sudden he would have this terrible outburst. Anger and rage were showing their ugly heads and then he would be ok again for a little while. Then in a blink of an eye, he would have this terrible outburst again. It wasn't like he was having a temper tantrum or anything like that. He would just literally out of the clear blue have a complete meltdown. Hitting, slapping, throwing stuff..... This went on all day until he finally went to bed last night.
So our prayer is for another day seizure free. Just one more would do nicely. ( Hey, I'm trying not to be greedy here.)
Thank you God for the one day we got!!!
And thank you for your prayers.
Our love to all
Jeff and Allison
Sunday, September 6, 2009
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