Just what the Dr. Ordered... A few days of normalcy.
Dawson's seizure have been better. And by better I mean no big gigantic seizures. Hes still having his usual spasms type seizures and even those have been a wee bit better as of late.
His mood is doing pretty good, as a matter of fact, its been much improved over the last few days as well. So we are relishing in these good days because we know how quickly things change when your dealing with seizures.
We were even able to get outside amongst the beautiful maple trees that are in full color and snap some pics of the kiddos without even as much as a fuss.... Pretty amazing.
So while the waters are calm we rest..
AND...
We thank God for the past few days of smooth sailing
We love you
Jeff and Allison
Wednesday, October 28, 2009
Sunday, October 25, 2009
Some pics of recent hospital stay and some more pics from this weekend.
Dawson is still a little under the weather. Off and on again fever and he has a double ear infection with a cough accompanied by gobs of snot.. Hey it is what it is people.
Hes hanging in there pretty good but you can tell he doesn't feel all that well. I think hes just glad to be home.
Madison and Dawson are Roll Tide kids and I couldnt be prouder. Sorry Grampy, I know you had high hopes of them growing up Tennessee fans but I just can't let that happen.
Enjoy the pics
Friday, October 23, 2009
Like the wind
We have to be as flexible as the wind blows these days. On minute were fine, the next were not, then were home, then in Birmingham doing all this stuff...
the lastest wind dirction has brought us back home thank goodness.
The reason why is that first and formost, they want to see this new seizure type on EEG.
He has had two episodes in a two week time span so the odds of catching one just random is pretty slim. We are going back November 9th for 5 days where they will start to ween Dawson off of his meds and force the new seizure monster to rear his ugly head. Yeah thats right, We want to see what you look like so we will better know how to kill you!!
( obviously the hospital stay and the drive home has made me violent)
Also, Based on what they caught the last two days while we were there, It looks as though most of his seizure activity is coming off the right side of the brain. Soooooo With that being said, we will first thing when we get down there is do an MRI ( he hasn't had one since he was 3 months old) and they will also do a PET scan to see if maybe his seizures are coming from a centralized location and could possibly be a candidate for surgery........ Trying very hard not to go there in my mind yet because there is way too much unknown. Well cross that bridge when or when not we get there.
So we are home and the top priority for us tonight is rest. Dawson picked up some bug in the hospital because he is running a fever and coughing and green snot. So hopefully some Motrin and a good nights sleep will help cure that.
Thank you for all your prayers over the past couple of days. Continue to think of Dawson over the next coming weeks. We are kinda dreading the next visit although we know it will provide us with a lot of answered questions, and to a parent whos kid suffers from seizures, answers are as good as gold!!
We love you all
Jeff and Allison
the lastest wind dirction has brought us back home thank goodness.
The reason why is that first and formost, they want to see this new seizure type on EEG.
He has had two episodes in a two week time span so the odds of catching one just random is pretty slim. We are going back November 9th for 5 days where they will start to ween Dawson off of his meds and force the new seizure monster to rear his ugly head. Yeah thats right, We want to see what you look like so we will better know how to kill you!!
( obviously the hospital stay and the drive home has made me violent)
Also, Based on what they caught the last two days while we were there, It looks as though most of his seizure activity is coming off the right side of the brain. Soooooo With that being said, we will first thing when we get down there is do an MRI ( he hasn't had one since he was 3 months old) and they will also do a PET scan to see if maybe his seizures are coming from a centralized location and could possibly be a candidate for surgery........ Trying very hard not to go there in my mind yet because there is way too much unknown. Well cross that bridge when or when not we get there.
So we are home and the top priority for us tonight is rest. Dawson picked up some bug in the hospital because he is running a fever and coughing and green snot. So hopefully some Motrin and a good nights sleep will help cure that.
Thank you for all your prayers over the past couple of days. Continue to think of Dawson over the next coming weeks. We are kinda dreading the next visit although we know it will provide us with a lot of answered questions, and to a parent whos kid suffers from seizures, answers are as good as gold!!
We love you all
Jeff and Allison
Mornin Sunshine ( yeah Right)
Last night was a rough one. I dont know because I took the cowards way out and got a pretty good nights sleep at the Ronald McDonald House a couple of blocks over.. I came over early this morning and let her go over for some MUCH needed sleep. She said he did not sleep well at all.
Lots of wiggling around, twitches and stuff like that. Not necessarily seizure twitches but just weird stuff that kept him up all night. He is asleep right now and I hope he stays that way for a while. He NEEDS sleep. I have already run off two people this morning wanting to check vitals and stuff like that. There is no way im letting them wake him up until he is ready.
Hopefully today will be a better day. Thank you Prattville Wades for coming to visit. It was so good to see you guys!!! And thank you Carroll for your visits and all the stuff you brought us. You are truly a God send and a great friend!!
Looks like Dawson is starting to stir a little. Ill post again later
Jeff
Thursday, October 22, 2009
All Hooked Up
They FINALLY came in around 1:00 and got him all hooked up. He had JUST finally fallen asleep when they showed up. Bunch of meanies
He is back asleep now and resting comfortably. I don't know a lot about these things but im watching his EEG while hes sleeping and it looks like an absolute mess.
I don't want him to have another one of those episodes, but in a way, while were here and all hooked up, i kinda do so we can at least have some resolve.
Well update again later.
Jeff
Rushed to UAB hospital
Yesterday afternoon around 2:00 Dawson had another really bad seizure. It presented itself kinda like the episode he had a couple of weekends ago. It hapened while he was at granny and grampy's house. He did quit breathing for a short while and had episodes of being limp along with being stiff and jerky at times. Afterwards he was really really sleepy of course and when he would rouse he was incredibly fussy and then would go right back to sleep. The concerning thing about all of this is that five hours later he was still very letharic. I called Dr. Bebin and she wanted him taken to our local hospital to make sure he was stable and then she wanted him transported by ambulance because she was concerned about him having another seizure on the way. And instead of waiting two weeks for our EEG here, she wants it done NOW. soooooo
Off to our local hospital Allison and Dawson went while I stayed behind and started packing for what is turnin out to be a long stay here.
At our local hospital he finally came back around and started acting like his old self again so we made the decision to drive him down here ourselves. I'm not really sure how much a 2 hour ambulance ride costs but I'm pretty sure I cant afford it. ( You guys know that we would have done that if it were necessary right??)
We safely arrived at UAB Children's at about 11:00 last night and had to be admitted through the ER which was a disastrous experience. We got the 24 year old male nurse who says to us...
" Sooooooo what brings you guys in tonight???" I thought OHHH BOY here we go. This is going to be a long evening. and as it turns out I was right.
We finally got admitted and up to our room at 2:30 AM. No bed for Dawson and everybody whos anybody knows that Dawson sleeps in the bed with his Mommy and there are no exceptions. Unfortunately it looks as though protocol will over rule us on this one and we are stuck with a crib and a very uncomfortable chair to sleep in for the time being.
So this morning they will come and do the hookup for a who knows how long video EEG. We are calling on our prayer warriors to please hit your knees and pray for Dawson. We hope this EEG will give light to these new developments and how to treat them. We will keep everybody posted throughout the day as things happen.
Thank you for your prayers.
We are at UAB Childrens hospital in Birmingham room 403 and will be moving to room 428 later on today if anybody needs to get ahold of us
We love you all
Jeff and Allison
Sunday, October 18, 2009
Smoother Sailing
Once again, we are kinda back to where we were before last Saturday. I still find myself on pins and needles ( Especially when he wakes up from naps) because I'm so afraid hes going to have another one of those seizure episodes that sent emergency vehicles screaming to our house. It gets a little better with every day that passes but I don't think there will come a day that I wont think about that day. I guess in a way its kinda scarred me.
BUT......
Things have returned to a more normal pace and predictable seizure patterns. ( Although, Friday he had none.) Mood seems to be stabilizing a bit but we are still having some issues with hitting, biting, and hair pulling. We are using some " Behavior modification techniques" because weather or not its seizure or med related or whatever, he needs to know that kind of behavior is just not acceptable. Besides that, the kid is getting REALLY strong now and Madison, although fast, is pretty fragile.
I guess I need to quit harping on the mood thing so much because it kinda paints an inaccurate picture of Dawson. See, the other side of Dawson is an amazing one. He is a very tender hearted and sweet kid the other 95% of the time and we need to spend more time talking about that Dawson.
He is incredibly funny, social, and despite being plagued by numerous seizures each day he continues to thrive. The seizures started at 2 months old and they have yet to slow him down one bit. He talks, plays, runs, colors, loves to be read to, kicks and throws balls. He understands and follows directions when given simple tasks to do........
The thing is, statistically speaking, he is not supposed to be doing any of this stuff because Infantile Spasms is a Catastrophic form of epilepsy.. BUUUUT nobody has told Dawson this yet because he continues on everyday life as though nothing is wrong. And the fact is, If you were to watch Dawson for yourself, you would Never know anything was wrong with him at all.
It is a fact that Dawson has been touched by Jehovah Rapha ( The God who heals you) because to date, and despite the fact he has suffered thousands of seizures, he is as normal as any just turned two year old you would ever meet. And THAT is a miracle!!! and THAT is what we need be focusing more on.
I was going back and reading some of the last few posts and it kinda hit me that I'm not really giving Dawson a fair shake here. The things we deal with are real and concerning, BUT those things are not what makes Dawson Dawson. They are side effects of a small brain filled with many different kinds of seizure meds. The real Dawson is the big blue eyed kid standing at the refrigerator door knocking on it and saying " knock knock cheese" because he wants a cheese stick and then gives a big grin says " Thank you" afterwards..
Its so easy for me to get sucked into all the horrible and negative things that accompany a two year old riddled with seizures but its time I stopped for a moment and recognized, and shared with you, how truly BLESSED this family has been.
Thanks be to God for he is Great and Mighty!!
B.T.W Melatonin is awesome. A little shot and Dawson is out like a light.. Goodnight little buddy We love you
Jeff
BUT......
Things have returned to a more normal pace and predictable seizure patterns. ( Although, Friday he had none.) Mood seems to be stabilizing a bit but we are still having some issues with hitting, biting, and hair pulling. We are using some " Behavior modification techniques" because weather or not its seizure or med related or whatever, he needs to know that kind of behavior is just not acceptable. Besides that, the kid is getting REALLY strong now and Madison, although fast, is pretty fragile.
I guess I need to quit harping on the mood thing so much because it kinda paints an inaccurate picture of Dawson. See, the other side of Dawson is an amazing one. He is a very tender hearted and sweet kid the other 95% of the time and we need to spend more time talking about that Dawson.
He is incredibly funny, social, and despite being plagued by numerous seizures each day he continues to thrive. The seizures started at 2 months old and they have yet to slow him down one bit. He talks, plays, runs, colors, loves to be read to, kicks and throws balls. He understands and follows directions when given simple tasks to do........
The thing is, statistically speaking, he is not supposed to be doing any of this stuff because Infantile Spasms is a Catastrophic form of epilepsy.. BUUUUT nobody has told Dawson this yet because he continues on everyday life as though nothing is wrong. And the fact is, If you were to watch Dawson for yourself, you would Never know anything was wrong with him at all.
It is a fact that Dawson has been touched by Jehovah Rapha ( The God who heals you) because to date, and despite the fact he has suffered thousands of seizures, he is as normal as any just turned two year old you would ever meet. And THAT is a miracle!!! and THAT is what we need be focusing more on.
I was going back and reading some of the last few posts and it kinda hit me that I'm not really giving Dawson a fair shake here. The things we deal with are real and concerning, BUT those things are not what makes Dawson Dawson. They are side effects of a small brain filled with many different kinds of seizure meds. The real Dawson is the big blue eyed kid standing at the refrigerator door knocking on it and saying " knock knock cheese" because he wants a cheese stick and then gives a big grin says " Thank you" afterwards..
Its so easy for me to get sucked into all the horrible and negative things that accompany a two year old riddled with seizures but its time I stopped for a moment and recognized, and shared with you, how truly BLESSED this family has been.
Thanks be to God for he is Great and Mighty!!
B.T.W Melatonin is awesome. A little shot and Dawson is out like a light.. Goodnight little buddy We love you
Jeff
Friday, October 16, 2009
Calmer Days
The past few days have been much calmer comparatively speaking. Dawson has settled back into a more normal seizure routine that doesn't involve those awful things we saw last week.
Sleep has been one of the issues we are dealing with as of late. Dawson used to be a horrible sleeper but then got into a pretty good routine of sleeping. Going to bed at a decent hour and for the most part he was sleeping through the night ( In our bed of course)
But seems now that he just can't quite get himself settled into a deep enough sleep. I think it has a lot to do with seizures myself. Well not necessarily seizures, but brain activity while trying to sleep would probably be more correct to say. At any rate, Its a lot like sleeping with a tumbleweed. I usually get the feet end of the business which means I now wake in the mornings with my back and kidneys aching from being mule kicked all night long. The past couple of night I have made our sectional my bed, and my back feels MUCH better in the morning. Imagine that.
Dawson's mood has been a little better the past couple of days. The evenings can get kinda iffy at times especially when he gets sleepy. We have decided to go back and give the Melatonin another try for a while to see if that wont help solve some of the sleeping issues.
Your prayers and support mean the world to us and praying for our son is the greatest thing you could EVER do for our family. Thank you!!
Our love to all
Jeff and Allison
Sleep has been one of the issues we are dealing with as of late. Dawson used to be a horrible sleeper but then got into a pretty good routine of sleeping. Going to bed at a decent hour and for the most part he was sleeping through the night ( In our bed of course)
But seems now that he just can't quite get himself settled into a deep enough sleep. I think it has a lot to do with seizures myself. Well not necessarily seizures, but brain activity while trying to sleep would probably be more correct to say. At any rate, Its a lot like sleeping with a tumbleweed. I usually get the feet end of the business which means I now wake in the mornings with my back and kidneys aching from being mule kicked all night long. The past couple of night I have made our sectional my bed, and my back feels MUCH better in the morning. Imagine that.
Dawson's mood has been a little better the past couple of days. The evenings can get kinda iffy at times especially when he gets sleepy. We have decided to go back and give the Melatonin another try for a while to see if that wont help solve some of the sleeping issues.
Your prayers and support mean the world to us and praying for our son is the greatest thing you could EVER do for our family. Thank you!!
Our love to all
Jeff and Allison
Tuesday, October 13, 2009
Hospital Bound
Lots of info to post this evening. Ill make it as brief as possible...
We were able to speak at length with Dawson's Neuro yesterday evening over the phone. She is such an awesome Doctor and purposely waited until after office hours to call us so she could take all the time needed to help answer a lot of questions.
Of course there is no way to know right now what transpired in his brain to make this new seizure type come out but I think she thinks its more of an age thing more than anything. Dawson is now 2 and she said more times than not, As they grow out of the Infantile Spasms, a new seizure type will develop. If this is going to happen, it usually happens between 2 and 3 years of age. We have made a few med changes and she said that its a possibility that we crossed that sacred seizure threshold allowing him to have a breakthrough seizure.
The plan????
November 9th we will head to UAB Children's Hospital for a ( get this....) 5 day video EEG!!
HOORAY we just love those things... And theres nothing like being in the hospital room with a two year old who is not sick... See, when kids are sick they don't mind just laying there in bed being good. Dawson is a mover and a shaker. Doesn't like being pinned down and I just cant imagine how we will survive 5 days in that hospital.
She did say that its a possibility that we will go ahead and do the Keto ( and/or) modified Atkins while there. Either way she wants him in the hospital when we do it so he can be closely watched. She also wanted him off of Topamax before we started the diet to lessen the chance of kidney stones while, but that also conflicts with the fact that coming down off of the Topamax could possibly be part of those awful seizures we saw the other day.
Its all very confusing but we are hopeful that the hospital stay will provide some answers for us. She also said that if they get what they are looking for on the EEG early then we could go home earlier but to go ahead and plan on staying the full week. So that's the plan for now anyway.
To address some questions......
Dawson has been on a B6 therapy before while on Keppra and it just didn't seem to do that much for him. Maybe we just didn't stick with it long enough for it to make a difference. Right now he is on a very very low dose of Kepprage but even at that low dose I can see a difference in how he acts when he gets upset about something.
Dawson did not, and under doctors advice, will not be getting any flu shots or any other shots as far as that goes. It is MY opinion ( among others as well) that these shots are the source of our problems. Once again, I am NOT anti-vaccination... I am only anti-vaccination when it comes to Dawson.
Follow the numbers here for a min...
Days after getting his two month shots he starts having seizures...
We finally find seizure freedom and he goes 360 days straight with No seizure activity and a clean EEG.
He then goes to the Doctors office and gets two shots because everybody thought it was safe to do them one or two at a time.
30 hours after those shots, and after 360 days seizure free, he is having seizures again and here we are.
So you do the math ,and then try to convince me that shots have nothing to do with this....
So no more shots for Mr. Dawson!!! EVER
Ok yeah, its a pretty sensitive subject for me. sorry
The good news............
We haven't seen any more of those seizures since Saturday evening. Just his normal clusters of spasms ( not that we any more happy about that) Its just that those others were So hard to watch. Absolutely heart breaking and its something that is etched in my brain forever.
Keep Dawson in your prayers as we muddle our way through the next few weeks. It should be interesting.
Jeff
We were able to speak at length with Dawson's Neuro yesterday evening over the phone. She is such an awesome Doctor and purposely waited until after office hours to call us so she could take all the time needed to help answer a lot of questions.
Of course there is no way to know right now what transpired in his brain to make this new seizure type come out but I think she thinks its more of an age thing more than anything. Dawson is now 2 and she said more times than not, As they grow out of the Infantile Spasms, a new seizure type will develop. If this is going to happen, it usually happens between 2 and 3 years of age. We have made a few med changes and she said that its a possibility that we crossed that sacred seizure threshold allowing him to have a breakthrough seizure.
The plan????
November 9th we will head to UAB Children's Hospital for a ( get this....) 5 day video EEG!!
HOORAY we just love those things... And theres nothing like being in the hospital room with a two year old who is not sick... See, when kids are sick they don't mind just laying there in bed being good. Dawson is a mover and a shaker. Doesn't like being pinned down and I just cant imagine how we will survive 5 days in that hospital.
She did say that its a possibility that we will go ahead and do the Keto ( and/or) modified Atkins while there. Either way she wants him in the hospital when we do it so he can be closely watched. She also wanted him off of Topamax before we started the diet to lessen the chance of kidney stones while, but that also conflicts with the fact that coming down off of the Topamax could possibly be part of those awful seizures we saw the other day.
Its all very confusing but we are hopeful that the hospital stay will provide some answers for us. She also said that if they get what they are looking for on the EEG early then we could go home earlier but to go ahead and plan on staying the full week. So that's the plan for now anyway.
To address some questions......
Dawson has been on a B6 therapy before while on Keppra and it just didn't seem to do that much for him. Maybe we just didn't stick with it long enough for it to make a difference. Right now he is on a very very low dose of Kepprage but even at that low dose I can see a difference in how he acts when he gets upset about something.
Dawson did not, and under doctors advice, will not be getting any flu shots or any other shots as far as that goes. It is MY opinion ( among others as well) that these shots are the source of our problems. Once again, I am NOT anti-vaccination... I am only anti-vaccination when it comes to Dawson.
Follow the numbers here for a min...
Days after getting his two month shots he starts having seizures...
We finally find seizure freedom and he goes 360 days straight with No seizure activity and a clean EEG.
He then goes to the Doctors office and gets two shots because everybody thought it was safe to do them one or two at a time.
30 hours after those shots, and after 360 days seizure free, he is having seizures again and here we are.
So you do the math ,and then try to convince me that shots have nothing to do with this....
So no more shots for Mr. Dawson!!! EVER
Ok yeah, its a pretty sensitive subject for me. sorry
The good news............
We haven't seen any more of those seizures since Saturday evening. Just his normal clusters of spasms ( not that we any more happy about that) Its just that those others were So hard to watch. Absolutely heart breaking and its something that is etched in my brain forever.
Keep Dawson in your prayers as we muddle our way through the next few weeks. It should be interesting.
Jeff
Monday, October 12, 2009
Just when we thought it couldnt get any worse...
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
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
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
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