Just wanted to give a quick update and ask for prayers. Dawson is still doing really good but the seizures are getting more numerous and harder. When the seizures returned weeks ago, they were so mild that there is hardly any way you could see them. Of course WE could, but if you didn't know what to look for you would have missed them completely. Unfortunately now that is not the case. He is back to having seizures almost every time he wakes during the day or night.
I think he can feel them coming because when he wakes up he rolls up onto his stomach in kind of a ball, digs at his eyes, and then he will start to have seizures. This morning he and i woke up at the same time and he was already in " seizure position" and we were kind of laying face to face. It broke my heart as I laid there and watched him have seizure after seizure. I quit counting at 30 because it was just too painful for me to watch. I couldn't help but wonder, What is he going through? Do they hurt? how does it feel? and of course the proverbial WHY?????
So we once again ask for prayer as we seek seizure freedom for this guy. We did talk to his neuro today and right now the order is to continue going up on his Lamictal and stay the same on the Topamax for now.
The good news is that he continues to do really well. He has been in a really great mood all week. He is eating really well. He runs around the house yelling and laughing and talking up a storm. We just really really need these stupid seizures to go away!!!
Our love to all
Jeff and Allison
Thursday, June 18, 2009
Sunday, June 14, 2009
Thursday, June 11, 2009
Test Results
I don't have all the intricate details because Allison is the one who's done all the talking to the neuro, but basically from what I can understand, All of Dawson's test results came back negative for everything they were testing him for. That sounds like good news but actually I personally think its not. If we can find whats causing his seizures then of course they are easier to treat and stop. I have to tell ya, its a little disheartening to be at the same dose of meds that stopped them the first time and for some reason this time that same dosage is not working. Maybe its cause hes older and bigger, maybe maybe maybe.......
I'm running out of maybes....
One of the things he was being tested for was Dravet Syndrome. I guess I'm glad that test came back negative because its one of those " CATASTROPHIC" forms of epilepsy. Don't you love they way they label some of these syndromes. Its like being diagnosed with " TERMINAL" cancer. It just sounds so harsh. Never mind there are varying degrees of these syndromes. Very mild cases all the way up to very severe cases. But none the less we have to use the word catastrophic. I guess that's what scared me so much when I learned he had Infantile Spasms. You do all this reading about this catastrophic form of epilepsy and its so easy to get sacred our of your gourd. What a joy its been to watch Dawson thrive, and grow, and learn, and just be normal even though he has a catastrophic form of epilepsy. And there is still joy!!! Even though the seizures are back he is continuing to thrive, and grow, and learn, and just be normal, and that is nothing more than the goodness and greatness of God. We are hopeful and prayerful that we will once again gain control of the seizures.
This week has been just crazy fun!!! Ashlyn and Katelin are here for two weeks plus we have my niece here from Prattville. We have been out doing stuff every day and I ( and I hope the kids) have had a ball!! We've got some good pics and we will post them in the next day or so.
Please keep the prayers coming and we love you !!
Jeff and Allison
I'm running out of maybes....
One of the things he was being tested for was Dravet Syndrome. I guess I'm glad that test came back negative because its one of those " CATASTROPHIC" forms of epilepsy. Don't you love they way they label some of these syndromes. Its like being diagnosed with " TERMINAL" cancer. It just sounds so harsh. Never mind there are varying degrees of these syndromes. Very mild cases all the way up to very severe cases. But none the less we have to use the word catastrophic. I guess that's what scared me so much when I learned he had Infantile Spasms. You do all this reading about this catastrophic form of epilepsy and its so easy to get sacred our of your gourd. What a joy its been to watch Dawson thrive, and grow, and learn, and just be normal even though he has a catastrophic form of epilepsy. And there is still joy!!! Even though the seizures are back he is continuing to thrive, and grow, and learn, and just be normal, and that is nothing more than the goodness and greatness of God. We are hopeful and prayerful that we will once again gain control of the seizures.
This week has been just crazy fun!!! Ashlyn and Katelin are here for two weeks plus we have my niece here from Prattville. We have been out doing stuff every day and I ( and I hope the kids) have had a ball!! We've got some good pics and we will post them in the next day or so.
Please keep the prayers coming and we love you !!
Jeff and Allison
Tuesday, June 2, 2009
Good news / Bad news
The Good news is, is that Dawson is back to his old self again. It seems that whatever was ailing him has passed. Fever is gone, appetite is back, and his smiling happy go luck self ( that we were really starting to miss) is back. He was working on cutting some of his 2 year molars and either they have broken through or stopped bothering him. There is no way I'm sticking my fingers that far back in his mouth to find out. Id rather poke a wolverine with a stick as to put my fingers between his choppers like that. So thank goodness he is feeling better!!
The bad news is, is that seizures are still around. the past few days its been only in the early morning so we are blessed to have them contained. But none the less, they are here. Looming and lurking around. Right now we have doubled his dose of Topamax from 15 mg morning and night to 30 mg morning and night. I'm not sure what the next move is either. I feel like we will be in a holding pattern until all of those test we had done last week come back.
So here's to a happy Dawson!! Thanks for your prayers and support as we once again kneel in prayer for seizure freedom.
Our love to all
Jeff and Allison
The bad news is, is that seizures are still around. the past few days its been only in the early morning so we are blessed to have them contained. But none the less, they are here. Looming and lurking around. Right now we have doubled his dose of Topamax from 15 mg morning and night to 30 mg morning and night. I'm not sure what the next move is either. I feel like we will be in a holding pattern until all of those test we had done last week come back.
So here's to a happy Dawson!! Thanks for your prayers and support as we once again kneel in prayer for seizure freedom.
Our love to all
Jeff and Allison
Saturday, May 30, 2009
What a crappy week
I still have the feeling like I have been picked up and dumped right on my head. I still can't believe we have been thrust back into the seizure world. Never saw it coming either. Hands down, looking around at the blue skies, then POW!!! right in the kisser.
I for one am glad this week is over. It has been full of nothing but disappointments. Today was supposed to be Dawson's one year seizure free party and wouldn't you know it.... the weather was just beautiful. Perfect for a party. So now, instead of celebrating, we focus all our energy on getting these stupid seizures to stop again. Oh and this whole week, Dawson has been a pill. I mean a super pill!!. Who can blame the kid though.. Lets see, recently, he got shots, got fever, started having seizures, went to the ER in the middle of the night, had an EEG, got poked in both arms for blood draws, started cutting molars, and has green slimy snot constantly running out of his nose......................
I guess I'd be a little fussy too if that was me.
BUT..................... the past couple of days we have seen Dawson start to act like his old self again. His mood is improving and we are very grateful for that. And the seizures....... well there still around. He's having them when he wakes. Not every time, but more often than I can stand.
Even though seizures are around, he continues to do really well. He woke up this morning, called out to Mama. Gave the sign for diaper change and then said... " I want change" pretty impressive huh??? I certainly was.
So were here, strapping on our seizure armor again, getting ready to fight the seizure monster.
DEATH TO THE SEIZURE MONSTER!!!!!!!!!!
Thanks for your thoughts and prayers. We love you
Jeff and Allison
I for one am glad this week is over. It has been full of nothing but disappointments. Today was supposed to be Dawson's one year seizure free party and wouldn't you know it.... the weather was just beautiful. Perfect for a party. So now, instead of celebrating, we focus all our energy on getting these stupid seizures to stop again. Oh and this whole week, Dawson has been a pill. I mean a super pill!!. Who can blame the kid though.. Lets see, recently, he got shots, got fever, started having seizures, went to the ER in the middle of the night, had an EEG, got poked in both arms for blood draws, started cutting molars, and has green slimy snot constantly running out of his nose......................
I guess I'd be a little fussy too if that was me.
BUT..................... the past couple of days we have seen Dawson start to act like his old self again. His mood is improving and we are very grateful for that. And the seizures....... well there still around. He's having them when he wakes. Not every time, but more often than I can stand.
Even though seizures are around, he continues to do really well. He woke up this morning, called out to Mama. Gave the sign for diaper change and then said... " I want change" pretty impressive huh??? I certainly was.
So were here, strapping on our seizure armor again, getting ready to fight the seizure monster.
DEATH TO THE SEIZURE MONSTER!!!!!!!!!!
Thanks for your thoughts and prayers. We love you
Jeff and Allison
Thursday, May 28, 2009
A better afternoon
Dawson has been better this afternoon after he woke from his nap, without seizures, I think. I hate that the seizures are so mild that I sometimes am not sure if it is a seizure or just a jerk or twitch or something. So maybe he hasn't had any today, not anything that is definite anyway. He was a little fussy and clingy this morning but was been entertaining himself this afternoon. Guess what else mommy found today, a new molar in working its way through. We suspected he was trying to cut teeth, so today when I checked I felt a very tiny edge if his right upper molar. Guess that explains some of his fussiness and low grade fever he has had off and on. He has also started having a runny nose since yesterday, it is just constantly running...poor baby!
Well, good time over, fussy boy just walked in! Hope everyone has a great weekend and keep your fingers crossed for no seizures!!!
Well, good time over, fussy boy just walked in! Hope everyone has a great weekend and keep your fingers crossed for no seizures!!!
Wednesday, May 27, 2009
Neuro Visit
We have the best Neuro!! The nurse called yesterday as soon as the office opened asking if we could be there at 11:30. The lady who does the EEG, Marie, was at her other job but agreed to come on her lunch break for Dawson. How awesome is that! Thank you Marie!! Dawson did fine, he cried during the hook up but then went fast asleep when she was done. Thats one other thing about Marie, she is super fast at hooking him up....she is GREAT!!!! Anyway, the EEG showed some abnormal activity on the right side. When he was having seizures before it was on both sides, so it looked better than the other EEGs.
When we were talking afterwards, she said that there has been some recent developments in the last few months in genetic testing for causes of epilepsy. She thinks that with possibly linking it to the vaccines and high fever, that he may have Dravert Syndrome, which is a mutation in the SCN1A gene. This genes purpose is to regulate function of sodium ion channels in neuron cells. which is important for maintenance of the healthy rhythm of electrical activity in the brain. So when it does not function properly it lowers the seizure threshold. Since the vaccine contains sodium and cause the high fever...it is a possible link. Now if you go looking into Dravert Syndrome, there are some really bad cases so don't get all worked up. She told us that there is a wide spectrum as far as the severity of the disorder and Dawson would be on the lighter end of the spectrum. When reading the brochure it seems unlikely that this is what he has because it is so catastrophic, so who knows. There is also about 3 pages of other genetic things to test for, so in order to do the tests, they have to have blood. We had to go to an outpatient Medical Mall and wait what seemed like forever to get called back. Poor Dawson got stuck twice because the first arm didn't work. They took two big vials and two little vials of blood from the little guy which equals to about 30 mls of blood.
He was really sleepy and irritable for the rest of the day. He would have 30 minutes here and there in a good mood, but the rest of the time he was clingy or fussing.
We are scheduled to go back in 4 weeks and hopefully the test results will be back. Until we know more the immunizations are on hold once again which is fine by us!!
So, that is where we are, hoping that new testing may give us some answers.
Please keep Dawson in your prayers. We love and appreciate all of you!
Allison & Jeff
P.S. It took me over 30 minutes to do this post, hence why I don't do them much because of all the starting and stopping. Mom is always needed for something. Also, Dawson woke without any seizures this morning...WhooHoo!!!
When we were talking afterwards, she said that there has been some recent developments in the last few months in genetic testing for causes of epilepsy. She thinks that with possibly linking it to the vaccines and high fever, that he may have Dravert Syndrome, which is a mutation in the SCN1A gene. This genes purpose is to regulate function of sodium ion channels in neuron cells. which is important for maintenance of the healthy rhythm of electrical activity in the brain. So when it does not function properly it lowers the seizure threshold. Since the vaccine contains sodium and cause the high fever...it is a possible link. Now if you go looking into Dravert Syndrome, there are some really bad cases so don't get all worked up. She told us that there is a wide spectrum as far as the severity of the disorder and Dawson would be on the lighter end of the spectrum. When reading the brochure it seems unlikely that this is what he has because it is so catastrophic, so who knows. There is also about 3 pages of other genetic things to test for, so in order to do the tests, they have to have blood. We had to go to an outpatient Medical Mall and wait what seemed like forever to get called back. Poor Dawson got stuck twice because the first arm didn't work. They took two big vials and two little vials of blood from the little guy which equals to about 30 mls of blood.
He was really sleepy and irritable for the rest of the day. He would have 30 minutes here and there in a good mood, but the rest of the time he was clingy or fussing.
We are scheduled to go back in 4 weeks and hopefully the test results will be back. Until we know more the immunizations are on hold once again which is fine by us!!
So, that is where we are, hoping that new testing may give us some answers.
Please keep Dawson in your prayers. We love and appreciate all of you!
Allison & Jeff
P.S. It took me over 30 minutes to do this post, hence why I don't do them much because of all the starting and stopping. Mom is always needed for something. Also, Dawson woke without any seizures this morning...WhooHoo!!!
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