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
Saturday, May 30, 2009
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!!!
Monday, May 25, 2009
Seizure Update
Ok, so we've kinda gathered ourselves a bit. We've been going through all the emotions that one would suspect we would go through.. Crying, sadness, anger, uncertainty. But now we are once again finding ourselves completely consumed in faith. After all, at the end of the day, if you don't have faith.... well you have nothing. I know that faith will once again see us through this..
<<<<<>>>>
Last Wednesday, he went in for some shots. One of the shots was prevnar http://www.drugs.com/prevnar.html
My research about Prevnar has shown that that it can cause seizures. Its rare but hey, so is Infantile Spasms. Much of my readings have also shown me it is not advised to give to children who have a history of seizures. 30 hours after receiving this injection, my son, who was one week away from being seizure free for one year started having seizures. And shortly after that the fever started. Saturday night his fever went up to 104.5 and we went for a little visit to our local ER in the middle of the night. ( yes it was me who freaked out and insisted that he go)
So the question is how did this drug make its way into Dawson?? Well, they injected it into him without so much as a word to us about what could happen, what might happen, what its used for, or anything. I have said it before but it bears repeating. I am NOT against immunizations... I am against the way they are done. I am against injecting a two month old baby with a concoction of different live viruses for the sake of big business and even bigger money. Yes, immunizations are a huge business. Don't believe me?? then do your own research.
So while we are at the ER, the ER physician called the DR on call at the clinic where Dawson got his shots from. ( Dawson's regular Pediatrician was not there when he got his shots, and he was not on call that night either.) The Doctor on call told the ER doctor that he doubted very seriously that the Prevnar caused the seizures. Instead he said that he must have picked up some kind of virus in the clinic ( we were at the WELL clinic by the way) and that caused his fever and seizures..... So I'm thinking, here we go with the big cover up. Sweep it under the rug and pretend it never happened. Now I know this can be debated 1000 different ways and even I see both sides of the argument, but there is no way anybody can convince me that receiving Prevnar did not make him sick and have seizures again. I just know in my heart that it did.
As a parent, You, I, and us have the right to know what is being put in the bodies of our kids. I have made a promise that he will NEVER be injected Ever again without my knowing exactly what it is and what the potential side effects can be. I get the fact that you can't have every parent running around deciding what shots their kids get and what shots they don't. Immunizations are a good and wonderful thing. But when your kid suffers from a specific disorder, and what you are injecting them with has the potential to make that disorder worse, then we have the right to know!!
<<<<>>>>>
Today, Dawson is doing Ok. Yesterday he had no seizures but he woke up this morning and had a cluster of 20 something. The fever is mostly gone but yesterday evening and this evening he has been SUPER fussy. He has not been himself at all the past few days. Our happy little boy is not so happy right now. Hopefully very soon he will get back to his old happy self.
The seizures, so far, have not effected him mentally. He is still doing all the great and wonderful things he has done before. Running, playing, and talking. Yesterday he said another little sentence. " I want bite bite" that is so awesome.
We will talk to his Neuro tomorrow and hopefully get an appointment to see her in the next day or so. Thanks for all the supportive comments. We once again find ourselves searching for comfort and we find that comfort in God, our family, and all our I.S friends. We love you all more than you can ever know.
Jeff and Allison
<<<<<>>>>
Last Wednesday, he went in for some shots. One of the shots was prevnar http://www.drugs.com/prevnar.html
My research about Prevnar has shown that that it can cause seizures. Its rare but hey, so is Infantile Spasms. Much of my readings have also shown me it is not advised to give to children who have a history of seizures. 30 hours after receiving this injection, my son, who was one week away from being seizure free for one year started having seizures. And shortly after that the fever started. Saturday night his fever went up to 104.5 and we went for a little visit to our local ER in the middle of the night. ( yes it was me who freaked out and insisted that he go)
So the question is how did this drug make its way into Dawson?? Well, they injected it into him without so much as a word to us about what could happen, what might happen, what its used for, or anything. I have said it before but it bears repeating. I am NOT against immunizations... I am against the way they are done. I am against injecting a two month old baby with a concoction of different live viruses for the sake of big business and even bigger money. Yes, immunizations are a huge business. Don't believe me?? then do your own research.
So while we are at the ER, the ER physician called the DR on call at the clinic where Dawson got his shots from. ( Dawson's regular Pediatrician was not there when he got his shots, and he was not on call that night either.) The Doctor on call told the ER doctor that he doubted very seriously that the Prevnar caused the seizures. Instead he said that he must have picked up some kind of virus in the clinic ( we were at the WELL clinic by the way) and that caused his fever and seizures..... So I'm thinking, here we go with the big cover up. Sweep it under the rug and pretend it never happened. Now I know this can be debated 1000 different ways and even I see both sides of the argument, but there is no way anybody can convince me that receiving Prevnar did not make him sick and have seizures again. I just know in my heart that it did.
As a parent, You, I, and us have the right to know what is being put in the bodies of our kids. I have made a promise that he will NEVER be injected Ever again without my knowing exactly what it is and what the potential side effects can be. I get the fact that you can't have every parent running around deciding what shots their kids get and what shots they don't. Immunizations are a good and wonderful thing. But when your kid suffers from a specific disorder, and what you are injecting them with has the potential to make that disorder worse, then we have the right to know!!
<<<<>>>>>
Today, Dawson is doing Ok. Yesterday he had no seizures but he woke up this morning and had a cluster of 20 something. The fever is mostly gone but yesterday evening and this evening he has been SUPER fussy. He has not been himself at all the past few days. Our happy little boy is not so happy right now. Hopefully very soon he will get back to his old happy self.
The seizures, so far, have not effected him mentally. He is still doing all the great and wonderful things he has done before. Running, playing, and talking. Yesterday he said another little sentence. " I want bite bite" that is so awesome.
We will talk to his Neuro tomorrow and hopefully get an appointment to see her in the next day or so. Thanks for all the supportive comments. We once again find ourselves searching for comfort and we find that comfort in God, our family, and all our I.S friends. We love you all more than you can ever know.
Jeff and Allison
Saturday, May 23, 2009
Heavy Hearts
It is with a heavy heart that I inform everyone that the one year seizure free party is canceled. It has only been 356 without a seizure, now we start over. The seizures have returned. They began Thursday night, with what looked like hiccups. He had fallen asleep on the couch and woken up, so I took him back to bed and was laying with him when it began. At first I thought maybe he was straining for a bm, but it continued and was rhythmic. I panicked, turned on the light and shouted for Jeff. He came in and we watched. "Its just hiccups", Jeff said. I agreed it looked like hiccups, just without the noise. So we told ourselves that is what it was. I told my dad the next day to watch him, just because I was paranoid....what if. He had a rough day, really fussy, but no "hiccups". Last night he had a fever and was really restless during sleep. He woke around 1:45 and the "hiccups" began again. Not too many, but I woke Jeff anyway, which I am not sure if he even really woke up. "Don't worry, its just hiccups", okay I tell myself but if it happens again, thats it, Im calling the Dr. Jeff wakes me around 5:30, "Ali, its not hiccups, he is having seizures." My heart drops... I knew it, we didn't want to believe it, but I knew it. We are just a week away from one year and this happens. Jeff is convinced it has something to do with the shots he received Wednesday afternoon. Shots, seizures, fever...not a coincidence. Me, I don't know. We have spoken to the Neuro this morning and we are doubling the dose of Topamax and she wants to call in Klonopin for him next week. We are also to call the office and make an appointment for next week and bring with us a copy of his immunization records. So, here we go again on this seizure roller coaster. He is still doing great, in spite of the return. No difference so far. He actually said his first sentence yesterday at my mom and dad's house. He had fallen down or something and said, "I want my momma!" He is such a momma's boy right now, I can't say that I mind.
So once again, we ask for your prayers. We don't understand why the seizures have returned, but have already handed it over to the Lord and trust in Him.
I hate to post this, it somehow makes it more true when you start telling people. We appreciate everyone's support and prayers. We love you all.
Allison & Jeff
So once again, we ask for your prayers. We don't understand why the seizures have returned, but have already handed it over to the Lord and trust in Him.
I hate to post this, it somehow makes it more true when you start telling people. We appreciate everyone's support and prayers. We love you all.
Allison & Jeff
Friday, May 8, 2009
Friday, May 1, 2009
Trucking along
The past few weeks we have been absolutely busy as bee just enjoying life. The weather, other than today's storms, has been just fantastic and it has allowed us to get outdoors to take care of some much needed things. The grass is growing like crazy and its been very time consuming trying to keep 7 acres mowed. The garden has been planted and with the help of Dad, we are growing corn, okra, tomatoes, carrots, cucumbers, zucchini, squash, sunflowers, watermelon, and cantaloupe.
The garden is also time consuming but I LOVE IT and I enjoy being out there watching stuff we planted grow. On top of these things, Allison and I just recently spent the entire day planting flower beds in front of the house.
We went and bought the kids on of those John Deer Gator ride on things ( pics to come) to help keep them engaged while outdoors. Madison loves it and Dawson hates it ( go figure) The first time they rode in it Madison was driving and Dawson was in his seat beside her. She took off and he kinda slipped out of the side and she ran over him. I can't imaging why he doesnt like riding in that thing anymome.... hmmmm
Dawson is doing just so awesome. He continues to escape any side effects of having Infantile Spasms. He is just a normal, happy, healthy kid with no seizures. God certainly has been so good to us!!! I find myself thanking him multiple times daily for healing Dawson. How do you say thanks for something like that??
Katelin continues to do really good with her diabetes. She is busy playing softball this year and I am just so proud of how well she is playing. I find myself really looking forward to her games.
So once again I apologize for not posting for so long. We have been just been so busy these days. At the end of the day exhaustion sets in and that's all she wrote for us.
We are really looking forward to Dawson's one year seizure free party at the end of this month. We cant wait to celebrate this wonderful occasion.
I know there are many people who come across this blog,and I also know there are many of our friends and family who read this as well. So this is your open invitation to attend. We want as many people who lifted Dawson up in prayer during that time to come and attend. Right now we are kinda leaving it as a day long party. A sort of " come when you can and leave when you have to " event, with the food being focused around lunch time. We wont be sending out formal invitations, as there are literally hundreds of people who we would want to send them to,and that's just not possible to do. We would love to have an idea of how many people to expect, so if you are able to come Saturday May 30th please Email us and let us know you are attending. You may call or text as well if you already have our cell phone numbers. We hope you will be able to come and celebrate this miracle with us.
We love all of you so much and we hope to see you at the end of the month!!
Jeff and Allison
The garden is also time consuming but I LOVE IT and I enjoy being out there watching stuff we planted grow. On top of these things, Allison and I just recently spent the entire day planting flower beds in front of the house.
We went and bought the kids on of those John Deer Gator ride on things ( pics to come) to help keep them engaged while outdoors. Madison loves it and Dawson hates it ( go figure) The first time they rode in it Madison was driving and Dawson was in his seat beside her. She took off and he kinda slipped out of the side and she ran over him. I can't imaging why he doesnt like riding in that thing anymome.... hmmmm
Dawson is doing just so awesome. He continues to escape any side effects of having Infantile Spasms. He is just a normal, happy, healthy kid with no seizures. God certainly has been so good to us!!! I find myself thanking him multiple times daily for healing Dawson. How do you say thanks for something like that??
Katelin continues to do really good with her diabetes. She is busy playing softball this year and I am just so proud of how well she is playing. I find myself really looking forward to her games.
So once again I apologize for not posting for so long. We have been just been so busy these days. At the end of the day exhaustion sets in and that's all she wrote for us.
We are really looking forward to Dawson's one year seizure free party at the end of this month. We cant wait to celebrate this wonderful occasion.
I know there are many people who come across this blog,and I also know there are many of our friends and family who read this as well. So this is your open invitation to attend. We want as many people who lifted Dawson up in prayer during that time to come and attend. Right now we are kinda leaving it as a day long party. A sort of " come when you can and leave when you have to " event, with the food being focused around lunch time. We wont be sending out formal invitations, as there are literally hundreds of people who we would want to send them to,and that's just not possible to do. We would love to have an idea of how many people to expect, so if you are able to come Saturday May 30th please Email us and let us know you are attending. You may call or text as well if you already have our cell phone numbers. We hope you will be able to come and celebrate this miracle with us.
We love all of you so much and we hope to see you at the end of the month!!
Jeff and Allison
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