Good Morning!! Dawson had a really GREAT night in comparison to the last two nights. I don't think he was experiencing insomnia as much as it was constipation and abdominal pain. I got him some MOM yesterday and he finally had a BM at about 2:00am. We both were able to get some much needed sleep. Wednesday night we only got about 3 or 3 and a half hours of sleep. Last night he only woke up twice. We feel much better this morning.
He has not had any spasms since yesterday afternoon. He didn't put out any high numbers yesterday either, the most being about a dozen. He seems to do the most after his long nap in the afternoon, at least the last few days seem that way. There has not really been any pattern to his spasms.
We are still hopeful the new medicatin will work. We should know for sure in about a week when the doses get higher. You guys are such a blessing, and we are so thankful for you and the support you have shown us during this. God is doing great things here ( I had to be reminded of that yesterday) and we are truly thankful.
Allison and Jeff
Thursday, January 31, 2008
Wednesday, January 30, 2008
Wednesday January 30th update
Vigabatrin has two different side effects other than peripheral blindness. One being extremely sleepy, and the other is having insomnia...
It looks like we may be going with the insomnia. He woke around 1:00 a.m. and never really went back to sleep last night.
He also had a large cluster of seizures ( about 30 yesterday afternoon) and then some again this morning. It is hard to stay positive all the time and today seems harder than normal.
We hope he sleeps better tonight then he has the last two nights as we are starting to wear down a little with no sleep.
Thanks for you thoughts and prayers.
Jeff and Allison
It looks like we may be going with the insomnia. He woke around 1:00 a.m. and never really went back to sleep last night.
He also had a large cluster of seizures ( about 30 yesterday afternoon) and then some again this morning. It is hard to stay positive all the time and today seems harder than normal.
We hope he sleeps better tonight then he has the last two nights as we are starting to wear down a little with no sleep.
Thanks for you thoughts and prayers.
Jeff and Allison
Tuesday, January 29, 2008
Tuesday January 29th Update
Hello and thank you for checking on Dawson. He is doing well today and his last cluster of seizures was yesterday evening. None so far today which is awesome. He didnt sleep well last night and we woke up exhausted this morning. He hasn't really slept great since all this started but he has never had any problems going to sleep, only staying asleep. Now over the past few days we have noticed him starting to fight going to sleep more often. UGGGGG. Who can blame him though with all the meds hes on and changing doses all the time.
Speaking of which, this Friday we will be going up on the Vigabatrin. Then in another week or so we will be dosing up yet again. Its all part of getting the correct amount in his system and it has to be done slowly.
Developmentally he is still doing really well. He is happy, and has a big grin for everybody he sees. His smile will light up the entire room. He is special and we are truly thankful to God for him.
Thank you for hanging in there with us. Thank you to all the prayer warriors !! You are awesome and its such a comfort to know so many people are praying for him. We pray that God will bless each and every one of you for choosing to go through this with us.
Speaking of which, this Friday we will be going up on the Vigabatrin. Then in another week or so we will be dosing up yet again. Its all part of getting the correct amount in his system and it has to be done slowly.
Developmentally he is still doing really well. He is happy, and has a big grin for everybody he sees. His smile will light up the entire room. He is special and we are truly thankful to God for him.
Thank you for hanging in there with us. Thank you to all the prayer warriors !! You are awesome and its such a comfort to know so many people are praying for him. We pray that God will bless each and every one of you for choosing to go through this with us.
Monday, January 28, 2008
Monday January 28th Update
Dawson continues to do really well on the Vigabatrin. He did have one large cluster of seizures but other than that they continue to be small in number and very mild.
We are waiting on his neuro to contact us today regarding the training video that we are to be involved in ( from a post a few days ago) and we hope to still be on track to being able to do that.
Thanks for checking in on him and we love you all
Jeff and Allison
We are waiting on his neuro to contact us today regarding the training video that we are to be involved in ( from a post a few days ago) and we hope to still be on track to being able to do that.
Thanks for checking in on him and we love you all
Jeff and Allison
Sunday, January 27, 2008
Sunday January 27th
Here is the low down on seizure activity since starting the Vigabatrin..
We have seen a definite decrease in activity since starting the new drug. Where before he was having anywhere from 8-26 seizures per cluster, he is now only having 3-4 seizures. They are also very mild, almost undetectable. So it seems we are on a good path. We hope to see the seizures continue to dwindle down as we continue the medication until there is a complete cessation.
His head cold is still pretty bad but his sleep seems to be getting a little better. He had several long naps yesterday and is sleeping longer durations.
Thanks for checking in on him
Jeff and Allison
We have seen a definite decrease in activity since starting the new drug. Where before he was having anywhere from 8-26 seizures per cluster, he is now only having 3-4 seizures. They are also very mild, almost undetectable. So it seems we are on a good path. We hope to see the seizures continue to dwindle down as we continue the medication until there is a complete cessation.
His head cold is still pretty bad but his sleep seems to be getting a little better. He had several long naps yesterday and is sleeping longer durations.
Thanks for checking in on him
Jeff and Allison
Saturday, January 26, 2008
Saturday January 6th update
Good news.. Today we have yet to see any seizure activity!! He got his first dose yesterday morning and then again yesterday evening. He did have some seizures yesterday but we have to remember that its takes a while to get enough Vigabatrin in his system to work. Hopefully that is what we are seeing now. He had a dose this morning and so far there has been no change in his personality ( which is what we want)
He has caught what were calling " The great wade head cold of 08" I think we have been passing it around to one another and it finally caught up with Dawson. He is very stopped up and of course that interferes with his eating and sleeping. He had a very restless night last night and we hope he gets over it quickly and doesn't progress into something worse.
We have seen a big change in the " puffiness" in his face over the last few days. The ACTH injections he was on caused the swelling, and finally its starting to go down. I kinda liked the puffy cheeks myself. At 4 months he is 27 inches tall and weighs 21 lbs. We have had several college scouts sniffing around the house recently. j/j
Thank you for your support and prayers. We certainly could not do this alone and you all are such a blessing for us.
Jeff and Allison
He has caught what were calling " The great wade head cold of 08" I think we have been passing it around to one another and it finally caught up with Dawson. He is very stopped up and of course that interferes with his eating and sleeping. He had a very restless night last night and we hope he gets over it quickly and doesn't progress into something worse.
We have seen a big change in the " puffiness" in his face over the last few days. The ACTH injections he was on caused the swelling, and finally its starting to go down. I kinda liked the puffy cheeks myself. At 4 months he is 27 inches tall and weighs 21 lbs. We have had several college scouts sniffing around the house recently. j/j
Thank you for your support and prayers. We certainly could not do this alone and you all are such a blessing for us.
Jeff and Allison
Friday, January 25, 2008
Friday January 25th update
We started the Vigabatrin this morning. We were supposed to start it last night but we decided to start today so that he gets both a morning and evening dose. Please stop for just a moment and lift Dawson up in prayer that God will work through this new drug and he will allow Dawson to be seizure free.
Thank you so much
Jeff and Allison
Thank you so much
Jeff and Allison
Thursday, January 24, 2008
Thursday January 24 update
We have returned home from the Neuro visit in Huntsville. We have the Vigabatrin now and will start administering it this evening. Dr Bebin said that we will know pretty quick if its going to work or not ( within a week or two.) She continues to be impressed with how well he is doing and how well his development is at this point.
If the Vigabatrin is working we will go back to UAB next week to have another VEEG done to confirm he isn't having seizures. In the meanwhile, she has instructed us to cut back on his Keppra. We will be going from 3ml back to 2ml twice a day. If after taking the Vigabatrin, and he is not having seizures, she said we will probably completely ween him off of the Keppra and go Vigabatrin only.
While we were there she informed us that the company who holds the patent on Vigabatrin is going to be in Birmingham next week shooting a training video for other parents who's children suffer from I.S and other seizures types. She asked us if we come and let them interview us as part of the training. We would be one of three couples invited and we would get to talk about what we have been through, what other parents should look for, ect, ect.
From the very moment she asked, we both felt like this was something we should take part in. I think it will be a great way for us to help other people who's children suffer from this. I hope that other parents will be able to see our faith through the video and be able to rely on the same Jesus that we rely on to get us through this.
She is going to call in the next few days and confirm everything but I certainly hope we get the opportunity to do this and give something back.
So hopefully the Vigabatrin is going to work and we pray now that we start seeing the rest of his seizures subside.
We love you all
Jeff and Allison
If the Vigabatrin is working we will go back to UAB next week to have another VEEG done to confirm he isn't having seizures. In the meanwhile, she has instructed us to cut back on his Keppra. We will be going from 3ml back to 2ml twice a day. If after taking the Vigabatrin, and he is not having seizures, she said we will probably completely ween him off of the Keppra and go Vigabatrin only.
While we were there she informed us that the company who holds the patent on Vigabatrin is going to be in Birmingham next week shooting a training video for other parents who's children suffer from I.S and other seizures types. She asked us if we come and let them interview us as part of the training. We would be one of three couples invited and we would get to talk about what we have been through, what other parents should look for, ect, ect.
From the very moment she asked, we both felt like this was something we should take part in. I think it will be a great way for us to help other people who's children suffer from this. I hope that other parents will be able to see our faith through the video and be able to rely on the same Jesus that we rely on to get us through this.
She is going to call in the next few days and confirm everything but I certainly hope we get the opportunity to do this and give something back.
So hopefully the Vigabatrin is going to work and we pray now that we start seeing the rest of his seizures subside.
We love you all
Jeff and Allison
Wednesday, January 23, 2008
Wednesday January 23rd update
We have just arrived home from UAB where we had to go to have Dawson's vision checked.
After an extremely long wait in the Doctors office we finally got to go back there. The nurse came in and dilated his eyes and then sent us back out to the waiting room to wait some more.
We got called back again and the Doctor came in with a spinning light thingy to get his attention, and did the following test.........
He moved the light to the left and Dawson looked to the left..... He moved the light up and Dawson looked up......... he moved the light to the right and Dawson looked to the right......Then for the final move he moved the light down and Dawson looked down.. The Doctor then looks at us and says the following " Yeah, he can see pretty good"
So we drove down to Birmingham and back to find out that Dawson can see!!!
The good news is is that he said that he has some of his patients that are on Vigabatrin and NONE of them have any vision problems whatsoever from taking the drug. That part was encouraging but We were expecting a little more to be done i guess.
Tomorrow our travels take us back to Huntsville to see his Neurologist where we will start the new drug. Were praying hard that it works as he had a cluster on the way to Birmingham that had 27 seizures in it.
He wasn't bothered by them as the whole time he was trying to take his pacifier out of Allison's hand---which he was successful at. So we have learned to see what we want and go after it.
( new trick)
We will post when we get home from Huntsville and let you all know how the Vigabatrin is doing.
We love you
Jeff and Allison
Tuesday, January 22, 2008
Tuesday Evening Jan 22
Hello Everyone!! Dawson has had a good day today. He has only had 2 clusters of spasms so far, one episode of maybe 2 and the other of about 12. He is asleep right now. I laid him on my pillow while I was sorting clothes and he fell asleep....he is so cute!!!! Last night he woke about every 3 hours once he finally got settled. So I only had to get up with him twice, which is better than it has been. Hopefully he will have a good night tonight. Thanks for checking in on our precious little boy. We appreciate all your support and prayers. We love you all!!
Allison & Jeff
Allison & Jeff
Tuesday January 22nd
Hello. We found out today that we will be going to Childrens Hospital in Birmingham to see the eye doctor. We still cant figure out how they do an eye exam on a baby?? It should be interesting.
Since the Vigabatrin can cause peripheral blindness, They want to check his eyes before we start the treatment ( which will be Thursday) to have something to compare his future eye visits to. Hopefully the exam will not be to bad on him.
So just when we start to hit a lull as far as medications go..... Here we go again.
We hope the Vigabatrin will be successful and that he tolerates the medicine.
We will post tomorrow as soon as we get home from the eye doctor.
We love you all
Jeff and Allison
Since the Vigabatrin can cause peripheral blindness, They want to check his eyes before we start the treatment ( which will be Thursday) to have something to compare his future eye visits to. Hopefully the exam will not be to bad on him.
So just when we start to hit a lull as far as medications go..... Here we go again.
We hope the Vigabatrin will be successful and that he tolerates the medicine.
We will post tomorrow as soon as we get home from the eye doctor.
We love you all
Jeff and Allison
Monday, January 21, 2008
Monday January 21st Update
We made is safely back from Prattville yesterday evening. Thank you Scott and Michelle for a great time, great food, and for putting up with us for a few days.
Dawson had some seizures in the middle of the night last night ( a cluster of about 12 ) and nothing since then.
His sleep is still pretty bad and can't stay asleep for a very long period of time. We have a head cold floating around our house and we are hoping and praying that he doesn't get it. With his suppressed immune system, a simple cold could turn into something serious for him.
Developmentally he continues to do really well. He is getting very good at taking his pacifier out of his mouth and putting it in. He does this over and over as if its a game for him. He is still very alert and notices everything, although over the weekend I noticed that he looked " sleepy" a lot of the time. Not sure whether its the increase of Keppra or maybe not being able to sleep well is catching up with him??
Please continue to pray for Dawson and we praise God for the works already done in him.
Jeff and Allison
Dawson had some seizures in the middle of the night last night ( a cluster of about 12 ) and nothing since then.
His sleep is still pretty bad and can't stay asleep for a very long period of time. We have a head cold floating around our house and we are hoping and praying that he doesn't get it. With his suppressed immune system, a simple cold could turn into something serious for him.
Developmentally he continues to do really well. He is getting very good at taking his pacifier out of his mouth and putting it in. He does this over and over as if its a game for him. He is still very alert and notices everything, although over the weekend I noticed that he looked " sleepy" a lot of the time. Not sure whether its the increase of Keppra or maybe not being able to sleep well is catching up with him??
Please continue to pray for Dawson and we praise God for the works already done in him.
Jeff and Allison
Sunday, January 20, 2008
Sunday January 20th Updat
Happy Sunday everybody.. Dawson has only a small cluster of seizures this morning and they were very very small. He only had 3 maybe 4 and they were almost unnoticeable. It looks like upping the dosage of Keppra has certainly helped for the time being as the seizures are spacing apart a little bit and they are also milder.
We are still in Prattville and have had a wonderful time visiting family. The break from the norm has been awesome and we hate to have to leave today.
Thank you so much for thinking of Dawson.
Jeff and Allison
We are still in Prattville and have had a wonderful time visiting family. The break from the norm has been awesome and we hate to have to leave today.
Thank you so much for thinking of Dawson.
Jeff and Allison
Saturday, January 19, 2008
Saturday Jan 19th afternoon
Hello Everyone!! Dawson just woke up from a pretty long nap and had a cluster of 19 spasms. It is still encouraging that he went so long between episodes. Maybe the spasms will continue to space out and decrease. Hope everyone is having a wonderful weekend!!
Love to All,
Allison & Jeff
Love to All,
Allison & Jeff
Saturday January 19th
We are in Prattville this weekend and its SNOWING!! We had to travel from North Alabama to South Alabama just to see some snow. Looks like there will be a few inches on the ground before its said and done...
Dawson is doing well and seems happy to be visiting family and seeing some new faces this weekend. He has not had any seizures since yesterday afternoon. We did go up on his Keppra and Its too early to tell if thats the reason for no seizures activity. We will keep a close watch on him and see how long he can go.
We will probably post again this evening sometime and hopefully we wont have any seizures to report.
We love you all
Jeff and Allison
Dawson is doing well and seems happy to be visiting family and seeing some new faces this weekend. He has not had any seizures since yesterday afternoon. We did go up on his Keppra and Its too early to tell if thats the reason for no seizures activity. We will keep a close watch on him and see how long he can go.
We will probably post again this evening sometime and hopefully we wont have any seizures to report.
We love you all
Jeff and Allison
Friday, January 18, 2008
Friday January 18th
Dawson is still doing really well. This morning we upped the dosage of Keppra from 2.5ml to 3.0
Usually there are sleep issues when we adjust his meds so we are looking forward to that. Tomorrow morning will be his last ACTH injection and we are so glad. It has been a long 6 weeks of shots but the ACTH has done a good job for him.
We go back to the neurologist next Thursday and we should have the Vigabatrin by then too. We are both very nervous about changing medications as you never know whats going to happen. At this point I think we are more afraid of making things worse instead of better.
He has been spared of most of the side effects of these drugs so far and our faith tells us that it will continue to be that way until we get his seizures stopped. Pray with us that the Vigabatrin will stop the remaining seizures and that he will only have to be on it for a short time.
We are getting ready to leave town for the weekend. We are going to visit my brother and family in Prattville. We have certainly been looking forward to the trip. ( although it appears we are going to miss a pretty good snow this weekend)
We love you all and thank you for checking in and praying for Dawson.
Jeff and Allison
Usually there are sleep issues when we adjust his meds so we are looking forward to that. Tomorrow morning will be his last ACTH injection and we are so glad. It has been a long 6 weeks of shots but the ACTH has done a good job for him.
We go back to the neurologist next Thursday and we should have the Vigabatrin by then too. We are both very nervous about changing medications as you never know whats going to happen. At this point I think we are more afraid of making things worse instead of better.
He has been spared of most of the side effects of these drugs so far and our faith tells us that it will continue to be that way until we get his seizures stopped. Pray with us that the Vigabatrin will stop the remaining seizures and that he will only have to be on it for a short time.
We are getting ready to leave town for the weekend. We are going to visit my brother and family in Prattville. We have certainly been looking forward to the trip. ( although it appears we are going to miss a pretty good snow this weekend)
We love you all and thank you for checking in and praying for Dawson.
Jeff and Allison
Thursday, January 17, 2008
Pictures of Dawson
He loves sleeping in his car seat
Allison giving Dawson his ACTH injection
Big Sis and "Baby Buddy"
Wednesday, January 16, 2008
Wednesday Night Extra
Hello everyone!!! Just wanted to update a little to what Jeff posted earlier. Dawson has now rolled over from is stomach to his back. He rolled over while at my parents house today. He rolled from is stomach to his side and then over to his back!!! We are so excited!!! We feel so Blessed that he is able to continue to develop like he has. Thank you so much for all your prayers.
Hope everyone has a great evening!! We love you all!!!
Allison & Jeff
Hope everyone has a great evening!! We love you all!!!
Allison & Jeff
Wednesday January 16th
Hello everybody, just wanted to let everybody know that there hasn't been much change over the last few days. He is doing really well, but still having a few clusters of seizures from time to time. We did get news yesterday that there is a way for us to get the vigabatrin without having to wait three weeks for it to get here. Its costing us more to get it this way, but its worth it if it will stop his seizures.
Sleep is still kinda off and on, and hes sleeping a couple of hours at a time each night. We think that going up in doses on his Keppra, and going down in doses on his ACTH injections are playing a role with his sleep. I think that once we get to a certain level on the amount of drugs in his system, and stay there, then he will be able to sleep better. Even though he is not getting a lot of sleep, he is always in a great mood. He wakes with a smile on his face and then plays with his toys until time for another nap.
Developmentally.... He is doing everything that he should be doing with the exception of rolling from his stomach to his back. We are putting him on his stomach more to develop that muscle group and hopefully he will be able to start rolling over soon. I think his size ( 21 lbs now !!!) hinders him a little with rolling as well.
Thank you for checking in, and praying for him. We love you
Jeff and Allison
Sleep is still kinda off and on, and hes sleeping a couple of hours at a time each night. We think that going up in doses on his Keppra, and going down in doses on his ACTH injections are playing a role with his sleep. I think that once we get to a certain level on the amount of drugs in his system, and stay there, then he will be able to sleep better. Even though he is not getting a lot of sleep, he is always in a great mood. He wakes with a smile on his face and then plays with his toys until time for another nap.
Developmentally.... He is doing everything that he should be doing with the exception of rolling from his stomach to his back. We are putting him on his stomach more to develop that muscle group and hopefully he will be able to start rolling over soon. I think his size ( 21 lbs now !!!) hinders him a little with rolling as well.
Thank you for checking in, and praying for him. We love you
Jeff and Allison
Monday, January 14, 2008
Monday night January 14th
Hello everybody. Today has been another good day. Some seizure activity after naps during the day but haven't seen anything this evening or so far tonight. Our new trick this week is taking our pacifier out of our mouth and being able to put it back in. Everyday it seems as if he is doing more and more and we are blessed for that.
We plan on having some more pictures this week to post so check back to see those.
God continues to bless us as Dawson is developing normally at this point. Allison and I pray every night for God to bless those who are praying for him. There are no words we can say that would adequately show how we truly feel about all of you. Blessings have come from out of nowhere and prayers are being answered.
Thank you and we love you all
Jeff and Allison
We plan on having some more pictures this week to post so check back to see those.
God continues to bless us as Dawson is developing normally at this point. Allison and I pray every night for God to bless those who are praying for him. There are no words we can say that would adequately show how we truly feel about all of you. Blessings have come from out of nowhere and prayers are being answered.
Thank you and we love you all
Jeff and Allison
Sunday, January 13, 2008
Sunday January 13th Update
Happy Sunday to everyone. Another good day for Dawson today. His sleep is a little off again. He is going to sleep ok but for some reason can't seem to nap for very long. Today started the last week of his ACTH injections. We are down to .5 ml ( which is almost nothing) but its part of the weaning process. Allison is looking forward to his last shot this week.
We have started to see a decline over the past couple of days in the number of seizures per episode. Most likely due to the increase in his Keppra. We will go up to 3ml twice a day starting the end of this week. We both feel that the Keppra has done a great job at controlling his seizures but we also feel like it will take something else to stop them at this point.
He continues to be happy and curious and we are so thankful to have him.
God bless and we love and are thinking of you all!
Jeff and Allison
We have started to see a decline over the past couple of days in the number of seizures per episode. Most likely due to the increase in his Keppra. We will go up to 3ml twice a day starting the end of this week. We both feel that the Keppra has done a great job at controlling his seizures but we also feel like it will take something else to stop them at this point.
He continues to be happy and curious and we are so thankful to have him.
God bless and we love and are thinking of you all!
Jeff and Allison
Saturday, January 12, 2008
Saturday January 12th Update
Dawson continues to do well. We are starting to see more seizures per cluster the past couple of days. Usually he would have about 6-10 per episode and now he is having 10 to 20 per episode.
He is still averaging about 2-3 episodes per day and developmentally is doing everything that he should be.
Hopefully as we up the dosage of Keppra the number of seizures per episode will go down.
We have Ashlyn and Katelin with us this weekend and its always great having them around. Madison loves seeing them and it gives Dawson some new faces to look at as well.
We are going to the park today for some much needed fun and some fresh air. Thank you for your prayers and we will say hi again tomorrow.
Jeff and Allison
He is still averaging about 2-3 episodes per day and developmentally is doing everything that he should be.
Hopefully as we up the dosage of Keppra the number of seizures per episode will go down.
We have Ashlyn and Katelin with us this weekend and its always great having them around. Madison loves seeing them and it gives Dawson some new faces to look at as well.
We are going to the park today for some much needed fun and some fresh air. Thank you for your prayers and we will say hi again tomorrow.
Jeff and Allison
Friday, January 11, 2008
Friday November 11th Update
We had a visit in Huntsville with Dawson's Neurologist this morning . Everything went well and she continues to be amazed by his progress. As figured, she wants to address the seizures that are still occurring. She said that she is very picky and persistent about these things until they are all completely stopped. We are very lucky to have a doctor who shows that kind of care and persistence.
The new drug will be Vigabatrin. The major side effect of this drug is that it can cause Peripheral blindness. Obviously we are very concerned about that possibility, but The Doctor said it is actually safer in infants than in older children and adults. She also said that the dosage amounts have a lot to do with it. She is using the drug currently to treat some of her patients, and not one have shown any visual side effects.
The drug is not FDA approved in the US yet ( It will be this Spring) and is made in England and shipped to Canada, which is where we will get it from. The process from ordering the drug and receiving it takes about 3 weeks. She wanted to give us the weekend to think things over and then let her know on Monday. The Vigabatrin is the first line of treatment for this disorder everywhere except in the USA. In the US the first go to drug is the ACTH which we've already done.
So here we go with another drug. Its very stressful putting all these drugs in such a young baby. Especially not knowing what they are going to do to him. But he has shown amazing tolerance to everything we have put in him so far. We are also going to up his Keppra again. We are going from 2ml to 2.5 ml for a week and then up to 3ml while we are waiting on the Vigabatrin to process. If upping the dosage on his Keppra stops the seizures , then we will not need to give him the Vigabatrin. Pray with us that his happens.
He is sleeping better now ( especially in his new Amby bed.) He slept a stretch of 6 hours last night. You can go to http://ambybaby.com/ and see what it looks like. If you know of anybody who has a baby that has trouble sleeping you can recommend this to them. It is a God send. I wonder if Amby Bed will pay me for the commercial here???
Because of prayer and the healing hand of God, with whom we give all credit, he is defying the odds. Thank you, and continue to lift him up.
We love you all !
Jeff and Allison
The new drug will be Vigabatrin. The major side effect of this drug is that it can cause Peripheral blindness. Obviously we are very concerned about that possibility, but The Doctor said it is actually safer in infants than in older children and adults. She also said that the dosage amounts have a lot to do with it. She is using the drug currently to treat some of her patients, and not one have shown any visual side effects.
The drug is not FDA approved in the US yet ( It will be this Spring) and is made in England and shipped to Canada, which is where we will get it from. The process from ordering the drug and receiving it takes about 3 weeks. She wanted to give us the weekend to think things over and then let her know on Monday. The Vigabatrin is the first line of treatment for this disorder everywhere except in the USA. In the US the first go to drug is the ACTH which we've already done.
So here we go with another drug. Its very stressful putting all these drugs in such a young baby. Especially not knowing what they are going to do to him. But he has shown amazing tolerance to everything we have put in him so far. We are also going to up his Keppra again. We are going from 2ml to 2.5 ml for a week and then up to 3ml while we are waiting on the Vigabatrin to process. If upping the dosage on his Keppra stops the seizures , then we will not need to give him the Vigabatrin. Pray with us that his happens.
He is sleeping better now ( especially in his new Amby bed.) He slept a stretch of 6 hours last night. You can go to http://ambybaby.com/ and see what it looks like. If you know of anybody who has a baby that has trouble sleeping you can recommend this to them. It is a God send. I wonder if Amby Bed will pay me for the commercial here???
Because of prayer and the healing hand of God, with whom we give all credit, he is defying the odds. Thank you, and continue to lift him up.
We love you all !
Jeff and Allison
Thursday, January 10, 2008
The Other Thursday January 10th Update
Who says you can't have two Thursdays in one week??. For some reason I thought Yesterday was Thursday all day long.
Dawson is doing well today. So alert and very happy. He watches everything we do. Sleep is still kinda iffy at times although he did sleep 4 hours straight in the new Amby bed last night. I think that may be a record. This morning was injection day and after next week we will be done with the ACTH.
We go first thing in the morning to Huntsville to see his Neurologist. Hopefully we will bring back some good news.
Thanks for your prayers and for checking on Dawson
Jeff and Allison
Dawson is doing well today. So alert and very happy. He watches everything we do. Sleep is still kinda iffy at times although he did sleep 4 hours straight in the new Amby bed last night. I think that may be a record. This morning was injection day and after next week we will be done with the ACTH.
We go first thing in the morning to Huntsville to see his Neurologist. Hopefully we will bring back some good news.
Thanks for your prayers and for checking on Dawson
Jeff and Allison
Wednesday, January 9, 2008
Thursday January 9th update
Dawson is still having these clusters of very small seizures when coming out of sleep. Yesterday i think he had 15 in one spell. That's the most we have seen at one time. Other than that he is doing really well. We can still see changes in him daily and he is working on refining his grasp. He is able to reach out and touch things, and has the natural reflex to bring to his mouth whatever he can get in his hand. He is really trying to sit up now and from a reclined position can almost sit up right. He still needs help steadying himself in a seated position. So with that being said, he is doing all the things that a 4 month old should be doing and that in itself is a miracle.
We purchased a bed called an "Amby Bed" for him to sleep in. It is designed like a hammock and hangs from a spring so that when he moves the hammock bounces with him and helps put him back to sleep. It is supposed to closely mimic the movements while in the womb. Last night was his first night in it and he did pretty good. We are pretty sure there will be an adjustment period but hopefully it will help him sleep better.
Madison is much better today. Her fever broke last night sometime, and the first thing she wanted to do this morning was go see "Baby Buddy".
Thank you so much for thinking of us and checking in to see how he is doing.
We love you
Jeff and Allison
We purchased a bed called an "Amby Bed" for him to sleep in. It is designed like a hammock and hangs from a spring so that when he moves the hammock bounces with him and helps put him back to sleep. It is supposed to closely mimic the movements while in the womb. Last night was his first night in it and he did pretty good. We are pretty sure there will be an adjustment period but hopefully it will help him sleep better.
Madison is much better today. Her fever broke last night sometime, and the first thing she wanted to do this morning was go see "Baby Buddy".
Thank you so much for thinking of us and checking in to see how he is doing.
We love you
Jeff and Allison
Tuesday, January 8, 2008
Tuesday January 8th
Hello to all our friends and family.
Dawson continues to do really well. Still having a few clusters of seizures here and there but continues to do well and is happy despite them. Yesterday was a horrible sleep day for some reason. he literally did not sleep or nap more than 20-30 min all day. He finally crashed last night on the way home in the car and that lasted until about 3:00 am this morning and then here we go again.
Madison has also come down with what were calling a " fever virus" last night, so were are trying to keep her as far away from him as possible. Which is impossible in itself, because she cant stand being more than a few feet away from him most of the time.
We have a Doctors visit in Huntsville this coming Friday. We are afraid that since he is still having the seizures that she will want to change his medication again. Although he is still having a few seizures, he is in such a good place right now, and he is developing normally So we almost hate to chance anything by switching medicines. But she is an awesome Doctor and obviously knows what she is doing, so we will go with whatever she suggest.
Please pray that these remaining seizures will stop. God has already done such awesome work with him and we are truly blessed.
We love you all!
Jeff and Allison
Dawson continues to do really well. Still having a few clusters of seizures here and there but continues to do well and is happy despite them. Yesterday was a horrible sleep day for some reason. he literally did not sleep or nap more than 20-30 min all day. He finally crashed last night on the way home in the car and that lasted until about 3:00 am this morning and then here we go again.
Madison has also come down with what were calling a " fever virus" last night, so were are trying to keep her as far away from him as possible. Which is impossible in itself, because she cant stand being more than a few feet away from him most of the time.
We have a Doctors visit in Huntsville this coming Friday. We are afraid that since he is still having the seizures that she will want to change his medication again. Although he is still having a few seizures, he is in such a good place right now, and he is developing normally So we almost hate to chance anything by switching medicines. But she is an awesome Doctor and obviously knows what she is doing, so we will go with whatever she suggest.
Please pray that these remaining seizures will stop. God has already done such awesome work with him and we are truly blessed.
We love you all!
Jeff and Allison
Sunday, January 6, 2008
Sunday January 6th update
Dawson is doing well this morning. He had a cluster of about 11 little seizures last night, They were those myoclonic seizures that we have been talking about in the last couple of post.
He slept well last night and we have not seen any seizure activity yet this morning. When they happen its always as he is waking from sleep, so we watch him pretty closely for about 30 minutes after each nap. We are ready to start another run of some seizure free days. Maybe today will start that.
The amount of ACTH in his injections decreased this morning, and this week he will only be getting .10 ml and next week he will get .05ml and then we will be done. He really doesn't even cry anymore when he gets his shot, but the process has still been hard. Especially for Allison.
Even though its been hard we are thankful for the ACTH, despite its side effects, for it has certainly done its job.
As mentioned before his mood continues to be good as we ween off the ACTH and we look forward to seeing the "puffiness" go away over the next few weeks.
Thank you for thinking, checking in, and praying or Dawson.
The Wades
He slept well last night and we have not seen any seizure activity yet this morning. When they happen its always as he is waking from sleep, so we watch him pretty closely for about 30 minutes after each nap. We are ready to start another run of some seizure free days. Maybe today will start that.
The amount of ACTH in his injections decreased this morning, and this week he will only be getting .10 ml and next week he will get .05ml and then we will be done. He really doesn't even cry anymore when he gets his shot, but the process has still been hard. Especially for Allison.
Even though its been hard we are thankful for the ACTH, despite its side effects, for it has certainly done its job.
As mentioned before his mood continues to be good as we ween off the ACTH and we look forward to seeing the "puffiness" go away over the next few weeks.
Thank you for thinking, checking in, and praying or Dawson.
The Wades
Saturday, January 5, 2008
Saturday January 5th
Dawson's neurologist did have a chance to review his EEG in its entirety and called us back with the following results.
The Hypsarhythmia that he once had, the constant misfiring of the brain that causes you not to be able to develop are gone. His EEG showed no traces of Hypsarhythmia!!!!!
From what we have been able to see from his progress, we suspect that they have been gone for a while. Probably since we started his ACTH injections. It is nice to see it confirmed on an EEG though.
Those small cluster of spasms that he has been having some days she was able to diagnose as well. She called them Myoclonic jerks or Myoclonic spasms. I have not done alot of reading on these but Dr Bebin kept saying this is much better. She feels that we will be able to control these with the Keppra, and we have already upped his dosage on that starting last night.
She said she was also able to pinpoint from where in the brain these spasms were originating. They are coming from a small focal point in the right side of the brain. The ones he was having before concerned the entire brain, now we are dealing with one small part of the brain. We pray that God will heal these as well and that soon he will be seizure free forever.
I think he has fully recovered from his EEG as he has woken this morning in his usual great mood. He is so full of smiles. He watches us walk across the room and just smiles the entire time. He also spent a lot of time watching himself in the mirror this morning. Yet another something new.
So far God has allowed him to beat the odds of this horrible disorder and we praise him for that
Thanks for checking up on him and we love you all
Jeff and Allison
The Hypsarhythmia that he once had, the constant misfiring of the brain that causes you not to be able to develop are gone. His EEG showed no traces of Hypsarhythmia!!!!!
From what we have been able to see from his progress, we suspect that they have been gone for a while. Probably since we started his ACTH injections. It is nice to see it confirmed on an EEG though.
Those small cluster of spasms that he has been having some days she was able to diagnose as well. She called them Myoclonic jerks or Myoclonic spasms. I have not done alot of reading on these but Dr Bebin kept saying this is much better. She feels that we will be able to control these with the Keppra, and we have already upped his dosage on that starting last night.
She said she was also able to pinpoint from where in the brain these spasms were originating. They are coming from a small focal point in the right side of the brain. The ones he was having before concerned the entire brain, now we are dealing with one small part of the brain. We pray that God will heal these as well and that soon he will be seizure free forever.
I think he has fully recovered from his EEG as he has woken this morning in his usual great mood. He is so full of smiles. He watches us walk across the room and just smiles the entire time. He also spent a lot of time watching himself in the mirror this morning. Yet another something new.
So far God has allowed him to beat the odds of this horrible disorder and we praise him for that
Thanks for checking up on him and we love you all
Jeff and Allison
Friday, January 4, 2008
Friday January 4th Update
Ok... lots of information
We just returned home from Crestwood hospital in Huntsville where Dawson had his latest VEEG. He was hooked up upon our arrival around 3:30. The method used to keep all the leads on his head was a little different from what we saw at UAB and by 6:30 the wrap was literally sliding up his head and taking all the leads off with it. The EEG technician had to come back and glue the leads down on his head. That worked really well except now we have a baby with super glue all in his hair....
Dr Bebin ( his neurologist) came in about 5:30 yesterday evening and took a look at his EEG and said it looked really good. There were no signs of Hypsarhythmia ( i will define that in a min)
She came back in this morning and took another look and said the same thing. They were able to capture some of the small clusters of seizures he's been having on his EEG, and Dr Bebin said they were very, very mild and showed no signs of Hypsarhythmia.
Hypsarhythmia.... imagine looking at an EEG and seeing all these little lines going across the screen and all of a sudden they all spike in an upward direction. That is called Hyppsarethmia and that type of brain activity is what is used to define, and diagnose Infantile Spasms. That type of brain activity is what keeps children with Infantile Spasms from developing normally mentally. She has not looked over his entire EEG ( she is doing that today) but from what we can tell right now he shows no signs of having that type of disabling brain activity. Dr Bebin is going to call us back this evening after looking it over it in its entirety.
We were overtaken with emotion last night as we sat there and watched his EEG. We both remembered what his last one in December looked like. It was a bunch of lines all going in different directions in a very unorganized pattern. Last night we watched all the lines grouped together moving in a very rhythmic and organized pattern. I can't even begin to tell you how awesome that was.
as we were standing there watching it we were reminded of two things. Gods awesome healing power, and the power of prayer. The Doctors, nurses, ACTH, Keppra, VEEG's are all just tools. Jesus is the one who heals.
For now we are going to up his Keppra from 1.5 ml to 2 ml to try to stop the small clusters of seizures from happening and our next appointment is next Friday.
The event was very tiring for Dawson as its hard to sleep with all that stuff on your head. But he pulled through like a trooper as always. He slept all the way home and is still asleep in his car seat an hour and a half later.
After hearing from Dr Bebin this evening we will post the news.
We love and are thinking of you all
Jeff and Allison
Wednesday, January 2, 2008
Wednesday Jan 2nd
Dawson continues to do really well and we are very anxious have his VEEG done tomorrow evening. He slept much better yesterday and last night and has been in a VERY good mood.
We think that as we are weaning off of the ACTH we are seeing more and more of HIS personality rather than the fussiness the ACTH causes.
We should have EEG test results back Friday morning and will post the news as soon as possible.
Jeff and Allison
We think that as we are weaning off of the ACTH we are seeing more and more of HIS personality rather than the fussiness the ACTH causes.
We should have EEG test results back Friday morning and will post the news as soon as possible.
Jeff and Allison
Tuesday, January 1, 2008
New Years Day
Happy New Year everybody!!!
Dawson is doing well so far this morning. We were over at Granny & Grampy's last night and he had a small cluster seizures. I wish I knew why some days he has some and some days he doesn't. When it happens, its when he is coming out of sleep. His neurologist said yesterday that lack of sleep or being overly tired can trigger the seizures. I guess that makes sense because yesterday was a horrible sleep day for him. He wasn't fussy at all, but for some reason just couldn't sleep more than 20 to 30 min at a time all day.
He slept very well last night and we have not seen anything yet this morning ( other than a very happy and very talkative baby.)
Both Dawson and Madison were up last night at midnight to help ring in the new year ( We missed you Ashlyn and Katelin) and we had a really good time.
I did forget to mention yesterday that his BP was a little elevated at the Dr. office but they didn't seem to be overly concerned. Also his weight was 20.9 lbs. Dr Bebin did reiterate that the puffiness in his face will go down, and he will lose the water weight as we come off of the ACTH.
Thanks for looking in and Pray for Dawson as we prepare to have his VEEG done.
Jeff and Allison
Dawson is doing well so far this morning. We were over at Granny & Grampy's last night and he had a small cluster seizures. I wish I knew why some days he has some and some days he doesn't. When it happens, its when he is coming out of sleep. His neurologist said yesterday that lack of sleep or being overly tired can trigger the seizures. I guess that makes sense because yesterday was a horrible sleep day for him. He wasn't fussy at all, but for some reason just couldn't sleep more than 20 to 30 min at a time all day.
He slept very well last night and we have not seen anything yet this morning ( other than a very happy and very talkative baby.)
Both Dawson and Madison were up last night at midnight to help ring in the new year ( We missed you Ashlyn and Katelin) and we had a really good time.
I did forget to mention yesterday that his BP was a little elevated at the Dr. office but they didn't seem to be overly concerned. Also his weight was 20.9 lbs. Dr Bebin did reiterate that the puffiness in his face will go down, and he will lose the water weight as we come off of the ACTH.
Thanks for looking in and Pray for Dawson as we prepare to have his VEEG done.
Jeff and Allison
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