Seizures are rough. When we first found out that something was wrong the biggest thing I feared was seizures. I was talking on the phone with Lis when Seth was 4 months old right before we got the results of his EEG saying I just do not want to deal with seizures...they scare me the most. We got the results of his first EEG and were told his brain waves are not normal at all. They put him on a pretty safe med just to try and prevent anything if they decide to make their appearance. Well they decided to show there ugly head when Seth was 7 months old after his first surgery. They were spasms and so not fun to deal with and actually we have yet to get them under control. Around March (7 months ago) we have had the pleasure of "tonic clonic" seizures and I absolutely HATE them with a passion. It is horrible to watch his poor body when they are going on. They have gotten a lot worse since his birthday.
We started the Ketogenic diet to hopefully get these things under control. 2 days before the diet started he did this really weird breathing episode while at an appt. The doctor told us he thought that maybe some salvia went down the wrong pipe. Since it was the first time it happened I let it go and went on with my life. Well last Thursday (2 weeks into the diet) his school teacher called Mrs. Kasey (we love her) and she told me Seth was really struggling to breathe and really lethargic and really having a hard time and she asked if I would come down and check him out and see if I needed to take him in. By the time I got to his school he was doing much better. I made him a doctor appt because he did sound like there might be some gunk in his lungs but was unsure. I took him in and explained what happened and I was told that his lungs are clear and that some salvia probably went down the wrong pipe. This time I knew deep down that, that was not the case. I decided to take him home and just try and get it on video if it happens again. I was up all night thinking about it and thinking this has to be a neurological thing. It is like he is forgetting how to swallow and breathe at the same time. It is so weird I know but that is the only way I can think of how to describe it. Well Friday comes and he does it again. I was able to get some on video but its not the best. It took me a while to find the phone and it just wasnt that great. I have it saved to show the epileptologist when we go in november but until then I will keep trying to get videos. Monday I decided to call his epileptologist and just ask what we should do or if he thinks it has to do with the diet or if it is seizure activity. It took FOREVER for them to call me back and even longer for the doc to call me back. He called back around 7pm that night. I told him everything that was going on and he thinks it is seizure activity. He wants Seth back on the depakene (which we got him off before the diet) and if it happens again and lasts around 5minutes we need to call 911. Tuesday his teacher told me that he had two more of those "breathing episodes" but nothing more than a minute. The more I think about it the more I am agreeing that they are seizures. Especially since they range in time span.
Well I decided yesterday that he needed to be seen earlier than Nov 20th and that I would like another 24hour sleep study done. I called and left a message with the nurse to ask his epileptologist if we can try that. I never got a call back. He then decided he would have another "breathing episode" while he was sleeping and it scared the crap out of me. I ran in his room picked him up and tried to get him alert so that he could swallow and breathe ok. It lasted maybe 2 min so it wasnt nearly as long as the one at the CRS appt or the first one at school. I called 3 more times today and finally got a call back that she was going to ask his doc and get back to me. Still havent heard yet. I have a feeling deep down that it is a new seizure and that the diet is just not working on his body like it does for others. I am now going to start fighting for the Vegus Nerve Stimulator.
Please pray that we can figure these out and that we can get in before November 20th and get another 24 hour sleep study done. It is just really weighing on my heart and I want my precious little fun loving boy back!
The Marinellos
Showing posts with label Seizures. Show all posts
Showing posts with label Seizures. Show all posts
Thursday, October 25, 2012
Tuesday, March 6, 2012
Serious and not fun news.
Quite a bit has happened the past few months! On January 30th Seth had another EEG done to just check up on his seizure activity, he seems to have one almost every year. He did really well and slept when he needed to and was awake and playing when he needed to as well. The annoying part of it all is the stuff they use to hold all the things on his head because it is so hard to get out of his thick curly hair :)
The on January 31st we went for a MRI and Dr. Bernes (his neurologist) wanted to have an updated one cause we only have one from when he was in the NICU around the time they diagnosed cCMV. He was put to sleep for this and it took quite a while and he had a little trouble with his breathing but not too bad. He is such a trooper and after a little nap he was back to his normal self.
So I called to get the results the day after his MRI and got news that I just really did not want to hear. The EEG: showed constant seizing while sleeping during those 45min of the test, basically his brain wont stop and the doctor said with that much seizing (if he really does while sleeping through the night) he should not wake up in the morning. So we now have a 5th med (Valium) to give him to hopefully help those out.
The MRI: His actual brain has not changed since the first MRI which were thought was going to happen. He did say this is one of the worst prenatal syndromes he has seen and where Seth's brain should be ridged his is smooth. I asked if he thinks Seth will walk or talk and he said in his honest opinion "no" he will never walk or talk. That was a huge punch in the gut. I mean it all has been a huge punch in the gut but it is really hard to hear that you might not ever hear your little boy say hi mommy, or I love you, or yell at me, or talk with his sisters...it was just hard to hear. I then asked if he thinks Seth will crawl (knowing he already does) and he said no I do not think so, I was able to say He crawls EVERYWHERE! He was amazing that he is able to do that and said by looking at his MRI he should not be able to do that!
What a miracle my little boy is praise GOD for such an amazing miracle to be apart of. My little boy is still here against all odds because HE wants him here! I truly believe this with all my heart but putting him to bed at night is one of the hardest things for me lately. To hear that he shouldn't wake up in the morning with that much seizing its hard to put him to bed and think maybe this is the last night I will hold him. "What I know trumps how I feel" is so very hard right now.
He has been on Valium Since the beginning of Feb and Dr. Bernes wants to do a 24hr sleep/video study on Seth at the hospital. He will get admitted on March 12th and we will stay there until they get everything that they need. If they end up wanting to change some meds we will have to stay for at least 72 hours. So what this means is that Seth is now being seen by an epileptic team and after the study will tell me their opinion on what the best thing is for Seth and then send those notes to Dr. Bernes and then the following Monday they will have a epileptic team meeting and talk about what they best options will be for Seth and then we will meet with them and talk it all out. According to our neurologist Dr. Bernes we have probably 2 options, a vegus nerve stimulator or a corpus callosotomy. Dr Bernes will still be Seth Neurologist but he will also now have an epileptic team that will deal with the more serious/risky procedures.
If you think of it please pray for my little boy! I know he is in good hands and that his story is already written out but pray for strength that we make the right decisions for Seth and that the doctors as well make the best decisions for my little boy!
Seth on Feb 9th went into Cardons and got botox injections in his calves. We have been waiting since December 6th for insurance to get there butts in gear and approve this and finally they did. Seth points his toes all the time. His brain tells him that that is a normal position to be in and then when he gets excited he does it even more. We have tried AFO's to help this out but he is able to get out of them all the time so in December we saw Dr. Moss a neurosurgeon. He said a more permanent fix would be a dorsal rhizotomy but he does not want to do that to a two year old so for now we are going to try Botox to paralyze the muscles so that is exactly what we did. After the Botox we had to wait 6 days and then on Feb 14th we went in and they casted his feet from the knee down. This is stretching him out so that after the casting is done we can get him into his AFO's and hopefully we will not be able to get his heel out of them.
On Feb 28th we went in to get the first set of casts off and they decided that he needed to be stretched more. (they want him 10 degrees past normal which is 90 degrees) so they put on another set for 2 more weeks.
On March 12th he is suppose to get the casts off and if he does not need a third set then we go straight to a Shriners clinic that does the moldings for afo's to get him fitted for a new pair of AFO's. He will have the botox repeated every 4-6 months as needed. The casting (thankfully) will not need to be repeated every time he gets botox. He loves his bath so much and we can not give them to him and it breaks my heart plus I love a clean boy and he not so clean right now, I mean we give him a quick shower but that is not as good as a bath :)
Please if you think about it pray for Seth and for me as next week gets closer. We will be at PCH for as long as they need us to be. Praying it is just quick and in and out in 24 hours but sometimes that is not the case. And patience for me cause I cant leave the room unless I am running down to get some food and I have to bring it right back up and eat it in the room. So it could get a little crazy :)
The on January 31st we went for a MRI and Dr. Bernes (his neurologist) wanted to have an updated one cause we only have one from when he was in the NICU around the time they diagnosed cCMV. He was put to sleep for this and it took quite a while and he had a little trouble with his breathing but not too bad. He is such a trooper and after a little nap he was back to his normal self.
So I called to get the results the day after his MRI and got news that I just really did not want to hear. The EEG: showed constant seizing while sleeping during those 45min of the test, basically his brain wont stop and the doctor said with that much seizing (if he really does while sleeping through the night) he should not wake up in the morning. So we now have a 5th med (Valium) to give him to hopefully help those out.
The MRI: His actual brain has not changed since the first MRI which were thought was going to happen. He did say this is one of the worst prenatal syndromes he has seen and where Seth's brain should be ridged his is smooth. I asked if he thinks Seth will walk or talk and he said in his honest opinion "no" he will never walk or talk. That was a huge punch in the gut. I mean it all has been a huge punch in the gut but it is really hard to hear that you might not ever hear your little boy say hi mommy, or I love you, or yell at me, or talk with his sisters...it was just hard to hear. I then asked if he thinks Seth will crawl (knowing he already does) and he said no I do not think so, I was able to say He crawls EVERYWHERE! He was amazing that he is able to do that and said by looking at his MRI he should not be able to do that!
What a miracle my little boy is praise GOD for such an amazing miracle to be apart of. My little boy is still here against all odds because HE wants him here! I truly believe this with all my heart but putting him to bed at night is one of the hardest things for me lately. To hear that he shouldn't wake up in the morning with that much seizing its hard to put him to bed and think maybe this is the last night I will hold him. "What I know trumps how I feel" is so very hard right now.
He has been on Valium Since the beginning of Feb and Dr. Bernes wants to do a 24hr sleep/video study on Seth at the hospital. He will get admitted on March 12th and we will stay there until they get everything that they need. If they end up wanting to change some meds we will have to stay for at least 72 hours. So what this means is that Seth is now being seen by an epileptic team and after the study will tell me their opinion on what the best thing is for Seth and then send those notes to Dr. Bernes and then the following Monday they will have a epileptic team meeting and talk about what they best options will be for Seth and then we will meet with them and talk it all out. According to our neurologist Dr. Bernes we have probably 2 options, a vegus nerve stimulator or a corpus callosotomy. Dr Bernes will still be Seth Neurologist but he will also now have an epileptic team that will deal with the more serious/risky procedures.
If you think of it please pray for my little boy! I know he is in good hands and that his story is already written out but pray for strength that we make the right decisions for Seth and that the doctors as well make the best decisions for my little boy!
Seth on Feb 9th went into Cardons and got botox injections in his calves. We have been waiting since December 6th for insurance to get there butts in gear and approve this and finally they did. Seth points his toes all the time. His brain tells him that that is a normal position to be in and then when he gets excited he does it even more. We have tried AFO's to help this out but he is able to get out of them all the time so in December we saw Dr. Moss a neurosurgeon. He said a more permanent fix would be a dorsal rhizotomy but he does not want to do that to a two year old so for now we are going to try Botox to paralyze the muscles so that is exactly what we did. After the Botox we had to wait 6 days and then on Feb 14th we went in and they casted his feet from the knee down. This is stretching him out so that after the casting is done we can get him into his AFO's and hopefully we will not be able to get his heel out of them.
On March 12th he is suppose to get the casts off and if he does not need a third set then we go straight to a Shriners clinic that does the moldings for afo's to get him fitted for a new pair of AFO's. He will have the botox repeated every 4-6 months as needed. The casting (thankfully) will not need to be repeated every time he gets botox. He loves his bath so much and we can not give them to him and it breaks my heart plus I love a clean boy and he not so clean right now, I mean we give him a quick shower but that is not as good as a bath :)
Here are a few picture of the kiddos from the past month
Emmy having a rare moment and actually being sweet and giving Seth a kiss.
Playing on the trampoline...he loves the light that flashes when you bounce.
Ember trying to get out my moms doggie door.
Trying to touch the mini horse. She was so in love with it.
Seth playing with finger lights. They are his favorite thing right now!
On the way home from one of his appointments. He was so sleepy and oh so cute!
Syd riding a horse. She loves it so much and has so much fun!
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