The one thing I HATE with a passion.

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!