The EEG

I honestly do not have a ton to say about the 24 hour EEG that we had at the end of October. Nothing really came from it. The last day (Monday) I was going to lose my mind. The Neurologist that made the rounds on Sunday as well came in and just was not the greatest. When she made her rounds on Sunday I showed her the video of Seth and what could possibly be a seizure. She said nothing and just went about her day and then when she came back in on Sunday with the team of docs and told me that he wasn't having any seizures and that she believes that he has reflux. If I knew that she was going to say that to me I would have never brought him in for that. I started crying and called Mike and he dropped the girls off at my moms and then headed down to the hospital. On his way he called Dr. Williams office and asked if he could take 20min out of his day and walk to Seth's room and tell us what is going on. I honestly did not think he was going to show up but sure enough 15 min after Mike got to the hospital he comes walking into the room. 

We showed him the video and he believed by what he was seeing that he was having a seizure and he mentioned the medicine that we were trying to get Seth off of before the diet (valporic acid) can cause breathing issues and different types of seizures. He believes that is what we were witnessing and has us go back on the medicine. He did say give the diet 3 months and if it seems to not be helping then we will take him off. If the diet does not help we can continue trying different medicines and see if any of those help, try a vagus nerve stimulator, split brain. He said that Seth will probably never be seizure free. So we have to come to a point to decide what we are okay with him having and to what point we get "no seizures" we do not want to drug him so much that all he does is lay there doing nothing but has no seizures. We want to keep as much of "seth" as we can while taking away as many seizures as we can. Seth has spasms (myoclonic jerks), tonic clonic seizures or what use to be called grand mal seizures lasting anywhere from 40sec to 2min and 30sec, and  tonic seizures which last around 20-40 seconds and it is just stiffing of the limbs. So of those we talk to Dr. Williams and we are going to try and stop the most severe ones which are the tonic clonic ones. Seth also has SUDEP (Sudden Unexpected Death In Epilepsy). SUDEP is more likely in people with: 

  1. Uncontrolled tonic clonic seizures
  2. Those who are taking multiple medications  to try and control the seizures
  3. Seizures that occur during sleep.
  4. Males and African-Americans
  5. Those who are not taking the adequate doses of antiepileptic medications

Seth fits under all of these but number 5. We have always made sure he is on the correct amount of medicine and when we forget to give him is meds we do it as soon as we remember. It is a very scary thing to think about. I have many nights where I do not even want to put him in his own bed to sleep because I want to be with him. I do not want to lose my little boy but I do what him to have the best life while he is here with us. I want him to be able to be alert and have fun not be on so many medications that he cant function. Mike and I and the doctors are still trying to figure out what the best thing for Seth is so if you think about it please pray for us and the doctors that we make the best decisions for Seth and what he needs.

Halloween.

This year we did not have anything huge planned for Halloween and Sydney really didnt feel that great so we just hung out at home. On Halloween Seth had his Halloween Party at school and he went as Jake from Adventure Time. Sydney and Ember got to come along and go trick-or-treating as well. All the kids got to go around the school and get candy and then each classroom had something different to do. There was a music room, cookie decorating and play dough, art room, dark room with different lights and stuff, story time room, and quiet room. We had a great time and all the kids loved it.
That night we just went around the neighborhood and then Seth was ready for bed and Ember just wanted the candy. After we got the littles to bed Sydney wanted to go back outside and pass out candy. It was a fun night just hanging around the house.

Tooth Fairy

My baby girl has officially lost her first tooth. We have been waiting for this dang tooth to come out for almost a year. She had so much work done to her top 4 teeth that it made it ready to come out earlier than normal. Her new tooth I dont think is even ready to come in but thats okay she was super excited to lose it. I was so happy for her cause she was so excited but yet at the same time it made me so sad to see that visual of her growing up. Everytime I look at her now with that goofy smile it is bittersweet. I had to leave really early Saturday to take Seth to PCH for his EEG study that I completely forgot the tooth fairy. Mike told me she woke up in tears saying the tooth fairy forgot her so I had him write a note to her from the tooth fairy and put a little gift on the front porch and had him tell her the tooth fairy had so many kiddos lose their teeth last night that by the time she got to our house it was almost morning so she left it by the front door. So that made her feel much better :)

24 hour EEG

Friday mid-morning I got a call from Dr. Williams nurse saying that he agreed that Seth needed another 24hour EEG to figure out if the breathing episode that Seth is having are in fact seizures. Well a few hours after that I get a call from scheduling and I figured it would be a few weeks out oh boy was I wrong. They wanted me to go in that night. I couldn't do that especially with 2 other girls and knowing that these can go past 24 hours I needed to line up some help. So I agreed to 6am on Saturday morning and let me tell you it was insane! We had to go through the ER and they had no idea what was going on and then finally when we got to a room I think it was 11:30am and I think it was around 1:45 when they finally got him all hooked up and ready to go. The night was not as bad as our first 24 hour sleep study. They brought in this padded gate thing and two mattress so he can crawl around and play and also sleep in there, which is what he is doing right now :) I was up about every hour and he slept way more than I did. The lights have to be one and that was the most annoying part because Seth loves light. His room at home is so dark at night and most of the time he goes right to sleep but here they let the lights off for a few minutes until he falls asleep and then they rush in and turn them on...SO ANNOYING!

Anyways I have no idea how long we will be here, as of right now he has had is normal spasms which I do not even press the button for (someone has to be in the room at all times to press a red button every time he has a seizure so they can mark it on the EEG and video) well last time I had to press it for the spasms and they were in here all the time and when you press it ALL the lights come on super bright and they run like crazy people. So this time I am not even pressing it for those only for the "tonic clonic" seizures and then these new breathing episodes. He has had 1 tonic clonic this morning and so far no breathing episodes. So this could be a long haul. As much as I would love to be out of here today I am thinking that will for sure not happen. Prayers that I get some much needed sleep tonight.

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!