Last March Seth had his 24 hour sleep study to figure out the best way to treat his seizures. We finally got to meet his new epileptologist (Dr. Williams), who I honestly really did not care for. I talked with Dr. Bernes to see if I was going to lose him or if we could still see him regarding Seth. He told me that he would be in our lives as long as we wanted, and we really wanted him. So after the study they had to go in front of the epileptic board and discuss what the best options would be for Seth. They decided they would try the ketogenic diet first and then go from there. It was only suppose to be a two months until they got everything together and we meet with the dietitian. We waiting until the end of June until we finally got in to see Dr. Williams and discuss everything and also meet with Lisa who will be Seth's dietitian. We had to get a lot of blood work done and urine analysis to see if his body will even tolerate the diet. Everything came back fine and yet we were still waiting to start the diet. About 3-4 weeks ago Seth started having a massive seizure increase and I called his neuro Dr. Bernes and he was very upset that Seth was still not on the diet so he made a few phone calls and within a week I finally heard that he was going to start soon and that I needed to get all the things to start the diet. October 3rd we got the shipment of the ketocal and were ready to start the diet Thursday October 4th. We had a few days of weaning off the pediasure and onto the ketocal. I took 2 extra days so that we could get Seth use to the taste of the ketocal so that he might still be willing to take his bottle. He officially was completely on the ketcal October 10th. He has been in ketosis since then and I am not sure I am loving this diet but I am giving it a try and we will see how it does. He had two seizures Thursday on the way to school and then three today. We have not changed anything so I am not sure why they decided to show up but we will take it day by day. This diet might not be a complete fix or it might not help at all. We will give it a month and then decide if it is helping or not. There are quite a bit of side effects from the diet: constipation, dehydration, lethargic, upset stomach, vitamin deficiency, and more. He already has to get another set of blood work done to see how everything is working out. We had to change many things just to make this diet work, the first thing was cutting out carbs and sugar then
5. Lip Balm
6. Sun Screen
7. Diaper Cream
8. Medicine (nothing can be a syrup because it is full of sugar)
So Now every night before I go to bed I measure out 960ml of his ketocal and then mix that with 310ml of water which will be enough food to last him the following day. Once made it is only good for 24hours so I can only make a days worth. In the morning I divide it into 4 bottles so I can feed him and then send one to school and then the other 2 are for when we get back home. He gets 4 bottles a day every 4 hours (roughly 7:30-11:30-3:30-7:30) Then every morning and night we crush all his pills mix them with water and put them in the syringes to give him through the tube. We have to watch everything that goes into his body and everything that is put on his body, if he gets something feed to him that contains sugar or carbs or if something is put on his containing carbs or sugar he could have a seizure that could be incredibly hard to stop which is very scary to think about. It is amazing how much sugar and carbs are in things that we use everyday.
About a little over a week ago I talked to his neurologists nurse about switching his epileptologist and I am not sure if that has happened yet or not. As far as I know we are still with Dr. WIlliams and we should be seeing him this Thursday. I am not positive but if we do we have a lot of questions and concerns with how Seth is doing and some new things that have been happening.
Before we started the diet I had an appt for Seth at CRS in the orthopedic clinic and while we were there he started to breathe really weird. I describe it like he forgot how to swallow and breathe at the same time. I got so worried that he was not getting enough oxygen that I picked him up and took him out of the room to find someone to help him. His ortho told us to go to the ER but I did not want to take that trip especially if it was not worth it. He was completely back to his normal self within 10 min and I decided that I would take him home and if it happened again I would take him into the doctor. Well this past Thursday at school his teacher called be and told me that he is really struggling to breathe and that she wanted me to come down and check him out and stay for a little bit to see if he was going to be okay. By the time I got to the school he was doing okay. His teacher tried to explain it to me and from what I could gather it was the same thing he did when I was at his CRS appointment. I took him to his pediatrician. They think it was just thinking that he swallowed some of his spit down the wrong pipe. I didn't think that was it at all and left there feeling like we are never going to figure this out. I knew that I needed to get it on video and the more that I thought about it the more I am thinking that it is neurological. Like his brain is forgetting how to breathe or swallow or it is some type of seizure. Well he did it again on Friday and I was able to get the end of it on video because I could not find my cell phone for the life of me. At least I got enough that when we go to his neurologist appointment then I can show them.
If you can pray for Seth that we can stop his seizures and that we can figure out all of this breathing stuff and get him some help. I hate knowing that he does not get a full nights sleep because of his brain activity and that he could be having a seizure that is really messing with the way he is breathing.
During fall break we needed to think of some fun things to do especially for Seth because he was so use to being at school for 5 hours Monday-Thursday and because of break he did not have any therapies for the week as well. I decided he needed a box to play in so I taped two boxes together and then added some christmas lights so he would crawl in it and of course he loved it. The first day he played inside it for over 2 hours and just had so much fun. Even the girls wanted in on the fun.
I will leave you with a few more pictures from the break and just hanging around the house.