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:
- Uncontrolled tonic clonic seizures
- Those who are taking multiple medications to try and control the seizures
- Seizures that occur during sleep.
- Males and African-Americans
- 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.