Last week on Wednesday January 9th Evan had an EEG. Probably his 15th in the past year. He hates them and I hate taking him and putting him through the EEG but I know it is needed. He said No, the minute I rolled him into the building. He did not want to lay on the bed. He was playing on my phone and that helped keep him occupied. The part that he hates the most is the exfoliating scrub they have to use to clean the skin. He sits mostly still for the rest of it. Sometimes he does this thing where he kind of just goes limp and breathes funny, I wonder if he is just checking out because he hates the process so much.
We had to get him to sleep in this EEG do he had 2 doses of Zanaflex to get him to sleep. During the EEG before he fell asleep the tech suggested I take the phone away because it was distracting him from falling asleep. I understand her saying this. But I had to laugh inside of myself. Really? This child is going through a tramatic event in his life and he doesn't want to be doing it and you want me to take away the thing that is keeping him calm. Seriously Lady. Well, I had given him his first dose of Zanaflex as she was hooking him up in hopes of calming him. So about 20 mins into the EEG I gave him the 2nd dose and he was asleep in about 15 minutes. Given the fact that Evan does not like the EEG he really does well. He fusses and kicks but he's not screaming or crying and we get the test done which is important.
Once the EEG was hooked up and running I was looking at it to see what was going on. I feel that I am pretty well versed in reading Evan's EEGs. I can tell when he is having a seizure and when things are calm. Well, I guess I don't know as much as I thought. I thought I saw seizures happening and I was concerned that something weird was happening in the sleep portion. I had worked myself up into quite a mess that night. The next day was his neurology follow up and I was certain I was going to hear that he was having seizures and the ketogenic diet was not working as we had thought. Well..........
That was not at all what I heard. His neurologist is happy with the EEG. Of course it is not perfect as Evan has a brain malformation. But he said he is having spikes but not seizures, the absence activity is gone and the continuous spike wave in sleep in only happening on the right side now. This is good news. Each day that goes by I feel myself relaxing a bit. But then he does something weird and I go on alert mode again. Of course my hope is that Evan stays seizure free but I feel that in reality that will not happen. So I am doing my best to enjoy life and not stress too much about seizures. Way easier said than done. But I am so happy to share good news in regards to seizures.
Stay Tuned next time for School Drama!
Monday, January 14, 2013
Wednesday, January 2, 2013
Quick Update
This will just be a quick update. Evan is doing so well. I feel like I am waiting for the other shoe to drop but hopefully, we will have a long run of nothing to exciting happening.
Lately, Evan is just talking so much. It is mostly not understandable but he has been saying mommy, dad, gabe, oh yeah, I want that and a few other words more clearly. Now his speech is far from clear and it would probably take an outsider a while to understand him. He basically says words with vowels and misses the other sounds. This is caused by #1 his brain malformation and the speech area of his brain is very malformed. Other children with the same type of malformation-polymicrogyria usually have some sort of speech delay or are mostly non verbal. This new burst of speech is awesome and it is showing some cognitive maturity on Evan's part which is so awesome as well. He has really made strides in the last 4 months. And we noticed even more once we started the ketogenic diet and got a better control on his seizures.
Seizures are doing awesome. Which means we aren't seeing them at all. He did have one after christmas and has had a few suspicious episodes. But really that is nothing compared to the crazieness we went through with him having 40-100 a day at some points. I have a love/hate relationship with this diet. I love that it is working and I hate that I have to weigh and measure all of his meals and mostly that I have to tell Evan no to foods or in some cases more food. Lately, he is wanting to eat so much and I feel like I should be encouraging that and not telling him no. But how can I not continue this diet if it is working. We see Evan's neurologist on January 10 and have an EEG on January 9th. I am honestly freaked out abou the EEG. I am worried we have lost our good control and Evan is having a lot of subclinical seizures which are the seizures we do not see but happen in his brain. This in not an unfounded fear because in March 2012 that is exactly what was happening. I will be holding my breath when we have the EEG until it turns on and I can see what is going on in that sweet brain of his.
We had a great November and December. I am happy that he is doing so well and I hope it continues well into 2013. Next post will have pics and some more fun info. I am trying to update this blog a few times a week.
Lately, Evan is just talking so much. It is mostly not understandable but he has been saying mommy, dad, gabe, oh yeah, I want that and a few other words more clearly. Now his speech is far from clear and it would probably take an outsider a while to understand him. He basically says words with vowels and misses the other sounds. This is caused by #1 his brain malformation and the speech area of his brain is very malformed. Other children with the same type of malformation-polymicrogyria usually have some sort of speech delay or are mostly non verbal. This new burst of speech is awesome and it is showing some cognitive maturity on Evan's part which is so awesome as well. He has really made strides in the last 4 months. And we noticed even more once we started the ketogenic diet and got a better control on his seizures.
Seizures are doing awesome. Which means we aren't seeing them at all. He did have one after christmas and has had a few suspicious episodes. But really that is nothing compared to the crazieness we went through with him having 40-100 a day at some points. I have a love/hate relationship with this diet. I love that it is working and I hate that I have to weigh and measure all of his meals and mostly that I have to tell Evan no to foods or in some cases more food. Lately, he is wanting to eat so much and I feel like I should be encouraging that and not telling him no. But how can I not continue this diet if it is working. We see Evan's neurologist on January 10 and have an EEG on January 9th. I am honestly freaked out abou the EEG. I am worried we have lost our good control and Evan is having a lot of subclinical seizures which are the seizures we do not see but happen in his brain. This in not an unfounded fear because in March 2012 that is exactly what was happening. I will be holding my breath when we have the EEG until it turns on and I can see what is going on in that sweet brain of his.
We had a great November and December. I am happy that he is doing so well and I hope it continues well into 2013. Next post will have pics and some more fun info. I am trying to update this blog a few times a week.
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