Crazy? I'm going there.

I think I am going crazy! Lack of sleep? Kadyn has been sleeping 2 hours at night and then up the rest of the night until 5am then waking up at 9. This mama is getting little sleep and it's starting to affect me. Kadyn's pain is just terrible! I feel so bad that there is nothing I can do but just keep giving him pain medication to try and make him better. Motrin and Tylenol are barely cutting it. I am waiting for him to go through one of his terrible thrashing and screeching spells and I have my video recorder ready because I am going to record it and show it to his doctors. He needs a stronge pain medication for days that are snowing, raining, storming and season changing because those just are not cutting it for him! It's just not fair!

I also did some studying on his old seizure medications. Keprra is not approved for children under 4-6 years of age,pending on the type of seizure. Trileptal is not from children under 4 years of age, Zonegran is not for children 16 years of age and Lamictal is the onle medication that they used for infants but it can not be used a lone. So I am going to mention these things to his Neurologist when we go next week. If I feel they caused more damage to Kadyn then neseacary I will take action and see justice is served! My son's seizures got worse on these medications, and when I tke him off he has a couple from withdraws but not any since? Hmmm, of course he is on the keto diet, but I think if he was off of it he would do just fine, I think I don't take him off because its a safe comfort thing for me. I guess I know this diet is safe for him. I am not putting him back on his medications. I threw them all away and I will not put him back on them. I do not care what they say. My sons quality of life is so much better now! He is doing so much more and talking more.

I also would like to request prayers for the little girl I babysit, she is back in the hospital having her blue spells again. They don't really have any answers for her mommy and I pray that they find some. So I am not babysitting tomorrow since she is there. I thought about visiting but with the wonderful snow storm that just hit us, staying home would be safer.

This week is Kadyn's EEG. Not sure how much I'll be online as I believe we can't have anything that plugs in. I will see what I can do about updates during it. They are going to expect me to stay up all night, but I don't have anyone else to come there with me, and I am not going to stay up all night and try to drive home the next afternoon. So I am going to sleep when Kadyn is sleeping. LIke right now, I am going to sleep while Kadyn is sleeping :)