In the past few weeks, he's decided he's done eating...so, it's become a chore, again, to feed him. We do have the g-tube and can feed him the ketocal drink through the tube, but that's supposed to be a last resort for us; we wanted to use it when he's unable to eat because he's had a massive seizure that knocks him out.
His seizures are still around and have now changed...again. They are completely silent sometimes. If we aren't near him, we don't know they are happening or have happened unless we come and find him dazed with his heart racing. The seizures he has overnight - silent. Some, I can hear, but others...I have no idea. The past few nights, I've actually slept from 1am to 6 and not gotten up for a seizure. While that would be great, I know he is having them and I can't hear it. How? When I go to check on him when I wake up, he's on the opposite side of the bed, contorted. Sometimes, he has only moved a bit, but you can just tell he hadn't slept a lot the night before.
He's also lost some motor skills and is back to being the "drunk sailor" again; he's very wobbly on his feet and is falling a lot. He's also back to having a few drop seizures during the day.
So, I am hoping he needs a caloric intake change. Maybe he's grown so much and gained so much weight, we need to fix the fat intake of the diet to get him where he needs to be. He's getting between 1200 and 1500ml of water a day...the required amount is 1500ml. The Keto-sticks say he has a large amount of ketones...so, who knows.
We know the diet is working...it has curbed the seizures for the most part...but he's back to "not being here" sometimes; not as alert.
To top it off, the State of Wisconsin BadgerCarePlus is giving us a hard time about getting more respite care. We get a few hours a week now, but with the g-tube and the diet and amount of seizures, we tried in October to get more hours. The letter our care provider received was borderline abusive.
Whomever wrote it said it was impossible that he was having up to 60 seizures a day because after 9, we should be bringing him to the hospital. They want all our doctor records and our seizure log.
They just don't get it.
They have no clue about Lennox-Gastaut and what my son has gone through and are going to call me and my wife liars?
I want to bring Gio to this person's office and lock him in there with her for 10 minutes. I have a feeling, we would get what we need in less than 5.
