Infantile Spasms and G Tube

It turns out Hayden's seizures are another form of epilepsy called infantile spasms. Which doesn't actually sound serious, but is. It is common for infants with infantile spasms to have developmental delays and to even regress developmentally until the seizures are controlled. Because these seizures can be hard to control, 20% of all infants with infantile spasms die before age 5. 75% develop mental retardation of some form, and 50% develop some other form of seizures. Hayden does have another form of seizure that is being well controlled with Phenobarbital. Hayden's seizures typically occur soon after he wakes up. I am beginning to be able to tell when he is going to have a spasm by the way he wakes up. Nothing notable happens, there is just something about him is different. They usually last for a few seconds, but happen in clusters that last several minutes. Hayden's neurologist (Dr. Palat) will start him on a new medicine, Keppra, tonight and she will order a repeat EEG soon to see if it is working. There are other medicines out there if this doesn't work, but they can cause issues with vision and damage to retinas. So, we are keeping our fingers crossed.

This afternoon, Hayden's gastroenterologist (Dr. DiMeo) stopped by and discussed a feeding tube for Hayden. So, tomorrow at 2 pm, Hayden will be getting a feeding tube. We worked so hard for so long to avoid it, so even though I do believe it will be best for Hayden, I am still disappointed that he has to go to the O.R. for the 11th time in 20 months. You'd think by now, I'd be used to this, but surgery is still surgery and as long as there are risks, I will worry about my precious boy.