I have myself totally convinced that Jacob may be having Infantile Spasms. Not sure if I even mentioned this before. Last Thursday when the Early Interventionist was working with Jacob, toward the end of her hour she came over to me and tells me, "He seems to be having more seizure activity today and I have noticed it more in the last 2 weeks than I've seen him have before." I look at her confused. I have heard her say things to me in the past like "seems like he has had less seizure activity today." So I finally ask her that day what the heck she is talking about. He is on seizure meds for an abnormal EEG, but I have never seen him have a "seizure".
She explains to me that she think he is having mini cluster seizures or what she referred to as break through seizures. So, I asked her what she though a seizure was . She tells me to watch him. She said he will go from doing whatever he is doing then he will stiffen his arms and/or legs. Usually his arms go strait in the air and his head arches back a little and turns slightly to the side. When this happens he stops drooling and making noise. The entire thing happens in less than 5 seconds. Then he will go back to what he is doing and in a minute he will do this 7 or 8 times. Then he will stop for a little bit. At this point he will usually loose focus on what we are trying to get him to do. Then it will happen all over again.
Things that concern me: Of course you know I researched the web and youtube to see what an Infantile Spasm was. A. Most people mistake this 'seizure' as a startle reflex, or in Jacob's case as spastic movements. B. the arching back stiffness is mistaken as reflux. Though Jacob enjoys vomiting when he is sick, when he is well he does not vomit at all. He has had several upper GI studies that showed minimal reflux, that even the doctor said the minimal reflux they see would not usually cause the projectile vomiting, screaming, and arching he has done for month and months. C. Most of these 'seisures' start occurring between 6-8 months. Some of his really jerky movements that I considered to be spastic movements because he was getting bigger started around this time to his adjusted age. He should be 1 on 10-10-10 if they were born on their projected due date.
So I watch theses videos of kids on youtube doing similar things to what Jacob does.It seems the more stimulated or noisy the room is the more spastic movements I would notice. Just the more and more I watch him throwing his arms out for 5 seconds out of no where and doing it 8 or 9 times in a row the more I have convinced myself that maybe he really is having seizures.
His brain damage is so extensive, that seizures are very common and I considered myself very lucky that he had not had any seizures....well, if what the Early Interventionist thinks is seizures is trues then he has been having them for many months and I never caught on to it not being normal for him and his CP. I trust her option. She is a RN and has been one for many years. She worked most of her career in the NICU. She never told me Infantile Spasms, but when explaining it to a friend, she asked if that is what it was because she knew someone else who had a kid that did the same thing.
The bad thing about theses mini cluster seizures is that if they are not controlled they can cause more brain damage....not that Jacob does not already have enough.....they cause mental retardation, blindness, and in a child that don't already have it, it can lead to CP.
Hmm. Jacob is already considered blind, which could be from his initial damage and I really have no clue where he is cognitively. He seems to some what know what is going on around him.
I called the neurologist right after she left last Thursday. Of course no one called me back until last Friday, then they said they would get him in for a video EEG ASAP 1st thing next week. Monday passes....I call and I am told the girl who does the schedule will call me back, Tuesday passes, I call again Wednesday and they tell me once again that the girl who does the schedule will call back and that they faxed the Rx over to the hospital. On Thursday I decided just to call the hospital myself. Apparently on the Rx they sent over read this: they wrote "scheduled for this week" So the lady that is suppose to call me thought it had been scheduled already. So I ask for an appointment and she says well, we definitely are not going to get him in this week, or next...so he has an appointment for a 24hr videoed EEG on the 25th of this month :-/ I think I will call the Doctor's office again this week to see if they can pull some strings. That office staff is horrible though, and I think I will be scheduling a new patient visit with a different pediatric neurologist in the near future. I don't care if I have to drive a little further to get there. Hell all his other specialist are in Tampa or Orlando.
I hope I am over reacting and they do not think it is seizures and that it is truly just spastic movements, but I suppose we will see.
This is a link that has some info on Infantile Spasms: