8iRWeiXjcKj9kUz5Tebo4_k_FtY Life with Three Special Needs Children: Caleb EEG #8!

Thursday, April 14, 2011

Caleb EEG #8!

Caleb has had so many EEGs that I have lost count, but I think this is number 7.  His first was when he was three years old and we had to keep him up for 24 hours, which ended up being more like 25 or 26 when all was said and done.  I remember spending the car ride to the doctor's office sitting in the back seat with him with a baggie of ice and putting it on his face every time he tried to fall asleep.

Caleb then had another one when he was 7, which was another 24 hour sleep deprived one, before he was ordred to have the Video EEG that I talked about here

Then when Caleb was hospitalized in October of 2009, he ended up having two during the five days he was at St. Francis.

Then after having the neuropsych testing and being given the diagnosis of Childhood Disintegrative Disorder and being urged to look further into a medical cause for Caleb's regression, his neurologist ordered a spinal tap and another EEG, which would be number six.

Then during Caleb's hospitalization in August of last year we had number seven.

So here we are preparing for EEG number eight in six years!!!

I really wish there was some other we could figure out if his seizures were under control rather than having to have him stay up all night (which in turn requires Tony and/or I to stay up with him), get hooked up to a ton of leads and have his brain waves monitored.  But, that's not the case!!! 

I am very thankful for Caleb's doctor who takes seriously what we are going through with Caleb.

It is now 4:33 a.m.  We are not scheduled to arrive at the hospital until 9 for a 11 procedure.  Caleb has already started complaining that he is hungry and he cannot eat or have anything to drink now.  He can have a sip of water to take his seizure meds at 6, but that is it.  It's going to be a very long day!!!!

Tony stayed up with Caleb the beginning of the night while I tried to sleep.  Tried to sleep are the key words.  Our dog, Bailey, was very stressed with what was going on and kept jumping up and down from the bed and when she would be on the bed, she was either right next to me or standing over my head!  It was very difficult to try and sleep with that going on, so I ended up putting her in the kids' bathroom!  A mom's got to do what a mom's got to do, right?  I ended up getting up about 1:30 and Tony is upstairs sleeping now so that he'll be rested enough to drive to the hospital.

I pray that we find some answers and that it's just a matter of changing/adjusting Caleb's seizures meds and we can have our loving, very less irritable, Caleb back.

No comments: