8iRWeiXjcKj9kUz5Tebo4_k_FtY Life with Two Special Needs Children: Seizures or No Seizures? - That Is The Question

Sunday, June 19, 2011

Seizures or No Seizures? - That Is The Question

The strangest thing happened with Caleb tonight at dinner.  It also happened a couple of times over the last few days.

We sat down to eat and I made rice to go with the chicken, green beans and biscuits.  Now, mind you, rice is the only thing Caleb would eat for months on end.  Well, this time and the last time I made rice he was having nothing to do with it.  But that's not the strange thing.

Caleb was trying to tell us that he he only wanted biscuits with honey.  We told him he needed to eat more than just a biscuit with honey.  He finally decided on eating a peanut butter sandwich.  I fixed him a sandwich and he ate it and was ready for his biscuit with honey.  I started fixing a biscuit and put butter on it - my bad for not asking first!  He didn't want butter.  So I passed that biscuit on to Cassidy.  I fixed him a biscuit with just honey and gave it to him.  He took it and became pretty much catatonic.  Tony and I both asked him what was wrong and he wouldn't answer.  When he finally did answer, after about 20 seconds, he said he didn't want to eat the biscuit.  And his mood completely changed.  We then told him it didn't have to eat it and he started crying.  He eventually ate most of it and was fine.

This has happened a couple of different times over the last few days as well.  He will be fine and then catatonic and in a very bad mood!

Caleb's seizures are such we don't always know when they are happening.  While I am grateful that he does not have Gran Mal seizures, I do wish it was easier to tell whether he's having them.  The only way to truly tell if Caleb's having seizures is to have an EEG, of which he's already had eight!  We just had one in April and it was normal.  The levels of his two seizure medications in his blood were a little lower than the previous time we had his levels checked, so because of Caleb's increased aggression and the fact that his levels had decreased, the doctor did order an increase in his two medications.

I have to take Caleb for some more lab work to see what the increase in the medications have done to his levels.  I was ready to take him Friday morning because he has to be fasting, but then looked at the script that the doctor had given me and he didn't write the diagnosis code on the script.  UGGGGHHHHH!!!!  This has happened before and I really should have looked at the script earlier than the day I was planning on taking him!  My bad!!!!  I tried to call the doctor's office and left a message Friday morning and, of course, they didn't call me back!  Double UGGGGHHHHH!!!!!  I will be calling again tomorrow!

Lately, the last few days as well, Caleb has also been taking many, many attempts to finish a thought.  He will start talking and then repeat what he has said multiple times (as many as five times) until he get through his complete thought.  I really wish there was an answer to help our Munchkin!!!!!

There are many times that I wish I could see into Caleb's brain and see exactly what was going on.

1 comment:

Stacie said...

It's so hard to watch your child experience this... hopefully it will improve.