Kaden has now been on the ACTH injections for 3 weeks. The wonderful news to all this is that the seizures have completely stopped!! Yep, after about the fifth injection they were gone! The bad news...... he is completely miserable and so are we!!! The ACTH has tons of side effects!! One of the very common ones is irritability!! I don't think that word describes how Kaden feels. Not even close!! If screaming for hours and hours each day and sleeping 5-6 hours in a 24 hour period is irritability then i would hate to see what agony looks like! We are exhausted and so is he. We have had to call doctors at home over this it has gotten so bad. Our pediatrician sent us straight to the hospital the other day cause he was just sure something else must be wrong. But after all the tests were done the consensus was "irritability". We now have him on a sedative to help keep him a little calmer but this really has not done a thing yet.
Today neurology told us we had a minimum of 6 more weeks to go. I am tired just thinking of that!!! Nothing we can do but trudge forward! Kaden has a swallowing evaluation next Tuesday and then will see a speech pathologist once a week. Not for speech but to try and help get him eating better. He has low musculature in his tongue we are told from the CP. This makes it difficult for him to eat baby food. Hopefully they can give us some pointers to get him eating better.
Oh Tiff Jacob had colic and that was hard. I can only imagine what you are going through. I have two more weeks off work. I would be more then happy to take a few hours so you could have a break....please let me. Just let me know when. We will continue to pray for you.
ReplyDeleteI can't imagine what you are all going through. I'm here anytime I can do anything for you. Just holler! In the meantime, prayers continue for your family. Love ya, Tiff!
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