Sunday, January 18, 2009

Hunter News

Hunter is having a bit of a rough time. Last Wednesday I am 99% sure he had a small seizure. That is not so bad. It is in the fact that he is on seizure meds so for him to have another one is not so good, but at least it was not a big 95 tonic colonic seizure that lands us in the PICU for a week! Well ever since his last big seizure in November, his feet have been borderline on being bad. Well after this last one on Wedensday, they are BAD! When we got to the ER (the neurologist wanted to see him, but we were told to go home before they even got there), his left foot turned black. It would go in waves of color change between the black and bright red, but it stayed really really cold while his right foot was HOT and bright red. The ER docotr dismissed it becasue this has been an on going issue (the color change) since June. Well on Friday I took him back to his pediatrician. Not only was it time for our 2 week check up (yes we go every 2 weeks. The kid is odd so a doctor seeing him every 2 weeks keeps worry away from everyone. It is a long story so that is all I need to give now!). The other reason though is that he had been spending most of his days in a ball and screaming in pain from his feet. We had all kinds of nasty color changes on both feet, and lots of screaming so I needed someone to see him that had a brain! Okay ER doctors have brains, they see a lot of kids and Hunter is weird, but being dismissed and told that he had toricolis when he had a seizure makes me mad! His pediatrican agreed that this is not good having him in a ball and that he was in a lot of pain. He told me to call the pain clinic and try to get him seen. We didn't have great options. Come in and sit unitl Tuesday or stay home and deal with it.
The head of the pain clinic is a wonderful lady and she agreed that it is not a great choice. We can keep him at home and deal with it or sit in a hospital were is is not going to be comfortable anyway. So we are waiting until Tuesday when we have an appointment with out doctor. Our pain clinic doctor has already tried everything he can to help him with this issue and nothing has worked for very long. We are at the point now were they need to do an epidural to see what that can tell them. It will give him (hopefully) relief from the pain, but also it will tell them were the pain is coming from as far as is it the sympathetic or parasympathetic nervous system that is causign this (I think that is what he said any way!). So that might be what we have to do at this point to help him. He is not sleeping for more that 2 hours at a time even at night and when he tries to walk, it makes the pain and color worse.
I know that this is nothing compared to what some other mom's are going through, but it is still frustrating that I can't do anything for him right now. I will keep updating when we know more.

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