The continuation of above...
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Friday, February 19, 2010
Kenny's headbanging
This is what every other day brings us with Kenny. This usually starts when he wakes up in the morning to the time he goes to bed at night. When he acts like this, he doesn't want to be held, doesn't want to play, eat, crawl, walk...nothing. He is just unhappy ALL DAY LONG...screaming, crying and headbanging. We put his helmet on him because he will try to bang his head without it and hurt himself. We just don't know what to do for him...and it has been every other day lately. We think its because of his medication for seizures but we are not sure. My heart is breaking for him because there is nothing we do to console him...nothing.
The continuation of above...
The continuation of above...
Written with love by
Michele
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10 comments:
Oh, Michelle. You have so much on you right now.
Did Kenny's doctors every determine whether he is autistic? Could that be the cause?
Also, could you possibly take him off of the seizure medication? If his seizures are petit mal, is it absolutely mandatory for him to take medication?
God bless your family, and stay strong.
They are saying that he does have some autism but dont want to say for sure because it could just be from being a micro preemie...see, even the doctors dont know what to expect from a micro preemie as they get older. This "fit" is happened again yesterday...ALL DAY...he didnt want me to hold him but he didnt want to be put down...he screamed and cried almost all day! I finally put him to bed at 7:30! He woke up at midnight kicking and screaming!
He HAS to take the medication because he does have siezure activity going on...in his brain. He is going to have to get the medication changed again...I think. He is also getting sick again...he was up all night coughing!
Thank you for commenting...I just felt like I had to show you all what we go through with him. I love him so much and it hurts to not be able to help him.
Michelle,
Have you tried deep pressure excercises?
What about a weighted vest?
Another one is swinging. You and your husband wrap him up in a quilt and swing him gently.
I know Ryans OT had several suggestions some worked, some not. It was all trial and error.
Hugs, Heather
I feel sorry for poor Kenny. I also feel sorry for you and your husband. Do you two EVER rest?
How do your other children react when all this is going on? Are they able to move on with their routine?
The question of...do you two ever rest? LOL the answer is not at all. We are literally going all the time...even during the night. But you know what...it's what we were delt with so we are dealing with it. It's better than not having him here at all! The other kids are getting used to Kenny and what he does...its just an everyday thing. We all just deal with it. And, the last question about are they able to move on with their routine...yes. In a way it has been a distraction because I am always trying to calm Kenny down...which I feel bad taking time away from the other kids. Its stressful but we are getting by...its our life...its what we have to do.
Heather, I think that this is going to be the next option...we find that when he wears his winter coat, he is a little more calm...so I think it may help.
I just keep thinking how amazing it is that he can do so much--even bang his head! Remember how tiny and limited he once was? He is a trooper. He will come through this and so will you.
I know this is a bit off the subject, but I remember you mentioning that you had 3 daughters and a son in one bedroom, and 1 daughter in another bedroom.
Have you considered letting your older son have his own room, and putting the girls in the other?
I know you are in tight quarters, but I think your son may appreciate that.
The question of letting Tony have his room...he DOES have his own room mostly by himself with a crib for either Kenny or Gina...in which Kenny sleeps in our bed and Gina in the crib in our room... Tony let Taylor sleep in his room for a few nights...but he it is his room and he is back to sleeping in it. Little Tony is a 12 year old little boy, so I know how important it is for him to have his own room...even though it is shared with a crib (it was hoped that Kenny would be sleeping in it, but he bangs his head on the railing and the coughing and throwing up all night would not be good for him). Thanks for your concern...got it covered! ;)
He is a little miracle...and it does, very much so, amaze me with all that he can do...the headbanging...I can do without...especially if he is hurting himself...he literally has a big bump on the front of his head from banging it...all the time...the helmet helps, but he still has/gets the bump. The screaming and crying that goes with it...along with the not wanting to eat or crawl/walk when he is like this...all day long...I can also do without...see...it is all not healthy for him. He NEEDS to eat to gain weight so his lungs can grow...he can grow and develop...he is, but he is not where he should be...by far. These are my concerns. He has come a very long way but these setbacks can be very dangerous for him...and makes me even more sad for him that he has so many things going on with him...that's all. :(
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