defiant behavior

[wendypal]

HI everyone,
I just wanted to address some issues Sam has been having. First of all his tubing in his neck is tight. The dr.'s are keeping a close eye on that.
Also, his behavior has been really bad lately. Telling me no., running away when I'm talking to him. He is also doing the exact opposite of what I ask.
Today his teacher said she is noticing some behavior change as well. His work qaulity is going down and he is also breaking pencils and walking around the room in order to avoid work. He has been clingier than usual too!
With all this said, these are not normal behaviors for Sam to exibit. I know from some other mom's that behavior changes are sometimes indication that the shunt is malfunctioning?
Have any of you expereinced this and if so what do you tell the dr. to make them tak eyou seriously?
I have a call in and am waiting to hear back. Probably won't be until tomorrow though.
Thanks,
Wendy Pal

[Barb]

C has slit ventricles and I can always tell by his behavior when his vents are 'empty' and 'full'. When they are empty (low amount of fluid) he is cranky, clingy and generally unpleasant. When they are full (too much fluid) he has a hard time concentrating, daydreams, and is just generally 'slower' mentally and physically. This behavior is very cyclical.

I don't know if that really helps you or not but please let us know what happens tomorrow!

[kali]

last year my son had problems with neck pain, and the tubing on his neck looked so tight. He did a lot of sleeping and complained of constant headaches, and would just sit around not doing nothing. which of course is strange for him, becasue he is always moving around, never in one place too long. "We went to the doctor, and he said chances are your son has lift something heavy which moved the tubing in his neck. He was in pain for about a month, then slowly things returned to normal. I was told to lightly massage his neck with warm olive oil. dont know if this is related to your son or not, but I see similar signs.
let us know what is happening

[wendypal]

Hi to all,
Sam is going in for an mri tomorrow. I will let you know what happens. WE are praying that he has just decided to become someone of a behavior problem.
HOwever, a girlfriend of mine reminded me that I complained about the same behavior right before he was symptomatic of tethered cord. AFter the surgery he came back to normal.
Now everyone is noticing a drastic change, so we are just going to check it out.
I'll write tomorrow to let you know.
Wendy p.

[Barb]

Good luck. TC is never fun to deal with! I will for the best~that he is just being a pain right now! :p

[wendypal]

I don't think it's tethered cord, but maybe shunt malfunction.
Isn't it funny with our sb kids we always pray for regular kid stuff
I remember one time Sam had a fever and no obvious symptoms of a cold, etc. I remember telling the pediatrician to please find something wrong, so I wouldn't have to worry about infection in the shunt.
WEll, they checked everything and couldn't find a thing. The dr. then suggested to test him for strep throat. I just laughed. He had just had orange juice with his breakfast and was fine. He definately did not have strep throat. But, lo and behold, they tested him. The dr. came back in dancing. She said, "HE HAS STREP THROAT" Everyone was so excited. Yeah!! She said she has never been excited about someone having strep before. It was funny and we got a 10 day dose of antibiotics and went on with our lives. It was great.
So I do thank you for your prayers that Sam is just being obnoxious. Then I will have to figure out how to snap him out of it, but soooo much better than health issues.
Thanks again everyone.
Wendy

[kali]

I pray everything is fine! we will be waiting to hear from you!!!

[wendypal]

Well,

we went and had the MRI done today. Then because Sam has a programmable shunt, we drove 1 and 1/2 hours to Orlando for the tech to put the little magnet on his head and make sure the setting was right. This took all of 2 minutes. Then we drove home.
Anyway, I haven't heard from the dr. yet, but I did take a peek at the MRI and his ventricles looked good. Soooooo, if there is anything else I don't know. But as far as I could tell I think he's just being a booger!! I feel better though. I can handle behavior problems better than surgery 12 days before Christmas!!
thanks for all your prayers. Merry Christmas to you all.
Wendy p

[Barb]

I am glad that it looks as though things may be OK. We have a programmable too and I know what a pain that is!!!


On Christmas Eve one year, C was in a halo after cervical spinal fusion. He was sitting on the ottoman and since he was so top heavy he sort of just plopped over. The screws popped out of his head and he was so freaked out that he kept shaking the halo making deeper and deeper cuts. He has some nasty looking scars from it now. Christmas time in the hospital is NO FUN.

He actually had a shunt revision on his birthday once too! Boy, talk about your fun times! Everything always seem to happen around a holiday!

[kali]

so happy to know things look good....have a merry xmas