Marlee/back pain?

[Guest guest]

Hello everyone!

I haven't posted for a while, but have been reading posts for some time. I

notice that a few of the adult members have posted about eposodic or even

chronic pain after detethering.

It has been a year since my daugher's surgery and I felt felt from time to time

that she has had pain. She is only 16 months old and can't talk, so this is

really difficult to pinpoint. An example of my thinking she has pain is that

once in a while she does not sleep well and jumps in her sleep. At times this

is followed by writhing around and crying out in her sleep. When she is in one

of these episodes this will go on ALL NIGHT! Last Sat night she did this and

was very fussy all day Sun. I staggered doses of Tylenol and Motrin. This did

not help. When I was dressing her for bed she was really fussing and I just

asked her " what hurts " she put her hand on her back....I put her on a hot water

bottle and she laid there for 45 min. and watched football with her Dad. I

think we all know she would much rather be up tearing the house up....I took her

to the Dr on Mon and he ordered an MRI for this Wed. We also have an

appointment to see the nrsgn on Feb 2nd for her yearly follow up. My PCP has

said to try benadryl at bedtime and if that doesn't work he will order diazapam

for when she has this problem. He said he thinks she is having spasms. Does

this sound right? Does anyone have any suggestions as to what could be going on

or what to do about it?

Thanks!

Mom to Marlee 16 mos. Lipomyelomeningocele, TSC

AFO's, and the longest eyelashes I have ever

seen! Also Mom to Macy 4 (fatty filum)..the

future's first female president and 9

a good student, cheerleader and the best

helper in the world! : 0 )