AnonymousJanuary 9, 2009 at 10:02 am
We are not sure what my son has but it is similar to GBS and/or Transverse Myelitis. We are down to doing intermittent catheterization in the morning now.
His post void residual numbers are all below 20cc the rest of the day so we could stop but in the a.m. he is generally 40-60 cc’s. There doesn’t seem to be a firm number for kids but his doctor likes 20 cc.
Did any of you need to do intermittent cathing? If so, did you get to stop and at what post void number?
He is still wetting his pull up a few nights a week. We plan to stop using them tonight to see if he can be re-trained. He only has 10-20 cc’s in their when he has anything. He is ready to try. He had a ton more a few weeks ago.
Any advice or sharing of experiences with bladder issues would be appreciated!
January 9, 2009 at 10:11 am
We were spared being cathed, so I cannot give you any advice on that. However, I do have a friend whose son had issues with bed wetting at 14 (obviously un related to your problem) and they had a monitor of sorts that her son wore. It worked as an alarm and went off at any sign of urination in the night. It woke him and allowed him to stop the sensation and get up to use the bathroom. Don’t know if this is something you could use, just thought I would offer.
On a positive note, it truly is amazing at the speed your son is recovering!! So happy for you.
Dawn Kevies mom
AnonymousJanuary 9, 2009 at 10:12 am
Hello! I was reading your other posting but don’t have the experience in this to answer your question. But I just want to let you know that I am praying for your son and hope he gets well soon. You have certainly been through quite a bit. Any time your child gets sick that takes a huge toll. You worry sick and can’t help them like we as mother’s normally can! Wishing you my best! Sending Cyber Hugs your way!
AnonymousJanuary 9, 2009 at 11:08 am
I have GBS and had a catheter in place the first 4 weeks. When it was removed I could not pass all the urine from the bladder and was catheterized 2 x daily for two weeks then went to once daily for another 2 1/2 weeks and had to wear depends 24 hrs a day. Did not have to be catheterized after I left the hospital but wore the depends 24 hrs. a day for the first couple of months. I began to control the urine during the day but it took another couple of months to have control through the night as bladder was functioning at 30% and anything over that would leak out. It took months but with GBS improvement, bladder training and medication I now have control and depends are a thing of the past.
I don’t recall my numbers.
Seems like your son has made steady improvement with daily control and less wetting through the night.
Good luck to your son that he continues to improve and will be free of those pull ups soon.
AnonymousJanuary 10, 2009 at 4:33 am
This too will most likely improve but it may take more time. Remember that the nerves are the communication system for everything in a body. I have a kidney that some days is just “tired” and slows down for awhile. These diseases really test our patience 😮 I wish your son “well” 😀
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