Hi everyone

[diburns]

:signs116: Hi everyone. Although I have been part of the SBA parent listserv forever, I am new to this site. I am the parent of a 12 year-old daughter w/ L-4/5 lesion level. She has a VP shunt, no malfunctions (knock on wood) and does pretty well in school, other than organization issues.

We are having some concerns about moving through pre-teen years. She is not very good about taking care of her personal needs, even though we have explained the reason for it, ad nauseum. Anyone have any suggestions? Do I just need to relax and wait for maturity????

[Dodger67]

Welcome on board! :happy065:

You'll find quite a few threads about teen issues here.
You just have to keep on top of your teen's issues until she outgrows them.
Give her the space she needs to develop and grow into an adult, but don't let her health suffer while she's struggling through the issues.
It's not easy, but we'll be here for you whenever you need us.

I'm Roger, 42 years old, South African, unmarried but have a gf, father of none but uncle of five.
IT nerd and wannabe high school teacher.
Myelomeningocele at L3, no hydrocephalus, no Chiari or tethered cord issues, fulltime wheelchair user.

[LisaJoy]

Hi, and welcome! This subject comes up every few months, so you are not alone. This seems to be a pretty normal behavior for all kids of that age; it just has the potential for serious health consequences for kids with sb, which makes it a lot harder for parents to "just relax"! By the way, I understand this (compliance with medical regimen) is also a problem for pre-teen kids with insulin-dependent diabetes. Unfortunately, I can't help you with it (not a parent), but hopefully some others will chime in soon.

[Emm]

Just to say welcome to this very informative site.
Teen years are bad enough at the best of times having had three children myself, but dealing with health issues as well must be very trying and tiring.
Hang on in there, plenty of advice I'm sure from others like yourself.:D

[diburns]

Thanks for the welcome and encouragement. I keep hoping things will improve, and I have to say, she is better than a year ago, when she was lying about cathing pretty often.

We are also facing her losing ambulation ability, as she is in a catch 22 with crouching, causing muscles to get tighter and imbalanced, causing worsening crouching.... Stretching helps, but we are trying to get back to a bi-weekly massage to help keep her muscles looser and more balanced. We have done this at different times in the past, but had gotten away from it in the past year when our therapist went to a spa setting and was charging 3x as much! Wish us luck.

[misty]

Does she wear AFO's? I crouch pretty badly when I don't wear mine, but when I wear them I'm pretty straight. Maybe she needs more support to stop the crouching.

[LisaJoy]

Does she have access to a swimming pool? Hydrotherapy would be great for her, b/c the water is usually kept warmer than a typical indoor heated pool. But even just regular stretching in a heated pool would probably help.

I'm a big fan of the water -- swimming is the only form of exercise I can do and I'm in the water 90 minutes, 3 or 4 times a week. I credit it with keeping my walking ability up.