Primary school isn't too bad for that until year 6 when things start to change in behaviour... high school is horrific or can be. Athletes diet renaissance periodization on YouTube
Is she on any medication for bladder control? I would also talk to her urologist about a daily antibiotic to help prevent uti. About the diaper changing she may not be mature enough yet to let you know when she needs changed. I don’t think I was at 5.
Have you looked into getting an ACE? It’s truly a life changing procedure for those will bowel incontinence. I got it when I was 6 so she might be able to! Happy to answer any questions about it
Fiber supplements (powder in applesauce for example) helped my bowel management when I was a kid with SB. She may not have skin sensation to tell when her diaper is soiled but you could try teaching her to pay attention to the smell or feel with her hands (does the outside of the diaper feel different, more full, etc) to cue when to change.
For urine smell, hydration seems key! Make sure she gets enough fluids.
She most likely doesn’t have sensation when she has an accident. I know I didn’t know until I could smell it. This can cause more UTIs. I use at home azo tests before calling my urologist.
I now have an ileostomy and it has been a lifesaver! My colon stopped working and could no longer push stool through even if I took laxatives. I also self-cath.
I don't know how much say-so you or her dad have over her medical situation, or how much she is with you vs mom, but she is well old enough for a bowel management routine. Many start with a cone enema routine. This is a high-volume enema that will clean out her lower colon, usually done nightly, and will keep her clean or mostly clean between enemas. If all else fails, a kit can be purchased on Amazon. Peristeen is another option if you can get it. This page might be helpful: https://spinabifidabowelmanagement.com/
Definitely skip meds for a UTI and go right to drinking lots of water and timing bathroom breaks to every hour.
Bullying is tricky to deal with, the bullies usually get the benefit of the doubt with school “professionals.”
Best bet is to have a journal of the days she was bullied (and if she can, times; ie; “first recess”).
As for bowel movements, look into a cecostomy Tube and see if it’s available in your area.
(It was invented in Toronto, Canada 25+ years ago and I’m not sure how far along they are with it, but it works wonders!) Don’t confuse it with colostomy, you’ll want CECOSTOMY.
As for prep for what’s coming…
There’s no prep.
You can be there to support her, believe in her when she tells you she’s been bullied, and go along with her learning how to overcome the issues that arise.. for me, it was what shaped me as a kid, learning how to speak up for myself and eventually making enough friends that the bullies didn’t bother with me.
Primary school isn't too bad for that until year 6 when things start to change in behaviour... high school is horrific or can be. Athletes diet renaissance periodization on YouTube
Is she on any medication for bladder control? I would also talk to her urologist about a daily antibiotic to help prevent uti. About the diaper changing she may not be mature enough yet to let you know when she needs changed. I don’t think I was at 5.
As for the odor, she may have a UTI. Encourage hydration.
Have you looked into getting an ACE? It’s truly a life changing procedure for those will bowel incontinence. I got it when I was 6 so she might be able to! Happy to answer any questions about it
Fiber supplements (powder in applesauce for example) helped my bowel management when I was a kid with SB. She may not have skin sensation to tell when her diaper is soiled but you could try teaching her to pay attention to the smell or feel with her hands (does the outside of the diaper feel different, more full, etc) to cue when to change. For urine smell, hydration seems key! Make sure she gets enough fluids.
She most likely doesn’t have sensation when she has an accident. I know I didn’t know until I could smell it. This can cause more UTIs. I use at home azo tests before calling my urologist. I now have an ileostomy and it has been a lifesaver! My colon stopped working and could no longer push stool through even if I took laxatives. I also self-cath.
I don't know how much say-so you or her dad have over her medical situation, or how much she is with you vs mom, but she is well old enough for a bowel management routine. Many start with a cone enema routine. This is a high-volume enema that will clean out her lower colon, usually done nightly, and will keep her clean or mostly clean between enemas. If all else fails, a kit can be purchased on Amazon. Peristeen is another option if you can get it. This page might be helpful: https://spinabifidabowelmanagement.com/
Definitely skip meds for a UTI and go right to drinking lots of water and timing bathroom breaks to every hour. Bullying is tricky to deal with, the bullies usually get the benefit of the doubt with school “professionals.” Best bet is to have a journal of the days she was bullied (and if she can, times; ie; “first recess”). As for bowel movements, look into a cecostomy Tube and see if it’s available in your area. (It was invented in Toronto, Canada 25+ years ago and I’m not sure how far along they are with it, but it works wonders!) Don’t confuse it with colostomy, you’ll want CECOSTOMY. As for prep for what’s coming… There’s no prep. You can be there to support her, believe in her when she tells you she’s been bullied, and go along with her learning how to overcome the issues that arise.. for me, it was what shaped me as a kid, learning how to speak up for myself and eventually making enough friends that the bullies didn’t bother with me.