New here! - Dtr had untethering 1 1/2 yrs ago

[Gwentm]

Hi, I'm Gwen. I posted this and realized I forgot to really introduce myself! My daughter Dakota has TCS> So I'm here cuz I need some advice, and not necessarily from medical folks. I'm a nurse, so I know all that, I am looking for the kind of advice only other parents of TCS kids can give. My daughter had the lysis of filum done 1 1/2 yrs ago, when she was 6. Her primary symptoms had been neurogenic bowel and bladder and poor coordination (no reflexes in her legs). Following surgery, she did great, and was down from 5-10 accidents weekly to 2-3. Her constipation issues improved, and she got back some sensation and the reflexes in her legs! So now she's almost 9, and we are back to having at least one accident daily, and I've had to up her Colace from 1 to 2 a day. She also takes Ditropan and is new to Prilosec. She tells me she doesn't always feel that she has to go. We have a watch that alarms every hour to remind her to try to use the restroom, but STILL we have accidents. She has had many changes and challenges recently, and has started seeing a counselor for depression. The Prilosec is helping w/ the stomach pains from anxiety. The kids at school are starting to notice the accidents and th odor, and that has been difficult for her. Additionally, she possibly has ADD and is only reading at a 2nd grade level.
Has anyone has anything similar occur, or heard of something similar? I'm beginning to wonder if the surgery failed. I understand that symptoms can worsen w/ growth spurts, but I hate seeing my little girl embarrassed and sad! Any advice would be greatly appreciated!

[Dodger67]

Welcome.
Unfortunately (or rather fortunately) I have no experience of tethered cord, so I cannot help you with the specifics. However I'm quite sure someone will come along soon who can give you some advice.
In future please use the apropriate section of the forum for specific topics - this one is meant for general introductions.

[Barb]

Hi, I'm Gwen. I posted this and realized I forgot to really introduce myself! My daughter Dakota has TCS> So I'm here cuz I need some advice, and not necessarily from medical folks. I'm a nurse, so I know all that, I am looking for the kind of advice only other parents of TCS kids can give. My daughter had the lysis of filum done 1 1/2 yrs ago, when she was 6. Her primary symptoms had been neurogenic bowel and bladder and poor coordination (no reflexes in her legs). Following surgery, she did great, and was down from 5-10 accidents weekly to 2-3. Her constipation issues improved, and she got back some sensation and the reflexes in her legs! So now she's almost 9, and we are back to having at least one accident daily, and I've had to up her Colace from 1 to 2 a day. She also takes Ditropan and is new to Prilosec. She tells me she doesn't always feel that she has to go. We have a watch that alarms every hour to remind her to try to use the restroom, but STILL we have accidents. She has had many changes and challenges recently, and has started seeing a counselor for depression. The Prilosec is helping w/ the stomach pains from anxiety. The kids at school are starting to notice the accidents and th odor, and that has been difficult for her. Additionally, she possibly has ADD and is only reading at a 2nd grade level.
Has anyone has anything similar occur, or heard of something similar? I'm beginning to wonder if the surgery failed. I understand that symptoms can worsen w/ growth spurts, but I hate seeing my little girl embarrassed and sad! Any advice would be greatly appreciated!
First, welcome. Second, we are dealing with a lot of TCS related things this past year as well. When was the last time you had an MRI to check the amount of retethering that has occured?