Anyone out there with a child who has Segmental Spinal Dysgenesis just looking for someone to talk too?

Jennifer Burgsma - posted on 06/22/2012

Pam will you email me so we can discuss more jenniferburgsma@gmail.com or find me on FB? My son can't take ditropan it made him sick they had him on oxybutin but it was giving him night terrors so they took him off of it for now until we can work on getting him cathing regularily. I stopped cathing when he was a baby because he would get so many UTI's.
@ a year old really? They are talking about doing a fusion and rod when my son is older 10 or so I think is the goal. They want to allow him to grow as much as possible.

Pam - posted on 06/21/2012

I thought we were the only one out there too! My son is 5 1/2 and is STILL wearing diapers but obviously I would love to get him on some kind of potty routine but its so hard when they are incontinent. They told me to increase his ditropan so I did and it dried him up so much and made him so backed up that he became sick. Then they told me to go back to the usual dose but he still goes so spuratic that I have to keep a diaper on him. We do cathing on him every 4 hours during the day.
We live in Virginia, USA. What is a gibbus? My son has a rod in his back to straighten his spine. He had that surgery when he was 1 yr. old. He hasn't had any major surgeries since except for hernia surgeries. We have an x-ray taken on his back every 6 months just to make sure there is no tethering and to make sure he doesn't need any more surgeries any time soon. I think eventually he will need another surgery.

Jennifer Burgsma - posted on 06/21/2012

Hi Pam wow I thought I was the only one out there? My son has full upper body function he uses a wheelchair and the Rifton Dynamic Stander to get around. He starts Pre-K next year still wearing diapers right now because cathing upsets him so badly it was causing him a great deal of anxiety. So Doc wants to wait. How about you son? He starts K next year? Where do you guys live? We are in Alberta Canada. Does he have a gibbus? Will he need surgery on his spine too?

Pam - posted on 06/21/2012

My son has SSD. He has full upper body movement. He is 5 years old and uses a wheelchair and a rabbit stander to get around. He begins kindergarten this year. He is smart and has quite a sense of humor. I would love to talk to you further about your son. I am wondering how to handle my son's incontinence especially when he begins school. Does your son have this issue and what are you doing?

Jennifer Burgsma - posted on 04/22/2012

SSD is similar to SB but it's seems SSD is pretty rare you can't find much info about it other then what the doctors tell you. Your son is high functioning? Ty is too he will be 4 in August and starting pre-school I'm scared out of my mind at the thought of him going to school for the most part Ty is just like typical children but is in a wheelchair will the kids treat him well or will he be an outcast because he is different? They have mentioned surgery for Ty as well his scoliosis isn't to bad right now its that fact his spine is in 2 pieces with only a chunk of fat and bone holding it together that is more concerning. Would you mind telling me a little about your son's life and how he has managed with things? When did he start asking you why he was different? How did you handle it? Thank you Adrienne

Adrienne - posted on 04/21/2012

Don't know what that is but my son has spina bifda , hes 12 now , uses a wheelchair , hes very high functioning , and super sweet lol., he's had major spinal sugery to correct scoliosis. how are you and yours?