[bethy1]

Hi, ive just joined this site and was wandering if there are any parents of young children with injury? My daughter is classed as having a spinal cord injury following a spinal tumour when she was a baby. Shes now 6 and her injury is T8-T10, paraplegic, scoliosis, bowell and bladder management etc. Looking to meet other parents in a similar situation. How do you explain things to youre child? choosing the right equipment for a 6 going on 26 year old girl lol.

Look forward to hearing from you Beth xxxxxx

[sweeper]

Hi Beth
Just browsing and noticed that you got no replys. We have a group here that works with children that I thought you may like to contact. They may have email details of other parents or answers to some of your queries. Hope this helps..... www.chaelicampaign.co.za
V

[yecaliam]

bethy1, on May 7 2009, 05:45 AM, said:

Hi, ive just joined this site and was wandering if there are any parents of young children with injury? My daughter is classed as having a spinal cord injury following a spinal tumour when she was a baby. Shes now 6 and her injury is T8-T10, paraplegic, scoliosis, bowell and bladder management etc. Looking to meet other parents in a similar situation. How do you explain things to youre child? choosing the right equipment for a 6 going on 26 year old girl lol.

Look forward to hearing from you Beth xxxxxx

I am the grandmother of a 2 1/2 year boy who in February 2009 was diagnosed with a cancerous tumor in his spinal cord. My grandson had surgery at Stanford in California where the tumor was removed from T2 to T11. He was in the hospital for two weeks then we were sent home with a toddler in an infants body. He could not move from the waist down. He now can crawl, pull up and take small steps with assist. His 3 month followup appointment at Stanford was in this past May where he got another MRI. The MRI showed that the cancer had not changed but that some syrinx had grown in the spinal cord where the tumor had been removed. If the syrinx grow...they would have to be removed surgically. He is currently getting stronger...he has mastered use of his wheelchair. He also has a Stander and a Gait Trainer...but has fits when put into them. He has gotten some physical therapy, but the insurance policy therapy limit has been used, now paying for therapy out of pocket. He still has not control of bowels or bladder....we have to give him a suppository daily. He has lots of spasticity in both legs...the doctors are talking about medication to help that. The tumor has caused scoliosis...which will continue to be monitored in months to come. My grandson is very accepting of his situation...that is a positive in that he is a toddler and knows no difference. He does understand that he has a owie on his back and that his legs don't work. He does get frustrated... but gets over it quickly... Seems everything we do and learn is by trial and error... It has been tough!

[Becky (Tobys mum)]

Hi Iam new to this site, my son is 3 and has no feeling from above the stomac down after an illness called ADEM where his antibodies attacked his spine and brain in 24hrs 6months ago but fingers crossed the brain seems ok now.

He at first was completly floppy he had to learn to sit up and control his balance, hes still wobbly but can hold himself, hes so confident and bubbly I dont no how I wouldve coped without him carrying me along.

He also has no control of badder or bowel but after a meeting today I am going to try control this by sitting him on the toilet 10mins after meals and getting him to blow etc to try push a poo out, they say he will do it at the same time every day n get him back out of nappies as I cant get the laxatives under control plus Im gettin fed up off having to change him on pubic toilets floor.

Any1 with any advice or products of ride on toys that support him would be lovely. He was in rehab for 3 months and now starting to get used to his newlife. He bum shuffles everywhere but his trousers fall down im forever pulling them up, n he is now learning to pull himself up so he can soon get himself on the chair.

Nice to find this site
Becky

[USMC_FMAgirl058]

I'm not a parent, but I was a kid when I had my accident and became a paraplegic, so I can tell you something of the child's angle.

To tell you the truth, kids tend to cope with things like this easier in the beginning. When I first woke up after being in an induced coma for two weeks, I just sort of went with it. I didn't get the chance to slow down and think about it, so I just understood that I had to deal with it. There weren't any moments where I asked why. Of course, I was also on heavy pain killers, so I doubt I was coherent enough to actually think like that, but it really is just something that becomes accepted after a while.

When it comes to bowel and bladder control, that took me a while to understand and even now I slack off some times. For the kid it becomes part of their daily routine, and just like you helping them dress and everything else you do, eventually they'll probably pick it up themselves. It took me a while to learn how to cath myself, but it comes with practice and I wouldn't worry if they don't pick it up quickly. When they do gain interest in taking care of themselves, do it the same way you would with potty training. Check on them, help them if needed. Thats about it.

I think the hardest part for parents is that they have to watch their kids struggle. It really is something that you have to do or independence won't come easy. There are things that will totally surprise you that they just picked up. I managed to learn how to butt-bump up and down steps because my mom wasn't coming to get me fast enough.

Personally, I would ask you as parents to be there more psychologically there for your kids. The puberty/middle school age is incredibly hard for kids with disabilities if they are mixed into a normal crowd. Thats when a kid wants to fit in the most but a chair can seriously make them feel out of the norm. If you can, find other kids who are in similar situations to just hang out with them and go through that faze with them.

[Becky (Tobys mum)]

Thanks for your advice, Toby is so independant im sure 1day soon im gonna find him on th floor in his bedroom as i havent got him out of bed quick enough. He is learning to lift his bottom off the floor at the moment then hopefully he'll get om to the sofe by going up blocks and in to his chair the same way.

It would be nice to fine other children his age in the situation that he is.

[bethy1]

yecaliam, on Jun 2 2009, 03:21 AM, said:

bethy1, on May 7 2009, 05:45 AM, said:

Hi, ive just joined this site and was wandering if there are any parents of young children with injury? My daughter is classed as having a spinal cord injury following a spinal tumour when she was a baby. Shes now 6 and her injury is T8-T10, paraplegic, scoliosis, bowell and bladder management etc. Looking to meet other parents in a similar situation. How do you explain things to youre child? choosing the right equipment for a 6 going on 26 year old girl lol.

Look forward to hearing from you Beth xxxxxx

I am the grandmother of a 2 1/2 year boy who in February 2009 was diagnosed with a cancerous tumor in his spinal cord. My grandson had surgery at Stanford in California where the tumor was removed from T2 to T11. He was in the hospital for two weeks then we were sent home with a toddler in an infants body. He could not move from the waist down. He now can crawl, pull up and take small steps with assist. His 3 month followup appointment at Stanford was in this past May where he got another MRI. The MRI showed that the cancer had not changed but that some syrinx had grown in the spinal cord where the tumor had been removed. If the syrinx grow...they would have to be removed surgically. He is currently getting stronger...he has mastered use of his wheelchair. He also has a Stander and a Gait Trainer...but has fits when put into them. He has gotten some physical therapy, but the insurance policy therapy limit has been used, now paying for therapy out of pocket. He still has not control of bowels or bladder....we have to give him a suppository daily. He has lots of spasticity in both legs...the doctors are talking about medication to help that. The tumor has caused scoliosis...which will continue to be monitored in months to come. My grandson is very accepting of his situation...that is a positive in that he is a toddler and knows no difference. He does understand that he has a owie on his back and that his legs don't work. He does get frustrated... but gets over it quickly... Seems everything we do and learn is by trial and error... It has been tough!

Great to hear about youre grandson. Megan had Neuroblastoma 1V aged 6 months. Shes has to be catheterised every 4 hours and have daily suppository also. She is beginning to show an interest in doing all this herself which we are encouraging. She also has lots of spasms in her legs, this has been helped with Botox injections. Megan was also diagnosed with scoliosis aged 18 months , her curve hit 70 degree by the time she was 3 and she had spinal growth rods inserted. She now has surgery to make them longer every 6-9 months. She is in the process of being fitted for a new wheelchair, something very speedy, lightweight and funky. The guy who has been helping us is a full time wheelchair user and was a pro basketball player. He saw Megan in the new chair yesterday and has said she definately has potential to be a pro with sports. Shes very speedy and can handle the chair at great speeds and how she controls around corners etc. This has made me feel very posistive. Look forward to hearing how youre grandson is getting on Bethxx

[charlie111t]

Hi Beth,

My wife and I have custody of our graddaughter who is 4 yrs old. She was abused by a man who broke her neck at C2 when she was 14 months old. She is a qaud, vent dependent and very curious and needs around the clock help. She is an amazing, beautiful little girl with an incrediable attitude and wants to know about everything. Finding things she can do independently has been a challenge. She just sarted public school and we are very excited and somewhat scared as well. I too have a spinal cord injury, my accident happedned when I was 14, was on the back of a motorcycle with a older guy who wrecked us doing 100 + ;eaving us both paralized. I am a T4 and have been in a chair for 31 years. If you have any questions please feel free to ask.

Charlie

bethy1, on 07 May 2009 - 12:45 PM, said:

Hi, ive just joined this site and was wandering if there are any parents of young children with injury? My daughter is classed as having a spinal cord injury following a spinal tumour when she was a baby. Shes now 6 and her injury is T8-T10, paraplegic, scoliosis, bowell and bladder management etc. Looking to meet other parents in a similar situation. How do you explain things to youre child? choosing the right equipment for a 6 going on 26 year old girl lol.

Look forward to hearing from you Beth xxxxxx