13 replies to this topic

[Craiglwright]

Hi all
My name is craig. I have registered on this site as my 6 year old son has recently had a cancerous tumour removed from his spine and is now a T12/L1 paraplegic due to late diagnosis.
I need advice on anything and everything to help him maintain as normal a life as is possible, Pressure Sores a re a particular concern as he is undergowing Chemotherapy and so is not healing. Also his toes feet and legs seem to be getting stiff no matter how often i do stretches with him.
Incontinece is also an issue we are trying to manage, he has a supra pubic in now, but i just need any tips or advice anyone might have.
He also complains of "wierd fellings" in his legs and feet, is this normal? its been about 3 months since his surgery.

thanks in advance for any info you can pass on to me.

Edited by Craiglwright, 02 December 2011 - 04:51 AM.

[wheeliebear75]

I have an incomplete injury @ L2. It often feels as though I'm wearing a pair of stockings that are several sizes too tight with some red ants dumped in....sort of has a crawling sensation & then there is the pins & needles......so "ants" sums it up pretty well in MY case. But everyone is different. What comes back or doesn't & whether these odd feelings are the return of something or just partial signals getting through is anyone's guess but time will be the ultimate judge. Welcome back.

[wheeliebear75]

I noticed you're in the UK....have you guys checked into this group?

http://www.youtube.c...0?blend=21&ob=5

The group is FOR kids so....? I hope they can give you some leads on other groups....going from AB to w/c isn't easy & I'm sure being so young will add some difficulties but also may afford him some opportunities us old farts aren't able to take advantage of.

[Muskie]

Hi Craig,

First of all, as a father my heart broke when I read your post. I am also new to this world of SCI. I have a 21 year old who is injured. My advice is there is a ton of really knowledgeable people here who can direct you to the right information or pretty darn close. They have help me with so much. Keep up the stretching, stay positive and stay strong for your boy right now he needs Dad to make him feel safe. Take moments to compose yourself my boy yelled at me for crying in front of him. Know that the folks here are here for you. You and your family are in my prayers.

Muskie

[JaneC]

Hi Craig
Welcome to the site I am glad you have found us and we will all try to help in any way we can. I am also injured at L1 but I am incomplete ( spinal cord damaged but not completely severed ) and each person will have different feeling and pain etc.

I imagine the chemotherapy must be very tough and hope that it does it's job and he recovers ok from that. Is he in a district general hospital or a specialist Spinal Injuries Unit ?

I suggest you also contact the Spinal Injuries Association here in the UK, they have a website and also helpline where you could talk to someone who would be able to tell you where you can access support for the whole family. They also have community peer support workers who help people who are not being treated in specialist centres. These are all people who are spinal cord injured so they know what sort of problems you are facing.

My thoughts are with you and I hope you find some help here on the forum.

[Craiglwright]

wheeliebear75, on 02 December 2011 - 10:48 AM, said:

I noticed you're in the UK....have you guys checked into this group?

http://www.youtube.c...0?blend=21&ob=5

The group is FOR kids so....? I hope they can give you some leads on other groups....going from AB to w/c isn't easy & I'm sure being so young will add some difficulties but also may afford him some opportunities us old farts aren't able to take advantage of.

Thanks for your reply wached the vid looks really useful im definatley going to look into that. Thankyou.

JaneC, on 03 December 2011 - 04:22 PM, said:

Hi Craig
Welcome to the site I am glad you have found us and we will all try to help in any way we can. I am also injured at L1 but I am incomplete ( spinal cord damaged but not completely severed ) and each person will have different feeling and pain etc.

I imagine the chemotherapy must be very tough and hope that it does it's job and he recovers ok from that. Is he in a district general hospital or a specialist Spinal Injuries Unit ?

I suggest you also contact the Spinal Injuries Association here in the UK, they have a website and also helpline where you could talk to someone who would be able to tell you where you can access support for the whole family. They also have community peer support workers who help people who are not being treated in specialist centres. These are all people who are spinal cord injured so they know what sort of problems you are facing.

My thoughts are with you and I hope you find some help here on the forum.

Hi yes he is in a district general due to the cancer, this is a problem in its self as the docs are experts in Cancer not SCI so i will look into the groups you suggested.

Many Thanks.

wheeliebear75, on 02 December 2011 - 07:20 AM, said:

I have an incomplete injury @ L2. It often feels as though I'm wearing a pair of stockings that are several sizes too tight with some red ants dumped in....sort of has a crawling sensation & then there is the pins & needles......so "ants" sums it up pretty well in MY case. But everyone is different. What comes back or doesn't & whether these odd feelings are the return of something or just partial signals getting through is anyone's guess but time will be the ultimate judge. Welcome back.

the feelings you discribe sound very similar to what he is saying but he finds it difficult to explain. suppose we will have let time tell

[Tetracyclone]

Craig,
Most of us SCId folk experience sensation very differently than we did before injury. "Weird" is as good as any description, and well-educated adults still have difficulty finding words.

The change in sensation may stay the same, but his memory of what was normal before will fade. "Weird" will become the new normal. For me that took 6 months to a year, but a child adjusts more quickly.

Welcome to the forum, but so sorry you had to come.

[strngink]

hello craig im also an L1 incomplete an i just posted a thing asking how long this pains of pins an needles lasts ive been hurt for 1yr. and i gotta tell you i felt so sorry to hear your son so young has to go through this as i am a father myself but stick with him he will get used to it i think i seen someone put weird will become normal after long ..for me i take meds which helps me big time i have gained alot of feeling an movement back but when i dont have my meds my body gets super stiff nomatter what i try to do..i pray he gets better an that he gets alot of movement an feeling back.one thing i know for myself though is that my feet are what hurt the most so if he says they are hurting try not to rub on them or rub against them because at times it could feel like thousands on pins an needles..i send my blessings to you an especially ur son i wish the best for him an his whole family..welcome from here on out stay coming back to this site it is very helpful..

[Craiglwright]

strngink, on 05 December 2011 - 11:55 PM, said:

hello craig im also an L1 incomplete an i just posted a thing asking how long this pains of pins an needles lasts ive been hurt for 1yr. and i gotta tell you i felt so sorry to hear your son so young has to go through this as i am a father myself but stick with him he will get used to it i think i seen someone put weird will become normal after long ..for me i take meds which helps me big time i have gained alot of feeling an movement back but when i dont have my meds my body gets super stiff nomatter what i try to do..i pray he gets better an that he gets alot of movement an feeling back.one thing i know for myself though is that my feet are what hurt the most so if he says they are hurting try not to rub on them or rub against them because at times it could feel like thousands on pins an needles..i send my blessings to you an especially ur son i wish the best for him an his whole family..welcome from here on out stay coming back to this site it is very helpful..

thanks how long was it for you before feeling came back? he is complete so i know the chances are slim but i cant help but wonder.

[Craiglwright]

Hi all
He just had his flu jab today in his leg and cried out when the needle went in, dont know what to make of it, could it be the start of things coming back?

[megatrig]

Hi Craig,

Where in the UK are you?

My advice would be to go to your GP to chat about a referal. Or the consultant you have been under. The hospital your son had operations in will have a PALS department too who can help.

Ok!

GP. Your own doctor will hopefully understand the need to refer you to your closest spinal injuries center. Life for your son has changed. It doesn't have to be "awful". It will be different but it can be great! You need to get him "rehabilitated". (hate the phrase). Reintroduced to the real world but now as a spinal injury!

The consu;tant who has now signed you off?? Should refer you as well as there are a lot of health areas that need monitoring.

The SIA has a great way of helping you too if you need more advice and you have the link and phone number. Just give them a call for a chat.

I don't want to bombard you with advice!!!

Get refered to a Spinal Unit!!!! The "team" of people there from a very good consultant to nursing staff, physios and other people will be able to reasure you about "the future".

Good luck!!!!

ps. Flu Jab. Ummmm As hard as it will be not to do this!!! Try not to overthink things! You'll drive yourself nuts!! It really is a case of wait and see!!!

[Dean1978]

Hello sorry to hear about your son. I've told alot of people about the bed that I sleep on. I sleep on a semi waveless water bed. It has helped me with my body cause I have been in a wheelchair sense I was 16 years old and have never had a presser sore. I don't have to turn at night cause the water bed doesn't put any pressure on any spot of your body. I'm 33 now and hope this helps you.

[cbb1990]

I have been a c4\c5 quad for 4 years i have complete feeling everywher and i truly believe its because my mother had someone constantly massaging my legs i expierenced pain and burning but it was worth it.

[Craiglwright]

Hi all,
Thanks for all your advice.
My son is making an amazing recovery the cancer has almost gone just 6 weeks of radiotherapy and 26 weeks of maintenance chemo left.

He seems to be getting some sensation and movment back, he flinched the other day when i was cleaning him on the cammode he could not see where i was cleaning but could tell me exactly where.
he can also feel vibrations and pressure on his skin but not touch yet.

He has been categorized as an L1 complete, and in the begining this was correct, but now he is using his lower abs to create bowel and bladder movement though there is still no sensation of needing to go.
he is also using his hip flexors to move his legs, he can pull them up to his chest if he is lying in bed on his side and also push them back down. Also if he is sitting in his chair he can raise his heel off the foot plate - notsure which muscle would control this though.

I have approached his oncologist and physios about all this and the answer is the same "wait and see"
we are 6 months into this and not sure what to make of all these new feelings/movements, they have all come about within the last 6 weeks or so.