[DragonsDad]

Greetings all,
Let me start by saying thank you to you all, I have spent so much time the last few weeks reading on these forums and its been bewildering, emotional and so helpful.
Floemama is my wonderful, incredible, beautiful wife. As an intro, I am in UK with 2 of my children (daughter and I have beeen recovering from injuries from our accident in January--- we are on the mend and will be well in time, thankfully) and mother while my wife and son are in Philadelphia at the Shriners for Children. The past month and a 7 days have been a whirlwind, I have to say my children and my wife have humbled me with their spirit, bravery and attitude. The words despair, guilt, hope, faith, helplessness and thanks have real meaning to me now. I guess more on that later, for now lets just say I am grateful for life, that I am able to look into my childrens and wifes eyes, that our family will be together again soon.
After the accident (head on collision- vehicle hit us in our lane while attempting to pass cars) my son was taken to Cambridge for treatment for his SCI, he was accepted to the Shriners, the next week and the U.S. Airforce flew him to Philadelphia where he is now in rehab. When he left Cambridge he was diagnosed as an incomplete T1, after further assessments in Phili he is now been assessed as a T3 complete. What we are looking at now is he will be discharged sometime in March, probably early part of March (he is doing remarkably well with his pt and ot), and because they will be returning here to UK, a normally challenging transition, well is even more challenging.
For my questions:
1. Can anyone give me some advice or let me know what to expect from the NHS side of things here when he returns... working with my GP now and looking into a referall to Stoke Mand., but not sure what kind of programs are available for him here.
2. The team at Phili says we need to get my son involved in peer groups/ sports as soon as possible. Which I thought, no prob.. but not as easy as it seems. We are in Kimbolton in UK.
3. Our house, well its not going to work out, 2 story steps everywhere... We will be moving eventually, but we feel he should be able to "come home" for closure. In the meantime any advice as to type of bed, or other things I don't know to ask about to make his homecoming less traumatic?
He is 7... Should I get rid of our trampoline, which takes up half our garden/yard? Moving his bedroom.. should I wait until after he arrives, give him some say in it, and allow him to see it as he left it again? We rent so ramps should be ok but can't really make structural changes...
4. Back to programs, he responded well to electrical stim... and hydrotherapy, can someone advise as to what types of programs for physical therapy etc... here in UK?
5. UK vs US? Does anyone have experience with both sides of the pond for care and programs? Looking for viewpoints, as we are assessing whether staying here in UK or returning to states after living abroad for (yikes...) 10 years.

Been waiting for a few weeks to be able to register, sorry for such a long post. Thank you for reading and God Bless and keep you all.

Taking it one day at a time,

ChampsDad

[Kev-O]

DragonsDad, on Feb 16 2008, 04:51 PM, said:

Greetings all,
Let me start by saying thank you to you all, I have spent so much time the last few weeks reading on these forums and its been bewildering, emotional and so helpful.
Floemama is my wonderful, incredible, beautiful wife. As an intro, I am in UK with 2 of my children (daughter and I have beeen recovering from injuries from our accident in January--- we are on the mend and will be well in time, thankfully) and mother while my wife and son are in Philadelphia at the Shriners for Children. The past month and a 7 days have been a whirlwind, I have to say my children and my wife have humbled me with their spirit, bravery and attitude. The words despair, guilt, hope, faith, helplessness and thanks have real meaning to me now. I guess more on that later, for now lets just say I am grateful for life, that I am able to look into my childrens and wifes eyes, that our family will be together again soon.
After the accident (head on collision- vehicle hit us in our lane while attempting to pass cars) my son was taken to Cambridge for treatment for his SCI, he was accepted to the Shriners, the next week and the U.S. Airforce flew him to Philadelphia where he is now in rehab. When he left Cambridge he was diagnosed as an incomplete T1, after further assessments in Phili he is now been assessed as a T3 complete. What we are looking at now is he will be discharged sometime in March, probably early part of March (he is doing remarkably well with his pt and ot), and because they will be returning here to UK, a normally challenging transition, well is even more challenging.
For my questions:
1. Can anyone give me some advice or let me know what to expect from the NHS side of things here when he returns... working with my GP now and looking into a referall to Stoke Mand., but not sure what kind of programs are available for him here.
2. The team at Phili says we need to get my son involved in peer groups/ sports as soon as possible. Which I thought, no prob.. but not as easy as it seems. We are in Kimbolton in UK.
3. Our house, well its not going to work out, 2 story steps everywhere... We will be moving eventually, but we feel he should be able to "come home" for closure. In the meantime any advice as to type of bed, or other things I don't know to ask about to make his homecoming less traumatic?
He is 7... Should I get rid of our trampoline, which takes up half our garden/yard? Moving his bedroom.. should I wait until after he arrives, give him some say in it, and allow him to see it as he left it again? We rent so ramps should be ok but can't really make structural changes...
4. Back to programs, he responded well to electrical stim... and hydrotherapy, can someone advise as to what types of programs for physical therapy etc... here in UK?
5. UK vs US? Does anyone have experience with both sides of the pond for care and programs? Looking for viewpoints, as we are assessing whether staying here in UK or returning to states after living abroad for (yikes...) 10 years.

Been waiting for a few weeks to be able to register, sorry for such a long post. Thank you for reading and God Bless and keep you all.

Taking it one day at a time,

ChampsDad

I can help on some but not all.
question #2, If you move if possible move some were that would have a lot of activity's for him to do like sports. I live in a small town in the US an there is nothing around here for me to do an that pisses me off. Try an get him out of the house as much as you can. If hes not doing anything then he is going to sit around an think to much which can lead to depression an thats a slippery slope.
question #3, coming home sucks no matter what. Even tho we spend a short time in rehab it turns into our real home. There are a lot of people there we can relate to but once we go home there is no one there that truly knows what we are going through. As for the bed i suggest getting him one much bigger then what he needs so he can roll around in it better. I have a queen size bed (not sure if UK uses the same terms). I have found it easier to get dressed in bed with your feet hanging off the edge pulling up everything as far as you can then flip over on your stomach an pull them up the rest of the way. Dont get rid of the trampoline!!!!! he can still have fun on it. Help him up on it let him curl up in a ball an bounce him around he will have a blast (just make sure everything is nice an healed b4 you do that). your right with the room thing when he gets home let him tell you what he wants. He is the only one that truly knows what he wants.

[Lucydog]

Hi
welcome to the forum, Im sure there are many people here with much more experience than I have, but Id just like to add a couple of points.

first of all try to lt your son have a much control over his life as possible. Ask him what he would like and even if you dont agree let him try things so he learns. He will probably grow up a lot more quickly than his peers, but he also want to be able to have fun just like everyone else.

Try to meke sure that your other children dont feel they are missing out becaue of your son. Your son has to learn to live in a society thats disigned for AB people. He will learn and yes he will feel frustrated and upset at times, but he will get stronger. Try really hard not to 'wrap him up in cotton wool'.

You should contact your local council asap about applying for a disabled persons facilities grant. Renting has nothing to do with it, your land lord has a legal obligation to allow you to make 'reasonable adaptaions' so getting a ramp or a starlift shouldnt be a big deal as these are not permanent adaptaions as such.

Hope this helps. Remember he will still want to be like his other 7 year old friends and he will soon realise he can still do rough and tumble stuff!

[Motor]

DragonsDad, on Feb 16 2008, 11:51 AM, said:

Greetings all,
Let me start by saying thank you to you all, I have spent so much time the last few weeks reading on these forums and its been bewildering, emotional and so helpful.
Floemama is my wonderful, incredible, beautiful wife. As an intro, I am in UK with 2 of my children (daughter and I have beeen recovering from injuries from our accident in January--- we are on the mend and will be well in time, thankfully) and mother while my wife and son are in Philadelphia at the Shriners for Children. The past month and a 7 days have been a whirlwind, I have to say my children and my wife have humbled me with their spirit, bravery and attitude. The words despair, guilt, hope, faith, helplessness and thanks have real meaning to me now. I guess more on that later, for now lets just say I am grateful for life, that I am able to look into my childrens and wifes eyes, that our family will be together again soon.
After the accident (head on collision- vehicle hit us in our lane while attempting to pass cars) my son was taken to Cambridge for treatment for his SCI, he was accepted to the Shriners, the next week and the U.S. Airforce flew him to Philadelphia where he is now in rehab. When he left Cambridge he was diagnosed as an incomplete T1, after further assessments in Phili he is now been assessed as a T3 complete. What we are looking at now is he will be discharged sometime in March, probably early part of March (he is doing remarkably well with his pt and ot), and because they will be returning here to UK, a normally challenging transition, well is even more challenging.
For my questions:
1. Can anyone give me some advice or let me know what to expect from the NHS side of things here when he returns... working with my GP now and looking into a referall to Stoke Mand., but not sure what kind of programs are available for him here.
2. The team at Phili says we need to get my son involved in peer groups/ sports as soon as possible. Which I thought, no prob.. but not as easy as it seems. We are in Kimbolton in UK.
3. Our house, well its not going to work out, 2 story steps everywhere... We will be moving eventually, but we feel he should be able to "come home" for closure. In the meantime any advice as to type of bed, or other things I don't know to ask about to make his homecoming less traumatic?
He is 7... Should I get rid of our trampoline, which takes up half our garden/yard? Moving his bedroom.. should I wait until after he arrives, give him some say in it, and allow him to see it as he left it again? We rent so ramps should be ok but can't really make structural changes...
4. Back to programs, he responded well to electrical stim... and hydrotherapy, can someone advise as to what types of programs for physical therapy etc... here in UK?
5. UK vs US? Does anyone have experience with both sides of the pond for care and programs? Looking for viewpoints, as we are assessing whether staying here in UK or returning to states after living abroad for (yikes...) 10 years.

Been waiting for a few weeks to be able to register, sorry for such a long post. Thank you for reading and God Bless and keep you all.

Taking it one day at a time,

ChampsDad

Welcome to the forum and sorry about your son. First thing I will say is that it gets worse before it gets better. I am older being 46 but I hear young ones do very well adjusting. I have only been in the US in South Florida but I do agree activities and sports help. Being among others like you make you feel better, at least it does me. I am now like before. I ride a harley davidson trike, play sled hockey and rugby. I go to movies and casinos and live a normal life. There is life in a wheel chair. I love aqua therapy. As for the trampoline its a tuff call. Might be depressing for your son if he realizes he may never use it again. Good Luck and feel free to ask me anything. I mentor new SCI so I may be able to help. I also am active in 3 support groups one of which is a chapter of the NSCIA(national spinal cord injury association). I believe an air mattress bed will help avoid bed sores.

[DragonsDad]

Thank you for the replies,
Kev-O thanks, I think his input is the right way to go, its more or less what we did when we moved here, (and we've moved a few times in his life). To that end I'll have a talk to him about he trampoline too. I hope to get him involved with activities as much as possible, he is an active kid, was on soccer team locally, played sports t-ball, soccer, gymnastics, tagged along with Dad to wrestling practice since he was omg.. out of diapers. Thanks for the advice on the bed too, he has a bunk which is a double on bottom (he keeps loads of his toys stuffed animals ect.. on top.), but I'm looking for a better alternative, definitely a different mattress. Thanks again I appreciate your advice.
Lucydog, you are right sometimes its hard for me to remember he's only 7 (maybe because it hurts to really reflect on it) but as he has reminded me and his Mom in the hospital (we keep in touch via Skype... the joys of technology) he wants to have fun. Siblings consideration is well-taken. His sister and he are very tight, best of friends, the separation has been hard on both of them I know. I will also keep in mind the wool-blanket advice, and I will call the local council and talk to my landlord he is good people.
Motor, glad you responded, I have read many of your posts and wanted to talk to you a few times, but couldn't register.... What type of air matress would you recommend? I will look to find him a support group/mentor. Let me tell you a little bit about my son, this I think reflects the type of person he is.. Shortly after the accident after he was out of the Ped ICU, the nurse came around and gave him a shot on the leg, he was playing with something and didn't notice at first. Then he said to the nurse... "hey what did you just do." She said, "its ok I just gave you your meds.." He said, "No.. what did you just do to me down there..." She said "I just gave you a shot.." He said, slapping the bed, "I knew it, I knew there was something good about this... (kind of giggling) that didn't hurt at all!" He is normally all laughs and a positive kid, he loves to laugh, he's had his bad nights recently, to be expected... actually it is amazing he hasn't had more. We had some good talks before he went to Phili, and were able to talk a little about the accident and his injury, but I guess I'm having a tough time with not being there for him, and how to motivate and help him from over here. Not to mention being prepared for him when he comes home. Anyway I'm rambling now, I should sign off for now...
God Bless you all and keep you.

[ParaforGod]

Hi DragonsDad and Im so sorry about your son and the accident for all of you. I don't know how things are in the UK but I can say Shephard Spinal Center in Atlanta, Ga. in the US is one of the top facilities in the nation and have some of the best spinal doctors in the nation. I know at Shephard Center they are always offering things to do. It has been 7yrs. since my accident and although I live 2hrs away from Shephard I am always getting emails of different events thats going on not only at Shephard but the community as well. I also recieve updates on new medical treatments. They also meet once a month for support group. I met one of the volunteers while at Shephard and we became good friends. She is also in a wheelchair. She does fencing for the handicap Olympics and does her practicing at Shephard. She travels all over the world with the Olympic team. Before she became a part of the Olympic team she used the facilites at Shephard since she lived in Atlanta. I don't know if it was because she volunteered one hour a day or if anyone can use them. I do know while I was there past patients would come in and use the gym. They also have a basketball team. They have a huge pool and while there they took us on outings all the time. They go boating, fishing, camping, to ballgames, bowling, movies, and the list goes on and on. They also have alot of children and teens there so they could probably set you up with all the programs you need. If you have any questions for them and would like to contact them the number is 404-352-2020. As far as your home before I left Shephard I had to give them the size of my home and a outline of how my home is layed out. They then gave me instructions on how to make my home wheelchair accessible. I would think the hospital your son is at will do the same but how often do they deal with spinal injuries? If you do decide to move back to the US since Shephard is such a great place and has so much to offer Atlanta might be somewhere you might consider. My doctor at Shephard Center is also in a wheelchair infact its amazing how many employees are in wheelchairs. The thing with your son is he is young and as someone said children seem to adapt well even so somethings will get frustrating for you son. Make his life as normal as you can. Don't start out doing everything for him. What he can do for himself let him. I am a parent and I know its hard when your child is sick or hurt. I can't say I know how you feel but when my daughter was 12yrs. old she got very sick. When we were told they thought she had Lupus I remember her asking Mom can I die. That was the hardest thing for me because as a parent I felt like I should be able to fix it for her, but the thing is we can't always do that. Treat your son the same as before when it comes to letting him try things for himself and do things for himself. If you feel pity for him he will feel it for himself. I worked in the medical field for many years with children as patients, many sick with genetic problems in wheelchairs. Some with MD or MS and I found those children just wanted to be treated the same as all children. As far as the bed. I got a really bad pressure point sore about 1 or 3 yrs. ago and home health had to come to my home after my return from the hospital. I had tried different beds but home health told me I needed a temper-pedic matress to prevent pressure sores. I haven't had any problems since and I have to lay on my back at all times because of the pain with my rods and the neuropathy pain between my breasts when I lay on my side. The temper-pedic matress molds to the form of your body. My cushion in my chair is also temper-pedic. Im sorry for such a long response but I wish all the best for you, your son and your family. I will keep you all in my prayers.

[DLV]

DragonsDad, on Feb 16 2008, 06:22 PM, said:

Thank you for the replies,
Kev-O thanks, I think his input is the right way to go, its more or less what we did when we moved here, (and we've moved a few times in his life). To that end I'll have a talk to him about he trampoline too. I hope to get him involved with activities as much as possible, he is an active kid, was on soccer team locally, played sports t-ball, soccer, gymnastics, tagged along with Dad to wrestling practice since he was omg.. out of diapers. Thanks for the advice on the bed too, he has a bunk which is a double on bottom (he keeps loads of his toys stuffed animals ect.. on top.), but I'm looking for a better alternative, definitely a different mattress. Thanks again I appreciate your advice.
Lucydog, you are right sometimes its hard for me to remember he's only 7 (maybe because it hurts to really reflect on it) but as he has reminded me and his Mom in the hospital (we keep in touch via Skype... the joys of technology) he wants to have fun. Siblings consideration is well-taken. His sister and he are very tight, best of friends, the separation has been hard on both of them I know. I will also keep in mind the wool-blanket advice, and I will call the local council and talk to my landlord he is good people.
Motor, glad you responded, I have read many of your posts and wanted to talk to you a few times, but couldn't register.... What type of air matress would you recommend? I will look to find him a support group/mentor. Let me tell you a little bit about my son, this I think reflects the type of person he is.. Shortly after the accident after he was out of the Ped ICU, the nurse came around and gave him a shot on the leg, he was playing with something and didn't notice at first. Then he said to the nurse... "hey what did you just do." She said, "its ok I just gave you your meds.." He said, "No.. what did you just do to me down there..." She said "I just gave you a shot.." He said, slapping the bed, "I knew it, I knew there was something good about this... (kind of giggling) that didn't hurt at all!" He is normally all laughs and a positive kid, he loves to laugh, he's had his bad nights recently, to be expected... actually it is amazing he hasn't had more. We had some good talks before he went to Phili, and were able to talk a little about the accident and his injury, but I guess I'm having a tough time with not being there for him, and how to motivate and help him from over here. Not to mention being prepared for him when he comes home. Anyway I'm rambling now, I should sign off for now...
God Bless you all and keep you.

I think one of the best pieces of advise we were given when my son was injured was to let him make as many decisions on his own as possible because it would give him the feeling of having some control of his life at a time when so many things were out of his control. My son was 17 when he was hurt so this may of been a bigger issue due to his age. When your son returns home, I would try to treat him like you did prior to his injury. That is easier said than done! It is hard to just stand back and let them figure out how to master small tasks without jumping in to help.

As a previous poster recomended, I would definately check in to a low air loss matress.

Hopefully, you can find a place for your son to continue rehab after he is released from the hospital, that specialized in spinal cord injury, and has some kids his age. My son has continued to make progress as an outpatient and I think it's good to be around people his own age in a similar situation.
The rehab my son attends has young kids, but we are in the U.S. I would think there would be something similar in the U.K.

I also agree with keeping the trampoline. With us it was whether we should keep his truck. We decided to keep it. He was so glad to see that truck when he came home. (I still don't understand the love a boy can have for a truck!) Eventually, he decided to sell the truck. He will be able to drive with adaptive equipment, but because of the age of the truck, it would not make sense to have it adapted.

The first year is the hardest .... so much to learn, so many decisions to be made, so little sleep...
But it will get better. Your sons injury is so new and he is so young that I think you may be surprised at how much recovery he will make!

[wheeliebear75]

Holy Cow & I thought I was young @ 14! Well I'm very sorry to hear about the accident your family had. I know with being a child that there are going to be some problems..........like finding peer groups. The majority of people who have spinal cord injuries are late teens or older it seems. As a child however he can adjust better than an adult.......it doesn't mean he WILL it just means kids seem to adapt to change much better than older people. One problem us fully grown people have in chairs is fitting through bathroom doors.........although with his chair (I'm sure will be much narrower due to his size) being smaller it'll fit through narrow doorways better. For solving the issue of upstairs and downstairs since he is only 7 he could be carried up the stairs and just have "the good chair" where ever it'll get the most use and a cheaper one for the other floor (my guess would be "good chair" 1st floor so you can go out in IT) so just for the meantime cart him up & down and then once on either floor he'd be able to get around on his own. With his arms being so short he's bound to have issues with getting things on the floor......(I was @ Children's Hospital for my care) ; the toys were up on large coffee tables so that children using wheelchairs could still get to them. I and a lot of other people use grabbers to reach stuff..........just make sure it's got a light grip to the trigger part and that it's small enough for his little hands to work. I've been bounced on a trampoline. It's kinda fun.......I just laid there while my kids, nieces, and nephews all bounced me on my uncle's trampoline. Don't give up on him being a "normal" little boy. ;) His chores may have to be modified like many other things........but the more he is forced to do for himself the more he'll learn and the faster he'll learn. The agencies in your area that handle children with Cerebral Palsy may have some good leads as to where to find a child psychologist that can help him and you guys deal with issues as they come up. I know that there are tons of places to go for SCI help..........but much of what is dealt with are "adult issues". I know that his is accident related vs. illness or birth-defect ; however many children with spina bifida (sp?) would have similar SCI issues to him. Oh and do keep up with the "range of motion" therapy..........it's very important so his joints and ligaments don't become stiff and locked up. Best of luck to you and your entire family.

[kewlcatkez]

Hi
Welcome, I have copied the reply which I left for your wife ( incase you didn;t see it) and added to it to tailor it to your question, please see below this bumpf ( which may be of some use) for the questions and my interpretation of them at least::

Please see the following thread-article (here at Apparelyzed) which is specifically about SCI in children: http://www.apparelyz...?showtopic=4883

In terms of Specialist SCI 'units' or hospitals in the UK, there are a few which offer dedicated paediatric services. One is the National Spinal Injuries Centre, Buckinghamshire. LINK ( AKA Stoke Mandeville)

""The National Spinal Injuries Centre is a 106 bed dedicated spinal injuries centre providing comprehensive care to adult patients with acute spinal cord injury and the lifelong complications of cord injury. We offer rehabilitation to children with spinal cord injury in a dedicated paediatric unit.""

Most SIU like Pinderfields HERE (Yorkshire) cater for a total age span, and mention their care for children with SCI in their literature. This is due to the fact that the percentage of children spinally injured in the UK is low, so actual numbers of children seen each year is thankfully small.

Regardless of whether or not the child is treated in a dedicated children's spinal unit, or a Spinal unit which incorporates child and adolescents with SCI/D, it is important to note that nowadays they all need to work with the Child Needs Assessment Checklist (ChNAC).

The ChNAC was developed for use with children and adolescents younger than 17 years of age in all specialist spinal units. In essence, it is a modified and tailored version of the 10 steps used in the adult rehab process. , It was developed as a result of research & discussion with the pediatric rehab specialists. (The 10 sections include, but not limited to: knowledge, and equipment (chairs, vents?, standers etc) needed and meeting that need, ADLs (activities of daily living), skin integrity/management, bladder and bowel management, education re spine relevant to their age/understanding, promotion of health and psychological issues/considerations, etc. As children grow sooo rapidly, it is essential that this approach is frequently and continuously monitored and changed where needed.

It is also very important to find something which will motivate the child to want to get through his/her therapy - just as it is with adults! Some hospitals and units have regular visits by football players and pop stars etc, and as well as bringing in money from donations etc, it also serves as a motivating force for some of the children.
KevO's suggestion of peer support is also very valid and important. Is it possible to get in touch with a child who is a little older who has been in the same situation? someone to look up to. Also fellow older inpatients etc are also an excellent idea.


In relation to your question about tingling and pain. It is explained a little in the article I have linked to above. Basically children's bodies and therefore their injuries do not follow the same pattern as adults. This is because the childs bones, tendons etc are still forming. The bones are still soft etc.

This means that sometimes injuries will be complete in terms of initial observations and Magnetic Resonance Imaging, and yet the child will recover much more than expected. Of course nothing is guaranteed and so it is important ( as I am sure you are aware) to steer away from promises which can not be kept in terms of recovery etc. A child's body is capable (potentially) of regenerating to a certain extent some of the peripheral at least, neural pathways. Much in the same way that children, if the base of the nail matrix does not get damaged, the finger tip will regrow. The key here is that there has to be sufficient residual tissue and in the right places. In terms of SCI/D, it is believed that if certain peripheral nerves are intact or partially so, in children, that there is a greater chance of a greater degree of recovery. It is difficult however to say how much recovery that will be. These things are so difficult to measure. It may be 30 % recovery rather than 10%, or maybe more..who knows? ( These figures are not acurate, just guesses to illustrate).

Sometimes the tingling etc is one of the "just because" things, difficult to explain. It could be that the connections are trying to get through. It is very rare to have a complete sever of the spinal cord ( usual near decapitations and gunshot wounds being the common ones) and so, it is very possible that the nerves are firing and a teeny bit is getting through, enough to register as a tingle or a pain, etc. The fact that he can feel your touch is reassuring at this early time.

After a SPI, there is very often a degree of Spinal Shock. Basically it is both swelling and a sort of 'confusion' of the neurological system, where it is unable to transmit signals.
Please see the following link and the chunk of it, below:

Spinal shock info

QUOTE

Quote

What is spinal shock?

Question
* What is spinal shock?

Answer
When a spinal cord injury is caused due to trauma, the body goes into a state known as spinal shock. While spinal shock begins within a few minutes of the injury, it make take several hours before the full effects occur. During spinal shock the nervous system is unable to transmit signals, some of which may return once spinal shock has subsided, approximately 2-6 weeks following the injury. The loss of these signals will effect the persons movement, sensation and how well the body’s systems function. Often the persons loss of movement and sensation below the level of the spinal cord injury may appear complete soon after the injury. This may mask the real extent of the damage. Usually, over the first few weeks the some of body systems adjust to the effects of the injury and their function improves. Therefore, during this time it is unlikely that an accurate prediction of any recovery or permanent paralysis can be made.

There are 4 main 'phases' of "spinal Shock". I mean it stands to reason that it won't just stop instantaneously. The initial phase which happens at the moment of 'event' or injury may be shorter in duration, but there are other 'bits' or phases to Spinal shock. These go from the actual moment of the event, when the nerves are "Hypo polarised" and lose ability to be responsive to stimulus, through to the "soma-supported" synapse growth.( ie the regeneration and awakening of some reflexes and in some, some function) The fourth stage is really about the body trying to make its own connections. Sometimes this is successful and other times its like a radio station sending out radio signals in the air and yet nothing is able to receive them - like sending out radio signals and not having the radio on to receive them. The total process can take around 12 months, although some drs and Scientists now believe that it can be much longer than that in incomplete injuries. However this is usually including the very intricate and comprehensive stages and is not based soley on function. Whether or not your son is complete or incomplete, well it may be too early to say if his injury is not a complete sever of the cord...

I hope that this has been of some use and really really hope that your son gets both motivated and return.)

With regards to the other questions you ask:

1. and 3. The council for disabled children HERE although not something which sounds appealing, may be key for enabling you to get support and guidance into what is available here in the UK ( support and funding etc wise). Also, Contact A Family ( a website for families of disabled children) HERE Although the 'label' of 'disabled' can sound daunting, it can be beneficial to talk to people in a similar position.
KIDS is another site.
Also check out Whizz Kidz a charity/supporty network for children and their families,.

I take it you mean Kimbolton Cambs? as there are two, believe it or not!, I had a look on the Cambs website and found the following childrens disability team leaflet It may be worth contacting them ( if it is the right Kimbolton!)

This will also help with the grants. Also ring the council and speak with the Children's Diability Team, contact your Health visitor too.

Personally I would leave the trampoline, he will soon be beiing a kid 'bouncing' in his own way on ity. After his injury has healed and he is stronger, he will be at no further risk of injury ( unless there are further issues we are not privvy to) and so he will be fine to go on the trampoline.


As for beds, you could go for something like this: Race Car Bed I don't necessarily mean with this mattress on, but you could get a bed similar to this with a lower side or hack at it. perhaps allow his sister to sleep in the downstairs/accessible room with him, so its a big adventure!?

We live in an oldish 3 bed two storey house and I have a stair lift and ramp fitted - both funded by the councils access grants ( although we didn't have to apply for them since we had a second hand stair lift - looks new, and the ramp is basic, yet functional).

4. PT programs in Stoke Mandeville etc also include hydrotherapy and electrostimulation where appropriate. Also most general hospitals and teaching hospitals have pools too, which can be utilised by the PT who is directing his treatment.

Matresses and pressure relief cushions for his wheelchair will be available from the NHS> The Mattress will be arranged by the rehab/SIU centre and the cushion for his chair by the wheelchair service/ or through the child development centre at the trust.

I hope that this is of some use to you. Do contact me if I can be of any further use. I hope that your son continues to progress through his therapy and that you all heal physically and emotionally ( as far as possible). I can not imagine how I would feel if it was my kids not me who was in my situation. However, their resilience and nonchalente attitude is breath taking and takes them through..

I look forwards to hearing how you are all doing,

Take care,



K

[DragonsDad]

wheeliebear75, on Feb 17 2008, 07:30 AM, said:

Holy Cow & I thought I was young @ 14! Well I'm very sorry to hear about the accident your family had. I know with being a child that there are going to be some problems..........like finding peer groups. The majority of people who have spinal cord injuries are late teens or older it seems. As a child however he can adjust better than an adult.......it doesn't mean he WILL it just means kids seem to adapt to change much better than older people. One problem us fully grown people have in chairs is fitting through bathroom doors.........although with his chair (I'm sure will be much narrower due to his size) being smaller it'll fit through narrow doorways better. For solving the issue of upstairs and downstairs since he is only 7 he could be carried up the stairs and just have "the good chair" where ever it'll get the most use and a cheaper one for the other floor (my guess would be "good chair" 1st floor so you can go out in IT) so just for the meantime cart him up & down and then once on either floor he'd be able to get around on his own. With his arms being so short he's bound to have issues with getting things on the floor......(I was @ Children's Hospital for my care) ; the toys were up on large coffee tables so that children using wheelchairs could still get to them. I and a lot of other people use grabbers to reach stuff..........just make sure it's got a light grip to the trigger part and that it's small enough for his little hands to work. I've been bounced on a trampoline. It's kinda fun.......I just laid there while my kids, nieces, and nephews all bounced me on my uncle's trampoline. Don't give up on him being a "normal" little boy. ;) His chores may have to be modified like many other things........but the more he is forced to do for himself the more he'll learn and the faster he'll learn. The agencies in your area that handle children with Cerebral Palsy may have some good leads as to where to find a child psychologist that can help him and you guys deal with issues as they come up. I know that there are tons of places to go for SCI help..........but much of what is dealt with are "adult issues". I know that his is accident related vs. illness or birth-defect ; however many children with spina bifida (sp?) would have similar SCI issues to him. Oh and do keep up with the "range of motion" therapy..........it's very important so his joints and ligaments don't become stiff and locked up. Best of luck to you and your entire family.

Thanks wheeliebear, some good advice here, I know he has done some work with grabbers over in Shriners at Phili. I think it will be a challenge to find peer groups here in UK, but we giving it our best shot. Thanks again, God Bless and keep you.

[DragonsDad]

Kewlcatkez,
Thank you so much for your response. I have read so many of your posts and you are an Angel and a wealth of information. You have made my weekend and Monday very busy indeed so much good information here. We do live in Kimbolton Cambs... to be honest I have only just been dealing with the term disabled applying to my son.... I would not have thought to look up the council for disabled children so thanks.. I know it may seem like dad's in denial but I have been surving on faith and hope and just getting through one day at a time, trying to get through the to do list every day and staying positive for my kids here and my family in Phili...
As for the bed again thanks, also his sister and he invariably end up in bed together, she sleeps in his bed now with her Grandmother... One of the things he said way back when in PICU was he wanted to have a big family slumber/movie taco party he called it a family nest taco party... But we will get to that when the time comes.
Heres a question for you my job could enable me to move back to the states or even to Germany, I have read some interesting comments on Germany and SCI rehab/treament.... Do you have any thoughts on this?
God Bless you and thank you for the response.

kewlcatkez, on Feb 17 2008, 08:57 AM, said:

1. and 3. The council for disabled children HERE although not something which sounds appealing, may be key for enabling you to get support and guidance into what is available here in the UK ( support and funding etc wise). Also, Contact A Family ( a website for families of disabled children) HERE Although the 'label' of 'disabled' can sound daunting, it can be beneficial to talk to people in a similar position.
KIDS is another site.
Also check out Whizz Kidz a charity/supporty network for children and their families,.

I take it you mean Kimbolton Cambs? as there are two, believe it or not!, I had a look on the Cambs website and found the following childrens disability team leaflet It may be worth contacting them ( if it is the right Kimbolton!)

This will also help with the grants. Also ring the council and speak with the Children's Diability Team, contact your Health visitor too.

Personally I would leave the trampoline, he will soon be beiing a kid 'bouncing' in his own way on ity. After his injury has healed and he is stronger, he will be at no further risk of injury ( unless there are further issues we are not privvy to) and so he will be fine to go on the trampoline.


As for beds, you could go for something like this: Race Car Bed I don't necessarily mean with this mattress on, but you could get a bed similar to this with a lower side or hack at it. perhaps allow his sister to sleep in the downstairs/accessible room with him, so its a big adventure!?

We live in an oldish 3 bed two storey house and I have a stair lift and ramp fitted - both funded by the councils access grants ( although we didn't have to apply for them since we had a second hand stair lift - looks new, and the ramp is basic, yet functional).

4. PT programs in Stoke Mandeville etc also include hydrotherapy and electrostimulation where appropriate. Also most general hospitals and teaching hospitals have pools too, which can be utilised by the PT who is directing his treatment.

Matresses and pressure relief cushions for his wheelchair will be available from the NHS> The Mattress will be arranged by the rehab/SIU centre and the cushion for his chair by the wheelchair service/ or through the child development centre at the trust.

I hope that this is of some use to you. Do contact me if I can be of any further use. I hope that your son continues to progress through his therapy and that you all heal physically and emotionally ( as far as possible). I can not imagine how I would feel if it was my kids not me who was in my situation. However, their resilience and nonchalente attitude is breath taking and takes them through..

I look forwards to hearing how you are all doing,

Take care,



K

[kewlcatkez]

DragonsDad, on Feb 17 2008, 07:37 PM, said:

Kewlcatkez,
Thank you so much for your response. I have read so many of your posts and you are an Angel and a wealth of information. You have made my weekend and Monday very busy indeed so much good information here. We do live in Kimbolton Cambs... to be honest I have only just been dealing with the term disabled applying to my son.... I would not have thought to look up the council for disabled children so thanks.. I know it may seem like dad's in denial but I have been surving on faith and hope and just getting through one day at a time, trying to get through the to do list every day and staying positive for my kids here and my family in Phili...
As for the bed again thanks, also his sister and he invariably end up in bed together, she sleeps in his bed now with her Grandmother... One of the things he said way back when in PICU was he wanted to have a big family slumber/movie taco party he called it a family nest taco party... But we will get to that when the time comes.
Heres a question for you my job could enable me to move back to the states or even to Germany, I have read some interesting comments on Germany and SCI rehab/treament.... Do you have any thoughts on this?
God Bless you and thank you for the response.

Hi again,

I am glad that the sites gave you something to research. if nothing else, it helps to keep busy and involved at times! I didn't want to offend you by ploughing in with the 'disabled kids" site, so that is why I said what I did. The word disabled is something which is positive and negative. The positive being the things it opens up ( ie the website) vs the negative emotions and 'image' we get when thinking about it. Just remember that just because the sites are called "disabled" whatever doesn't mean that this is giving in on behalf of your son! What will be will be. Sorry to waffle on, but that is how I felt about it at first, like I was giving in if I used the term "disabled" or looked into it.

Also, I was thinking, that you need to look into getting the ball rolling about DLA ( another disability name!) Disability Living Allowance. If you need any info, then please do ask. I have links for sites which guide you through the process. Actually here it is, no sense in leaving it! http://www.bhas.org.uk/freeguides/dla-chil...icalgrounds.pdf I may as well post it here now so that you can save it if needed. It will give you income which may be spent however you and your son wish. DO look at the guide though (I linked to the child one) as it is a bugger of a process.

With regards to Germany - It does have some good facilities and some which perhaps are not, like everywhere, however there are some things which are different from the UK/USA and may cause distress if you are not prepared for them..There are many things to consider such as the fact that when it existed East Germany was modeled on the Russian Model of healthcare and as such many facillites ( good and not so good) exist. Also, at the moment there is legislature from 2002 being revamped which may throw the whole Stem cell debate wide open and may lead to anything from NO rules to out right ban ( and in between) in Germany. There are exciting things reported at the moment ( from private businesses such as the XCell-Center) but scientists worry that Stem cell research may be curtailed too much or may be so lax that anyone will be able to offer 'treatments", diluting the quality of those treatments.

Do see the article HERE about someone who visited the Xcell center, please do bear in mind that the recovery reported wasn't quantifiable, nor the results measurable in a quantifiable way. It is still exploratory.

It doesn't matter per se since we are still a way off the 'cure', but it may tailor some of the legislature concerning therapies. The jury is still out on that one, so to speak ( according to a friend I have who has worked in germany). Also, the Science Organisations are renound for having limited dialogue with the general public, so it could be frustrating entering into that from one of relative transparency ( as far as we know!!) http://www.egms.de/en/gms/index.shtml is the German Medical Science journal which is worth a peruse ( in English).

I just deleted half of this message by accident and had to retype it, so please excuse if it is disjointed!

I wish you and your family and of course your son, the very best and that he gains strength and hopefully function each day.

Thank you for your compliments re my posts!

Take care,

K

[Paul Breen]

Hi,

Welcome to the forums. I have sent some information to your wife regarding housing adaptations etc. If this has not arrived for some reason, please let me know and I will resend.

Paul

DragonsDad, on Feb 16 2008, 04:51 PM, said:

Greetings all,
Let me start by saying thank you to you all, I have spent so much time the last few weeks reading on these forums and its been bewildering, emotional and so helpful.
Floemama is my wonderful, incredible, beautiful wife. As an intro, I am in UK with 2 of my children (daughter and I have beeen recovering from injuries from our accident in January--- we are on the mend and will be well in time, thankfully) and mother while my wife and son are in Philadelphia at the Shriners for Children. The past month and a 7 days have been a whirlwind, I have to say my children and my wife have humbled me with their spirit, bravery and attitude. The words despair, guilt, hope, faith, helplessness and thanks have real meaning to me now. I guess more on that later, for now lets just say I am grateful for life, that I am able to look into my childrens and wifes eyes, that our family will be together again soon.
After the accident (head on collision- vehicle hit us in our lane while attempting to pass cars) my son was taken to Cambridge for treatment for his SCI, he was accepted to the Shriners, the next week and the U.S. Airforce flew him to Philadelphia where he is now in rehab. When he left Cambridge he was diagnosed as an incomplete T1, after further assessments in Phili he is now been assessed as a T3 complete. What we are looking at now is he will be discharged sometime in March, probably early part of March (he is doing remarkably well with his pt and ot), and because they will be returning here to UK, a normally challenging transition, well is even more challenging.
For my questions:
1. Can anyone give me some advice or let me know what to expect from the NHS side of things here when he returns... working with my GP now and looking into a referall to Stoke Mand., but not sure what kind of programs are available for him here.
2. The team at Phili says we need to get my son involved in peer groups/ sports as soon as possible. Which I thought, no prob.. but not as easy as it seems. We are in Kimbolton in UK.
3. Our house, well its not going to work out, 2 story steps everywhere... We will be moving eventually, but we feel he should be able to "come home" for closure. In the meantime any advice as to type of bed, or other things I don't know to ask about to make his homecoming less traumatic?
He is 7... Should I get rid of our trampoline, which takes up half our garden/yard? Moving his bedroom.. should I wait until after he arrives, give him some say in it, and allow him to see it as he left it again? We rent so ramps should be ok but can't really make structural changes...
4. Back to programs, he responded well to electrical stim... and hydrotherapy, can someone advise as to what types of programs for physical therapy etc... here in UK?
5. UK vs US? Does anyone have experience with both sides of the pond for care and programs? Looking for viewpoints, as we are assessing whether staying here in UK or returning to states after living abroad for (yikes...) 10 years.

Been waiting for a few weeks to be able to register, sorry for such a long post. Thank you for reading and God Bless and keep you all.

Taking it one day at a time,

ChampsDad

[cate]

Hi
I assume your son is in Addenbrookes Hospital at Cambridge, which is a pretty good unv teaching hospital. I also live not far from Kimbolton and you should get all the info you need for help from Addenbrookes, you may have to ask, because information is not volanteered, over here easily. Also another spinal injuries hospital for you to look into would be Royal Orthpedic Hospital at Stanmore, which is one of our leading hospitals. my daughter was there. I would warn you is a very old hospital from the outside, but the work they do is good, and it is just up the A1 so very easy to get to.
Wish you and your family all the best. You have had a lot of very helpful suggestion on here, Hope they are of help to you,
Cate

This post has been edited by cate: 23 February 2008 - 06:43 PM