Hi
My friends little boy, 6 years old, has suffered a C1 injury in a driving accident. This was 6 weeks ago and initially they felt he would walk again although it may take 1-1.5 years, they're now saying he probably won't as he's not making any progress. My friend broke her leg in the accident and is in too much shock to find out anything other than what she's being told in the hospital. The boy is on a ventilator and although was talking away to my son about spiderman when we visited the hospital on friday, they've told her that she may have to switch off the ventilator eventually if his lungs worsen. This is a minefield and the most terrifying thing I've ever seen. Does anyone have any advice? We're in Ireland and wonder would the prognosis be any better in America or elsewhere? As far as I know, it's an incomplete injury, his arms and legs have no feeling but his stomach and groin do have feeling. Hope please!
0
Child C1 Injury
Started by
chiara
, Jul 22 2008 07:06 AM
17 replies to this topic
Top#2
sits2much
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Posted 22 July 2008 - 08:20 AM
I'm so sorry to hear this, it breaks my heart to hear when youngsters get hurt this bad!! When I had my accident it was a traumatic event for me and my family, the best advice for you and his mother from me is to be close to him and not show your fears. Keep his fighting spirit alive, try to keep things on the brighter side..
Each day posses new successes and new challenges and it's best to take one day at a time.
After my accident the doctors would scare the sh@t out of me by saying I needed this complicated procedure, or just plan saying that's not good, or I wish I saw more improvement. The very next day they would tell me oh we talked and decided you don't need that complicated procedure, and you seem to be doing better!!
So don't get over excited about some of the stuff you here from the doctors cause they sometimes speak out of place and really need to work on there bedside manner!! Sometimes they put you on a roller coaster that is unnecessary.
In Rehab they give you a time limit on improvement and I think its the worst thing they can do, because they plant there time line in your head and your expectations and hopes can be crushed if you don't get the improvement by there time standards.
As far a the US being better with medical treatment, I believe in some cases we have excellent medical care!! When it comes to Spinal Cord Injuries though I find most doctors here are still learning how to treat and stabilize people after there accident. They just recently set a new standard to treat new SCI patients with immediate steroids to help combat the swelling which causes extensive damage if not dealt with quickly.
So I believe the US is still learning about SCI's and doing a lot of research!! I don't think we are any further along in that respect than any other major Country!! The UK apparently has a lot more support organizations for people with SCI's, I wish the US would get on board!!
Please keep me posted on his condition and how he is coming along!!
Each day posses new successes and new challenges and it's best to take one day at a time.
After my accident the doctors would scare the sh@t out of me by saying I needed this complicated procedure, or just plan saying that's not good, or I wish I saw more improvement. The very next day they would tell me oh we talked and decided you don't need that complicated procedure, and you seem to be doing better!!
So don't get over excited about some of the stuff you here from the doctors cause they sometimes speak out of place and really need to work on there bedside manner!! Sometimes they put you on a roller coaster that is unnecessary.
In Rehab they give you a time limit on improvement and I think its the worst thing they can do, because they plant there time line in your head and your expectations and hopes can be crushed if you don't get the improvement by there time standards.
As far a the US being better with medical treatment, I believe in some cases we have excellent medical care!! When it comes to Spinal Cord Injuries though I find most doctors here are still learning how to treat and stabilize people after there accident. They just recently set a new standard to treat new SCI patients with immediate steroids to help combat the swelling which causes extensive damage if not dealt with quickly.
So I believe the US is still learning about SCI's and doing a lot of research!! I don't think we are any further along in that respect than any other major Country!! The UK apparently has a lot more support organizations for people with SCI's, I wish the US would get on board!!
Please keep me posted on his condition and how he is coming along!!
#3
chiara
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Posted 22 July 2008 - 08:38 AM
Thanks sits2much, at this stage I'm just trying to get a hold on this. This is a whole world I knew nothing about, unfortunately a world my friend is going to become very familiar with. Is it possible that he would walk again? If he has no feeling in his arms and legs, can that reverse? I would have thought a child would have better odds as they are still growing. She was in another hospital with a badly broken leg for the first month, so he didn't see her for all that time. She's a single mother, it's just the two of them, so do you think that the fact he was missing her has impeded his recovery? State of mind must surely play an important part in it.
#4
kewlcatkez
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Posted 22 July 2008 - 09:30 AM
Firstly, Please see the following thread-article (here at Apparelyzed) which is specifically about SCI in children: http://www.apparelyz...?showtopic=4883
I am so sorry that you had to find us here due to these circumstances. I am going to speak form my experiences (as a trained RN prior to disability and for a time after) and what I have gleaned since my life took this path, so hope that is ok. My Forté is Cardiology, so bear that in mind, lol...
No one knows whether or not he will improve significantly. However, as he is an incomplete injury, it is very very reassuring. I say this as all injuries are different, but Incomplete injuries vary very very much and as some of the 'signals' are still getting thru (as the cord is not totally crushed or severed) There is hope. Also be aware and reassured that at this early stage there is chance and hope that Spinal shock (where the gates to the nerves below injury get flooded and reflexes are lost etc. This returns when inflammation subsides -) brings a little more function (like I said, varying degrees dependent on incomplete or complete status and injury type) Being incomplete it is reassuring that he may regain more function in the next few months, even up to 2 years or more afterwards.
Picking up your points in your reply above (about children recovering more) -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).
With regards to the Ventilator. Changes in breathing patterns are observed following SCI/D affecting the thoracic and cervical spine. Obviously, the higher up the injury/lesion, the more of an effect it will have. After a higher C injury, paralysis of the hemi-diaphragm results in quite a big reduction in (tidal) volume and an increase in respirations. The act of breathing involves more than the Diaphragm (altho it is of course key). Breathing includes more than the Diaphragms movement. Therefore, the diaphragm can sometimes be moved by the other inspiratory muscles - Intercostal (between the ribs) etc, and so Some people with very high injuries can breathe without a vent for moderate periods - eventually. (the muscles have to strengthen). So again, there is hope.
The key to this hope, along with the/any Spinal shock subsiding is 'rehabilitation/Physiotherapy'. Chest physio, Chest percussion (where the chest is tapped loosen secretions) etc are very useful not just to prevent infection, but to help strengthen/initiate a cough, which makes the muscles work! He should be having this even whilst he is in ITU/ICU, even if he cannot move (the Therapists,nurses will do 'passive' exercises). This also helps to reduce and prevent infection and is a must.
It is also important to realise that even those people who are so called 'vent dependent', can eventually be weaned from the vent for anything from short periods to huge chunks of the day. Also there is a fairly new treatment involving a 'pacemaker'. Much in the same way as a Heart is stimulated by a cardiac pacemaker to initiate a beat, a phrenic nerve pacemaker helps with stimulating a breath.
The Phrenic Nerve P/maker (PNP) stimulates the Phrenic nerve - fed by the nerves which exit at C4-C6. Therefore, those with a spinal cord injury above this (who fulfill the criteria) may be able to have a PNP fitted.
With regards to the question about Spinal units: Here is a link to a page where you can find the details of Spinal units in the UK AND Repub Ireland ( wasn't sure if you meant N/Ireland or Republic of Ireland):
http://www.spinalnet...0256C08006B1FBC
Most Spinal injuries Units such as Stoke Madeville for eg have dedicated Children's branch, others cater for a wide span.
I am sorry if this is a lot of information to digest and if I have gone on too much. This is a trying and distressing time to say the least. The frustrations and down times are part of grief and its always better to express grief than bottle it up. It must be very difficult to see such a young child in such a situation. My thoughts and prayers are with you all.
I hope this hasn't been too overwhelming..
Take care,
K
I am so sorry that you had to find us here due to these circumstances. I am going to speak form my experiences (as a trained RN prior to disability and for a time after) and what I have gleaned since my life took this path, so hope that is ok. My Forté is Cardiology, so bear that in mind, lol...
No one knows whether or not he will improve significantly. However, as he is an incomplete injury, it is very very reassuring. I say this as all injuries are different, but Incomplete injuries vary very very much and as some of the 'signals' are still getting thru (as the cord is not totally crushed or severed) There is hope. Also be aware and reassured that at this early stage there is chance and hope that Spinal shock (where the gates to the nerves below injury get flooded and reflexes are lost etc. This returns when inflammation subsides -) brings a little more function (like I said, varying degrees dependent on incomplete or complete status and injury type) Being incomplete it is reassuring that he may regain more function in the next few months, even up to 2 years or more afterwards.
Picking up your points in your reply above (about children recovering more) -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).
With regards to the Ventilator. Changes in breathing patterns are observed following SCI/D affecting the thoracic and cervical spine. Obviously, the higher up the injury/lesion, the more of an effect it will have. After a higher C injury, paralysis of the hemi-diaphragm results in quite a big reduction in (tidal) volume and an increase in respirations. The act of breathing involves more than the Diaphragm (altho it is of course key). Breathing includes more than the Diaphragms movement. Therefore, the diaphragm can sometimes be moved by the other inspiratory muscles - Intercostal (between the ribs) etc, and so Some people with very high injuries can breathe without a vent for moderate periods - eventually. (the muscles have to strengthen). So again, there is hope.
The key to this hope, along with the/any Spinal shock subsiding is 'rehabilitation/Physiotherapy'. Chest physio, Chest percussion (where the chest is tapped loosen secretions) etc are very useful not just to prevent infection, but to help strengthen/initiate a cough, which makes the muscles work! He should be having this even whilst he is in ITU/ICU, even if he cannot move (the Therapists,nurses will do 'passive' exercises). This also helps to reduce and prevent infection and is a must.
It is also important to realise that even those people who are so called 'vent dependent', can eventually be weaned from the vent for anything from short periods to huge chunks of the day. Also there is a fairly new treatment involving a 'pacemaker'. Much in the same way as a Heart is stimulated by a cardiac pacemaker to initiate a beat, a phrenic nerve pacemaker helps with stimulating a breath.
The Phrenic Nerve P/maker (PNP) stimulates the Phrenic nerve - fed by the nerves which exit at C4-C6. Therefore, those with a spinal cord injury above this (who fulfill the criteria) may be able to have a PNP fitted.
With regards to the question about Spinal units: Here is a link to a page where you can find the details of Spinal units in the UK AND Repub Ireland ( wasn't sure if you meant N/Ireland or Republic of Ireland):
http://www.spinalnet...0256C08006B1FBC
Most Spinal injuries Units such as Stoke Madeville for eg have dedicated Children's branch, others cater for a wide span.
I am sorry if this is a lot of information to digest and if I have gone on too much. This is a trying and distressing time to say the least. The frustrations and down times are part of grief and its always better to express grief than bottle it up. It must be very difficult to see such a young child in such a situation. My thoughts and prayers are with you all.
I hope this hasn't been too overwhelming..
Take care,
K
Edited by kewlcatkez, 22 July 2008 - 09:31 AM.
Ex Nurse (med retired)
Connective tissue disorder & associated paralysis.
Connective tissue disorder & associated paralysis.
#6
robbo100bike
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Posted 22 July 2008 - 10:08 AM
Life is cruel. i think we would all swap places were we able. I was 27 when i was injured and cant even begin to fathom how a child and parents cope during these traumatic times.
I suffered an incomplete spinal cord injury at C2-C5 and was paralysed neck down in 1997 (blod clot whilsts doing Karate). I couldnt use my arms for 2 weeks and it was 3months before proper function returned to my hands to be able to push a wheelchair etc. I learnt to walk again in months 3-6 post injury. When i left hospital after 6months i was walking on crutches. Long story short i am 10 years on and still use 2 sticks and a wheelchair for distance. I am also now a husband, father, fulltime working and have acomlpished quite abit despite.
So i guess at this early stage anything is possible for your friends son.
The Spinal Injuries Association can be useful resource http://www.spinal.co.uk/ they have sections on Newly Injured and think they offer children and parents.
If i can help in anyway feel free to contact me paul.robinson2@jacobs.com, will send my mobile or home number. i am in UK (Leeds), i am no expert but have been thro the "system" might be able to put you in touch with my contacts. Or even if they just need to vent.
All the best
Paul
I suffered an incomplete spinal cord injury at C2-C5 and was paralysed neck down in 1997 (blod clot whilsts doing Karate). I couldnt use my arms for 2 weeks and it was 3months before proper function returned to my hands to be able to push a wheelchair etc. I learnt to walk again in months 3-6 post injury. When i left hospital after 6months i was walking on crutches. Long story short i am 10 years on and still use 2 sticks and a wheelchair for distance. I am also now a husband, father, fulltime working and have acomlpished quite abit despite.
So i guess at this early stage anything is possible for your friends son.
The Spinal Injuries Association can be useful resource http://www.spinal.co.uk/ they have sections on Newly Injured and think they offer children and parents.
If i can help in anyway feel free to contact me paul.robinson2@jacobs.com, will send my mobile or home number. i am in UK (Leeds), i am no expert but have been thro the "system" might be able to put you in touch with my contacts. Or even if they just need to vent.
All the best
Paul
#8
Dave Bishopstone
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Posted 22 July 2008 - 08:54 PM
chiara, on Jul 22 2008, 08:06 AM, said:
Hi
My friends little boy, 6 years old, has suffered a C1 injury in a driving accident. This was 6 weeks ago and initially they felt he would walk again although it may take 1-1.5 years, they're now saying he probably won't as he's not making any progress. My friend broke her leg in the accident and is in too much shock to find out anything other than what she's being told in the hospital. The boy is on a ventilator and although was talking away to my son about spiderman when we visited the hospital on friday, they've told her that she may have to switch off the ventilator eventually if his lungs worsen. This is a minefield and the most terrifying thing I've ever seen. Does anyone have any advice? We're in Ireland and wonder would the prognosis be any better in America or elsewhere? As far as I know, it's an incomplete injury, his arms and legs have no feeling but his stomach and groin do have feeling. Hope please!
My friends little boy, 6 years old, has suffered a C1 injury in a driving accident. This was 6 weeks ago and initially they felt he would walk again although it may take 1-1.5 years, they're now saying he probably won't as he's not making any progress. My friend broke her leg in the accident and is in too much shock to find out anything other than what she's being told in the hospital. The boy is on a ventilator and although was talking away to my son about spiderman when we visited the hospital on friday, they've told her that she may have to switch off the ventilator eventually if his lungs worsen. This is a minefield and the most terrifying thing I've ever seen. Does anyone have any advice? We're in Ireland and wonder would the prognosis be any better in America or elsewhere? As far as I know, it's an incomplete injury, his arms and legs have no feeling but his stomach and groin do have feeling. Hope please!
Hi chiara.
Our son, although adult sustained an incomplete SCI, we were initially told he may never walk again, but it would be imposssible to predict his eventual level of ability. As the first two years ticked by we saw our son walk, albeit tentative and unsteady steps supported by staff and with the use of crutches as he left the Spinal Unit. Once home he progressed from his wheelchair to a Zimmer Frame, then two crutches, then one, now a single walking stick. Now a few more years on after the accident where he is with walking is probably the 'destination point'. Though of course certain other bodily functions remain compromised. For those first two years you pray for a miracle - then one day it dawns on you - it has taken place unnoticed - he has adapted to a new situation, found new strength, not only in body but in character and so have we.
Our son was treated in the USA where the accident happened, OK the treatment was good but I suspect he would have received much the same treatment in the UK, in fact he spent 6 months in the Duke of Cornwall Unit, Salisbury and I can't speak too highly of their dedication and care.
I really hope the little lad does make progress - there is little anyone can say to relieve the burden of worry and concern - it is a difficult path - but the sun will shine again!!
God Bless
Dave
#9
C Herod
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Posted 22 July 2008 - 09:31 PM
No one knows what the future holds. The doctors have to give you worst case i think. I am so sorry about all this. Its just so sad. I hope you and his mom stay strong and keep things positive for him. Just remember these kinds of injuries take time recover from. Ya'll will be in my prayers.
#10
sits2much
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Posted 23 July 2008 - 01:12 AM
I agree with the posts above talking about "no one really knows" each case is sensitive and unique.... Keeping his spirits up will help him heal more!! I am always talking to parents with children who are going through difficult things to keep positive... My analogy is "Get up and try or lay down and die" of course I speak this regarding giving up or putting your all into it!!
I have seen so many kids and adults with life threatening illnesses, the ones that keep positive and fight, not giving up and ones who just give up and lay around in a full depression always thinking of the negatives... Most the time I find that the ones who keep positive and fight do much better than the ones who give up!!
I have seen so many kids and adults with life threatening illnesses, the ones that keep positive and fight, not giving up and ones who just give up and lay around in a full depression always thinking of the negatives... Most the time I find that the ones who keep positive and fight do much better than the ones who give up!!
#11
robbo100bike
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Posted 23 July 2008 - 01:03 PM
Have you considered as something positive to do, starting a charity fund for your friends son (name?)? It would be something that people can focus on during this hard time and would hopefully provide some money which may be helpful later in rehab when equipment is needed. Its also better for hospital visitors rather than bringing endless boxes of chocs The usual are sponsored runs, pub quiz or race nights.
Food for thought.
Food for thought.
#12
chiara
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Posted 24 July 2008 - 02:42 PM
Hi Robbo100bike! Yes, there is a fundraising night organised for him because money is going to be a big issue. Unfortunately for me, I'm moving abroad in a month which leaves me such little time to help out. My 5 year old son and this little boy are best friends so all I can do is bring my son up to see him as often as I can until we leave. Aparantly he was in great form after my sons visit last week which is good to hear. it's a crime that a little kid is kept isolated from other children but I guess it's neccessary at the moment. We're visiting on saturday so I hope that helps. I will try and organise some kind of ongoing fund before I leave though, possibly through his school. I have to say, you people are amazing, I feel honoured to have 'met' you and can't believe I was so blind to this reality before. You make assumptions I guess and I've learnt so much about all this in the last couple of weeks. One question, I asked on the mobility page but I don't think anyone has answered is this- my friends has been told of a wheelchair that can hold a ventilator and eye and jaw controlled technology but it's 5000 euro (7500 dollars? 4000 pounds?). Is it possible to get a better deal online or from the usa? If I can save her some money that would be one thing. The chair she was told about was the Handivipp. any ideas?
thanks for all the advice and kind words...I will pass them on
thanks for all the advice and kind words...I will pass them on
#13
robbo100bike
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Posted 24 July 2008 - 03:28 PM
I think you have my link for invacare website. Shop about on prices.
If you can set up an on-line donations or someting, let me kno so i can pass on a little.
alll the best
If you can set up an on-line donations or someting, let me kno so i can pass on a little.
alll the best
#15
chiara
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Posted 27 July 2008 - 08:58 AM
Hi
Just an update on the little guy. It seems it's a c2 injury...not sure if that's better/worse, but although it's 'incomplete' the lesions on the spine mean the link is broken, so to speak and little chance of linking up again. He does get a lot of stomach pain though, wind, which was causing him quite a lot of distress. The nurse said it could be 'spasms', or perhaps he really feels it. He sure as hell looked as if he felt it, he was in agony. They're just praying for a miracle. It was pretty devastating yesterday actually, he is distressed, wants to play, wants to go home. His mother was concerned about getting a chair, I repeated what robbo100bike had said, about perhaps not spending money on something which may prove to be unneccessary, she looked so hopeful when I said that, it's gutting.
Anyway, that's all for now. Thanks for all the support.
c
Just an update on the little guy. It seems it's a c2 injury...not sure if that's better/worse, but although it's 'incomplete' the lesions on the spine mean the link is broken, so to speak and little chance of linking up again. He does get a lot of stomach pain though, wind, which was causing him quite a lot of distress. The nurse said it could be 'spasms', or perhaps he really feels it. He sure as hell looked as if he felt it, he was in agony. They're just praying for a miracle. It was pretty devastating yesterday actually, he is distressed, wants to play, wants to go home. His mother was concerned about getting a chair, I repeated what robbo100bike had said, about perhaps not spending money on something which may prove to be unneccessary, she looked so hopeful when I said that, it's gutting.
Anyway, that's all for now. Thanks for all the support.
c
#16
robbo100bike
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Posted 28 July 2008 - 11:00 AM
All the best for the little guy. Please keep us posted. He is on our thoughts.
The doctors might be being pessimistic, keep on fighting. I was told i would never walk again, i walked out the hospital.
The doctors might be being pessimistic, keep on fighting. I was told i would never walk again, i walked out the hospital.
#17
chiara
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Posted 22 September 2008 - 08:16 PM
Just an update. The boy has made no progress. He's still on a ventilator and although is now attending school, he's no better off than he was at my first post. He feels pain in his stomach, to the point where he's screaming with agony. But nothing else. Is it too late now for anthing positive to happen? I had so much hope at my first post, now it feels hopeless.
thanks for all the feedback
chiara
thanks for all the feedback
chiara
#18
eleanorigby
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Posted 29 September 2008 - 02:32 AM
Reading this post has broken my heart. Such a hard thing for such a small boy. Incomplete spinal cord injuries can gain function for up to two years after the injury I believe. The spine goes into shock right after the injury and it can take a while for that to go away, but the reality is that he may not get any better. If not, it's important that the people around him support his life in whatever form he's in as I'm sure you will. Is the boy doing any physical therapy? This could help him regain function. I continued physical therapy after I left the hospital for several years and I know it helped me a great deal. I am not one of those "the doctor's said I would never walk, but I did" stories. I can't walk, but my life is a really nice one and I'm much stronger than anyone ever thought I would be based on my injury level (c6/7 incomplete). Sometimes things are hard, but everyone has obstacles in their lives, this is just mine.
I'm sorry to hear about the stomach pains. The doctors don't have any ideas? Maybe he should see a specialist, this is not something that should be tolerated. How does he describe it? I found this after some research. There is a type of pain associated with SCI's called visceral pain. It's described as "Visceral pain usually begins a short time following SCI. It occurs in the abdomen (stomach area) either above or below the level of injury. The pain is described as burning, cramping and constant." As for treatment, they said, "Visceral pain is best treated by a doctor because it can be caused by a number of factors. The pain may stem from damage to nerves and relieved by opiates and/or by neuropathic pain-relieving medications. The pain can result from damage to organs like the bladder, liver, kidneys, and intestines. Treatment options might include modifying your bowel or bladder management program or through surgery." Here's the link: http://www.spinalcor...asp?durki=41119 This is a quality of life issue and I'm surprised that the doctors aren't being more pro-active. No 5 year old boy should have chronic pain like that.
Whatever happened with the chair? Were you able to find an affordable one or raise the money? I hope so. Did his mom have insurance? Insurance paid for almost all of my stuff and when they dropped me after over half a million in medical bills (which they paid thank goodness!), I was able to get onto a state program (I'm in the US) which covered my medical equipment for me since I was a child. They wouldn't have helped if I had been an adult when I was injured. I hope things get better and to hear some positive updates soon. Don't feel hopeless. when someone is first hurt, everyone is always over-hopeful in a way, it's astate of shock. When things don't progress like they thought, which they never do, everyone starts to feel like you're feeling. The key is to not let that stop you from being a positive force in this boy's life. SCI's are notoriously drawn out lifetime struggles, but they aren't the end of life.
I'm sorry to hear about the stomach pains. The doctors don't have any ideas? Maybe he should see a specialist, this is not something that should be tolerated. How does he describe it? I found this after some research. There is a type of pain associated with SCI's called visceral pain. It's described as "Visceral pain usually begins a short time following SCI. It occurs in the abdomen (stomach area) either above or below the level of injury. The pain is described as burning, cramping and constant." As for treatment, they said, "Visceral pain is best treated by a doctor because it can be caused by a number of factors. The pain may stem from damage to nerves and relieved by opiates and/or by neuropathic pain-relieving medications. The pain can result from damage to organs like the bladder, liver, kidneys, and intestines. Treatment options might include modifying your bowel or bladder management program or through surgery." Here's the link: http://www.spinalcor...asp?durki=41119 This is a quality of life issue and I'm surprised that the doctors aren't being more pro-active. No 5 year old boy should have chronic pain like that.
Whatever happened with the chair? Were you able to find an affordable one or raise the money? I hope so. Did his mom have insurance? Insurance paid for almost all of my stuff and when they dropped me after over half a million in medical bills (which they paid thank goodness!), I was able to get onto a state program (I'm in the US) which covered my medical equipment for me since I was a child. They wouldn't have helped if I had been an adult when I was injured. I hope things get better and to hear some positive updates soon. Don't feel hopeless. when someone is first hurt, everyone is always over-hopeful in a way, it's astate of shock. When things don't progress like they thought, which they never do, everyone starts to feel like you're feeling. The key is to not let that stop you from being a positive force in this boy's life. SCI's are notoriously drawn out lifetime struggles, but they aren't the end of life.
Edited by eleanorigby, 29 September 2008 - 02:34 AM.
Insert witty, intelligent and deep quote here.
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