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Urgent Help needed for new 7 year old SCI

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    #16
    For us, if you are on FFL your insurance continues. Worth looking into.

    The Christopher & Dana Reeve Paralysis Foundation have a nice book for young children about SCI. It is designed for a child with a parent with SCI, but I think it still might be helpful. It is free. You can request a copy here.

    While you are at it, also request this book, also free.

    It is critical that your son get to a specialty SCI acute inpatient rehabilitation program. Do not allow him to be sent to a general program, or one designed for only adults, nor to a "sub-acute" or nursing home level program. He should only need 6-8 weeks of inpatient rehab, and should not need to be home with supervision (vs. going to school) any more after rehab than he does now if he gets a good rehab program as a foundation for his life.

    Also, it is time now to start the process for getting his school IEP started. Your wife should know how to go about this.

    Also, I would strongly recommend that you remove your personal e-mail from the post above in this forum. It sets you up for spammers/scammers, or cyberstalkers. If you turn on "accept private e-mail" on your profile, others here can e-mail you without knowing what your address is, and you can also communicate with others through the PM (private messages) feature. A moderator can remove that for you if you are unable to edit. Thanks.

    (KLD)
    Last edited by SCI-Nurse; 9 Jan 2013, 10:56 PM.
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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      #17
      Originally posted by SCI-Nurse View Post
      For us, if you are on FFL your insurance continues. Worth looking into.

      The Christopher & Dana Reeve Paralysis Foundation have a nice book for young children about SCI. It is designed for a child with a parent with SCI, but I think it still might be helpful. It is free. You can request a copy here.

      While you are at it, also request this book, also free.

      It is critical that your son get to a specialty SCI acute inpatient rehabilitation program. Do not allow him to be sent to a general program, or one designed for only adults, nor to a "sub-acute" or nursing home level program. He should only need 6-8 weeks of inpatient rehab, and should not need to be home with supervision (vs. going to school) any more after rehab than he does now if he gets a good rehab program as a foundation for his life.

      Also, it is time now to start the process for getting his school IEP started. Your wife should know how to go about this.

      Also, I would strongly recommend that you remove your personal e-mail from the post above in this forum. It sets you up for spammers/scammers, or cyberstalkers. If you turn on "accept private e-mail" on your profile, others here can e-mail you without knowing what your address is, and you can also communicate with others through the PM (private messages) feature. A moderator can remove that for you if you are unable to edit. Thanks.

      (KLD)
      I know, I'm on about abbreviations and buzz words again...but for those of us who don't know and for those who might read this thread after a search in the future, IEP stands for Individualized Education Plan. FFL stands for Family Friendly Leave. I am glad all of you know about these abbreviations, because as I come across them, I am at a complete loss.

      All the best,
      GJ
      Last edited by gjnl; 10 Jan 2013, 11:05 PM.

      Comment


        #18
        Originally posted by SCI-Nurse View Post
        For us, if you are on FFL your insurance continues. Worth looking into.

        The Christopher & Dana Reeve Paralysis Foundation have a nice book for young children about SCI. It is designed for a child with a parent with SCI, but I think it still might be helpful. It is free. You can request a copy here.

        While you are at it, also request this book, also free.

        It is critical that your son get to a specialty SCI acute inpatient rehabilitation program. Do not allow him to be sent to a general program, or one designed for only adults, nor to a "sub-acute" or nursing home level program. He should only need 6-8 weeks of inpatient rehab, and should not need to be home with supervision (vs. going to school) any more after rehab than he does now if he gets a good rehab program as a foundation for his life.

        Also, it is time now to start the process for getting his school IEP started. Your wife should know how to go about this.

        Also, I would strongly recommend that you remove your personal e-mail from the post above in this forum. It sets you up for spammers/scammers, or cyberstalkers. If you turn on "accept private e-mail" on your profile, others here can e-mail you without knowing what your address is, and you can also communicate with others through the PM (private messages) feature. A moderator can remove that for you if you are unable to edit. Thanks.

        (KLD)
        Email, gone. Thank you for those resources. I will look into the FFL more in depth. We've been told that the closest in-patient SCI speciality rehab center is Shriners in Sacramento... an 11+ hour commute from our home. While we're considering the option, we also have two other children we have to take into consideration/find places for. Thank you for the IEP reminder, my wife has said that you are a life-saver on that since it's something neither of us have thought about. Thank you so much for this advice and input.

        Comment


          #19
          Even though it seems impossible to go so far from home-do it.
          Get the very best now and you won't regret it.
          When my husband had his accident 4 years ago it was shocking to find out we would need to go to Craig Hospital in CO, but it was the best thing that happened. He would be in a nursing home if he (we) had not gone there and learned everything about a spinal cord injury.
          My heart goes out to you and your family.

          Comment


            #20
            David, my heart goes out to you and your family. Many of us on this site were injured in sudden and unexpected ways, throwing our families into tailspins. The early days are the hardest with so many decisions to be made. If you have not done so already, consider starting a caringbridge.org site to keep loved ones updated on your situation. It can be an emotional life-saver and is completely free. We will help you with our experience in whatever way we can.

            Comment


              #21
              Originally posted by LindaT View Post
              Even though it seems impossible to go so far from home-do it.
              Get the very best now and you won't regret it.
              When my husband had his accident 4 years ago it was shocking to find out we would need to go to Craig Hospital in CO, but it was the best thing that happened. He would be in a nursing home if he (we) had not gone there and learned everything about a spinal cord injury.
              My heart goes out to you and your family.
              Thank you. I appreciate this insight in the fullness. We have so much to consider, it's overwhelming.

              Comment


                #22
                Hi DAvid, Read your post out to my daughter- just turned 9 (christmas eve also) and she wanted me to tell you that it will be ok-he will still be able to do loads of things like horse-riding,swimming. THat's coming from a child also T1 complete-4 years post.
                Loads to share please PM me, We live in ireland and Noirin(our daughter) was 2 months in an acute hospital 3 hrs away (other probs too) then in England for rehab for another 2 months. I was also injured so was at home after hospitalization with our then 2 yr old. THankfullly my husband is a teacher and had summer leave then i took over for a month.It wasn't easy and definitely caused disruption-was kind of like life was on hold and i can count on one hand the amount of time we were all together within that period but we have survived and the good rehab was invaluable. we now travel to shriners in philadelphia for follow up orthopaedically as they are second to none. there have been times our son has felt left out and now at the age of 7 he expresses his feelings more which is good but a good psychologist has been helpful in the early days-explaining everything and we have accessed her at different stages for both children just to know they are adapting well. thankfully they are both in good form and good buddies and noirin never ceases to amaze us how she can adapt activities to suit. ASk anything-no question too silly-been there! Was also at kki baltimore that was mentioned if u need info. also if u search my posts/threads you will get a general picture of what our concerns have been(and even joys) in the last 4/5 yrs.
                Also we both still work. i am an O.T. part -time and noirin is in full time education and is rarely off sick. medical appointments have settled to monthly at this stage and we have got good at organising these more efficiently.
                Take good care of yourselves. Maybe some day they can be pen pals-or is it Facebook these days!

                Comment


                  #23
                  Originally posted by noirin's mum View Post
                  Hi DAvid, Read your post out to my daughter- just turned 9 (christmas eve also) and she wanted me to tell you that it will be ok-he will still be able to do loads of things like horse-riding,swimming. THat's coming from a child also T1 complete-4 years post.
                  Loads to share please PM me, We live in ireland and Noirin(our daughter) was 2 months in an acute hospital 3 hrs away (other probs too) then in England for rehab for another 2 months. I was also injured so was at home after hospitalization with our then 2 yr old. THankfullly my husband is a teacher and had summer leave then i took over for a month.It wasn't easy and definitely caused disruption-was kind of like life was on hold and i can count on one hand the amount of time we were all together within that period but we have survived and the good rehab was invaluable. we now travel to shriners in philadelphia for follow up orthopaedically as they are second to none. there have been times our son has felt left out and now at the age of 7 he expresses his feelings more which is good but a good psychologist has been helpful in the early days-explaining everything and we have accessed her at different stages for both children just to know they are adapting well. thankfully they are both in good form and good buddies and noirin never ceases to amaze us how she can adapt activities to suit. ASk anything-no question too silly-been there! Was also at kki baltimore that was mentioned if u need info. also if u search my posts/threads you will get a general picture of what our concerns have been(and even joys) in the last 4/5 yrs.
                  Also we both still work. i am an O.T. part -time and noirin is in full time education and is rarely off sick. medical appointments have settled to monthly at this stage and we have got good at organising these more efficiently.
                  Take good care of yourselves. Maybe some day they can be pen pals-or is it Facebook these days!
                  Thank you for this. I just sent you a PM, not sure if it went through.

                  Comment


                    #24
                    Hi David

                    Sorry that life has dealt you this blow. I have sent you a PM. This site is a great source of information, support and hope. Learning about the effects of SCI on body and especially the long term challenges that children with SCI face is very daunting.

                    Do it in stages but it is important as children with SCI are a rare and not all medical professionals will have experience in this area. This means that you sometimes need to know what to ask for because it will not always be offered if you do not ask. Some medical professionals may not know what is available.

                    UTI is one of the first things which will cause you unforeseen problems / hardship. Drinking barley water was has been a great help for us. Also we found getting Sean circumcised greatly reduced infections. The younger a boy is the easier is the recovery. I had to ask Sean's urlogist for this when he was 7 but we have not had a serious infection since.

                    Also your son sounds like a very active boy. He still can be and getting him involved in sports is great. The sooner the better - we went canoing within 3 months of Sean's accident.

                    Doing a wheelchair skills course is also a good idea. Learn how to get in and out of your wheelchair, how to cope with slopes, crossing roads and what to do if you fall out. A course like this means will take away the fear of falling for you and your son and this will mean you will have alot less accidents. We learnt the hard way.

                    Sean had a little bit of difficulty joining in wheelchair sports initally "why am I with all these people in wheelchairs", but now he loves wheelchair basketball, tennis, table tennis and swimming. Sport is not for everyone though

                    Beware the trap of the Xbox, Playstation etc. Sean can get lost in these and it is so easy, as you know they can't get into phyiscal harm, they can interact with their friends but gaming can take over. However if your little fella wants to chat with another child - even just playing games together - Sean is available.

                    Comment


                      #25
                      Originally posted by soimumireland View Post
                      UTI is one of the first things which will cause you unforeseen problems / hardship. Drinking barley water was has been a great help for us. Also we found getting Sean circumcised greatly reduced infections. The younger a boy is the easier is the recovery. I had to ask Sean's urlogist for this when he was 7 but we have not had a serious infection.
                      I think this just shows that SCI situations are not always the same. In almost 6 years, my son has only had 3 UTIs, and the first one was when he was in hospital just after his operation. His latest one was after we discovered he had told his Education Assistant (ie the person at school who assists him if required) that he didn't need to wash/disinfect his hands before cathetering...we all learnt a lesson about that one!! My son is not circumcised.

                      But whilst we have had different experiences to soimum regarding UTIs, I will agree that bladders do cause problems, and that is something that takes a lot of getting used to, plus trial and error...and is different for different people.

                      Apart from that, I agree with everything else soimum says...it's all good advice.

                      And to end on a positive note, my son tried surfing yesterday for the first time (yes, it's Summer in Australia!). He's got a board with handles, and he did pretty well despite a couple of dumpings! He has been playing in the waves for years, with a body/boogie board...other people don't realise he's a para until he gets out of the water, which is probably why he loves it so much.
                      Gordon, father of son who became t6 paraplegic at the age of 4 in 2007 as a result of surgery to remove a spinal tumour.

                      Comment


                        #26
                        i was injured 2months before my 2nd birthday in a car accident. i'll be 30(YIKES!! LOL) in july. so if any of you parents or your kids want to message me/skype(id: crypticgimp) i'd be happy to tell u my experiences and any tips. i mentor kids with disabilities as well.
                        "Smells like death in a bucket of chicken!"
                        http://www.elportavoz.com/

                        Comment


                          #27
                          Hi Folks, David informed that they screwed up the fusion operation, and tried to tell him it easy to do and quite common. Sounds like BS to me, I don't have any experience with the operation getting messed up he was looking for questions for the new doctors. Can anyone help?
                          Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

                          Comment


                            #28
                            Hi was going to pm david but will keep this post alive incase anyone else can help. sorry to hear about mess up-hope not too serious or can be reversed. When noirin had her accident the 2 vertebrae that were dislocated T3 and 6 were put back into place and stabilized with rods from c6 to T6 that are still in place and not problematic. can't understand why a fusion was performed in the first place,however know shriners consider doing fusion in new sci's after age of 10 as will prob need fusion in long run for scoliosis but they specialize in this area.
                            If can help with any specific questions ask. Dr. Betz in shriners in philadelphia is well worth contacting and i can pm an email address that was given by dr wise if ok.or his spinal liaison nurse. Sonia.

                            Comment


                              #29
                              Thanks all. To clarify, my original understanding of issue was not thorough. What occurred was the hospital we were sent to immediately after the incident went ahead and put a fusion in place (explaining to us that this was typical). Fast-forward a few days when we finally get transported to the children's hospital (I was at work) my wife shoots me a text explaining that the doctors have told her what was done at the other hospital was "wrong". It was my initial understanding that it had to be the fusion, done incorrectly, ect since it was the "typical" fix. I contacted Shriner's in Sacramento who spoke with our doctors here. They then explained to us that when they said it "wrong" they meant that it wasn't typical to be done in a child his age and that the alignment was off. They explained to us the other possibilities and due to the nature of my son's injury the collaborative team of physicians decided it best to leave the fusion in place but to readjust the alignment and hardware used. You can imagine my relief as they explained that it was only a minor issue and rather simple fix compared to what I had previously thought. I apologize for my own ignorance of the situation. Total miscommunication.
                              Last edited by DavidHillis; 17 Jan 2013, 3:39 AM.

                              Comment


                                #30
                                Glad to know it was not as serious as originally thought. You've been through enough already. Will be following Braeden's progress closely. I feel what you are going through exquisitly. And I'll be around should you need to vent.

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