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  • 6 years old seeks your advice from Naples Italy

    My 6 year old son got injured in a car accident on July 15 (regularly wearing seatbelts, even if the lombar type, that idiotly I reputed safe since used on airplanes. The other 2 sons wearing normal seatbelt came out relatively safe from the crash).
    From the MRI emerged a C/6-C/7 injury.
    He is in rehab in Rome since August 11th. Sensory Evocked potentials were almost normal in August and non existant last week. Although the injury is at the above level, he can move arms and hands normally and seems to have control of higher abdominal muscles.
    One doctor defined him T2 and another T5.
    Since the accident there's no motory progress of his legs. No movement, no sensation, so pain, save for the first 2 or 3 weeks (occasional pain at the fingers of the feet).
    Since a couple of weeks he seems to feel the need to urinate. When he tells us so, 7-8 times out of 10 he indeed urinates, although he doesnt feel it. Yesterday he told us he needed to defecate because he felt pain in his buttocks, and indeed defecated, even if aided by pressure applied on the stomach.
    As you can imagine my wife and I (and the older 8 years old brother) are desperate. We think that rehab here is just teaching him to use the wheelchair. As soon as we arrived, less than one month after the crash, they told us our son would have a normal life on a whhelchair. They do not consider legs at all in rehab. Just some passive moving, and than exercises for the upper part of the body.
    My wife and I are thinking of moving him to Insubruck Center, hoping the will be more active in getting care of the legs also. I have read much on the activity based rehabilitation, and we want to give it a try. Does any one have suggestions? I emailed Wise Young long ago but he never replied. Do we have to resignate after less than 2 months from the trauma? Can activity based programs or stimulation of the legs repristinate transmission to the legs? How come that my son moves more than what he should? Does signal pass over the injury point? Would you wait some or try immediately stem cells transplant or some alternative terapy? What do you think of Giselher Schalow program?.
    Thanks to anyone will help.
    Tommaso
    Last edited by TommasoSr; 09-14-2006, 04:34 PM.

  • #2
    With movement being present this soon after the injury, there is indeed promise of recovery, but if he doesn't have enough strengh to walk right now, it's best that he learn to use a chair. I know it doesn't feel like it right now, but his chances for a significant recovery and a full life are very good. In the United States we have accreditation procedures for rehabilitation facilities. You need to explore if there is something similar in Europe, check in to the qualifications of the physicians and facilities that you are using and move your son to more qualified care if it exists.

    Other people will be responding to your post soon. You will have loads of support over the internet. There are people in Europe in our community and they may be able to make helpful suggestions.

    Incidentally, his level may in fact be changing from day to day as he recovers so don't be alarmed when the doctors have differing labels. If anything that's a good sign.

    I'm sorry for all the suffering you and your family are enduring. We're holding you in our hearts.

    RAB
    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.

    Comment


    • #3
      Thanks SCI nurse.
      Unfortunately, reading it over, I made a mistake in my first posting, writing my son moves legs and hands. He moves ARMS and hands. HE DOES NOT move LEGS at all, exept for reflexes.
      Sorry for the miswriting, stress is building on me. I just edited the post so others will read the correct facts
      Last edited by TommasoSr; 09-14-2006, 04:35 PM.

      Comment


      • #4
        I am so sorry to hear about your son's injury. You and your family are in my prayers. I hope our European CareCurers will be replying to your post.
        Daniel

        Comment


        • #5
          Tomorrow at 4 pm two months will be passed since I had that stupid and tragic car accident in which Francesco, my 6years old son, got a C6/7 SPI. Since then, the whole world collapsed on me. A funny, dynamic and smart child was suddenly thrown into a world of sufferance and despair. Today he took the fist tour into a wheelchair. I forced a smile, but then had to run away crying. He is into rehab in a place near Rome, been here for a month, but as soon as we arrived they told us our son would never walk. We didn’t and don’t accept it, even if we realize that every day without enhancements is a piece of hope that gets down the sink.
          We read around – mainly here – that activity based programs (FES, treadmill, etc) could be useful both for preventing no use learning by cord cells and to reestabilish some motory function. The problem is will Francesco at his age be able to follow an intensive training program? Do we have the right to force him thru this.? Here in Rome rehab is just one hour and a half per day, most of it playing, and its directed only to the upper part of the body; the legs are just stretched 10 minutes a day (save for the passive movements me and my wife have him make in the afternoon).
          Does anybody have experiences of harder regimes for young children?
          Does anybody know if famed Hoch Zirl clinic in Innsbruck does use FES and other activity based based programs ?
          Thanks to everybody. Just reading you is great support.
          Last edited by TommasoSr; 09-14-2006, 04:32 PM.

          Comment


          • #6
            Hi TommasoSR

            I echo your pain and frustration. My 4 yr old son was in an RTA in Feb 06 and is T12 incomplete. His rehab seems to be to get use to life in a wheelchair or at least wait until his arms get longer and they can do more stuff.

            Don't give up my son has regained his hip flectors and adbuctors and there seems to be more sensation coming back in the last week.

            We are trying laser accupuncture here but check out Cindy Kay's post for info on clinic in France where I know an number of child SCI from Ireland have gone but with mixed results.

            I am looking at Hyperbaric Oxygen Therapy www.hbomedtoday.com and www.hbot4u.com and also think that a FES bike might be a good investment. Have started saving.

            Kids seems to take to rehab much better and don't have the same fear as adults so an intensive training program might seem like fun to him. Sean spends alot of time on the floor and this I belive is a great phyiso workout as it places demands on dormant muscles.

            PM me if I can be of any help. From what I have read SCI with high injuries have a good chance of walking and I have met people with high injuries who have walked.

            Comment


            • #7
              Originally posted by TommasoSr
              My 6 year old son got injured in a car accident on July 15 (regularly wearing seatbelts, even if the lombar type, that idiotly I reputed safe since used on airplanes. The other 2 sons wearing normal seatbelt came out relatively safe from the crash).
              From the MRI emerged a C/6-C/7 injury.
              He is in rehab in Rome since August 11th. Sensory Evocked potentials were almost normal in August and non existant last week. Although the injury is at the above level, he can move arms and hands normally and seems to have control of higher abdominal muscles.
              One doctor defined him T2 and another T5.
              Since the accident there's no motory progress of his legs. No movement, no sensation, so pain, save for the first 2 or 3 weeks (occasional pain at the fingers of the feet).
              Since a couple of weeks he seems to feel the need to urinate. When he tells us so, 7-8 times out of 10 he indeed urinates, although he doesnt feel it. Yesterday he told us he needed to defecate because he felt pain in his buttocks, and indeed defecated, even if aided by pressure applied on the stomach.
              As you can imagine my wife and I (and the older 8 years old brother) are desperate. We think that rehab here is just teaching him to use the wheelchair. As soon as we arrived, less than one month after the crash, they told us our son would have a normal life on a whhelchair. They do not consider legs at all in rehab. Just some passive moving, and than exercises for the upper part of the body.
              My wife and I are thinking of moving him to Insubruck Center, hoping the will be more active in getting care of the legs also. I have read much on the activity based rehabilitation, and we want to give it a try. Does any one have suggestions? I emailed Wise Young long ago but he never replied. Do we have to resignate after less than 2 months from the trauma? Can activity based programs or stimulation of the legs repristinate transmission to the legs? How come that my son moves more than what he should? Does signal pass over the injury point? Would you wait some or try immediately stem cells transplant or some alternative terapy? What do you think of Giselher Schalow program?.
              Thanks to anyone will help.
              Tommaso
              Dear Tommaso,

              I am sorry to hear about your son. Your description suggests strongly to me that your son will recover substantially. Here is what I find hopeful,
              1. He has quite a lot of function below his injury level, even though you suggest that he does not have feeling below his waist.
              2. The fact that his somatosensory evoked potentials were good in August is also a good sign.
              3. His report that he can feel the need to urinate and defecate are hopeful signs.
              4. You say that he has reflexes in his legs. That is good.

              He is still relatively early after injury. This means that he has a lot of recovery ahead of him. A good rehabilitation center is important. The Innsbruck group is good. If you are in Vienna, you might try to see Dr. Milan Dimitrijevic who is sometimes there; I have great respect for him. I know Dr. Schalow and think highly of his program. In the United States, I recommend the Shriner's Hospital in Philadelphia.

              The pattern of his symptoms, as you describe them to me, suggests to me that he may have two injuries, one in his cervical region and the other in his lumbar area (perhaps responsible for some of his symptoms). Have they done an MRI of his lower spine? There is one study by Milan Dimitrijevic from the 1980's suggesting that as many as 15% of people might have an occult injury to the lower spine, masked by an upper injury.


              I am sorry but I have been travelling a lot in China and am not always able to get to my email for a few days at a time. This means that I have fallen behind and am still trying to work through the thousands of emails that I have gotten.

              Wise.
              Last edited by Wise Young; 09-15-2006, 12:34 PM.

              Comment


              • #8
                Tomasso,

                I am so sorry for you and your family. My husband had a C5/C6 complete injury over a year ago.

                Please continue reading the carecure pages and you will find many stories of hope. Your son has had wonderful recovery already and you should feel very encouraged that he has gotten back so much sensation and control already. Good signs! He is so young, and there is so much hope for him. Remember what the others have said, he is just starting out in his recovery. People always say that the most recovery happens in the first 6 months to a year, and some people continue to recover even after that. So it's early days, and there's everything to wish for.

                I understand your grief - everyone will mourn for a long, long time. You will be able to keep that in your heart, though, and put on brave smiles for your son.

                Keep posting here -- there are many members from Europe on the forum and I'm sure they will respond soon.

                -Brighter days

                Comment


                • #9
                  Tomasso,

                  I believe the Kennedy Krieger Institute in Maryland has programs specifically tailored for SCI children. Perhaps you can call them and ask if they are aware of similar programs in Italy?

                  http://www.kennedykrieger.org

                  Best wishes,
                  Brighter Days

                  Comment


                  • #10
                    It's still so early, and with many positive signs! Keep your chin up and eyes open, things should continue to get better for some time to come.
                    Rick

                    GO FORWARD! 2 FIGHT! PARALYSIS!

                    Comment


                    • #11
                      Questions for Dr. Young

                      Originally posted by Wise Young
                      Dear Tommaso,

                      I am sorry to hear about your son. Your description suggests strongly to me that your son will recover substantially. Here is what I find hopeful,
                      1. He has quite a lot of function below his injury level, even though you suggest that he does not have feeling below his waist.
                      2. The fact that his somatosensory evoked potentials were good in August is also a good sign.
                      3. His report that he can feel the need to urinate and defecate are hopeful signs.
                      4. You say that he has reflexes in his legs. That is good.

                      He is still relatively early after injury. This means that he has a lot of recovery ahead of him. A good rehabilitation center is important. The Innsbruck group is good. If you are in Vienna, you might try to see Dr. Milan Dimitrijevic who is sometimes there; I have great respect for him. I know Dr. Schalow and think highly of his program. In the United States, I recommend the Shriner's Hospital in Philadelphia.

                      The pattern of his symptoms, as you describe them to me, suggests to me that he may have two injuries, one in his cervical region and the other in his lumbar area (perhaps responsible for some of his symptoms). Have they done an MRI of his lower spine? There is one study by Milan Dimitrijevic from the 1980's suggesting that as many as 15% of people might have an occult injury to the lower spine, masked by an upper injury.


                      I am sorry but I have been travelling a lot in China and am not always able to get to my email for a few days at a time. This means that I have fallen behind and am still trying to work through the thousands of emails that I have gotten.

                      Wise.
                      Dear Doctor Young
                      Thank you so much for your time and your attention. You are one of the few hopes for thousands of people with SCI worldwide. On behalf of them, of my family, of my son Francesco and of myself, I do thank you.
                      Now I’d have some other questions, regarding which I haven’t had satisfying answers from the doctors here.
                      First of all, I have to add some info for you:
                      - my son does not have sensation at waist level; his sensations terminate a little below the nipples. He does seem to have high abdominal, but they aren’t sure;
                      - he has a diaphragmatic respiration;
                      - He has flaccid legs; he never had a spasm; he has clonism at both feet, but it seems to me less than past month; he does not make any spontaneous movement;
                      - He does indeed feel the need to urinate (he says the area of his penis hurts a little, when he has to go); when he does say so, he indeed urinates, spontaneously or with a light massage, after 2-3 minutes; if he caterizes after urinating, he still makes from 70 to 100 ml. of urine. When he urinates he doesn’t feel anything and does not realize he's doing it. He is been on Ditropan for 3 weeks. He still urinates in his diapers, between catheters and when he forgets (because playing or doing something interesting) to say he needs to go;
                      - A few days ago he told us he had to defecate (he said his abdomen hurt, as when he had to go to bathroom pre-accident); it happened only once, but he hasn’t defecated at all since;
                      - He has achillean reflexes; I do not know about rotulean reflexes (today doctors should finally give me the relations about my son I asked them 3 weeks ago); he has normal osteo-tendinean reflexes;
                      - His arms and hands are normal; thay say maybe the little finger of left hand is a bit less functional, but it isn’t easily evident.

                      Now let me ask you some questions:
                      1) I insisted with doctors for searching a hidden lesion in the lower section, as you suggested (I had already read many of your writings and I had reasoned that if the signal passed the lesions in c6/c7 sufficiently to let him move the arms and hands, there should be something else that blocked the legs). They said there was nothing. What should they look for, in particular ? from a MRI emerged, among other things,: “alteretions of edematous type visible at vertebral levels L3, L4 and L5”. Could it be it? And after 2 months, shouldn’t it have been reabsorbed?
                      2) Following trauma, my son had also a Salt Washing Syndrome that was almost killing him; they normalized the sodium in august and everything was ok, but he still drinks a lot more than before the accident, and we are always fearful there might be something wrong with sodium; blood controls are regular; but is the grown thirst another effect of SCI? He drinks more than 2, 2,5 liter per day, even if he stays at a air conditioned temperature and, obviously, doen not sweat at all;
                      3) We have the intention of undergo a more intense rehab that takes care of his lower limbs also (as I wrote, he’s just exercising the torso here); we’d like him to use FES, lokomat, pool walking etc. That is why we plan to move him someplace, possibly Innsbruck. What do you think? Might it be useful, in his conditions? I read somewhere that use of FES is not possible in case of flaccid legs. Is it true? Could intensive rehab stimulate some motory recovery (10 million bucks question)?;
                      4) Since first day post accident, they told us Francesco had intact anal reflex, saying it was a positive sign; he does not have control of the anus though. Is presence of anal reflex sufficient to make him an “incomplete” (I obviously asked physicians here to complete the Asia standard model, also to enroll Francesco in Miami project data bank, but they still haven’t given it to me) or not ?
                      5) Do you think possible that somatosensorial evocked potentials gave such different results (in august they were “normal”; in September they were non existent)? Is it more probable that one of them was completely mistaken?
                      6) He had the trauma 2 months and 3 days ago. Since then, no leg movement. Can we still honestly hope in some motory recovery or not?
                      7) At this point in time, would you undergo any cell therapy or would you wait (as we have for now decided)? Do you know of any trial worthwile considering for a 6 years old child?
                      I know I’m asking you a lot of questions, some of them almost impossible to answer. You know how we feel. You can imagine how I can feel, since I was the driver and the accident was entirely my fault. Please try to find the time to help me.
                      Thank you.
                      Tommaso

                      P.S.
                      As to the prevention side, I don’t know if lombar seatbelts are legal in the US, as they are in Italy. If they are, people should campaign to abolish them. People (like me) might think they are saving their children by not letting them go 100 yards without belts (as my 3 sons did since their birth), and instead they are risking to condemn them to wheelchair lifelong. In the same accident, the other 2 sons, who had normal belts (transversal) were "almost" save (one of them had diapragmatic lacerations, but is ok now, and the other just broke his omerus bone).
                      P.P.S.
                      Today Sept. 19 they finally compiled the Asia model. They gave normal points from C2 to T4, and 0 points from T5 on. No voluntary anal contraction. No compilation of anal sensation (see reflexions above).
                      Last edited by TommasoSr; 09-19-2006, 07:05 AM.

                      Comment


                      • #12
                        Tommaso - I have nothing of great intelligence to offer you other than become your own best doctor/physiotherapist for your son.

                        Perhaps some things to look into?

                        http://www.easystand.com/magician-comfy/index.cfm

                        http://www.restorative-therapies.com/
                        Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                        T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                        Comment


                        • #13
                          Hello Tommaso,

                          It is always painful to hear a young child who has been in a situation as such and parents who are helpless to do anything for their child.

                          I wish to present myself: " I am a special massage therapist, a reflexologist, an acupressionist, a dislocated and / or a pinched nerve specialist in alternative medicine ". I would suggest going to alternative medicine such as massage therapy and please, choose a good one to help your son. Your son may have some pinched and / or dislocated nerves in his back. Take a few sessions to see if there could be some improvement in his legs. Ask the therapist if stretch exercises or special exercises you could do to help your son's legs. If this fails, move your son to a better center for a more qualified help.

                          Good luck and my prayers go with you and your family

                          Joe

                          Comment


                          • #14
                            Tomasso,
                            I am so very sorry to hear about your baby.
                            My mouth is like a magician's hat, never know what might come out of it.

                            Comment


                            • #15
                              My answers are embedded.

                              Originally posted by TommasoSr
                              Dear Doctor Young
                              Thank you so much for your time and your attention. You are one of the few hopes for thousands of people with SCI worldwide. On behalf of them, of my family, of my son Francesco and of myself, I do thank you.
                              Now I’d have some other questions, regarding which I haven’t had satisfying answers from the doctors here.
                              First of all, I have to add some info for you:
                              - my son does not have sensation at waist level; his sensations terminate a little below the nipples. He does seem to have high abdominal, but they aren’t sure;
                              - he has a diaphragmatic respiration;
                              • The nipples are T4. So, this means that his sensory level is T4.

                              - He has flaccid legs; he never had a spasm; he has clonism at both feet, but it seems to me less than past month; he does not make any spontaneous movement;
                              • When you say "clonism", you must be referring to clonus in his ankles when his foot is flexed at the ankle. The is a form of spasticity.

                              - He does indeed feel the need to urinate (he says the area of his penis hurts a little, when he has to go); when he does say so, he indeed urinates, spontaneously or with a light massage, after 2-3 minutes; if he caterizes after urinating, he still makes from 70 to 100 ml. of urine. When he urinates he doesn’t feel anything and does not realize he's doing it. He is been on Ditropan for 3 weeks. He still urinates in his diapers, between catheters and when he forgets (because playing or doing something interesting) to say he needs to go;
                              - A few days ago he told us he had to defecate (he said his abdomen hurt, as when he had to go to bathroom pre-accident); it happened only once, but he hasn’t defecated at all since;
                              • That is good that he knows when he needs to go. The fact that he still has urine suggests that his urination reflex is not fully functional. In many children in the United States, they do a Mitrofanoff procedure which allows the child to catheterize himself through the belly button and may alleviate the need for ditropan. However, this is a decision that you should undertake only only after extensive discussions with an experienced urologist. The goal is to give your son the maximum independence and he is having trouble learning to catheterize himself through the penis.

                              - He has achillean reflexes; I do not know about rotulean reflexes (today doctors should finally give me the relations about my son I asked them 3 weeks ago); he has normal osteo-tendinean reflexes;
                              • I assume that you are talking about the deep tendon reflexes at the knees. If he has reflexes in his knees and ankles (you already indicated that he has clonus in his ankles), that means that the motoneurons in his lower spinal cord are intact.

                              - His arms and hands are normal; thay say maybe the little finger of left hand is a bit less functional, but it isn’t easily evident.
                              • This is consistent with his sensory level at T4.

                              Now let me ask you some questions:
                              1) I insisted with doctors for searching a hidden lesion in the lower section, as you suggested (I had already read many of your writings and I had reasoned that if the signal passed the lesions in c6/c7 sufficiently to let him move the arms and hands, there should be something else that blocked the legs). They said there was nothing. What should they look for, in particular ? from a MRI emerged, among other things,: “alteretions of edematous type visible at vertebral levels L3, L4 and L5”. Could it be it? And after 2 months, shouldn’t it have been reabsorbed?
                              • The way that one would look for a lower lesion is first through a careful neurological examination. If he is missing reflexes in his legs and he has significant muscle atrophy, this would suggest the presence of a lower spinal cord lesion. The fact that his reflexes seem to all right is a good sign. You are correct that an MRI may not show a lesion.

                              2) Following trauma, my son had also a Salt Washing Syndrome that was almost killing him; they normalized the sodium in august and everything was ok, but he still drinks a lot more than before the accident, and we are always fearful there might be something wrong with sodium; blood controls are regular; but is the grown thirst another effect of SCI? He drinks more than 2, 2,5 liter per day, even if he stays at a air conditioned temperature and, obviously, doen not sweat at all;
                              • Sweating is usually less or absent from the body below the injury site

                              3) We have the intention of undergo a more intense rehab that takes care of his lower limbs also (as I wrote, he’s just exercising the torso here); we’d like him to use FES, lokomat, pool walking etc. That is why we plan to move him someplace, possibly Innsbruck. What do you think? Might it be useful, in his conditions? I read somewhere that use of FES is not possible in case of flaccid legs. Is it true? Could intensive rehab stimulate some motory recovery (10 million bucks question)?;
                              I agree about more intense rehabiiitation. Your son is very lucky.

                              4) Since first day post accident, they told us Francesco had intact anal reflex, saying it was a positive sign; he does not have control of the anus though. Is presence of anal reflex sufficient to make him an “incomplete” (I obviously asked physicians here to complete the Asia standard model, also to enroll Francesco in Miami project data bank, but they still haven’t given it to me) or not ?
                              5) Do you think possible that somatosensorial evocked potentials gave such different results (in august they were “normal”; in September they were non existent)? Is it more probable that one of them was completely mistaken?
                              6) He had the trauma 2 months and 3 days ago. Since then, no leg movement. Can we still honestly hope in some motory recovery or not?
                              7) At this point in time, would you undergo any cell therapy or would you wait (as we have for now decided)? Do you know of any trial worthwile considering for a 6 years old child?
                              • There are unforunately no clinicdal trial aimed at children with spinal crod injury at the present, that I know.
                              I know I’m asking you a lot of questions, some of them almost impossible to answer. You know how we feel. You can imagine how I can feel, since I was the driver and the accident was entirely my fault. Please try to find the time to help me.
                              Thank you.
                              Tommaso
                              • I understand.

                              P.S.
                              As to the prevention side, I don’t know if lombar seatbelts are legal in the US, as they are in Italy. If they are, people should campaign to abolish them. People (like me) might think they are saving their children by not letting them go 100 yards without belts (as my 3 sons did since their birth), and instead they are risking to condemn them to wheelchair lifelong. In the same accident, the other 2 sons, who had normal belts (transversal) were "almost" save (one of them had diapragmatic lacerations, but is ok now, and the other just broke his omerus bone).
                              • All seat belts should be 3-point.

                              P.P.S.
                              Today Sept. 19 they finally compiled the Asia model. They gave normal points from C2 to T4, and 0 points from T5 on. No voluntary anal contraction. No compilation of anal sensation (see reflexions above).
                              • Good. He is probably an ASIA A with a T4 level.

                              Comment

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