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Thread: 8 month old, non traumatic SCI injury, advice, help, thoughts

  1. #1

    8 month old, non traumatic SCI injury, advice, help, thoughts

    two months ago, my then 6.5 month old son was diagnosed with neuroblastoma. In three days he went from normal baby, to ventilator dependent. On admission, the MRI showed severe cord compression through most of his spinal cord, C3 all the way down. They did not know if he was going to survive. Chemo was started.

    At his worse, he was totally paralyzed.. This arms being paralyzed only lasted for 3 days until they very slowly started to come back. His second MRI, 10 days later, had shown decrease in tumor a, but bleeding at c3-5 and way lower in the spine. He was ventilator dependent for 3 weeks. He could not pee in his own for 5 weeks.

    fast forward to now. He has two tumours at c3-5 and t2-3 (they say this was the biggest one). Both are not compressing. He also has an enhancement between the spinal cord and next layer from c5 to L1 that they don't know if it's cancer or inflation etc.

    physio here has confirmed functioning of now of c1-t1. They believe some of the chest Ts are also functioning as he can hold his chest up when sitting. We cannot confirm lower t. In the last week he has started to show some resistance and movement, with gravity, of legs. Not super strong, but they say L1 down appears to be functioning.

    i guess my question, after two months, would it be crazy to hope that someday he could walk based on his improvements? Is there things we could do to encourage it? Before suggestions for rehab, he can't go until he is totally done chemotherapy. We are at Sick Kids right now.

    would it be okay to assume that we could see his trunk come back as well? Just maybe taking longer. Or muscles are so weak?

    also, he doesn't seem to respond emotionally to pain on legs, but will move them if a pet him, or pinch him, or out something cold, he also moves them on his own. Could he get some sensation back, or certain types but not all?

    since he was admitted without being able to pee on his own for 5 weeks, he can pee now, but it's not like before. For example, sometimes he drips, or his stream isn't as strong as it use to be, it can still project though. They checked his bladder, and the passage between bladder and kidneys is fine. Could he get full full normal control back?

  2. #2
    Welcome to CareCure! As we always say, we are glad you found us, but sorry that you had to.

    So I assume you are in Canada (it helps if you can put your location on your profile). Spinal cord tumors are very unpredictable, esp. those that are vestigial tumors like a neuroblastoma. It is impossible to predict what function he may have in the future, if the chemo works. Is he having radiation therapy too? Since most of his tumor appears to be in the cervical and upper thoracic cord, it is important to remember that the nerves from the brain traveling to the lower cord (and therefore the legs and bowel/bladder) must travel through the region of the tumor, so can be interrupted by the tumor. Also, it is very important to differentiate between reflex and spasm activity and voluntary movement and control.

    Babies at his age do not have true voluntary control of bladder or bowels. It is primarily reflex. Just because there is no obstruction of the ureters or urethra does not mean that the nerves going to the bladder from the brain through the spinal cord and out to the bladder (from the sacral and lower thoracic cord) are properly functioning. He could be reflex voiding (inefficiently) or even leaking with a flaccid bladder that is causing overflow incontinence when it gets too full. I would want to be sure that when his bladder does empty, that it does so completely. A residual urine should be measured several times for this, and at some point, he needs to have urodynamics tests.

    What are they saying right now about prognosis for his cancer?

    How soon will his chemo be completed? I think it is important to get him to an expert pediatric spinal cord injury program ASAP. The Shriners' Childrens Hospital in Chicago is not that far from you, and would be an excellent choice. The Shriners' do take patients from out of the USA, and may even cover his and family members' transportation and housing as well.

    Please come back and we will try to answer your questions. SCI-Nurse CKF has experience in pediatric rehabilitation, so we will try to have her take on questions that the other 3 SCI-Nurses may not have enough experience with.


  3. #3
    Thank you for quick response!

    We are in Toronto st Sick Kids. there is a kids rehab centre call Bloorview that he would go to, leading in Canada. The hope is one or two more cycles of chemo, so another 45-60 days before he would qualify for rehab.

    The physio here said the leg movements aren't reflexes based on her observations. Which is why she said L1 down functional. In terms of his bladder, am also concerned it is not fully emptying. He does have a stream, but also leaks sometimes, to me it seems like he is often peeing. Could it have gone to not being able to pee at all, to being too open and peeing all the time? It seems like it would be on opposite side of the spectrum.

    in terms of his tumour, it was actually everywhere, including the S region where he had a bleed. His MRi was just horrible, I remember looking st it and saying, so this is his cord, and they are like no, that's his tumour!

  4. #4
    Senior Member lynnifer's Avatar
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    Aug 2002
    Windsor ON Canada
    I'm in Windsor and travel to Toronto for medicine.

    Paralyzed at 12. I would definitely look into Shriner's.
    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

  5. #5
    I don't even know if they would advise leaving Toronto because of the cancer. Even when he is done the treatment we would be carefully monitored twice a week at least. Unfortunately with him it isn't just about being paralyzed but also making sure we take care of the cancer, which at this point is the main concern.

    i guess I am just wondering more about what to expect in terms of his recovery and how much he could expect to have back based on the current state and progress. I am frustrated about not being able to take him to the rehab centre already but I also understand if we don't make sure to eliminate the cancer, any gains he makes at rehab, and if the cancer comes back will be pointless.

    is there anything I can do to make sure he gets exercise, or types of things I should be doing? He is 8 months now.

  6. #6
    I assume he is getting regular PT and OT treatment for exercise and maintaining range of motion (ROM). I would also strongly recommend you request a consultation by a pediatric urologist who is an expert in neurologic urology. Everything must be done to prevent pressure ulcers as well, which he is at risk for now, and more so during chemo treatment.

    I would also encourage you to pursue getting him moved to Shriners'. Chicago has plenty of resources available, either at Shriners' or nearby Chicago Childrens' Hospital, to manage any ongoing cancer treatment and monitoring, concurrent with an inpatient rehabilitation program.


  7. #7
    He does have PT, but they don't even come daily. They did teach me some things, which I try to do. We practice sitting a lot, and he can hold his chest and head/neck and turn and look around. I also roll him side to side, he can rotate his upper body by himself but not his legs yet, so I roll them to assist him. I also put him on his tummy and he can raise himself up with his arms and hold his head up for brief period of time. He doesn't appear to have any pressure sores, or even red skin, we really try to move him A LOT! I just wonder if there is anything else specific we can do right now?

    do you know why the Chicago rehab is better than Bloorview in Toronto? I only ask because this one specialized in children as well and is leading in Canada. It wouldn't make sense for us to move unless there would be a difference in care? Also, my problem is more the fact we have to wait until he is done chemo, therefore delaying rehab.

    i will ask them to monitor his bladder and talk to a specialist. They did the ultrasound under two weeks ago and didn't find any issues in terms the passages between kidney and bladder. They also monitor his input / outputs and they are very close together so they aren't very worried about overall retention, though I agree about emptying fully. they did say they want to do some test that adds dye and I guess looks how the pee goes through the system, but not yet, because he is still recovering so they think they will continue to see improvement in his bladder as well.

  8. #8
    You cannot determine the neurologic function of the bladder and sphincters with a scan such as a CT, IVP, or other imaging studies. Urodynamics is needed for this.

    Be sure that an OT and PT are either doing daily ROM exercises, or teaching you how to do them. It needs to be daily.

    He needs spinal cord injury/disease specific rehabilitation, which is why I strongly recommend a Shriners' SCI Center such as the one in Chicago (also Philadelphia and Sacramento). Pediatric SCI is fairly rare, so a general pediatric rehabilitation center may not have sufficient experienced therapists, physicians, and nurses for this condition. As I said above, I would not be at all surprised to find that Shriners' can continue and accommodate his chemo and oncology treatment at the same time they are getting his rehab going.

    Pressure ulcers can occur from pressure one bony areas where his sensation is not good, from a bed, chair, or even the floor. Talk to the nurses about what they are doing, and special cushions or mattress that may be needed to help prevent them.


  9. #9
    MomNoah, as KLD said, we are glad you found us, but sorry you had to. I will to address some of your concerns. I have some experience in pediatric spinal injury.

    I can can not stress 2points enough. One being that because of his age, some developmental milestones have not been met. That makes some of the things that we can speculate on for adults, we can not not do in children. Kids, are amazingly adaptable and usually find ways to accomplish some of these activities. The reason for his spinal dysfunction also makes it difficult to predict outcomes. The second point is that he is still in an acute care setting. In most of these settings therapy is not provided 5 days a week. I would encourage you to ask your PT and OT for a home program that you can follow through with.

    Inwould encourage age you to look into Shriners also. Care is no cost, they treat more of these types injuries in children than most pediatric facilities and in all likelihood may be able to take on his cancer management with his oncolgist's in Canada. They do this type of coordination all the time. I would also encourage you to check with the facility in Torinto. Ask them the same questions you ask Shriner's especially how many children each year they treat with spinal dysfunction.

    please also get his bladder checked out neurologically. Urodynamics are especially important at this time. Try to get them to understand your concerns.

    i will be on this week as the moderator, so please feel free to contact us. And I will be available to you whenever I can.


  10. #10
    I brought up the bladder and they said urology is not concerned at this time because the pathway between kidneys and bladder appear fine and because his input = output. They also said we won't know any lasting damage until he is older. I will keep pushing for testing.

    I didn't want to go into details regarding this, but I think it's important to mention. He was initially diagnosed with neuroblastoma at 3 months but it was not in spinal cord. It completely went away, or so they thought, and came back in spinal cord. The two leading neuroblastoma specialists have not seen a case like it's before, and reached out all across North America, and they haven't either. Because of this, I would be very reluctant to move or go anywhere while we are treating his cancer or have any concern, His treatment is unique to him and he is under very close monitoring. We have also developed a trust (inpatient for two months now) that took a long time to build and to ensure his needs regarding the cancer are being met.

    i guess I am looking for more practical answers. what can I do to help exercise him, or movements to assist him? I do a lot with him already but additional specifics, or even equipment would be helpful. As I mentioned, he seems to be improving daily, recently,for short periods of time, He can sit upright with almost no assistance (back straight) which is new.

    Also, how long can we expect most gains to be made? With his progression, would it be crazy to expect him to walk some day? We are also lowering his gabapentone slowly and he seems to be doing well with that. Could pain come st a later time? Is it true most pain is experienced during injury and recovery?

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