Page 1 of 2 12 LastLast
Results 1 to 10 of 17

Thread: Sammy, 6 mos. Central Cord Syndrome, need info

  1. #1

    Sammy, 6 mos. Central Cord Syndrome, need info

    Hello everyone. (this is going to be long) I am hoping to get some directions and information about Central Cord Syndrome in an infant. A week ago, my darling 6 month old, grandson, Sammy, took a tumble. He seemed to be perfectly fine and a while later was put down for his nap. When he woke, his parents found that his arms seemed to be weak. They immediately took him to the doctor, from there the hospital and from there he was transported to Toledo Children's Hospital. It wasn't until he entered the ambulance that anything was used to stabilize his neck. This was on a Friday, February 29. Once he was hospitalized, they began IV steroids and pain medication. At that time, Sammy could not urinate and had lost bowel control/formation. The following Monday, his neurosurgeon took Sammy into surgery due to the fact that it appeared he was losing more movement. When he initially entered the hospital he could move both arms and legs, however slightly, but more than on Monday morning.

    At surgery it was found that Sammy had a congenital narrowing of the uppermost facet in his spine very much like people who are of advanced age who have spinal stenosis. The surgeon increased the opening so that the spinal cord had plenty of room. (I sure hope I am explaining all of this in a way that can be understood). After surgery, which took place on the 3rd of March, Sammy regained his bladder control and began to form stools as he had before the injury to his spine. However, his arms and legs remained, and are still, very weak. He can move his right arm more than the left and tried to reach for a toy with his right arm. When the bottom of his feet are stimulated he moves his toes. He is not on a respirator but does "belly breathing". Sammy's mom is nursing him and, boy, he is eating like crazy!

    Tomorrow, March 10th, the hospital is releasing Sammy to go home. At home there will be a nebulizor, sleep apnea machine and a chair to help him to sit upright as he did before his accident. My son and his wife have been told that Sammy doesn't need to go to a rehab facility and that babies do much better at home in familiar surroundings. They will be taking Sammy to a rehab facility twice weekly and learning how to do Sammy's rehab at home. Understandably, my son and his wife want to go home as they have three other children and my son needs to go back to work.

    My concern at this juncture is whether or not Sammy is getting the very best of care now and in the future. None of us know much about Central Cord Syndrome right now but are willing to learn. So, should this baby be going home? The parents were told: If you were at the University of Michigan they would tell you that he needs to be in a rehab facility. But babies do better at home and there isn't much more a facility can do to help a baby in addition to what the parents can do.

    I wonder if this is the case. I wonder if not using any neck stabilization for Sammy immediately caused more harm/injury. I wonder if more could be done in an in-house rehab facility. So, so many questions. I have been pouring over the internet day and night trying to read through my tears. I also would like to find any web sites that demonstrate exercises, etc., for a baby with Central Cord Syndrome. Sammy deserves to have the very best right now. Not in hindsight. So, I am asking and pleading for direction and help. My son, his wife and Sammy's grandparents are willing to do whatever it takes to give him the best, optimal chance for recovery. Also, what is the general prognosis for a baby with Sammy's type of injury and current abilities.

  2. #2
    We are sorry you had to find us, but glad that you did.

    I agree that Sammy should be evaluated at and get some inpatient rehab. I would strongly recommend one of the 3 national Shriner's Children's Hospitals that have SCI specialty programs. This care is FREE! Chicago would be the closest to Toledo. Not only could they see him initially and get his parents much better educated about what he needs, but they would see him back again over and over as he grows for a re-evaluation, and help to adjust his therapy, equipment and educational needs.

    1-800-237-5055
    http://www.shrinershq.org/Hospitals/Chicago/

    In adults, some people with central cord syndrome get return, while others do not. It is probably more likely that an infant would improve, but again, this is highly individual. He will need experts in both child development as well as SCI on his team for many years. Please urge his parents to contact Shriner's.

    (KLD)

  3. #3
    Thank you for your response. Perhaps I wasn't clear. Sammy is in the Toledo hospital but they live in Pittsford, MI, which is about an hour or so north of Toledo. Would Chicago still be the best place. Would U of M be good? What about Rehabilitation Institute of Michigan? I'm just thinking that a facility closer to their home would sure be of benefit due to the fact that they have three other children.

  4. #4
    You have to go to a rehab faciity that takes babies- which there are not that many of.We know that the Shriner's mentioned specialize in children & SCI.We recommend intense inpatient reahb even if for a brief time- 2-3 weeks. The parents can do it at home but the exercises must be done several times a day.
    Central cord is a description and usually presents with the arms weaker than the legs.
    Like all SCI's we can't predict how much return function the patient will get but as an incomplete lesion and being so young everything is in his favor. It is always better to immobilize the neck but don't dwell on what did, or didn't happen, it is over & done with.
    SCI are not real common in babies due to their short necks & if it wasn't for his congential spine problem he might not have either, or possibly it woudn't have been quite so bad.
    Let us know how he does.

    CWO

  5. #5
    Senior Member
    Join Date
    Jan 2008
    Location
    south central virginia
    Posts
    273
    i have no advice for you, but i wanted to say how sorry i am that this beautiful baby is having to face such trials. i am sorry you had to find cc but so glad you did because there is a wealth of information to be found here.

    i have been in a wheelchair for just short of 12 years, and if i can offer you one word of overall advice, it would be to give the 2-3 weeks now for the best possible care. the rehab and treatments that could have positive results are worth the headaches of making arrangements for the other children and having dad go back to work while mom stays with sammy. i know how difficult it is for them, as i spent many weeks hospitalized when my children were young and it was a real hardship, but you want to know that you got the best possible treatment and that you are giving him the best chance for recovering function.

    again, i am sorry your family is going through this and i wish all the best for sammys recovery.

  6. #6
    Senior Member Broknwing's Avatar
    Join Date
    Mar 2004
    Location
    Central Florida
    Posts
    4,742
    I am sorry to hear of Sammy's tumble and injury. It sounds as he's recovering well already.

    I echo the advice of the nurses that say to get him in a program at Shriner's. Besides doing the rehab now, they'll follow up with him in the future and provide equipment he may need as he grows. It's best to get him in Shriner's now.
    'Chelle
    L-1 inc 11/24/03

    "My Give-a-Damn's Busted"......

  7. #7
    Thank you so much. I will be forwarding your information on to my son and his wife. Needless to say, all I can do right now it cry and cry and cry.

  8. #8
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Location
    Wisconsin USA
    Posts
    11,007
    Kennedy Kreiger Institute in Baltimore, MD also handles infants and can do intense 2 week sessions spaced as needed. It is not free. But I believe the Chicago Shriners is near a Ronald McDonald House. Maybe you could stay for the first inpatient stay with the kids and let Mom go. Then maybe you go and Mom stays next time and during the summer...bring along the siblings. They may not always be pretty but the McDonald Houses are inexpensive and near your loved one. Been there, done that.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  9. #9
    More has happened with my grandson. Toledo Children's Hospital sent him home on Monday. They gave his parents a sleep apnea machine and another to help keep his lungs clean and clear. They set up appointments to go twice a week for rehab. That was that. Well, that was Monday of this week and on Tuesday they were rushing him back to Toledo because Sammy's heart rate began to drop. Once back to Toledo one of their surgeons placed a shunt in his skull because after a CT scan they detected a build-up of spinal fluid. After about a week they are going to check to see if there is any more drainage and then will make the decision whether or not to place a permanent shunt in his brain. And then, I guess he will go home again.

    To give you a bit of background. They live in a small, farming community. When the initial injury took place they took the baby to the emergency room. Without stabilizing his spine the rural hospital told Sammy's parents to go to their pediatrician. Well, they did. They got to the doctor and the doctor told them to go back to the hospital and wait for transport to Toledo. Still no neck stabilization. Not until the paramedics did so at the rural hospital.

    Next, they get to Toledo on Friday, the 29th of February and Sammy is given IV steroids and anti-biotics. On Monday, Sammy's blood pressure dropped and his heart rate went down. The surgery was performed to make a larger opening for his spinal cord. After surgery no neck brace, etc. was used. The following Monday they send them home and then Tuesday of this week he is back in the hospital, less than 24 hours after his initial release.

    I don't' want to second guess because that will only make this situation worse; however, the care that this baby is, and has been, receiving looks like a "train wreck" to me. To compound matters, my son is open to having Sammy transported to Shriner's once his condition is stabilized. His wife, who was raised in a farming community, believes that nothing additional is necessary for this baby, other than what Toledo is, or has, done. She believes that she can be trained to take care of this baby with twice weekly supervision of a rehab specialist.

    What would be the best, the very best, avenue for Sammy's parents to take with respect to provide him with the optimal avenue for rehabilitation and care? Is Toledo equipped to adequately manage a situation such as the one with Sammy? I realize that they are a children's hospital; but they do not specialize in spinal injuries.

    My feeling is that there is a small window of opportunity to really facilitate lasting recovery. Once that window is closed, then you can't go back and do it over again.

    Please, oh, please, help me to understand all of this.

  10. #10
    Senior Member Mona~on~wheels's Avatar
    Join Date
    Oct 2007
    Location
    Cleburne, Texas, USA
    Posts
    5,664
    I'm so sorry. My heart iis breaking.
    Sammy and his family will be in my prayers.
    God bless all of you.

Similar Threads

  1. Unteathering, Syrinx & Return?
    By Norm in forum Care
    Replies: 21
    Last Post: 02-15-2009, 01:44 PM
  2. Replies: 33
    Last Post: 02-25-2008, 12:42 PM
  3. Regarding children with SCI
    By TommasoSr in forum Cure
    Replies: 4
    Last Post: 12-13-2006, 04:26 PM
  4. Replies: 4
    Last Post: 03-25-2006, 12:27 AM
  5. A fervent wish for the coming year
    By Wise Young in forum Cure
    Replies: 103
    Last Post: 01-11-2003, 09:54 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •