Pediatric Spinal Cord Injury

AskNurseLindaAskNurseLinda Posts: 71Moderator, Information Specialist Information Specialist
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edited February 19 in Pediatric

This is devoted to young individuals and their families who are dealing with spinal cord injury and other forms of paralysis. The hope is to make this a safe place to discuss what is going on in your lives, your hopes and dreams, and with a few practical tips along the way.

Please allow me to introduce myself. I have been a rehabilitation nurse for quite a few years, working in adult and pediatric settings. For 10 years, I worked as a pediatric rehabilitation nursing specialist prior to specializing in spinal cord injury. My work in spinal cord injury includes both adults and pediatrics.

It was my fortune to be able to work with Christopher Reeve in his recovery. All the individuals involved in that endeavor contributed to the evolution of health care. Today many of the techniques and treatments provided to individuals, adults, and children, were developed because of that work. The discoveries have continued with the same underlying philosophy, hope. Many of the treatments are becoming reality.

Although titled spinal cord injury, many diagnoses will be included in our conversations as the physical function aspects are similar. Spinal cord injury includes those who have had trauma as well as those with spinal cord injury as the result of medical conditions. In healthcare, when talking about SCI, all diagnoses are considered. Please know you are welcome.

There are some basic differences in the treatment of SCI in adults and children. These include physiological differences, psychosocial differences and growth, and development.

Physiology, or how the body works, is different in children and adults. Teens are somewhere in between as their body ages. Basically, the younger the age of a person, the larger their head is in relation to their body. Positioning is slightly different to accommodate keeping the head in alignment with the spine. In adults, when positioned on the back, the head and torso are in alignment but for infants and young children, the body needs to be supported a bit higher to accommodate the head size and maintain alignment.

Breathing is also different in that children’s necks are shorter, creating less space and therefore, fewer challenges for moving air in and out of the lungs but more complicated when issues such as paralysis arise. Oxygenation within the lungs is quicker which is why children breathe faster than adults. The heart pumps more quickly and digestion is typically faster. Skin is heartier but not necessarily less susceptible to breakdown. Knowing the physical differences for children in an adult world can make a difference in their care.

Psychosocial issues are challenging for everyone. Adults have adult issues; children’s issues are different. This is important for keeping in mind a child’s point of view. If an injury or illness occurs earlier in life, the child will not see themselves as different. They see what is normal for them. There are times in life when the difference becomes notable, but their way is normal, it is others who have the difference. This is a unique perspective.

As child ages, differences can become more apparent. Transitioning from adolescence to adulthood is a challenge for everyone. Creating a world of normalcy in the midst of adolescent development layered with a chronic issue can be arduous.

Parents and family members need to be included in the discussion. Issues for parents might include guilt, over and under indulging, the strength of the family as well as family dissolution in some cases. Add in step-parents, grandparents, teachers, friends and influences and opinions abound.

The theme of the first two differences, physiological and psychosocial is the third difference between adults and children, growth and development. Between infancy and adulthood vast changes take place in our children. No other time in a person’s life contains such a vast amount of change. This is a lot to undertake for anyone.

Rehabilitation is different in children. In fact, the ‘re’ in rehabilitation is often omitted. Habilitation is learning in real time or learning while something is actually occurring. There is no ‘re’ or relearning about it. You cannot teach someone to relearn to sit if they did not accomplish that milestone prior to their SCI. For children, it can be learning to succeed in all the developmental milestones for the first time. The milestones change with age. For adolescents, it may mean learning to drive after an SCI or dating for the first time.

Let the blog be what you need it to be. I will post one time a month but use this space to bring up subjects that are of interest to you as a person with an SCI or parent or sibling. Whatever is on your mind is most likely on the minds of others. You will get ideas for success from as many people as those who you help. You might trigger a thought that has been in someone else’s mind. Let’s see where this goes.

I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

Leave a comment any time below. Let's get the discussion going!

Nurse Linda

Register for my next webchat! Sign up here!

Comments

  • Monica.TMonica.T Posts: 98Member ✭✭
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    Will you also be adding a section discussion for teens? How does a parent go about finding doctors and therapists that specialize in the care of SCI? So far only my son's urologist seems to have any actual knowledge about treating a patient with a spinal cord injury. Not even his ortho surgeon knows much more than what meds Charlie needs to take. And the physical therapists only want to work on stretching his legs.  Type your comment
  • AskNurseLindaAskNurseLinda Posts: 71Moderator, Information Specialist Information Specialist
    25 Likes 10 Comments Name Dropper 5 Awesomes
    Hi, Monica, yes, teen issues are unique. I hope to include more as we develop this group.
    Your question about finding SCI specialists is a challenging one. If you go to a large healthcare institution or a SCI specialty hospital, you can be connected with a specialist for SCI and adolescents. However, this level of healthcare treatment is not in many communities. There are some other ways that you can find specialists. If you live near an academic medical center, you can call the Physical Medicine and Rehabilitation Department and ask for an appointment, specifying they type of healthcare professional you desire. If that is too far from your home to be a viable alternative, ask if they know of someone who did their residency there that is within your area. Sometimes, the physiatrist will have a working relationship with someone in your area that might be an SCI specialist or neurologist. Other options include calling the Christopher and Dana Reeve Paralysis Foundation and ask for the specialist closest to your area.  The Foundation also has mentors availablewith in your area that can provide information and connections for your teen and for you, as a parent. Often times, there are people in your area that specialize in something else but have a working knowledge of SCI, much like the urologist you found.
    You have already gained an understanding of how an SCI specialist can improve care as well as being proactive in managing therapy. It is so important to be thinking ahead especially with the potential that adolescents have. Be sure to track down some of these suggestions, especially through the Christopher and Dana Reeve Foundation. Their data base of providers is extensive, you might even have a choice. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

  • Monica.TMonica.T Posts: 98Member ✭✭
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    Thank you so much Nurse Linda. Our area doesn't seem to have anything. His Urologist is 2 hours away and his GI (for his feeding tube) is an hour away. Finding doctors that understand his body's needs has been difficult.
  • AskNurseLindaAskNurseLinda Posts: 71Moderator, Information Specialist Information Specialist
    25 Likes 10 Comments Name Dropper 5 Awesomes
    Hi, Monica, just a quick follow up. You have obviously searched for specialty physicians. Finding someone who is very interested would be the next step.  Try calling the closest academic medical center physician referral line. Academic medical centers is where doctors are educated. There might be a graduate in your area that has connections to the medical center where they can consult with SCI specialists. Sometimes making that link is helpful to tapping into the specialty resources you are seeking. Just a thought. I have seen this work. Unfortunately, the effort falls to you. I wish our medical system worked better for those in the community. But until it does, here we are. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

  • married11307married11307 Posts: 11Member
    10 Comments Name Dropper
    My daughter is going to be 14 on the 28th. We are just over a year into her SCI. I've learned a great deal over this last year very quickly. What I'm stumped on is the toning in her legs. Her rehab dr has her taking 20mg of baclofen 4x's a day which is the max dosage she can take with her 90lbs she weighs. We go Thursday to have botox injections done which I'm praying will help significantly with her toning. I'm just curious what others have tried and maybe what's helped for them? The baclofen doesnt seem to help much anymore since even 45 min after she takes it her knees are still up in her belly ugh. We did buy her a revitive which is basically a tens until for ur feet and calves. It helps to promote circulation and it does seem to help a little with her toning. But having her on it all day just isnt realistic.  Stretching her or trying rather is a whole other nightmare at the moment. Sorry to ramble I'm just a worried momma trying to find some other helpful things. Also if anyone has any information about prevention of bed sores besides the obvious I'm all ears. 
  • AskNurseLindaAskNurseLinda Posts: 71Moderator, Information Specialist Information Specialist
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    Hi, married11307, the botox will make quite a difference in tone. You will be surprised. Just remember, botox is not a perfect science. An experienced physician will get close to the right dose for your daughter but it sometimes takes some trial and effort. You will see a remarkable difference but you might need to ask for a little more or a little less at the next session-or it might be just right. It also will take a short amount of time to hit its full potential. In other words, you will see a good result but it might get even better over a couple of days. Or it will be a good result but too loose over a couple of days. Your daughter's feedback and your observations will be critical. But even the first botox dose will be a satisfying result.

    Botox works mostly in the muscles that are injected. Baclofen goes throughout the entire body leaving some people feeling groggy. Eventually, you may or may not be able to decrease the baclofen and therefore the groggy side effect. Don't change the baclofen dose without your physician's approval. You can not just stop baclofen, the spasms will come on even harder if you do. Baclofen has to be weaned down and then off. If appropriate for your daughter, your physician will give you a schedule to reduce the dose over time so there will not be any side effects. This is critically important.

    Wait to see how the botox goes, then later, talk about the baclofen taper if you want. If your physician wants to start the taper with the botox, that is ok. Staying on the baclofen and botox injections is not unusual. Your physician knows your daughter's healthcare needs best. I just want you to know all of the options. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

  • married11307married11307 Posts: 11Member
    10 Comments Name Dropper
    Ty for that feed back nurse Linda. I had no intentions of stopping the baclofen without her physicians guidance.  I am aware there is a wean off schedule and it cant just be suddenly stopped because of the dangers of it and the withdraw. My nephew was on it 4 years and finally was able to get a wean off schedule since it wasnt helping him.my daughter has been on it for about a year now and she doesnt appear to have an grogginess.  I believe a lot of the issues with it not being as effective is the fact shes a tiny girl with a very high metabolism so her body is burning it faster then it can work . I just know I've been searching for pediatric research studies for the spinal cord simulation because I've researched and seen how successful it can be with helping paraplegics to walk again and regain their bowel and bladder. And I'm aware that if her legs remain this tight it may not be an option for her and that makes me sad. Because to see her standing ,walking even with the assistance of a Walker or crutches would mean the world to me. It's been a year since I've seen my baby girl upright and it kills me. So getting her legs loosened is very important to me and her and keeping them that way. Ty for the input I pray the botox helps
  • AskNurseLindaAskNurseLinda Posts: 71Moderator, Information Specialist Information Specialist
    25 Likes 10 Comments Name Dropper 5 Awesomes
    I am absolutely with you. The botox will help. You will be amazed. Things are going in the right direction because you are making it so. Keep up the good work. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

  • married11307married11307 Posts: 11Member
    10 Comments Name Dropper
    I like any good parent just want the best for my kiddos and will go to the ends of the earth and back to make sure they are happy and healthy. After all she didnt ask for this terrible thing to happen to her. I'm excited for these botox shots for sure. Ty for all the good advice.
  • AskNurseLindaAskNurseLinda Posts: 71Moderator, Information Specialist Information Specialist
    25 Likes 10 Comments Name Dropper 5 Awesomes
    Lots of good advice and support on the blog for Botox. I hope it is the answer for you. Thanks to everyone for the support and encouragement. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

  • Monica.TMonica.T Posts: 98Member ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic

    married11307 Hi, my son has been receiving Botox once every six months for the past 18 months, they help a great deal with his abductors , the full effect of Botox usually kicks in (for him) a month after the injections.

    We also use a large peanutball at home, he sits astride it to help stretch his muscles and strengthen his core, we also drape him across it [on his hands and knees, with his belly in the dip] then roll it back and forth. A physical therapist can show you how to this at home. A good idea is to try it a few times in therapy to see if it's going to work or not, that way you can know ahead of time if investing in the cost of a large peanutball is going to be worth the cost. And a therapist can help decide the right size ball for your daughter.

    At Christmas my son sat astride his peanut ball with his big sister behind him for support, so he could be down in the floor opening gifts with everyone else. So we use his ball for more than just therapy. :)

    Wishing you all the best.

  • married11307married11307 Posts: 11Member
    10 Comments Name Dropper
    @Monica.T I will ask her PT about this. I dont think we could use it for her tummy as she just had surgery to place her bowel and bladder buttons but maybe once shes completely healed that may be an option. I'm glad to hear the botox is working so well for ur son I pray it works as well for my little girl. They said it take about 6 weeks after to see the full effects of the botox so I'm excited to see where this journey takes us. Ty for the advice.
  • ambercollieambercollie Posts: 39Moderator Moderator
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    @married11307
    Have you looked into a Standing Frame?
    My son gets crazy spasm in his legs and body, and is also on baclofen. A good workout and standing frame helps him.
  • ambercollieambercollie Posts: 39Moderator Moderator
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    @Monica.T
    That peanut ball sounds interesting!?
    I've never heard of such a thing.
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