Frequently asked questions about caring for
This document gives information about practical care, medical care, and emotional needs for the whole family for times when a child will be in a halo cast. Your medical providers will also have information about how to care for a child in a Halo or body cast.
This page was compiled from suggestions from the SED/SMD/Kniest list serve. The information comes from parents asking about how to care for their child who was in a Halo cast, parents who had ‘been there’ giving information they wish they had know ahead of time, and people who had had a Halo or body cast. We all hope this will be helpful for you.
Please contact us if you have any questions or we’ve missed something important!Top of page
This web page is a meant as a guide and should not take the place of instructions from your child’s medical provider. Please check with your a medical provider for all care aspects of a child in a halo or body castTop of page
Recovery from certain kinds of back surgery sometimes required a Halo cast. When recovering from certain surgeries, the neck has to be completely still. Moving the neck can do serious damage and slow recovery. The vertebrae (bones in the back) heal better when there is less movement. More information on spine problems common to people with SED, SMD, and Kniest
A halo cast has two parts: a vest, and a brace to keep the head from moving. There is a piece of lambs-wool fabric that goes under the vest. The brace part needs to be tightened (this is done by parents) during recovery. Your doctor will tell you when and how much the brace needs to be tightened.
There are many different types of body casts, but they generally cover your trunk.
Halo and body casts are used to keep the back and/or neck from moving so they can heal after surgery.Top of page
It varies depending on the kind of surgery and how fast recovery is. Ask your doctor how long the cast will be on.
After the cast itself comes off, your child’s back and neck may be ‘floppy’ from lack of use when the cast was on. Make sure to ask specific questions about how long your child may need extra care. See question 10 for information about what happens after the cast comes off.
Note: you may get different opinions from different medical providers. The surgeon is responsible for the operation and overseeing the recovery. Your surgeon should be willing to answer all your questions.Top of page
Call your child’s doctor immediately if you notice:
- A fever
- Swelling above or below the cast.
- Your child has a lot more pain, or complains about numbness or tingling.
- Bad smell or oozing fluid from the cast.
- Cold fingers or toes.
- The area around a pin site is swollen, oozing, or tender to the touch.
- The cast feels loose.
- Skin irritation:
Use a flashlight to look at the skin under the cast to check for skin irritation. Feel for ‘hot spots’ under the cast. A mirror can help you see farther under the cast. Prevent skin irritation by not painting the cast or covering it with too many decorations. Casts need to ‘breathe’ and let air in. Stickers and paints block air and can cause skin irritation.
Your child will be spending a lot of time in bed. The more prepared you are, the smoother things will go.
- Ask your doctor if the head will have to be at a specific angle.
- Invest in good quality cotton sheets. If you spend a lot of time in them, the extra thickness is worth it.
- Consider investing in a reacher. A reacher provides independence because with a reacher you can reach many more things. See Adaptive Equipment page for more information. This page, http://www.dynamic-living.com/kids-corner.htm for some child-oriented devices.
- Consider putting the bed in the someplace central like near the TV or dining room.
- Have fun things nearby: art supplies, books, TV/VCR/DVD player, computer, stuffed animals, phone. If your child’s bedroom is too small, you may have to move the bed or make a lot of trips during the day.
- Have a fan blowing! Even if it is not hot out, the cast is hot.
- The cast should be kept dry and clean. If the cast is damp, use a cold air hair dryer to blow under the cast and dry it. Never use a warm air dryer, because this can burn your child’s skin.
- Sponge baths are easiest. If your child lies down, you can reach up under the vest from the bottom with a damp washcloth.
- Use a damp sponge or a moist washcloth, but never something soaking wet. The cast needs to be kept dry.
- Hip surgery survival kit has items to help bathe people in body casts.
- Do not use plastic wrap over the cast to keep it dry. The cast has small air holes, and if they are blocked the person inside can get very hot and sweaty and develop skin irritation.
- For hair washing, try laying the child down on the kitchen counter and have her head hang over the sink. You can then use the sprayer to gently wash her hair. This can be a frightening experience for the child, but some find it easier then other options.
- The pins have to be cleaned 2-3 times a day. Have the cleaning supplies near bye.
- See the KSG Special Clothes section for places where you can buy clothes that be easy to take on and off and fit over the halo cast. You can also get ideas on these pages for items you can sew yourself.
- Try clothes a few sizes larger. Thrift shops are a lifesaver, since you’ll only need the clothes for a few weeks and you don’t know what will really work until you try it on.
- Cut neck holes bigger.
- Take measurements, use scissors and velcro and be ready to have a few trial and errors.
- BEFORE YOU TAKE YOUR CHILD HOME, talk to a nurse or occupational therapist about the best way to pick up your child without hurting your back.
- You may be able to get an automatic lift, back support for you, or suggestions for most efficient positions to move your child. Ask about this ahead of time, before your child comes home from the hospital.
- The cast itself is heavy and bulky. Know this ahead of time so you don’t hurt your back the first time you pick your child up with the cast on!
- Never lift or turn a child by the bars on the Halo Cast.
- The Halo cast has sharp edges! Try not to poke your eye when moving your child (seriously).
- When rolling over from your back to stomach with a Halo cast on, ROLL ON YOUR SIDE FIRST, then use your arms to support you with to get to the next position.
- “In our case, it took 3 tries to get the right wheel chair. Lifting even a child as young as Cari (3 yrs) in a halo is very heavy and awkward.”
- “I used a Little Tikes plastic wagon to get my daughter around. They are wide enough to store books, video games etc in but gave her better mobility and comfort – plus when it was over we could still use the wagon.”
How often does a person in a body cast have to change position?
When your child is awake, he or she needs to be moved every two to four hours. Ask your doctor exactly how often your child will have to change position. The pressure of being in one position for so long, the weight of the cast, and lack of circulation can cause bedsores and skin irritation. Bedsores can get infected and this infection can be very serious.Top of page
- Find out from your doctor what kinds of activities are safe. Some of the terms that are used to describe maximum level of activity: Bed rest, Wheelchair Only, Up with Crutches/Walker, Weight Bearing as Tolerated. Find out exactly what your doctor means by this.
- If your child is up and walking, the cast can throw off his or her balance.
- Some libraries have delivery services for children who are temporarily disabled. Call your local library and see what services they can provide.
- See the independent living resources for more ideas and resources for keeping a bed-ridden child busy.
- Talk to your child’s teacher and to set up tutoring. Teachers may also have ideas about other projects your child can do. Librarians can also be a great resource.
- This is a good time to start a chapter book series (Chronicles of Narnia, Little House on the Prairie) or a video series. Plan ahead and find out what your child is interested in.
- Make an arts and crafts box with everything from child scissors and colored paper to pipe cleaners and markers. You can make flags, masks, and Halloween decorations.
- Use a tray is to do puzzles. Small pieces may fall and can be easily lost and hard for the child to find. A reacher and adjustable mirror can help with this.
- Don’t paint the cast or cover it with too many decorations. Casts need to ‘breathe’ and let air in. Stickers and paints block air and can cause skin irritation.
- “Getting ready ahead of time made things easier. I planned activities as far ahead of time as I could. When Elizabeth was busy, she was in less pain.”
- If your child is in pain, contact your doctor and ask about pain management. The section on pain management may be helpful.
- “My son never once said ‘I want this halo off’ but his #1 wish for Christmas that year wasn’t a toy, it was to have his halo off.”
- “Be patient and understanding. Your kid has just lost all independence and may be terrified: all of a sudden he can’t walk alone, eat alone, bathe alone, be left unsupervised for fear he’d fall and hurt something or himself…being a very independent thinking child, this was really hard for me.”
- Don’t lie to the patient. They need to know what is going on.
- When he first saw his reflection of himself in the cast he just stood there, staring at himself, not quite sure what to think. He knew it was himself, but he was just in shock at the contraption on himself I think. I just cannot imagine the emotions involved, but I know if I were to have something like that on my and see myself in a mirror, I think it would be quite shocking. So we did a lot of talking after that about the halo and how important in was that he have this on for as long as the doctors say he needs it.
- If a child tells you that something hurts, do not tell her that it doesn’t. This only decreases her self-esteem and causes more distrust.
- “One day I remember playing with a toy, doing my thing as a five-year-old. All of the sudden, I moved my head involuntarily. Nothing jerky or anything; just movement. I freaked out. I think I screamed and started crying because I knew it was so important that I not move my head or neck. Some warning that this might happen (for both the patient and the parents or caregivers) and that it may not be the end of the world would have been helpful, no matter the age.”
- The neck and back muscles will be ‘floppy’ from lack of use and your child will have to wear a collar. Ask for an extra collar, one for bathing, one for eating, one to look nice and clean for going out.
- Expect some really dry skin where the vest was.
- “I got very nauseous after just getting out of my halo. I spent most of the 4 months I was in the cast laying on my left side. I distinctly remember sitting up in my hospital bed for the first time after the halo was removed. My doctor was standing at the end of the bed. At first, he was vertical. Then, all of the sudden, my brain turned the image 90 degrees and he was sideways. I lay back down and vomited from the motion sickness.”
Here is what some parents and kids have written. Please contact us if you would like to add a quote.
- No matter how much people share, or send pictures, seeing your child in a halo is a very frightening and heart wrenching experience. I don’t want to say it gets better, it doesn’t, but you learn to see past this awful contraption and see your child for the beautiful child they are.
- Children with SED, SMD, and Kniest have short necks and the neck braces sometime do not fit. This needs to be brought to the medical doctor’s attention so they can order the smallest size available or make the ones they have stronger using rolled-up towels.
- “Try to have whatever the Dr. recommends before hand. In our case, it took 3 tries to get the right wheel chair and lifting even a child as young as Traven (3 yrs) in a halo is very heavy and awkward.”
- Keep the cast dry! It loses strength (and does not smell good) when it gets wet.
- “My advice on eating times is buy a lot of bibs and tie the bib not around the neck but to the back bars to cover the opening of the vest at the chest to keep food from getting down inside.”
- Looking back, I think I might have cut his hair a bit shorter prior to surgery or even shaved it. He was in it for 10 1/2 weeks so his hair grew quite long in that time.
- Some people find a vacuum cleaner feels good under the cast.
- “Expect bruises from being bonked by the Halo Cast. My son gave his aunt (my sister) a black eye when he ran into her arms for a hug. It’s kind of funny now but it wasn’t then.”
- This can be a tough time for your child. The surgery and Halo cast makes them much more dependent. It will also be demanding on the whole family.
- Have friends and family come over often. Many hands and prayers really helps!
- I eventually stopped washing his hair. It was so much easier, and he had lost control of everything else. This was one thing he had control over.
- Talk to your child and explain the importance of the cast. It can be very shocking when they wake up from the surgery.
- He looked so small and pathetic in that huge contraption. My husband broke down at the site of him, but I got one look into his blue eyes and I knew everything would be alright.
- Ask your medical providers what information they have such as brochures and other resources.
- See the KSG list of Medical Providers familiar with SMD, SED, and Kniest.
- Find a support group near you.
- http://www.cdha.nshealth.ca/patientinformation/nshealthnet/0614.pdf. This link has information for both adults and children in Halo Casts.
- www .tcspine.com/education/halocast.asp
- http://www.hopkinsmedicine.org/orthopedicsurgery/peds/bracing.html. Information about scoliosis, bracing, and surgery.
- Media clips of famous people in Halo casts: www.nbak.tierranet.com/videos.htm
- http://www.hopkinsmedicine.org/orthopedicsurgery/peds/scolsurgery.html Johns Hopkins University guide to scoliosis surgery.
- You can also ask to speak to parents whose children have had a similar surgery. Often, medical offices will only hook you up with another family if you ask.
- Talk with other families going through the same thing. See Talk to Other Families section.
- Hip surgery survival kit – reacher, elastic shoe laces, long-handled sponge and other items to make recovery easier.
- Come to a Little People of America Conference or regional meeting
Special thanks to Laura for her editing assistance, and to Laura and Rachel for their help on this document, and their splendid example of mother/daughter teamwork.