A wide variety of medical equipment can be found through Abilitations. Some of this equipment can also be provided by a home health care service or hospice. E-bay can also be a good source of used adaptive equipment.
- A suction machine is an essential piece of equipment. Since MLD children have difficulty swallowing or can be more prone to vomiting or aspiration, a suction machine is used to suction mucous from the nose and mouth. If a child is sick with a cold or pneumonia, deep suctioning can be used to remove mucous deep in the throat. Additionally, it is helpful to use when brushing teeth. We have several suction machines throughout the house so we can quickly grab one if a child begins to gag, vomit, or needs to have mucous removed from an airway. Battery-operated suction machines are also available.
- A nebulizer machine allows a child to inhale medicine such as Pulmicort (a steroid for the lungs) or Albuterol (helps open up the passageways in the lungs). These medications are necessary because the lungs often get weak from not expanding as much as a child who can move, run, or speak. Both of these medications are commonly used by children with asthma or cystic fibrosis.
- A bi-pap machine is used to provide extra air when the child breathes in to help the lungs fully inflate. We noticed a significant improvement in lung function with both of our boys when they began wearing their bi-pap machines at night. This machine is similar to a C-pap machine which is used by people who have sleep apnea or problems snoring. With a bi-pap machine, the child wears a mask that covers his nose. Bi-pap machines also help prevent pneumonia by keeping the lung airways open. These machines are relatively small and can be rented.
- The Airway Clearance Vest is a vest that hooks up to a machine with vacuum hoses and vibrates against the child’s chest. It provides intense respiratory therapy within a short period of time and works by loosening the mucous from a child’s lungs. The vest is typically used for about 20-60 minutes each day. It is very expensive (approximately $16,000) and can only be obtained with a prescription so you cannot find used units available for sale on sites such as e-Bay. However, Hill-Rom, the manufacturer, will allow a 30-day trial and will also work extensively with insurance companies to try to get insurance coverage for the vest.
- Another piece of equipment that we use extensively is a pulse oximeter. This is placed on the child’s finger and measures the amount of oxygen in the blood and the heart rate. We have found this very useful in determining if the boys are getting sick, since they usually have elevated heart rates and lowered oxygen levels when that occurs. These can also be expensive, and good machines can run $320+. You can talk to your doctor about which model may be best for you, although they can be found on eBay or Amazon. For an example, please click here.
Movement and mobility
- A good wheelchair is essential. Since most children with MLD have limited use of their limbs, a manual wheelchair is usually the best choice. Our boys have a Convaid Safari Tilt, which can be reclined to 45 degrees. The wheelchair also folds up easily (like a stroller) so it can fit in a trunk or the back of a van. Additional accessories can be purchased for the wheelchair, such as a padded seat, a padded backrest, additional headrests and back extensions as well as a sun shade. If you plan to transport your child in a wheelchair in your car or in a school bus, be sure to get the crash-tested transit model so that the child can be safely secured to the car or bus.
- Ankle foot orthoses (AFOs) are braces that are worn on the feet and are good for ankle support when standing in a stander as well as for keeping the heels stretched. Children with MLD seem to get very tight heels, and often have to have their heel cords surgically cut. AFO’s prevent this from happening and allow a child to wear shoes and have his or her feet look “normal”.
- A stander is basically a board that a child is strapped to which can then be moved into a vertical position so the child is “standing”. A stander helps with hip and bone development by having the bones bear weight and can also serve to provide a good stretch for the muscles. We have a Rifton stander, and we really like it because only one adult is needed to put a child in the stander. Some standers are very complicated and require two adults. You can see a picture of the Rifton stander here.
- If you transport your child in the car and the child is not in a wheelchair, a car seat or booster seat will be necessary. Our boys weigh approximately 50 lbs. and in our vehicle, we use a Graco booster seat that can be reclined. We also slightly recline the seats in the car that the boosters sit on. This prevents the boys’ heads from “flopping” forward and keeps them more relaxed. However, if your child needs more support, several companies make special needs carseats, and Adaptive Mall has a good selection. These seats can be expensive and often cost $600 or more.
- If you have access to a pool or body of water, swimming can be wonderful. In water, the child’s body seems much lighter and movement is easier, not to mention it can be very relaxing. Our boys use a neck collar and a kick board with special straps while in the pool, which allows them to easily float and be more stable. These items can be purchased through Abilitations.
- We have found that our boys respond very well to vibration. When they are laying down on their bean bag, we have them lay on top of a full length vibrating massage pad (made by Homedics and cost about $40). See Amazon or click here to purchase.
- We also use a small vibrating massage pad on the boys’ beds. We wrap the massage pad in a cotton pad (see purchase information in Miscellaneous section) and then put the pad under their legs. The pad has an auto shut-off after one hour so we do not need to worry about having the boys get “hot spots” while they sleep. We use the Heat Plus Massager Heating Pad by Sunbeam but do not use the heat function. Click here for purchasing information.
- During the day, we often have the boys sit in a Love Sac. This is essentially a very large bean bag, but instead of being filled with beads, it is filled with memory foam pieces. The Love Sac comes in many sizes and the covers are removable and can be washed in the washing machine. We have a Super Sac which is very large, but can easily accommodate both boys comfortably as well as an adult in between. We often lay the long vibrating massage pads on top of the Love Sac to help with comfort. The Love Sacs can be expensive, so you may want to look for a store near you or check on eBay.
- Use a Memory Foam Mattress Topper to minimize bed sores or “hot spots” from the massage pad on the skin. We have found that John and Christopher do not move much when they are sleeping and have a tendency to get hot spots on their skin, but the memory foam mattress topper has completely stopped that.
- Using risers to slightly elevate the head of the child’s bed can help with breathing and swallowing. Click here for an example. These cost about $9.99 per set.
Bathing and hygiene
- A bath chair allows the child to remain stable while he is getting a bath or shower, plus it saves your back! We have the Leckey bath chair similar to the one pictured below. You can also get an additional platform that fits under the bath chair and raises it to approximately 3-1/2 feet high. See an example here.
- Even though your child may not eat by mouth, caring for your child’s teeth and mouth are very important and bacteria can easily build up in the mouth. Swab your child’s mouth twice per day using a disposable toothette that has been dipped in an anti-bacterial solution such as Crest Pro-Health Rinse, Biotene, or Chlor-Hexadine. If your child has difficulty swallowing, place your child on his side, with the chin tucked in to help avoid aspiration and to encourage him to spit out the anti-bacterial solution. You may also want to use a suction machine while you are doing this. Bacteria may also build up on the tongue and cause bad breath, if this is the case, use a tongue brush (we prefer the Tung Brush) to scrape the tongue and remove bacteria.
Use rubber-lined cotton pads and put them on the child’s bed or any surface he is sitting or laying on to save on laundry. These are good for catching leaks from diapers, spit ups, etc. Our boys lay on these and we put them over the vibrating pads to prevent them from getting dirty and to protect them from getting sores from laying on a vibrating motor too long.