Duchenne Tip of the Week

  • If your non-ambulatory child is having pain in the soles of his feet, it means they are probably twisting inwards due to tendon contractures. The pressure from the wheelchair footrests is the cause of this, so talk to his occupational therapist about getting fitted shoes.  For the time being, however, he could wear soft, plush slippers and put them on a cushion to have a bit of comfort.
  • Do your research on Duchenne muscular dystrophy. Unfortunately, there are situations where doctors, nurses, and healthcare professionals will bully you for the sake of their own agendas.  Educating yourself about the disease is a preventative measure as it’s possible to understand more if you’re not dealing with experts.  This may seem overwhelming at first, but necessity outweighs fear and there are no time restraints, so have patience in learning.  Being knowledgeable will also help you make better decisions for your affected child in the future.
  • Bowel obstructions are extremely dangerous, while they may also cause fatalities for children diagnosed with this disease. When Benefiber, Domperidone, and Miralax are not doing their job for your child, it’s time to add Resotran to the equation.  This relatively new drug is much stronger to keep everything going in the digestive tract and will most likely save his life by preventing intestinal blockage.  Please consult with your family physician.
  • If your child is unmotivated to continue, giving up on physiotherapy, treatment, or any support to maintain his well-being, it isn’t the end of the world. Fear and exhaustion is a part of being human.  Your job is to show him that sometimes we fight, even when we don’t know what we’re fighting for, and not because we should or have to, but that we can.  Remind him to focus on his abilities, not inabilities because the future will be much harder and he needs to prepare for war.  It hurts, but the truth is necessary for him in the long run.
  • Children with this disease often have circulation issues because of heart weakness, which affects their ability to produce body heat. If this is the case for your son, it might be a good idea to get him a Towel Warmer.  It will also work for clothing, especially effective during wintertime.  This model is available at Brookstone.
  • For those of you whose children have difficulty using the bathroom and spend a significant amount of time in there, getting a raised toilet seat might be a good idea. It will provide more cushioning, which lessens the chance of pressure sores, while giving your child the comfort he needs.  Just bear in mind that depending on his progression status, the extra height might may cause him to lose balance, so please make sure that he is secure, especially in the commode chair.  Raised toilet seats are available for purchase on Amazon.com.
  • There are many activities that your young child can still do, despite being in a wheelchair. Arts and crafts, baking, computer design, drawing, singing, and writing are all excellent ways to encourage his creativity.  One of the best is pottery, where he will be able to fully utilize his hands and fingers to make something on his own.  Keep in mind that the feeling of accomplishment is always well worth the mess.
  • When your child’s hands are not in use, especially during bedtime, it is always good for him to wear splints (that include a spine). They will keep both his wrists and fingers from bending, while holding his palms in place.  Also, with gloves underneath, his skin will be protected from the constant pressure.
  • Contribution is a significant part of overcoming this disease. Don’t believe for one second that your assistance is unwanted because you are physically compromised.  Your parents might let you off the hook without thinking anything of it, but you still owe it to yourself to expect something of yourself.  When going out, for example, help your family to remember items to pack.  If your mother or father are on medications, it is your job to remind them.  There is nothing wrong with your mind and it is so important for you to give back through your abilities.
  • Children diagnosed with this disease may be much more susceptible when it comes to pain sensitivity. Xylocaine (lidocaine) jelly is a very effective topical ointment that will temporarily cause numbness in the skin and mucus membranes.  It can be used for scrapes, minor burns, eczema, insect bites, etc., or applied before injections and getting blood drawn.  Make sure to consult with your child’s family physician first.
  • If your child is having a difficult time driving his wheelchair, it might be time to consult with his occupational therapist about switching to a mini joystick. It is highly sensitive and requires little to no effort to control.  A mini joystick can also be placed under his chin if he is unable to utilize his hands properly.
  • If your child is still able to eat by mouth, a good preventative measure for aspirating on food is swallowing Jell-O and drinking warm water before transfer. Of course, there are no guarantees, but doing so will help to push any remaining particles down his throat that might not be consciously felt while sitting in the wheelchair.  Brushing his teeth twice will also make a significant difference.  These chores might be time-consuming inconveniences, but a little more work is always better than potential pneumonia.
  • We should never use our physical disability to manipulate others into doing things for our advantage, but sometimes, when such power is utilized properly, it can prove to be a positive. Remember that you are one of the backbones in the family, and if your parents are having an argument, you possess the capacity to force them into kissing and making up.  It’s quite evil, to be perfectly honest, but you can be the game changer if you give it a little effort.  Hey, I do it every time and they always start laughing!
  • Condom catheters are fantastic when it comes to giving your child independence. Attached to a drainage bag, they will free him from the need of finding wheelchair accessible restrooms in public places and during road trips.  They are neither invasive nor painful, while the caregiver no longer needs to change his sitting position, which prevents accidents as well.
  • Bloating can be a major issue if your child is using a BiPAP machine. To release the gas AND prevent it from developing further, try rubbing Kwan Loong Medicated Oil onto his stomach.  You can easily find it in the pharmaceutical section at your local Chinese supermarket.  If not, the best alternative is the White Flower Oil.  Neither of them require a prescription.
  • One of the best methods to unclog a feeding tube is with the use of Coca-Cola. Inject it with the syringe until you reach the blockage point and clamp for about ten minutes so that all is soaked through.  Following that duration of time, the fizz from the soda should have already dissolved the remaining medications or curdled feed.  Then, flush with water as usual.
  • If you’re going to offer advice and support to the Duchenne community, offer them for free. Don’t solicit people to send you a message and join your business endeavour so you might make a profit.  Many of the families here suffer from financial situations due to medical bills and can’t afford hundreds of dollars.  Always have compassion and share your knowledge for their benefit.
  • With this disease, there is always a great risk of ulcers and pressure sores. As a preventative measure, consult with your nurse about silver alginate dressings.  Being quite expensive, the government or insurance won’t want to subsidize their use unless completely necessary, but they might save your child from a serious infection.  They come in other forms such as mesh and cream, and also help with tissue regeneration in wounds that have depth.
  • If your wife is the main caregiver, don’t keep asking whether you’re still needed or not during a care session for your child. Even if you feel useless sometimes, remember to stay because there is always something.  Never undermine your importance as a husband and father when your support makes all the difference in the world.
  • Sitting in a wheelchair can be a pain in the butt, literally, especially when it continues for hours on end. To minimize the hurt, try applying Voltaren Emulgel Extra Strength on your child’s bottom right before getting him up.  It’s an anti-inflammatory ointment that lasts for 12 hours and easily purchased over the counter from your local pharmacy.  Be sure to use gloves so not to affect yourself with the painkiller.
  • When you get to a certain age, the issue of muscle pain will possibly increase resulting from this disease. However, without enough mass in your flesh, getting relief is oftentimes next to impossible with ointment, heat, etc.  Transcutaneous Electrical Nerve Stimulation (TENS) therapeutic devices may be your only solution.  They stimulate nerves around the affected area, causing your body to disguise the pain.  Such machines cost about $50.00 and are available in Amazon.com, Costco, and Walmart.
  • Getting something in your eyes while being non-ambulatory can be incredibly frustrating and painful, while having another person rub them may potentially cause scratched corneas. The best way, I’ve found, to remove particles is by placing a relatively rough towel over them tightly and constantly blinking for about thirty minutes.  Your eyes should be clean by the end as the fibres would have caught anything stuck inside.
  • If your mother yells at you for no reason whatsoever, don’t retaliate. You’re going to make her cry.    Being your main caregiver is not just a hard job, but an impossible task that she somehow manages.  There are times when the frustration shows, but remember that it’s the disease talking.  Instead of fighting with her, ask for a hug and remind how much you love her.
  • When your child asks a difficult question regarding this disease, first calm down and remove yourself from negative emotions. In your mind, separate between fact and assumption before answering, while finding words that are suitable for his age group.  Don’t put him in an adult situation by overcomplicating things.  Be upfront and honest and remember that there is no shame in saying, “I don’t know.”
  • Healing can be an obstacle when it comes to this disease. Rubbing alcohol around the wound will encourage regeneration as it stimulates blood flow.  Always apply lotion on the area after evaporation to prevent from dryness.
  • If your child lacks in range with his arms, it may prove difficult to remove jackets or coats. The better way, without needing to cause pain, is by pulling the entire sleeve off a shoulder first and starting from there.  Keep pulling down until his arm comes out easily, eliminating unnecessary twists and turns altogether.
  • If you’re thinking of purchasing a suitable gift and your child is still small and ambulatory, your best bet is getting two. One of them should be focused on his remaining physicality, so that he’ll have good memories without regret.  The other should be focused on creativity, which is crucial, especially in the future when he loses his mobility.  His mind will become his largest muscle.
  • Being diagnosed with this genetic disease, your child is prone to low blood pressure, especially in the later stages. Always have clear soup at hand; canned or homemade (recommended for better taste), and add the necessary amount of salt when needed.  Get him to drink much fluid afterwards until the numbers increase.  Hospitalizations happen when there are visible signs of danger, but they should remain to be the last resort.
  • For those of you whose child is having trouble calling you at night, even in the daytime, ask his occupational therapist about getting a sip/puff call bell. Buttoned versions can sometimes slip off while he might not have the strength.  A sip/puff call bell is very flexible and will remain secure.  It can easily be triggered via an attached straw.
  • If your child is afraid of the future to come (i.e. the spinal fusion surgery), remind him that compared to his well-being, fear is insignificant. Idleness will not only prolong the discomfort and suffering, but also enthuse regret in the end when facing the impending obstacles is inevitable.  Courageous sacrifice is necessary and “getting it over and done with” for the greater good is an enormous part of fighting this genetic disease.
  • Instead of having your child use a face mask for the BiPAP, ask the respiratory therapist for nasal pillows. Not only will they allow him to call out when he needs you, but they will be much more comfortable without tightness everywhere.  If his mouth is leaking pressure, request for a chin strap as well.
  • The fact that your child was diagnosed with this disease is a very hard pill to swallow. Acceptance can be impossible, especially during those harder days.  However, never let your disbelief compromise the care you provide for him when he emphasizes his suffering.  Always take him seriously, even when it breaks your heart.
  • During hospital stays, remember to never let doctors or other healthcare professionals bully you into doing something you’re uncomfortable with. They might not understand this disease, but your needs are always justified.  No one has the right to change your physical requirements and if you are unwilling, speak up immediately because they are not allowed to force you into anything.
  • Keeping your hands warm during the wintertime is a must when going outdoors because not being able to drive is a dangerous thing. You might end up looking like an astronaut street bum, but the best way to accomplish this is by wrapping yourself with a thermal blanket.  They weigh absolutely nothing and can be found on Amazon for less than a dollar each.  Just be sure to tuck yourself in, loosely but firmly.
  • If you’re having trouble dealing with your child’s diagnosis, remember to think about how he will feel on the day that he discovers the truth. You need to have the courage to cope so he will know the same.  You are responsible for teaching him, not because you can or should, but that you have to.  Without focusing on yourself, make your son your reason to continue.
  • Freedom of expression is something you need, and having an outlet will help to keep your sanity intact. Writing, music, art, etc. are all fantastic methods that will bring comfort to your mind.  Above all else, though emotional independence is necessary, remember to share your feelings with your mother and father.  It’s important for them to be on the same page as you.
  • While your child is still young and able, try taking him to as many different places as possible. Travel will be much more difficult, even impossible, in the future, and good and exciting memories are so important when it comes to this disease.  If it is financially feasible, going out of the country would be fantastic.  If not, getting out of town would be just as meaningful.
  • If the children in school are unwilling to play with your boy, try letting him bring something really cool (with the teacher’s permission) for a day. Sometimes kids need to have their attention inspired and it may lead them to get to know your child.  Everything in life requires a starting point.
  • When your child is suffering from leg cramps and they are causing him stay up crying all night, bear in mind a cream called Deep Heat. I started using it back when I was a boy in the Eighties and felt better immediately.  Bengay and Myoflex work just the same.  Remember: don’t let any healthcare professional tell you that this disease does not cause pain.  It does, both directly and indirectly.
  • This might not seem as important compared to everything else, but if you want your boy to feel good about himself, don’t remove the handicapped permit from your windshield when your vehicle isn’t parked. For one, it is unnecessary, and secondly, doing so makes it look like there is something to be ashamed of.  He might mention the issue a couple times, then not ever again, but it affects his way of thinking every time.
  • Remember not to mollycoddle your child. You have to look at the bigger picture in order to determine what is best for him.  If he doesn’t have the opportunity to develop a sense of emotional independence, the boy will have an impossible time getting through life in the future.  Letting him live with both smiles and tears is necessary.  All you need to do sometimes is remain to be his watchful guardian.
  • Teach your child to endure. Range of motion exercises are painful but necessary.  It’s more effective to start at a young age to keep his extremities as flexible as possible.  With this disease, once you lose something, it’s gone forever, especially when he gets older.  He needs to understand the rewards of sacrifice.  Think of this as preparation for a cure.
  • When your mom, or anyone else, is feeding you while feeding herself, remember to mind her eating. Don’t just ask for another bite every time you need one.  She needs to eat as well.  Always make sure she takes a bite before asking.  A great part of this disease is also about taking care of your caregivers.
  • Always encourage your child to play with action figures rather than video games. Gamepads only utilize thumbs and occasionally, the index fingers, while action figures give much more exercise.  They force children to train their motor functions, including dexterity, reach, and even weight lifting.  Physical toys help to inspire imagination, which is something your boy will need when he becomes non-ambulatory.
  • If you’re in the middle of a conversation and your child needs assistance, don’t apologize to that friend for the inconvenience, especially in front of your boy. He already feels like a burden and unnecessary apologies will make him think worse of himself.  The symptoms of DMD are out of our hands and dealing with them requires no shame at all.  Dignity before anything else!
  • For parents of young children especially, please remember these two medications: Targin and Resotran. Targin is a narcotic, but because of its combination, the Naloxone, belonging to a group of medications known as opiate antagonists, is used as a preventative measure for the side effect of constipation from Oxycodone.  I wouldn’t recommend it to my generation as it still affects me, but for kids who are stronger, this should definitely help.  Resotran helps with digestion and I use it all the time.  It’s much, much stronger than Domperidone.  I only need 3/8 of a tablet each day.  It can prevent intestinal blockage, while allowing your boy to eat more protein without consequence.  Both drugs are quite expensive.  However, in a couple years or so, they will become generic by law, so be sure you keep them in mind.  They are essential for DMD patients.
  • Let your children fall. I understand that you’ll always have the urge to protect your boy, but with DMD, he needs to develop his emotional independence to survive for the future to come especially.  When you’re physically dependent on everyone around, it’s critical to still have something of your own.  For the most part of this disease, it’s a psychological war.  He will eventually need to deal with things alone and it’s always best to start at a young age.
  • Remember that for boys like us, words often speak louder than actions. There isn’t a day that goes by when we don’t feel like a burden at the back of our minds.  If you believe our words that we will help around the house and take care of you if ever we might walk again, it means the world to us.
  • As knowledgeable as doctors and healthcare professionals are, always keep in mind that they do not know everything. You understand your body better than anyone else.  You’re the only one who can make the best decisions for yourself.
  • Remember parents, to always take the time to go out on dates. Don’t ever overlook your marriage because of the hassles of this disease.  Your relationship is the foundation of your family and boys like us especially, need unity.  Always take care of one another as husbands and wives.  You need some time to yourselves too!
  • When your child is still able to walk, don’t make him go to bed when the sun is out in the summertime. DMD isn’t simply a muscle wasting disease.  It’s a time waster just as much.  Before going wheelchair bound, let him have the memories of playing with his friends outside.  Having to get stuck looking out the window with all the laughter and yelling is one of the worst feelings in the world.
  • Remember that plastic forks are a giant hazard. The points have a great potential for failing off while eating, and you can imagine what would happen if your child choked on one.  It almost happened to me once with a McDonald’s Cesar salad.  Always have metal utensils available during travel, just in case.
  • For those of you whose children are losing their ability to walk, don’t be down on yourselves when he doesn’t want to be carried in front of his friends. He is not embarrassed of you.  He is embarrassed of this disease, which is absolutely normal.  The boy simply doesn’t know how to express his feelings at that young of an age.  Instead, be proud of him for having the motivation to do things on his own.
  • Summertime is drawing closer and mosquitoes and flies and other flying insects will soon become airborne. Remember when going out to always use your tongue as a shield behind your teeth.  That way, if you open your mouth accidentally, no bugs can get in.  It’s a simple piece of advice, but I’ve been doing this for years and I haven’t swallowed any questionable creatures since.  You have to do everything you can to protect yourself when you’re non-ambulatory.
  • How did I avoid getting pneumonia for nearly 34 years? Although I learned to push secretions out of my system early on, there is a trick that might save your child’s life when the chest congestion is too much.  I have a tracheostomy, which gives easy access to my lungs.  What I do is get my mother to suction down my stoma with a cut yaunker in order to clear everything.  The irritation also serves as a way to promote the mucus to come up.  I do it on occasion, and don’t get me wrong, because it is pretty uncomfortable, but the method has saved my life numerous times already.
  • When swallowing pills, the best way to guarantee that they go down properly is by positioning them correctly before drinking water. Be sure the tablet or capsule is on your better side, slightly above the swallowing area, in order to prevent the flush from making it go all over the place.  Target practice without a weapon!
  • There is always a concern among parents that having their children participate in PE will cause unnecessary harm to the muscles. It really isn’t the case.  A lot of people wonder how I’m still able to eat, swallow, and chew regular food… simple: exercise!  No matter how long it takes, I just keep going, even when my mouth is exhausted.  When I was in the second grade, my school sent me to Variety Village every week, a sort of training centre for people with special needs.  Perhaps it helped and perhaps it didn’t, but I’m still here and the experience gave me the opportunity to feel accomplished.  I continue doing range of motion exercises and it’s the reason my typing capabilities remain intact.  Remember that motion is function.
  • Remember to teach your children to mind their surroundings. There will be times when he won’t see what’s going on in the background, and it’s important that he knows to utilize all his senses.  Being able to see with your ears is everything.
  • Remember to always care for your affected child with gentle hands, even when you’re upset with him. It’s the most undignified thing, depending on others in a hostile environment while being afraid of getting injured by accident.  Emotions cannot be controlled, but choosing your physical actions is possible.
  • To young parents especially, taking care of a DMD affected child will not get easier. It will only become tougher by the day.  If you’re the main caregiver, remember not to rely solely on doctors and healthcare professionals for the well-being of your son.  Instead, learn to take the initiative and overcome the mentality of squeamishness, which will probably save his life one day.  For example, my mother changes my trach tube on a regular basis without depending on the hospital.  I can be out of danger immediately because of her ability to remove herself from fear.  I cannot be more thankful!
  • Remember that happiness is a choice. Though this disease includes no option, you must remain resourceful in order to take back the things you deserve.  You cannot let it deny your smiles, regardless of circumstance.  Life is tough, but it only gets tougher with frowns.
  • Remember that happiness is a choice. Though this disease includes no option, you must remain resourceful in order to take back the things you deserve.  You cannot let it deny your smiles, regardless of circumstance.  Life is tough, but it only gets tougher with frowns.
  • Always, always, ALWAYS be prepared for power outages with batteries, gas generators, and fuel nearby. Hospitals will most definitely give assistance, but nothing is guaranteed.  The more options and backup plans, the safer you are from danger.
  • When your child is not getting better from being sick, or if his condition is out of the ordinary, NEVER hesitate to visit emergency! I cannot stress this enough because if you let it fester, things can easily make a turn for the worse.  If you’re worried about the waiting room, make him wear a mask.  Risks are necessary sometimes, and with this disease, prevention is always the priority.
  • If you’re having a bad day (health wise) and it’s getting tough for your family as well, remember not to say you’re sorry. Your parents would appreciate it much more if you just said thank you, because you know what?  You’re in it together, and apologies are unnecessary.
  • Remember the importance of your child’s need for expression. I understand that many are concerned about the anger phase, but it is necessary.  By all means, encourage your boy to be happier and not to dwell on the negative.  However, never discourage his anger because in the future, he will need it to survive when things get tough.  Our emotions are nothing more than a form of energy, and to be resourceful, to harness the strength we have within ourselves, is who we are.
  • When it comes to bullies, don’t ever be afraid of going to a teacher, friend, or family member for help. There is no shame that you can’t defend yourself physically, so remember to always protect yourself by being smart.  You have enough to deal with as a child and there is no point in getting hurt!
  • Remember that your parents are always proud of you. It makes no difference, how limited your abilities are.  As long as you continue doing the best that you are able, that is what matters in the end.