by Tracy Denell – As presented at the DMD Family Roundtable on May 3, 2008
1. They need a story to tell.
2. The story should be one they understand and in their words. They need to be comfortable with telling their story and not get upset when telling it.
3. The story needs to be in language others will understand.
4. They need to tell others how they are different and how they are the same.
5. If they are comfortable with siblings, others will be more open and accepting of how they are different. Sometimes they like the attention, sometimes they are jealous. Let them be separate from the diagnosis if they need to be. It can’t be their world or they will resent it and you and they afflicted sibling.
6. Do not keep the diagnosis a secret…I have seen this be emotionally tragic in later years. They are smarter than you think. You can’t keep things from siblings for long and need to be in the loop. They worry too.
7. Treat your children’s relationship as normal as possible. Let them fight and love. Don’t interfere too much…they need to work out their own relationship. Don’t take sides if you can help it. They will be more resilient and emotionally healthy for that. Don’t force the relationship and don’t force the sympathy it will only make them more resentful. They will surprise you!! Ex. I wish I was in a wheelchair…attacking the doctor. Getting on the boat, fear.
8. They need their own story. The world should not always revolve around the DMD child. Find the specialness in each. Work on your guilt!! Treat them like normal.
Tuesday, May 13, 2008
Tips from the Trenches
By Christine McSherry, RN
President of The Jett Foundation
There are many things that parents of a child with Duchenne Muscular Dystrophy (DMD) can do to provide symptom relief and to keep on top of the disease. Here are some tips that have been gleaned from my own experiences with my son Jett as well as those of other DMD families:
1. Sleep is gold for the DMD child. Try to enforce 10 hours per night of uninterrupted sleep and make sure your son goes to sleep with an empty stomach.
2. If your child complains of chest pain, you must see your pediatrician or go to the emergency room. Always have on hand a recent EKG (not more than one-year-old) as well as older ones. If you are referred to a cardiologist – bring these with you, so the physician can assess any changes over time.
3. Extra weight will strain your child’s bones and muscles, so be smart about his diet. Provide a wholesome, well-balanced meals and limit processed sugary and high sodium foods to special occasions. And remember to model good eating habits.
4. Notify your physician if your child starts snoring at night or is increasingly tired during the day. He may need a sleep study to ascertain how much oxygen he is getting at night. A pulmonologist may be consulted at this time.
5. Children as young as five, even if they are exhibit no symptoms of DMD, should wear a bi-valve cast at night for 10-12 hour stretches. It’s important that they become accustomed to wearing the cast because at some point it will be absolutely critical. If your physician hasn’t recommended its use, ask him or her about it.
6. If your child is ambulatory, place small metal tacks on the heels of his sneakers or shoes. These serve as an auditory reminder for the wearer to land on his heels first and then roll up on his toes. This is the most natural way of walking, and it encourages children to use the correct leg muscles.
7. Consult with our physician if your child suffers from nighttime bedwetting - or in medical jargon - nocturnal enuresis. This is a common problem for boys six years and older and your doctor may prescribe medication that helps reduce the amount of urine produced at night.
8. Depression, obsessive-compulsive disorder and anxiety can be symptoms of DMD. Talk to your physician about treatment options. Medication and talk therapy can be highly effective. Find a therapist with experience with children with neuromuscular or neurological disorders. Other parents/caregivers can be your best resource for referrals.
9. Your child’s labs may show his liver enzymes to be elevated, sometimes two to three times higher than the normal value. This may be a direct result of his diagnosis and may not have anything to do with his actual liver function. What the heightened value may signify is muscle degradation. If you are concerned, discuss this with your physician or with a physician with a lot of experience with Duchenne before having your child undergo further liver studies.
10. If your child requires anesthesia, it’s critical that you alert the care team that he has DMD. Using the wrong type of anesthesia puts your child at increased risk for malignant hypothermia which could lead to cardiac arrest.
11. At around the age of 10, some boys may begin to have an unusual body and hair odor. While this may be due to the normal changes of puberty, it could also be caused by the hormonal suppression from steroid use or the large amounts of supplements he is taking. Talk to your physician, who may want to do some blood tests. Don’t be embarrassed to mention this: it has nothing to do with your ability to help your son with his hygiene.
12. Last, but not least, take care of yourself! Find at least one parent with whom you can connect. Voice your fears, your pains and your hopes. Chat by phone or by email.
President of The Jett Foundation
There are many things that parents of a child with Duchenne Muscular Dystrophy (DMD) can do to provide symptom relief and to keep on top of the disease. Here are some tips that have been gleaned from my own experiences with my son Jett as well as those of other DMD families:
1. Sleep is gold for the DMD child. Try to enforce 10 hours per night of uninterrupted sleep and make sure your son goes to sleep with an empty stomach.
2. If your child complains of chest pain, you must see your pediatrician or go to the emergency room. Always have on hand a recent EKG (not more than one-year-old) as well as older ones. If you are referred to a cardiologist – bring these with you, so the physician can assess any changes over time.
3. Extra weight will strain your child’s bones and muscles, so be smart about his diet. Provide a wholesome, well-balanced meals and limit processed sugary and high sodium foods to special occasions. And remember to model good eating habits.
4. Notify your physician if your child starts snoring at night or is increasingly tired during the day. He may need a sleep study to ascertain how much oxygen he is getting at night. A pulmonologist may be consulted at this time.
5. Children as young as five, even if they are exhibit no symptoms of DMD, should wear a bi-valve cast at night for 10-12 hour stretches. It’s important that they become accustomed to wearing the cast because at some point it will be absolutely critical. If your physician hasn’t recommended its use, ask him or her about it.
6. If your child is ambulatory, place small metal tacks on the heels of his sneakers or shoes. These serve as an auditory reminder for the wearer to land on his heels first and then roll up on his toes. This is the most natural way of walking, and it encourages children to use the correct leg muscles.
7. Consult with our physician if your child suffers from nighttime bedwetting - or in medical jargon - nocturnal enuresis. This is a common problem for boys six years and older and your doctor may prescribe medication that helps reduce the amount of urine produced at night.
8. Depression, obsessive-compulsive disorder and anxiety can be symptoms of DMD. Talk to your physician about treatment options. Medication and talk therapy can be highly effective. Find a therapist with experience with children with neuromuscular or neurological disorders. Other parents/caregivers can be your best resource for referrals.
9. Your child’s labs may show his liver enzymes to be elevated, sometimes two to three times higher than the normal value. This may be a direct result of his diagnosis and may not have anything to do with his actual liver function. What the heightened value may signify is muscle degradation. If you are concerned, discuss this with your physician or with a physician with a lot of experience with Duchenne before having your child undergo further liver studies.
10. If your child requires anesthesia, it’s critical that you alert the care team that he has DMD. Using the wrong type of anesthesia puts your child at increased risk for malignant hypothermia which could lead to cardiac arrest.
11. At around the age of 10, some boys may begin to have an unusual body and hair odor. While this may be due to the normal changes of puberty, it could also be caused by the hormonal suppression from steroid use or the large amounts of supplements he is taking. Talk to your physician, who may want to do some blood tests. Don’t be embarrassed to mention this: it has nothing to do with your ability to help your son with his hygiene.
12. Last, but not least, take care of yourself! Find at least one parent with whom you can connect. Voice your fears, your pains and your hopes. Chat by phone or by email.
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