Tips from JM Families for JM Families

Anxiety

Reduce Anxiety During Treatments Submitted by Jeanette W.

After five months of smooth treatments, my 4-year-old daughter became traumatized by repeated shots, IVs and port access. She went from mostly serene to kicking and screaming, and this required that she be held down to have her port accessed or to get her shots.

Our “miracle” was virtual reality glasses. Kids can watch anything they want, and earphones are built into the glasses, so all other sounds are blocked. Happy singing shows work great for Grace–like Alvin & the Chipmunks, but any show that really interests your child or provides a happy or soothing passive viewing experience works great.

Ask the child life professional at your child’s hospital for their other ideas as well.  Many child life specialists will let you borrow VR glasses, iPad, video games, or other distraction devices during treatment.


Shot Day

Shots and Blood Draws Submitted by Erin D.

My son was three years old when he was diagnosed with JDM and did not like the shots or blood draws. I decided to take him with me to get a shot. I explained that if he sat still and took a deep breath, the shot would not hurt. I think seeing me go through the same process helped him.

Additionally, a nurse friend suggested allowing my son to clean his leg with the alcohol pad and decide where he will receive his shot. Giving my son some control over his situation has helped him tremendously. Now, my son goes to the doctor and tells them what to do. They can’t believe how calm he is. At 3 1/2, my son handles his shots better than I handle my own!

Shot Day Tips Submitted by Various Parents

  • Some other parents have successfully given the shot after the child has fallen asleep using numbing cream.
  • My son started getting sick near the end of his treatments, but I suspect it was from anticipation. I switched his treatment days, so he wasn’t anxiously waiting for Friday to arrive. He didn’t know if it would be Thursday night or Saturday morning.
  • Check with your physician about giving Zofran before the shot and the following morning if needed. 
  • My son used cold spray immediately before receiving his shot. Sometimes putting two ice cubes in a freezer bag and then wrapping them in a towel can be helpful. The child can then control the numbing, which goes deeper than the cold spray alone.
  • Ask your physician about trying a different formula; switching formulas with and without preservatives may cause less burning for your child.
  • Let your child have some control in the process—create a list of what time they want their shot, what room they want it in, and if they want any distractions.
  • After the injection, having something exciting planned that your child will look forward to keeps their mind occupied. 
  • Give your child a strong-tasting food like pickled onion, sherbet, or sour candy before their shot as a distraction.
  • Try different times of the day. First thing in the morning works for some, so there is no time to worry and get worked up. Others prefer to do it before bed, so they must prepare themselves.
  • The rheumatology psychologist currently runs a needle-phobia support group, but they are looking at setting another up specifically for methotrexate. It might be worth seeing if your hospital offers something similar.

Methotrexate Injections Submitted by Ed

My 9-year-old granddaughter has weekly Methotrexate injections. She has grown to hate them, so my daughter gives them to her when she is asleep, eliminating a lot of struggle and tears. My granddaughter usually sleeps through the injection.

  • Ask your physician about adding or increasing your child’s folic acid dose; this has helped my son with vomiting.

Sun Protection

Maclaren Stroller for Big Kids Submitted by Shari H.

This stroller has been such a lifesaver for us. Our son, Parker, is five years old and too big for a traditional stroller, but this one accommodates a child up to 120 pounds. And the big bonus is that it is collapsible in a few steps. In fact, it folds up just like an umbrella stroller. We were considering buying a wheelchair for times when Parker is too fatigued to walk, but this is a much more attractive alternative and doesn’t have the same stigma attached to it. It can be shipped in a few days.

Ray Shade by Kiddopotamus Submitted by Shannon

I bought this for Kaylee’s jogging stroller. It blocks so much sun, and Kaylee doesn’t complain at all. It folds up and is very portable though I leave it attached to Kaylee’s stroller when we travel. I never had a problem with it ripping, either. I feel very good knowing that this is SPF 50 and Kaylee can enjoy activities with the family during the day instead of us having to decline outings due to her sun sensitivity.

Keeping Cool and Safe From the Sun Submitted by Mary-Jennifer

My dermatologist told me to wear pants and long sleeve shirts, a hat and sunscreen outdoors, no matter what. During the summer, if I use an umbrella and apply Neutrogena healthy defense daily moisturizer SPF 30. Using this before I go out every morning has improved my rash more than any prescription creams my dermatologist recommended. For dry skin (including rash areas), Cetaphil helps and lightens my rash. Both the daily moisturizer and lotion are available at most stores.

EZ UP Sun Shade Submitted by Jennifer K.

Because JM kids can be sensitive to sunlight, a portable sun canopy is a must for many outdoor activities. Ours is a 10′ x 20′ shelter with attachable sides that extend to the ground. These shelters are used a lot at outdoor art fairs and craft shows. Since it is portable and has a carry bag, it goes with us everywhere—to the beach, to the park, to a picnic, or even in our backyard! For maximum protection against the sun’s rays, look for a model covered in Solumbra fabric.

PICC line versus Port-a-Cath Submitted by Shari H.

We started with a PICC (Peripherally Inserted Central Catheter) for Parker, age five, due to his high IV volume. Inserted while he was under general anesthesia for another procedure; it can also be inserted while awake. It is attached to the underside of the elbow with lots of tubing and tape. It was a disaster for us. We were at the hospital an average of twice weekly for PICC line repair. The line kept moving because Parker was active. His little brother would tug on it, and his older brother would accidentally pull it while playing. It was also difficult for Parker because it had to be kept in place with a lot of sticky tape. He does not like having band-aids removed, much less tape similar to Super Glue!

The Port-a-Cath has been a much better option. It was surgically inserted into his chest under general anesthesia by a pediatric surgeon. The cath is completely under the skin, so it is less risky to move when playing with his brothers and friends. There is no upkeep for it at home since it is flushed at the hospital when he has infusions. He can bathe and swim as he normally would. There is no tape on the port, so there is nothing to remove before an infusion. There is still a poke through the skin, but a little numbing cream helps him. The port also has less risk of infection than the PICC line. So far, it has been a good choice for us.


Medication

Pills vs. Liquid Medications Submitted by Shari H.

We have had a trial-and-error process with Parker and decided between pills and liquid medications. He prefers to take some medications as a pill and some as a liquid. The prednisolone and liquid taste awful, so we thought the pills would be the quickest and easiest way to go. He couldn’t swallow the pills because the taste bothered him too much. So, we tried crushing the pills into yogurt or ice cream, which took the whole process longer. Each bite was torture for Parker. We switched to the liquid, and although the taste was bad, he got it over with quickly and was done with it. Now, he doesn’t need a drink to get rid of the medicine taste!

Masking the Bitter Taste of Prednisone Submitted by Jennifer K.

When Sydney started taking Prednisone at age three, she hated the taste. She was given the liquid form for about one year, and the pharmacist would add flavoring to it, but it still tasted awful. We finally discovered a form of liquid Prednisone that tastes like grape Kool-Aid. The brand name is OraPred. Sydney would take this with no issue because it tasted good.

When she started taking the pill form, it still had the bitter aftertaste that would give her shivers. With trial and error, I discovered that if I crush the pills, add a drop or two of water to dissolve them, add some Smuckers Blueberry syrup, mix well and then draw all this into a liquid medicine syringe, it tastes pretty good too. We would crush all her meds together— the doctor said this wouldn’t hurt anything—and she no longer complained about the taste.

Tip for Emla Application Submitted by Jennifer K.

My husband and I learned early on that Sydney is extremely sensitive to many of the tapes on the market used to apply Emla cream, especially Tegaderm. When Sydney has an iv or blood work done, we first apply the Emla, but instead of the Tegaderm, we use saran wrap to hold the cream in place—we tear off a piece and make a strip of it to wrap around the arm. Also, there is a product out there called Coban. It is an ace bandage type of dressing that sticks to itself. Sydney gets her arm wrapped in this instead of tape or op site. It doesn’t stick to the skin, so you have a painless removal. The nurse uses a little tape, but the paper tape is easy to remove when water or mineral oil is applied. Good luck!


Miscellaneous

Tips for Grandparents Submitted by Harriet B.

When your grandchild has JDM, there are so many things you can do to cheer them up, even if you live far away. Putting laughter into their lives can help them cope with the illness. My granddaughter, Amanda, lived almost 1000 miles from us when she was diagnosed, and it was very difficult hearing about her symptoms and knowing what she was going through each day. I decided to “cheer” her up by sending joke books and other books. Then I would call her, discuss the books and tell each other jokes. It made me feel better to hear her laugh, and I think she felt better, too! Laughter is powerful medicine.

Try Yoga Submitted by Donna A.

Recently I asked my son Colby, age eight, what advice he’d have for someone going through JM. He said, “a good yoga teacher, a good PT,” he hesitated and added, “and good doctors.” He’s been fortunate to have all the above.

A quick note on yoga, it can be kid-friendly with lots of animal poses and a fun way to do the stretches our medical team recommended.

Keep a Journal Submitted by Ralph B.

Get a notebook or journal, label it “JM,” and start taking notes. Bring it with you on office visits, and write down exactly what your doctors say because you probably won’t remember later if you don’t. Keep the notebook handy, and write down any questions as they occur. Enter all lab test results. Jot down events, including falls, colds, etc.—they may seem insignificant alone, but a string of them can indicate a trend or a symptom. A notebook like this can be very valuable to you and your medical team.

Show Appreciation Submitted by Ralph B.

Show your appreciation to caregivers and medical professionals. They are often taken for granted and genuinely appreciate a personal thank you, general greeting, or a small gift, especially at holiday time. Remember your doctors, nurses, physical therapists, home health aides, administrators, and even your pharmacist—anyone who has made dealing with JM a little easier in some way.

Dentist Visits Submitted by Jennifer K.

We learned that it is sometimes necessary to pre-medicate with antibiotics before dental cleanings. Each doctor is different, but when Sydney’s dentist and rheumy conversed, they felt it was best. Both questioned why risk an infection when the bacteria in the mouth enters the bloodstream. Call your dentist a few days before the scheduled appointment, as it can take a while to fill the antibiotic prescription.

Do you have a Tip to share? Please e-mail it to info@curejm.org

Doctor and young juvenile myositis patient.

What is Juvenile Myositis?

Juvenile myositis, including juvenile dermatomyositis and juvenile polymyositis, is a group of rare and life-threatening autoimmune diseases, in which the body’s immune system attacks its own cells and tissues.

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