Tips from JM Families

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.

Shots and Blood Draws

Submitted by Erin D.

My son was three years old when he was diagnosed with JDM. He did not like the shots or blood draws and would cry and tense up terribly. 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 won’t hurt. I think him seeing me go through it; it helped him. A friend of ours who is a nurse has also been helping with his weekly shot. She allows him to clean his leg with the alcohol pad. He also decides just where the shot will go. He’s having some control over the situation has helped tremendously. Now he goes into the doctor and tells them what to do. They can’t believe how calm he is. Only being 3 1/2, he handles his shots better than I do now.

Shot Day Tips

Submitted by Various Parents

  • You are not alone; staying strong all the time is exhausting; cry a little when you need to
  • Some other parents have had success giving the shot after the child has fallen asleep (use numbing cream)
  • My son did start getting sick near the end of his treatments. I think it was more from anticipation, though. I ended up switching his days, so he wasn’t upset waiting for Friday. 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 next morning if needed)
  • Use numbing cream an hour before the shot or spray immediately before the shot.
  • My son has used cold spray immediately before. Sometimes putting two ice cubes in a freezer bag and then wrapping them in a tea towel can help. The child can then control the numbing, which goes deeper than the cold spray alone.
  • Try a different formulation (ask your physician); switching between formulas with preservatives or without may cause less burning for your child.
  • Let the child have some control: writing a list of what time they want it, what room they want it in, and if they want any distraction, etc.
  • After the injection, having something exciting to look forward to will also keep their mind occupied. (new book, video game, TV, something fun they can’t normally do, etc.).
  • Eating something strong tasting like a pickled onion, sherbet, sour candy, etc.
  • Trying different times of the day. First thing in the morning works for some, so they haven’t had time to worry and get worked up. Others prefer before bed, so they have to 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 has something similar.
  • Ask your physician about adding or increasing your child’s folic acid dose; this has helped with the vomiting for my son.

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 just 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 it is SPF 50 and that Kaylee can enjoy activities with the family during the day instead of us having to decline outings because of her sun sensitivity.

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 ft X 20 ft shelter with attachable sides that go all the way 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 own backyard. For maximum protection against the sun’s rays, look for a model that’s 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 5) due to his high volume of IV’s. It was inserted while he was under general anesthesia for another procedure, but it can be inserted while you are 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 2 times a week for PICC line repair. The line kept moving because Parker was fairly active. His little brother would tug on it, and his older brother would accidentally pull it while they were 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 like Super Glue. When bathing, we had to wrap the line thoroughly so no water could get in. We also had to flush the PICC line daily with a saline solution.

The Port-a-Cath has been a much better choice for us. It was surgically inserted in his chest under general anesthesia by a pediatric surgeon. It is completely under the skin, so there is little risk of it moving 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 as he normally would, and he can swim and do any other activities that he desires. 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.

Tip for Emla application

Submitted by Jennifer K.

I was talking to another mother today about how her daughter hates to have the tape removed that is used to apply the Emla cream; I believe the name of the tape is Tegaderm. (Especially when the child has the extra hair growth that is caused by steroids, who would want to rip off the tape, it hurts) I thought I would post how we handle this “sticky” situation. My husband and I learned early on that Sydney is really sensitive to many of the tapes on the market. When Sydney is to have an iv or even blood work, we first apply the Emla but instead of the Tegaderm we use saran wrap to hold the cream in place. Tear off a piece and make a strip of it to wrap around the arm. Sydney’s favorite color is purple; let the kids pick their favorite. 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 does use a little tape, but it is paper tape that is easy to remove when water or mineral oil is applied. Good luck!

Pills versus liquid medications

Submitted by Shari H.

We have had a trial-and-error process with Parker and decided between pills and liquid medications. Some medications he prefers to take as a pill, and some he prefers as a liquid.

The prednisolone pills and liquid taste awful, so we thought that the pills would be the quickest and easiest way to go. He couldn’t swallow the pills whole because the taste bothered him too much. So, we tried crushing up the pills into yogurt or ice cream, and that just made the whole process take longer. Each bite was torture for Parker. We changed to the liquid, and although the taste is still bad, he gets it over with quickly and is done with it. Now, he doesn’t need a drink to get rid of the medicine taste!

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 some laughter into their lives can help you both 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 such as “Amelia Bedilia,” which is a hilarious account of a young girl’s escapades. Then I would call her, and we would 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.

Masking the Bitter Taste of Prednisone

Submitted by Jennifer K.

When Sydney started taking prednisone, she was three, and she hated the taste of it. She was given the liquid form for about a year, the pharmacist would add flavoring to it, but it still tasted awful. We finally discovered that there is a form of liquid Prednisone that tastes like grape Kool-Aid. It is called OraPred (brand name). Sydney would take this with no fighting. It really tastes good; I tried it.

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 just to dissolve them, then add 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.

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 then added, “good doctors.” He’s been fortunate to have all the above.

A quick note on yoga. It can be very kid friendly (e.g., lots of animal poses) and is a fun way to do the stretches that 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 all the time, and write down any questions as they occur to you. Enter all lab test results. Jot down events that occur (like falls, colds, or whatever)—they may seem insignificant alone, but a string of them can indicate a trend or a symptom. Having 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.

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. This has eliminated a lot of struggle and tears; my granddaughter usually sleeps through the injection.

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 felt that why risk 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 get the antibiotic prescription filled. 

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 at all times no matter what…. this was not something I wanted to do. I found that I don’t get too hot with pants, capris or knee-length skirts during the summer if I use an umbrella. I also use Neutrogena healthy defense daily moisturizer SPF 30. This is easier than sunscreen on little children every morning because it feels nothing like sunscreen! Using this before I go out every morning has improved my rash more than any of the prescription creams my dermatologist recommended. For dry skin (including rash areas), Cetaphil helps and it lightens my rash. Both the daily moisturizer and lotion are available at most stores (I have the best luck at WalMart).

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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.

Treatment Plans for Juvenile Myositis

A treatment plan is based on many factors, including the severity and expression of the juvenile dermatomyositis (JDM). Each case is different and the symptoms can change over time.

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