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Helpful Tips
Reduce Anxiety During Treatments
Submitted by Jeanette Bowers Weaver
After 5 months of smooth treatments, my 4 year old daughter became traumatized by repeated shots, IVs and Portacath access. She went from mostly serene to kicking and screaming. This required that she be held down to have her port accessed or to get her shots. Her trauma and fearful behaviors escalated. She was cared for by a team of mental health caregivers (child psychiatrist, child therapist, etc).
Our "miracle" was virtual reality glasses. They hook to almost any device that emits an audio visual signal: TV, VCR, DVD, iPod. Kids can watch anything they want. 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.
I cannot emphasize the effectiveness of virtual reality glasses enough. In one use we went from screaming hold-down to her relaxed viewing.
We always make sure to use a floppy hat over her face while she's watching so she can't see the nurses in her peripheral vision. Ross Rainville, the sales manager at iO Display systems (916-928-9639 press 4), was extremely knowledgeable and helpful. Here's their website: www.i-glasses.com. They have a 30 day no questions asked money back guarantee, too. The glasses we bought were the iTheater model ($250). For more on the science of why this works go to www.vrpain.com.
www.vrpain.com
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Maclaren Stroller for Big Kids
Submitted by Shari Hume
This stroller has been such a lifesaver for us. Our son, Parker, is 5-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 totally 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. The following website features the stroller:
www.adaptivemall.com/mainbug.html
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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. 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.
www.greatbabyproducts.com
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Starbright Explorer Series
Submitted by Connie Gold
I highly recommend the Starbright Explorer Series CD,
available for FREE (for U.S. residents) from the Starbright Foundation.
The CD I have contains:
Spotlight on IV's
The Sickle Cell Slime O Rama Game
Spinal Tap: Discovering the secrets of spinal fluid
Uncovering the mysteries of bone marrow
Medical Imaging: Welcome to the Radiology Center
Blood tests: Exploring our incredible blood
Cystic Fibrosis
Living with kidney disease
Madeleine especially loves the Spotlight on IV's, Medical Imaging, and the Sickle Cell
Slime O Rama game. This is a great CD and we take it with us and she enjoys it when we are getting long infusions. Plus she is learning loads from it.
For more information, visit:
www.starbright.org
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EZ UP Sun Shade
Submitted by Jennifer Kavanaugh
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. You see these shelters used a lot at outdoor art fairs and craft shows. Since it is portable and has its own carry bag, it goes with us everywhere...
to the beach, to the park, to a picnic, or even in our own back yard. For
maximum protection against the sun's rays, look for a model that's covered
in Solumbra fabric. For more information, visit
www.ezupdirect.com
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PICC line versus Port-a-Cath
Submitted by Shari Hume
We started out 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 on 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 is fairly active. His little brother would tug on it, and his older brother would accidentally pull it when 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 to have band-aids removed, much less tape that is like Super Glue. When bathing, we had to wrap the line thoroughly so that 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 he is 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.
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Tip for emla application
Submitted by Jennifer Kavanaugh
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 the 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 opsite. It doesn’t stick to 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.
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Pills versus liquid medications
Submitted by Shari Hume
We have had a trial-and-error process with Parker and deciding 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. That just made the whole process take longer. Each bite was torture for Parker. We changed over 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 even need a drink to get rid of the medicine taste!
With Cyclosporine, we started with the liquid. This stuff tastes even worse than the Prednisolone. Trust me, we tried it. It would take Parker 30 minutes to get a small amount down, mixed with orange juice. Eventually, we switched to pills. They are a little bigger than a Tylenol capsule, but they have a coating on it that helps it go down. This worked a lot better for Parker.
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Tips for Grandparents
Submitted by Harriet Bollar
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 a powerful medicine.
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Masking the Bitter Taste of Prednisone
Submitted by Jennifer Kavanaugh
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 after taste that would give her the 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 (doctor said this wouldn't hurt anything) and she no longer complained about the taste.
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Seek Help and Support
Submitted by Ralph Becker
Don't try to go it alone. Your medical team can tell you where local
support for JM is - usually rolled into another disease's support (like
JRA) because there are usually not enough JM patients in one place to
have an actual support group. Seek help from relatives, friends, and
neighbors, as well as medical professionals, particularly if your child
is disabled by the disease. There are a number of Web sites that offer
support for the Myositis diseases, and you should take advantage of
them. The people there understand what you're going through because
they've been there. Click on the Links button (on
the left side of your screen) for a list of support organizations for JM
patients and their families, click on
http://www.ralphb.net/JDMS/link.html or visit the Cure JM
Message Board
Photos
Literature.
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Try Yoga
Submitted by Donna Anderson
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 the yoga. It can be very kid friendly (e.g.
lots of animal poses) and is a fun way to do the stretches that help keep
muscles from contracture.
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Keep a Journal
Submitted by Ralph Becker
Get a notebook or journal, label it "JDMS", 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 both to you and to your medical
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Show Appreciation
Submitted by Ralph Becker
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.
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Methotrexate Injections
Submitted by Ed
My granddaughter(9 yrs.old) has J.D.M.S., and 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, and
my granddaughter usually sleeps right through the injection.
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Dentist Visits
Submitted by Jennifer Kavanaugh
We learned that it sometimes is necessary to pre-medicate with antibiotics
prior to dental cleanings. Each doctor is different, but when Sydney's dentist and Rheumy conversed they felt it was best. Both felt, why risk an infection when the bacteria in the mouth enters the blood stream?
Better safe than sorry.
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Keeping Cool and Safe From the Sun
Submitted by Mary-Jennifer Truini
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 using sunscreen on little children every morning because
it feels nothing like a sunscreen! Using this before I
go out every morning has actually improved my rash
more than any of the prescription creams my
dermatologist recommended. For dry skin (including
rash areas), Cetaphil really 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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