Posted on October 01, 2006 at 07:15 AM
I asked my cousin Michelle, whose son Ryan has OI, to put together a few tips about caring for an OI child. I told her to write about things that she knows now, but wish she knew (or wished someone had told her) when Ryan was just a baby. OI is a scary thing, especially if you are parents for the first time, so here are some helpful tips from Michelle.
The first initial thing that we did when we found out Ryan had OI was to write down the words "Osteogenesis Imperfecta". Unless you are familiar with it, it isn't an easy term to remember. My aunt typed in OI and printed out info for my parents. They found in the literature, that egg crate foam in the car seat is very beneficial. A 5lb baby doesn't exactly fit well in a car seat, not to mention a fragile baby.
We cut out pieces from the foam pad and put it in the corners of the car seat and on each side of his head. When we came home we also put egg crate foam in the bassinet and he still has it in his crib today. The egg crate makes it more comfortable and evenly distributes his weight.
Years ago, parents were told not to hold their children. Today, it is the most recommended thing. Children need to feel loved.
To transport Ryan as a baby, we were told to make a base of egg crate foam rubber and put it into a pillowcase. An actual pillow will work just as well if you don't have access to any foam rubber.
We had received so many cute clothes before Ryan was born, but most of them he couldn't wear. We found the best clothes for little babies is a button down or zipper type outfit. You don't want to be cramming their legs or arms into the outfit, which could possibly cause a fracture. Ryan was not able to hold his head or sit up, so we bathed him with a sponge on the bottom of the tub with just a little bit of water. We tried baby bath seats, but it was difficult as he was unable to sit up.
Another thing we had to be aware of was his head shape. Ryan's head was very soft from the start of his forehead, through the whole top of his head, and down the back of his head. If a child spends to much time on one side of his head it begins to take that shape. So we had to be constantly repositioning him using receiving blankets to prop him up.
Some kids get helmets that help with the shaping of their head. (You can check out helmets on Jonathan's web site listed below)
I feel very strongly that I know what is best for my child and I have the right to tell the Doctors "No, you can't do that with him." When dealing with medical staff, be sure to ask any & every question. For example: we were told that taking a blood pressure reading might fracture his
arm. The band that goes around the arm could get too tight and possibly fracture the arm.
My next subject is therapy. The first week we had Ryan home, we had people calling to set up appointments for therapy. The hospital contacts the county you live in and they set up the initial appointment with a group of therapists to see what your needs are.
In our county, it is called the Birth to 3 program. They provide services from the birth of your child all of the way until he/she is 3 years of age. Right now Ryan receives Physical therapy twice a week, Occupational therapy once a month, and speech therapy once every other week. This is a lot of therapy to manage.
Though the absolute best therapy for an OI child is water therapy. Water therapy is the best therapy of all because the risk of fracture is very low. A lot of kids learn their first steps in the water. I have to say the therapy we receive is great. I never did think I would see the day that Ryan would hold his head up, sit up by himself, backwards butt scoot, forward butt scoot, and most recently pushing up on hands and knees. Not to mention a little bit of crawling. Every little step is a huge accomplishment and I cannot emphasize how important physical therapy for an OI child is.
Another important step in our life has been pamidronate treatment. Pamidronate makes the bones harder. It takes the osteoclasts and stops them from taking away the old bone and keeps the osteoblast which build new bone. For awhile there Ryan was breaking every two months, but since the pamidronate treatment we have encountered a couple minor breaks/microfractures. I call it the miracle drug.
Changing diapers is different from a normal child. Never pick up from the legs. You should lift from under the butt and slide the diaper under. You also should never pick up a child from under the arms. It could cause a break in the arm/should area and even in the rib cage. We picked up Ryan for a long time by putting one hand under the head/neck area and the other hand behind his back/bottom area and picked him up as a unit.
OIparents@yahoogroups.com is the best on-line group for new parents and parents of young children. It was started by a Mother and Grandmother of a child that has OI. You can get on the list by contacting firstname.lastname@example.org. You can read their story by going to Jonathan's web site listed here http://ceciliaykerstiens.tripod.com/babyjonathan/index.html. The site contains a lot of great newborn tips.
Thanks Michelle for all the information. If you have something you would like to add to Michelle's list, feel free to leave it in the comments below.