United Brachial Plexus Network, Inc.

Hi,

My sons cast comes off this week and I would like some opinions as to what to expect as far as discomfort,stiffness and movement. Any advice as to what really helps to make him comfortable? How soon did you start therapy and what kind. He had a muscle transfer and the caps. He has been in a hard cast for 6 weeks. Also,any advice on scar creme. Did any of your children have puckering around their scar?

Thanks so much for all of your help!

Felicia

Felicia - I think you already figured it out...
you wrote "discomfort,stiffness and movement" - I'm just going to add "reduced" - so that it's reduced movement.

We have found that getting them in warm water right at the times of de-splinting/(casting) is very helpful and soothing - tylenol before to prepare and also emotionally prepare them as well so that they are not disappointed when their arm can't move well and is so sore.

If a pool/bath wasn't available, I would desplint Maia while she was laying down and put warm compresses on her arm and do a soothing very soft massage just to get the circulation moving.

She was always more sore the next couple of days and had to be resplinted for a while and she was always scared the next day to bring her arm down. So I think it's really important to let the child find their own timing with this - let them run the show on what they feel comfortable with and what they don't feel comfortable with. Don't push it.

We never stopped therapy during splinting time - we worked on one-handed living so there was no transition. But I would say that anything done with the arm should be very carefully done - and for not too long a time. I think the best therapy done at first should be in the water. Is that available to you?

About scar creme - this is personal preference - mostly decided by skin type and allergy possibilities. Many people love vitamin E but some children are allergic to the wheat germ oil it is put in - so you have to be really careful and test in another area first. Some people use cocoa butter with good results. Some people use a combination scar lotion. Some people like Mederma - but it is really high priced ($16 for a very small tube). Some children won't allow for scar massage at all because it is too sensitive...may take them a while for them to become comfortable with it. Just start off very slowly and very carefully because it is sore.

How children heal from their incisions is a very personal thing and it will be different in different parts of the body. It is an immune system response if a child keloids, etc.

Maia has 4 good size scars. ALL of them became infected sometime after 1-2 months post surgery. We found out that she was allergic to the suture materials. One became extremely keloided and we had to have that surgically repaired and now it is fine. The latest scar in the back is partially keloided. And usually it is fine, but when Maia is having an allergic reaction to something, we notice that the keloiding doubles in size and gets very purple - it's a definite response.

We have had a good result with a product called Oleeva (which is a brand of very thin silicone patching) but it has not stopped this immune system response. Other people have reported good results with Curad Scar products. There are other silicone patches on the market as well - you may be able to get some from your therapist for free.

One thing I have told others about is that if your child's scar is bad, you can get a referral to go to an OT or PT who is a scar specialist in a burn center. These therapists are experts in scar management and can help devise a plan. It may be helpful to have some expert in this area to monitor the scar, give advice as to what products to use and this way you probably gain access to more products and your insurance may cover them.

good luck!!
-francine