Two we are dealing with daily are reflux and pressure sores.
Both my kids had reflux as babies, Samuel took until he was 4 to grow out of his and wean him off his medication. Evelyne's reflux was not as severe as a baby, and it wasn't until we applied the cast that it became much worse and medication was needed. The tightness of the casts and braces squeeze and put pressure on the tummy and can cause the contents to be pushed back into the oesophagus. It is also uncomfortable to eat big meals and I've heard others with spinal braces as teenagers recommend smaller, more frequent meals. At the moment Evelynes reflux is managed with medication, leaving more time between meals and bed, and avoiding some foods close to bedtime.
Pressure sores are also reasonably common on the bony prominences of the kyphosis of the spine (the hump), and sometimes on the hips where the brace or cast sits. Evelyne has a constant red area on her back which occasionally breaks open and requires something like duoderm to dress it. Fortunately in a brace, you can check it and dress it if needed, in a cast often sores are open and remain untreated. In the picture you can see the gel dressing with a groove in it from the brace digging in! (The red area is a birth mark).
Both these issues can be painful for her, but unfortunately, they are the lesser of the two evils. The treatment of her spine and attempting to manage the progression of her scoliosis is more important at this stage. So for now, we attempt to alleviate the symptoms as best we can.
Hi Lou, this is an informative post. I wonder if there might be an optimum time to remove the brace for the daily 30-60 minute respite. I know it needs to come off for the bath but is there a best time to have her meal and the bath. I assume having the meal as close to the beginning of the time without the brace? I wonder? Love, Dad
ReplyDeleteHi Louise,
ReplyDeleteWe too have battled severe reflux. Andrew was actually considered failure to thrive because of it.
(Would you ever guess that seeing him now?!?)
When we first started casting, it seemed to aggravate it more but as we've gotten correction with his spine, it has actually taken some of the pressure off and made the reflux much more bearable.
Just wanted to share our experience. It breaks my heart to see Evelynne's pressure sore and hear of her reflux. I'll pray for some relief for both of you.
Poor little pet. She neeeeeeeeeds a different brace. This just isn't good enough. Look at me sounding all harsh, but after almost 11 years living with congenital disease, I guess I've become that person. A lot of orthotics people are just regular people, stuck in their ways, not necessarily creative or out-of-the-box thinkers. Keep looking! Keep trying different things - create your own design! I don't get why her stomach should be pushed in at all by a brace. It's a soft area, what benefit could their possibly be on straightening the spine by pushing in that area? Cut a hole! Create a new design! Living with reflux IS A NIGHTMARE!! Trust me I know! Years of vomiting! Years of washing sheets everyday, waking up to catch pukes in the night, pukes in bipap masks, pukes all over me, pukes while driving, pukes everywhere! IT IS A NIGHTMARE!!! Change that braaaaace!!!!!! My daughter never got pressure sores like this, only when it was time for a new larger brace, and her scoliosis is huge and pokey-outy and distorted and hunched (for lack of a better visual word, not something I'd say aloud). Have the soft singlets helped at all with pressure wounds? Once those pressure wounds open, they are so hard to keep on top of. Know that one too. Arrr! I am feeling your pain!!!!
ReplyDeleteHi Jasmine, I would love to hear more about the designs you have found work for your daughter. Maybe an email? The shirts have definitely helped. No open pressure sores since, just areas of bruising. Unfortunately with Beals they have such slim, boney frames that it will always be a problem area.
ReplyDelete