Looking for help/input from more experienced families

[Guest guest]

Hi -

We are just back from our son, Guthrie’s, first casting in Rochester, and we are looking for any help or input from more experienced families. Guthrie is 25 months old. He had a 58 degree Cobb angle before his cast, and in the cast he is measuring a 30 degree Cobb angle. He was diagnosed a month ago.

It's been an emotional roller coaster ride these last few days. Guthrie is sleeping well, seems comfortable in his stroller, car seat and high chair -- and generally he's learning to get around quite well. But those moments when he's scared or can't do what he wants to do are hard. He's currently terrified of stairs, but when we toss his pacifier a few steps ahead of him (going up or going down) on the steps, he immediately scampers for it and forgets the obstacle in front of him. It's heartwarming and hysterical!

We are learning about trimming and reapplying the copious amounts of moleskin that constantly peel off his cast. The moleskin edges roll up and stick to Guthrie's clothes, and then roll up even more. We are learning about diapering, too, and not at all confident about it yet. Two days out from the casting procedure, and Guthrie still hasn't taken a poop, so our teeth are clenched waiting! We're trying to use panty liners to protect the back of the cast, but everything just seems like a disaster with the diaper -- bunching, sliding, drooping, etc. I am going to search these posts immediately for as much diapering advice as possible!

We are concerned about food dropping down into the front of the cast, and we're concerned about Guthrie breaking the cast (our doctor said he has one patient who breaks his cast every time, and Guthrie is incredibly physical, so yikes!).

Since Guthrie was diagnosed so recently, and we are (thankfully) in his first cast already, we are trying to learn as quickly as possible, and it's so much to absorb! We ask tons of questions to our doctors, but somehow we still feel we don't totally understand what's in front of us. Some days this feels normal and manageable, and some days it feels the opposite. Guthrie clearly is the same little wonderful guy in his cast, so we know it's all ok.

Our big question is still about understanding what the different treatment paths might be. I think this captures what our doctor has told us about Guthrie's probable path: if casting is working, our doctor would consider casting Guthrie until he was 5 or so; then, if Guthrie’s spine is not straight after casting, Guthrie would have spinal rod extension surgeries for 2, 3, 4 years (until scarring made it impossible to do another surgery); and then when Guthrie was as old as possible, hopefully not earlier than age 10, Guthrie would have definitive spinal fusion surgery, which would be the end of his treatment. Everything with casting and the extension rods is to delay the definitive spinal fusion for as long as possible, and in Guthrie's case we'd be lucky to make it to 10 years old.

Of course, we hold some hope that the casting alone will straighten Guthrie's spine, but we are also trying to be very sober and realistic. Still, some of the math of the treatment course described by our doctor remains unclear to us -- for example, if the casting doesn't seem to be working (and how/when will we know that?), could Guthrie begin getting extension rods this year, and then therefore have spinal fusion when he was only 5 or 6? And what about bracing to delay spinal fusion as long as possible? Our doctor described bracing as the same as doing nothing right now, so would that be true in a few years when Guthrie’s older? Sigh.

If anyone has wisdom they'd like to share in regards to any the subjects I've touched on here, we would welcome it happily -- either posted to the group, or sent in confidence if you prefer.

Thank you, and good luck to everyone --

amanda@...