Kieran is going for cast 10

[Guest guest]

Hello,

my 3 year old son, Kieran Arnold Leamy is going for his tenth cast next

Thursday, April 19, at Salt Lake City Shriners.

Kieran started out with some spine problems that showed up right after birth.

At four months of age he was diagnosed with Infantile Scoliosis, rotation, an

RVAD over 60, and ribs that bowed and flared oddly. At 17 months of age he was

placed in a brace, that sadly, ended up not fitting him. Kieran was placed in

his first cast at 20.5 months of age. At the time he had an 85 degree curve,

almost 90 degree rotation, 110 degree RVAD, and slightly thin ribs that where

bowed and flared oddly. That is all. Other than that, one doctor has diagnosed

him as not having formed the third lobe in the three lobed lung due to his

scoliosis but he plays, runs, jumps and learns normally, although he is shy.

So for his 10th cast, it has been requested that we keep Kieran out of cast for

3 to 5 days beforehand so that his skin can heal.

From the time the first cast was removed he has had open abrasions, a rash

separate from the purple rash that disappears or fades under the cast area in a

few hours time, and sometimes areas that are forming into sores that the team

who treats him works around, I am told, by placing felt over it and leaving a

hollow section to keep pressure off of the area forming a sore.

Other than this, Kieran ends up having the casts too tight around his little

waist and this area has been affected by it. I suspect this is because

originally Kieran was not growing very well due to all the pressure and pain he

was in (most kids it is my understanding do not find severe scoliosis like his

painful, but Kieran for some reason was in an unreal amount of pain for the

first 20 months of his life and I think this was very hard on him, including his

body's ability to thrive and grow) and his body ended up playing catch up and he

grew a lot once he started being cast. Today he is of normal height, although

still short from what he would have been otherwise I am sure.

So we are going to take him out of his cast for probably 4 days. What I needed

was to be able to stick close to home and we have worked it out as the road from

our house is an hour long vomit comet over the rocky hills to town. So we will

first do the trip with him when we need to leave for the plane ride to Salt Lake

City.

Other than that I am at a loss of what I can do to keep as much of his

correction as possible over the four days. I can reach Kieran's spine with my

tiny hands and it is quite literally " popping " in and out. It will go to a

curvature less than 30 degrees I'd say with rotation that I cannot detect and

the bowing of the ribs will be way down, although the severe rib angle on hump

the one side would still remain. So I know his little spine is going to pop

out. Now I know that it is the cast causing it to " pop " in and I love it and

wish he could just hold there. It is my opinion that his scoliosis is caused by

a birth injury and I fear that he has permanently damaged joints between his

ribs and vertebras at the apex, although I have been assured by the doctor that

they would have satisfactorily healed in a few months time and it has been three

and a half years. So I am curious if anyone else's spine " pops " in and out like

this? I do not rub my son's spine. I have done a lot of research into massage

and massage the long muscles running up and down alongside the spine with the

slightest pressure, very carefully, soothingly, paying close attention to what

Kieran thinks and avoiding the spiny ridge in the back. I have been giving back

massages to children and babies for 25 years and have given several hundred

massages to adults as well, although I am not a massage therapist and supposedly

I really know my stuff. I have had massages given to me by persons who have no

idea what they are doing and they can be extremely damaging so I recommend that

before anyone who is unsure tries massage that you start slow, do some research,

get some feed back, remember that some casts can be very tight and don't force

anything. This is only the second cast where I could massage Kieran's full

back. The other one was cast 6 or 8, I don't remember, and he has had two casts

that where very tight and not even his undershirt could be changed.

Particularly when he was younger, this seems to be improving as he ages.

So he has about an 85 degree curve then, although there is signs that in some

ways he may be improving. The doctor's goal is to buy him growth time before

more invasive treatment. My goal is to avoid surgery altogether, or perhaps

only cage fuse the few vertebra with severely damaged joints. I'll cross the

bridge to the doctor's goal when we come to it. But he is about 50 degrees in

cast right now and only three years old. I understand that we are removing the

cast for four days so that he can heal his skin and soft tissues from the

pressure that the cast has placed on him, but I am concerned about what I can be

doing to improve his chances of going back into a cast at 50 degrees once again

on April 19. We will cut the cast off on Sunday April 15.

Also, has anyone had their three year old cast without a general anaesthesia and

how did it go?

Now, I am sorry to anyone who actually read this, I do wish I had pared it down,

but it did feel good to get it off my chest. Thank you to those who respond.

Also, anyone else going to be in SLC for a cast April 18, 19 or 20? We will be

staying at the RMDH.

Best wishes to everyone and their families!

Shauna Leamy

mother of Kieran, Kelsey and