Re: Kieran is going for cast 10

April 9, 2012

oh you have been through so much! I'm sorry. Its ok to get out a long

email...I think it helps relieve anxiety sometimes. I do not have any

advice for you, I'm sorry. Although Levi did get a small sore on his

small of his back this last time & they are doing the felt trick on his

cast too. We also go to SLC but will get his 4th cast on May 4th. I

wasn't totally understanding what you meant by " pop " ? Levi's shoulders &

back area pop sometimes too. (even in cast) I asked Dr. D about it & got

a few plausible causes but for Levi they were not as convinced as I am

that it is scoli related. I believe for him the popping happens with a

growth spurt. He popped in his second cast for a week and stopped. When

the third cast was applied we did indeed get better results by at least 4

degrees.

amber

> 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

>

April 9, 2012

Thank you for your reply and kind words Amber. It does really help to talk

about it. By " pop " I mean the orientation of his spine physically changes, as

in his curve will go from about 50 degrees to about 30 (although it feels more

like 15 to me I am sure it is more like 30 degrees) and his rotation from about

30 degrees to about 10 degrees (although this feels like between 0 and 5 degrees

to me) and the bowing of his ribs on the side with the window will be reduced so

that I no longer see it. It is visible with the naked eye. This has happened

with most of his casts and it comes and goes. In his earlier casts it used to

make me feel really good like we were getting some significant improvement as

the window in the back is supposed to allow for this sort of correction to my

understanding. But then suddenly the correction will be gone like his spine has

" popped " back to a 50 degree curve with rotation. This is the first cast that I

have been able to run my hands gently along the muscles beside his spine so well

because the window is cut so close to this part of his spine. The funny part is

that this " popping " from one curvature to the other isn't always the same

either. Sometimes it will suddenly move to almost perfectly straight and other

times it will move to about half the in cast curve, which is about 50 degrees

currently, and always the rotation will improve too, usually so that it seems to

completely resolve but sometimes so that it is just very slight. And the bowing

up and sideways twisting of his ribs through the window in the back will

disappear at the same time. I know this is because the joints between his ribs

and vertebra are acting like a hinge when they move. All this is visible just

by looking at him and I can verify it by gently touching his back, being careful

to avoid his spine. And I can watch it go from improved to worse again in an

instant, although I have never seen it go from it's original 50 degrees with

rotation to better. I have wondered if this happens while he sleeps or

something. It is quite disturbing to me because he'll be climbing on me with

his beautiful back visible through the window in the back and looking oh so good

and then he'll bend or move in some way and instantly the curve will worsen and

stay that way for ways, with the rotation being very obvious and the whole thing

looking very wrong through the window. I know that the parts that I can't see

look right messed up but I keep wondering why his spine does this high curve and

rotation/ low curve and rotation thing over and over again. Over the last few

casts he has been spending more and more time with his spine having the lower

curve and rotation so having to take him out of cast for 3 to five days is

really distressing me even though I know he needs it and I know the time will

just pass and suddenly my son will be back in my arms in cast 10 but I sure do

wish I had a good game plan other than cut cast off and enjoy the few days. It

all feels so crucial like if I could just help him in some way he may have far

less scoliosis to contend with for the rest of his life.

Shauna Leamy

mother of Kelsey, Kieran and

>

> oh you have been through so much! I'm sorry. Its ok to get out a long

> email...I think it helps relieve anxiety sometimes. I do not have any

> advice for you, I'm sorry. Although Levi did get a small sore on his

> small of his back this last time & they are doing the felt trick on his

> cast too. We also go to SLC but will get his 4th cast on May 4th. I

> wasn't totally understanding what you meant by " pop " ? Levi's shoulders &

> back area pop sometimes too. (even in cast) I asked Dr. D about it & got

> a few plausible causes but for Levi they were not as convinced as I am

> that it is scoli related. I believe for him the popping happens with a

> growth spurt. He popped in his second cast for a week and stopped. When

> the third cast was applied we did indeed get better results by at least 4

> degrees.

>

> amber

>

> > 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

> >

>

April 9, 2012

I have a neck injury from landing on my head while skiing, the kind that almost

ended my life, and my neck " pops " in and out like this. It has been 11 years

since the accident and every 4-6 months since I have seen significant

improvement in my condition. It has been a whole lot of work and I would

attribute neck traction/breaking up the scar tissue once the injury was

stabilized after the first couple of years and loads of neck exercise every

single day to my recovery. I suspect that given another three or four years I

will recover from the injury as well as I can but it has greatly impressed me

first of all that one can survive such an injury, secondly, that one can recover

from such an injury, and thirdly, that it can take well over a decade to

recover. I am just now in the last few months able to keep my neck straight

without C4 bulging grotesquely out of joint. I've even had swelling that has

left me paralysed intermittently so that even my breathing was controlled by my

brain and not me. It's been about 10 years since this last happened to me.

I've had the thyroid problems that come with neck injuries and all through this,

all through everything, I recovered to have kids and eventually now my neck is

probably very NORMAL for a woman of my age. No kidding. But it was a lot of

hard work every day, and still is and will be for the rest of my life. And I

don't mind in the least. Neck exercises seem like the kind of thing everything

should do.

My mother as a child had rickets very badly and the orthopedic surgeons decided

that they had to break both of her legs in several places reset them and let

them heal so that she could have a normal life. She was about 10 years old at

the time. She decided to try exercise. By the time she was assessed for

surgery (she says 6 months after) but I think it was probably 2 years and she

forgot, her rickets had improved so much that they could not tell that she had

rickets in her legs. She had symptoms related to having rickets return to her

in her midlife, but still, she never needed to have her legs broken etc. I am

sure there are other examples of inspiration that I have so far as orthopedic

conditions corrected when the prognosis was dire, and I am not expecting my son

to remain completely symptom free forever, but I do wish I could come up with

SOMETHING like my mother did, or even myself. It took a lot of searching and a

lot of consulting with professional after professional before I found the help I

needed to fix my neck. I have never had neck surgery and it was not me who came

up with my own treatment, I had a professional help me.

Shauna Leamy

mother of Kelsey, Kieran and

> >

> > oh you have been through so much! I'm sorry. Its ok to get out a long

> > email...I think it helps relieve anxiety sometimes. I do not have any

> > advice for you, I'm sorry. Although Levi did get a small sore on his

> > small of his back this last time & they are doing the felt trick on his

> > cast too. We also go to SLC but will get his 4th cast on May 4th. I

> > wasn't totally understanding what you meant by " pop " ? Levi's shoulders &

> > back area pop sometimes too. (even in cast) I asked Dr. D about it & got

> > a few plausible causes but for Levi they were not as convinced as I am

> > that it is scoli related. I believe for him the popping happens with a

> > growth spurt. He popped in his second cast for a week and stopped. When

> > the third cast was applied we did indeed get better results by at least 4

> > degrees.

> >

> > amber

> >

> > > 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

> > >

> >

>

April 10, 2012

Hi Shauna,

We tried to cast Liv at age 5 with no anesthesia and she would NOT have

it. It scared her horribly and we had to stop. Unfortunately, I am

unaware of anything that you could do pro actively to hold progression

while out of cast for 4 days. May be hanging from monkey bars and

swimming? Just to stay flexible? I dont think you'll loose much

ground..Just try and enjoy squishy time and hugs..

Hang in there momma.

HRH