Re: Turkey with a side of ANXIETY

[Guest guest]

My son is almost 4. When he was 21/2 it was a similar situation. He has stood

independantly for his last 3 xrays only holding our hand... We posed for a Xray

picture:) this in itself was a small miracle. He's okay I. The doc until they

try to touch him. He's okay talking to them (sometimes). He tolerates being in

the exam room. Then we have to physically hold hi

down. He's gotten better but it still isn't pretty. He hasn't been casted yet

but had a shunt placement around 2 and lotsa experience with docs. We always

tell him what is going to happen and that it won't hurt. We role play. He is

older now so can reason a bit better. We also push him out of his comfort zone

so he overcomes the fears. It's been a ridiculous set of hurdles to overcome let

me tell yah.. But there's hope. He didn't like anyone for a long time. If you

spoke to him as an unfamiliar person he would freak out and sometimes still

does. I think Cole will slowly improve too. Prod him out of his comfort zone,

maybe buy a doctor kit, check out a book about xrays, rent curious goes

to the doctor... And be patient:)

Tame

Sent from my iPhone

On Nov 27, 2010, at 7:07 AM, " genericallyloud " <jennifer.leggett@...>

wrote:

I know this is probably a hard post for all the new parents to read and I

apologize for that. Casting is still the best option and I can not imagine what

i would be dealing right now had we opted for the surgery route.

My son Cole is 2,5, he will be 3 January 3rd. We started casting at 15 (I

think) months. Did 5 casts over 10 months and are now 7-8 months into a brace.

HE has 1 very bad cast sore in his last cast, but other wise things could not

have gone any smoother throughout the process.

Cole is developing some serious anxiety and at times I would say it is very

close to PTSD like symptoms. Here is an example. We leave for my aunts house

for Thanksgiving and he IS SO SO excited. The last time we had been there had

been for an MRI from our Neurologist. We ran up to the door SO excited, but the

second we stepped inside he knew exactly where we were and he instantaneously

went CRAZY with FEAR. He was terrified, kicking, screaming, fighting, sobbing

to be let out of the house. It was beyond anything normal for the age. It took

several trips outside and over 30 minutes to get him to enter the house and be

OK. Of course I don't know exactly why he did it but I can imagine it was

because of the dr association.

Other freak out inducing things are any hotel (even the one for vacation we have

never been to), laying down on a doctors exam table (honestly being forced to

lay down at all) the worse is the x-ray machine. When it comes down to x-rays

we have to pin him down wit at LEAST 2 people and have had to put his legs in a

sac and strap him down along with people holding him because he is TERRIFIED.

THis is starting to impact him medical care because we can not get accurate

standing x-rays from him.

It is not just these things either. He is nervous about other things he used to

like for example slides. Although not a timid child he is pretty scared of

water, and things like sledding. He won't do them even with my husband and I.

He won't even sit on a sled not moving. He just wants to stay home. I think

because it is the ONLY place he knows is SAFE.

I know some is most likely heightened by the age. We have reached the phase

where we check the closet at night and he doesn't like me leaving him with a

sitter which are all so NORMAL.

It is tough to see him so scared. I have been thinking about taking him to a

play therapist and am going to talk to his doctor in a month when we go for his

well-kid check up. I am a VERY high anxiety person and don't want him to feel

that way.

Something that drives me SO SO nuts is when people say well he won't remember

any of this. And I'm sorry (I don't want to freak out parents but...) I am most

of my way through a masters in clinical social work and I don't buy that for a

second. I think that because he is so little he was coded these things in a

non-verbal way that he doesn't understand and can not verbally retrieve for to

process through with me. I think what is left is a more " primal " terror of some

of these things with no way to let it out and work through. I don't think even

at a very simple level that he understands or remembers WHY that house was

scary. If he doesn't remember like an older child or adult then how can I go

back and work through with him why this time is different and help him

understand that it is ok. HE is too young to CONSCIOUSLY remember his fear and

why is was scared but I am afraid that these associations will keep popping up

like they did on Thanksgiving.

Anyways. Thanksgiving was an intense reminder that THIS does effect our kids

emotionally at some level even when, like Cole, they often put on a very brave

face through the process.

Jenn

Mommy to Max, 4 months and Cole, 3 in January, 1st brace from Rochester. 0

degrees laying down after 10 months in 5 casts.

------------------------------------

[Guest guest]

Great post, Jenn.

Sorry, Cole is having anxiety. I know that must have been hard for you

and Russ. ET is super challenging on kiddos and parents. Especially, if

the kiddos are a bit older (not infants). My daughter Liv experienced

anxiety too. Our childrens scoli stories are ~so~ different, but our

kiddos sound like they have much in common when it comes to medical

anxiety. Liv was also horrified of xray machines, hospitals, docs, nurses,

hotels, the airport and airplanes, by age 3....Basically, anything that

was associated with our trips to SLC made her agitated & scared and it

became obvious that she was horrified and knew she would be back in

hospital to get poked and prodded & experience pain again. She refused at

age 2 to even get near an exam table and her doc would have to come up

with creative ways to accomplish a thorough exam. X rays finally got

better at age 3.5 or 4.

Liv refused slides until age 7. She would have also refused water (pool)

but I put a huge one up in the backyard on purpose.... And after staring

at her cousins having fun all day w/ out her, she gathered the courage to

try swimming. We had to take it very slow though. It was not easy and it

took many tries and tears. Now, she swims. She will also go sledding now,

but wouldnt touch it at 3. She would go near nothing that had the

potential to throw off her balance.

I also sought out play therapy at the local Childrens Hospital & thought

it would help her to not internalize....But, after after 2 yrs of this (1

session per week) she finally said that she didnt want to go anymore.

That was fine as I was paying $100 per session and it didnt seem to ease

her anxiety at hospital visits. (could have just been the therapist) I

think in her case, she just grew up and realized that this was her life

and surrendered to it (just a bit).

I agree that its his age. He is growing up and I think its natural that

he is realizing what scares him. Its not easy and no child should ever be

scared or have anxiety, but it happens. Im no shrink obviously but I

think it may be a good thing that he shares with you that he is petrified

and is able to get it all out. This may help him not to internalize too

much of this medical stuff. (??)

The good thing is, he will probably be done soon, and it will be just a

memory. I am in no way minimizing this as these are Coles formative

years, but I have no doubt that he will get through it.

Yesterday, Liv refused to walk up my moms front steps because there were a

few bugs there enjoying he sun. Not spiders, just black and red little

bugs. She flat our refused to walk up the stairs and is a true

arachnaphobe (sp?). Reason being, once a moth got up the back of her cast

when she was about 2.5 yrs old. Long story short, it was an extremely

traumatic event and has effected her til this day. Im now seeking out

some behavior modification therapy or bio feedback? As she must get

through this. Any ideas anyone?

I think all kiddos (and their parents) will have anxiety over having casts

and we should keep this dialogue going.

Love,

HRH

> I know this is probably a hard post for all the new parents to read and I

> apologize for that. Casting is still the best option and I can not

> imagine what i would be dealing right now had we opted for the surgery

> route.

>

> My son Cole is 2,5, he will be 3 January 3rd. We started casting at 15 (I

> think) months. Did 5 casts over 10 months and are now 7-8 months into a

> brace. HE has 1 very bad cast sore in his last cast, but other wise

> things could not have gone any smoother throughout the process.

>

> Cole is developing some serious anxiety and at times I would say it is

> very close to PTSD like symptoms. Here is an example. We leave for my

> aunts house for Thanksgiving and he IS SO SO excited. The last time we

> had been there had been for an MRI from our Neurologist. We ran up to the

> door SO excited, but the second we stepped inside he knew exactly where we

> were and he instantaneously went CRAZY with FEAR. He was terrified,

> kicking, screaming, fighting, sobbing to be let out of the house. It was

> beyond anything normal for the age. It took several trips outside and

> over 30 minutes to get him to enter the house and be OK. Of course I

> don't know exactly why he did it but I can imagine it was because of the

> dr association.

>

> Other freak out inducing things are any hotel (even the one for vacation

> we have never been to), laying down on a doctors exam table (honestly

> being forced to lay down at all) the worse is the x-ray machine. When it

> comes down to x-rays we have to pin him down wit at LEAST 2 people and

> have had to put his legs in a sac and strap him down along with people

> holding him because he is TERRIFIED. THis is starting to impact him

> medical care because we can not get accurate standing x-rays from him.

>

> It is not just these things either. He is nervous about other things he

> used to like for example slides. Although not a timid child he is pretty

> scared of water, and things like sledding. He won't do them even with my

> husband and I. He won't even sit on a sled not moving. He just wants to

> stay home. I think because it is the ONLY place he knows is SAFE.

>

> I know some is most likely heightened by the age. We have reached the

> phase where we check the closet at night and he doesn't like me leaving

> him with a sitter which are all so NORMAL.

>

> It is tough to see him so scared. I have been thinking about taking him

> to a play therapist and am going to talk to his doctor in a month when we

> go for his well-kid check up. I am a VERY high anxiety person and don't

> want him to feel that way.

>

> Something that drives me SO SO nuts is when people say well he won't

> remember any of this. And I'm sorry (I don't want to freak out parents

> but...) I am most of my way through a masters in clinical social work and

> I don't buy that for a second. I think that because he is so little he

> was coded these things in a non-verbal way that he doesn't understand and

> can not verbally retrieve for to process through with me. I think what is

> left is a more " primal " terror of some of these things with no way to let

> it out and work through. I don't think even at a very simple level that

> he understands or remembers WHY that house was scary. If he doesn't

> remember like an older child or adult then how can I go back and work

> through with him why this time is different and help him understand that

> it is ok. HE is too young to CONSCIOUSLY remember his fear and why is was

> scared but I am afraid that these associations will keep popping up like

> they did on Thanksgiving.

>

> Anyways. Thanksgiving was an intense reminder that THIS does effect our

> kids emotionally at some level even when, like Cole, they often put on a

> very brave face through the process.

>

> Jenn

> Mommy to Max, 4 months and Cole, 3 in January, 1st brace from Rochester.

> 0 degrees laying down after 10 months in 5 casts.

>

>

[Guest guest]

Ok. You guys are really scaring me. I don't want Shane to go through what you guys are describing. Nor do I. He is 3 now and we don't even have the date for the 1st cast yet. After reading the posts in this thread, I just might chicken out. I appreciate the honesty so I know what to be prepared for, but I'm very concerned and scared about this.SuzanneSent from my iPhoneOn Nov 27, 2010, at 11:09 AM, heather@... wrote:

Great post, Jenn.

Sorry, Cole is having anxiety. I know that must have been hard for you

and Russ. ET is super challenging on kiddos and parents. Especially, if

the kiddos are a bit older (not infants). My daughter Liv experienced

anxiety too. Our childrens scoli stories are ~so~ different, but our

kiddos sound like they have much in common when it comes to medical

anxiety. Liv was also horrified of xray machines, hospitals, docs, nurses,

hotels, the airport and airplanes, by age 3....Basically, anything that

was associated with our trips to SLC made her agitated & scared and it

became obvious that she was horrified and knew she would be back in

hospital to get poked and prodded & experience pain again. She refused at

age 2 to even get near an exam table and her doc would have to come up

with creative ways to accomplish a thorough exam. X rays finally got

better at age 3.5 or 4.

Liv refused slides until age 7. She would have also refused water (pool)

but I put a huge one up in the backyard on purpose.... And after staring

at her cousins having fun all day w/ out her, she gathered the courage to

try swimming. We had to take it very slow though. It was not easy and it

took many tries and tears. Now, she swims. She will also go sledding now,

but wouldnt touch it at 3. She would go near nothing that had the

potential to throw off her balance.

I also sought out play therapy at the local Childrens Hospital & thought

it would help her to not internalize....But, after after 2 yrs of this (1

session per week) she finally said that she didnt want to go anymore.

That was fine as I was paying $100 per session and it didnt seem to ease

her anxiety at hospital visits. (could have just been the therapist) I

think in her case, she just grew up and realized that this was her life

and surrendered to it (just a bit).

I agree that its his age. He is growing up and I think its natural that

he is realizing what scares him. Its not easy and no child should ever be

scared or have anxiety, but it happens. Im no shrink obviously but I

think it may be a good thing that he shares with you that he is petrified

and is able to get it all out. This may help him not to internalize too

much of this medical stuff. (??)

The good thing is, he will probably be done soon, and it will be just a

memory. I am in no way minimizing this as these are Coles formative

years, but I have no doubt that he will get through it.

Yesterday, Liv refused to walk up my moms front steps because there were a

few bugs there enjoying he sun. Not spiders, just black and red little

bugs. She flat our refused to walk up the stairs and is a true

arachnaphobe (sp?). Reason being, once a moth got up the back of her cast

when she was about 2.5 yrs old. Long story short, it was an extremely

traumatic event and has effected her til this day. Im now seeking out

some behavior modification therapy or bio feedback? As she must get

through this. Any ideas anyone?

I think all kiddos (and their parents) will have anxiety over having casts

and we should keep this dialogue going.

Love,

HRH

> I know this is probably a hard post for all the new parents to read and I

> apologize for that. Casting is still the best option and I can not

> imagine what i would be dealing right now had we opted for the surgery

> route.

>

> My son Cole is 2,5, he will be 3 January 3rd. We started casting at 15 (I

> think) months. Did 5 casts over 10 months and are now 7-8 months into a

> brace. HE has 1 very bad cast sore in his last cast, but other wise

> things could not have gone any smoother throughout the process.

>

> Cole is developing some serious anxiety and at times I would say it is

> very close to PTSD like symptoms. Here is an example. We leave for my

> aunts house for Thanksgiving and he IS SO SO excited. The last time we

> had been there had been for an MRI from our Neurologist. We ran up to the

> door SO excited, but the second we stepped inside he knew exactly where we

> were and he instantaneously went CRAZY with FEAR. He was terrified,

> kicking, screaming, fighting, sobbing to be let out of the house. It was

> beyond anything normal for the age. It took several trips outside and

> over 30 minutes to get him to enter the house and be OK. Of course I

> don't know exactly why he did it but I can imagine it was because of the

> dr association.

>

> Other freak out inducing things are any hotel (even the one for vacation

> we have never been to), laying down on a doctors exam table (honestly

> being forced to lay down at all) the worse is the x-ray machine. When it

> comes down to x-rays we have to pin him down wit at LEAST 2 people and

> have had to put his legs in a sac and strap him down along with people

> holding him because he is TERRIFIED. THis is starting to impact him

> medical care because we can not get accurate standing x-rays from him.

>

> It is not just these things either. He is nervous about other things he

> used to like for example slides. Although not a timid child he is pretty

> scared of water, and things like sledding. He won't do them even with my

> husband and I. He won't even sit on a sled not moving. He just wants to

> stay home. I think because it is the ONLY place he knows is SAFE.

>

> I know some is most likely heightened by the age. We have reached the

> phase where we check the closet at night and he doesn't like me leaving

> him with a sitter which are all so NORMAL.

>

> It is tough to see him so scared. I have been thinking about taking him

> to a play therapist and am going to talk to his doctor in a month when we

> go for his well-kid check up. I am a VERY high anxiety person and don't

> want him to feel that way.

>

> Something that drives me SO SO nuts is when people say well he won't

> remember any of this. And I'm sorry (I don't want to freak out parents

> but...) I am most of my way through a masters in clinical social work and

> I don't buy that for a second. I think that because he is so little he

> was coded these things in a non-verbal way that he doesn't understand and

> can not verbally retrieve for to process through with me. I think what is

> left is a more "primal" terror of some of these things with no way to let

> it out and work through. I don't think even at a very simple level that

> he understands or remembers WHY that house was scary. If he doesn't

> remember like an older child or adult then how can I go back and work

> through with him why this time is different and help him understand that

> it is ok. HE is too young to CONSCIOUSLY remember his fear and why is was

> scared but I am afraid that these associations will keep popping up like

> they did on Thanksgiving.

>

> Anyways. Thanksgiving was an intense reminder that THIS does effect our

> kids emotionally at some level even when, like Cole, they often put on a

> very brave face through the process.

>

> Jenn

> Mommy to Max, 4 months and Cole, 3 in January, 1st brace from Rochester.

> 0 degrees laying down after 10 months in 5 casts.

>

>

[Guest guest]

I'm so sorry to scare you. It would have scarred me in the beginning too.

Despite the anxiety he has, I do not doubt out decision to pursue casting. It

WAS the RIGHT choice. If we didn't do it he would be looking at a serious to

painful surgeries and possible life long chronic pain which would cause him more

anxiety and distress than he is currently feeling.

I don't want his like to sound gloomy. He IS such a HAPPY boy. Smart, and

creative and imaginative and loving. He knows he is loved and feels safe with

us. He goes to the park and rides a trike with his friends. He sleeps in his

own room and bed loves splashing in the tub. Was the last kid in the

neighborhood out trick-or-treating. He IS HAPPY. We just have to find the best

way to work our little ones through the scary parts they are not ready to

understand.

Know you guys can do this. Most of it has been a WONDERFUL experience. Please

contact me directly if you want. I promise it isn't horrible.

Jenn

Mommy to Cole

>

> I know this is probably a hard post for all the new parents to read and I

apologize for that. Casting is still the best option and I can not imagine what

i would be dealing right now had we opted for the surgery route.

>

> My son Cole is 2,5, he will be 3 January 3rd. We started casting at 15 (I

think) months. Did 5 casts over 10 months and are now 7-8 months into a brace.

HE has 1 very bad cast sore in his last cast, but other wise things could not

have gone any smoother throughout the process.

>

> Cole is developing some serious anxiety and at times I would say it is very

close to PTSD like symptoms. Here is an example. We leave for my aunts house

for Thanksgiving and he IS SO SO excited. The last time we had been there had

been for an MRI from our Neurologist. We ran up to the door SO excited, but the

second we stepped inside he knew exactly where we were and he instantaneously

went CRAZY with FEAR. He was terrified, kicking, screaming, fighting, sobbing

to be let out of the house. It was beyond anything normal for the age. It took

several trips outside and over 30 minutes to get him to enter the house and be

OK. Of course I don't know exactly why he did it but I can imagine it was

because of the dr association.

>

> Other freak out inducing things are any hotel (even the one for vacation we

have never been to), laying down on a doctors exam table (honestly being forced

to lay down at all) the worse is the x-ray machine. When it comes down to

x-rays we have to pin him down wit at LEAST 2 people and have had to put his

legs in a sac and strap him down along with people holding him because he is

TERRIFIED. THis is starting to impact him medical care because we can not get

accurate standing x-rays from him.

>

> It is not just these things either. He is nervous about other things he used

to like for example slides. Although not a timid child he is pretty scared of

water, and things like sledding. He won't do them even with my husband and I.

He won't even sit on a sled not moving. He just wants to stay home. I think

because it is the ONLY place he knows is SAFE.

>

> I know some is most likely heightened by the age. We have reached the phase

where we check the closet at night and he doesn't like me leaving him with a

sitter which are all so NORMAL.

>

> It is tough to see him so scared. I have been thinking about taking him to a

play therapist and am going to talk to his doctor in a month when we go for his

well-kid check up. I am a VERY high anxiety person and don't want him to feel

that way.

>

> Something that drives me SO SO nuts is when people say well he won't remember

any of this. And I'm sorry (I don't want to freak out parents but...) I am most

of my way through a masters in clinical social work and I don't buy that for a

second. I think that because he is so little he was coded these things in a

non-verbal way that he doesn't understand and can not verbally retrieve for to

process through with me. I think what is left is a more " primal " terror of some

of these things with no way to let it out and work through. I don't think even

at a very simple level that he understands or remembers WHY that house was

scary. If he doesn't remember like an older child or adult then how can I go

back and work through with him why this time is different and help him

understand that it is ok. HE is too young to CONSCIOUSLY remember his fear and

why is was scared but I am afraid that these associations will keep popping up

like they did on Thanksgiving.

>

> Anyways. Thanksgiving was an intense reminder that THIS does effect our kids

emotionally at some level even when, like Cole, they often put on a very brave

face through the process.

>

> Jenn

> Mommy to Max, 4 months and Cole, 3 in January, 1st brace from Rochester. 0

degrees laying down after 10 months in 5 casts.

>

[Guest guest]

ne,

Please dont chicken out. Im sure other mums will chime in to help ease

your worry. Jenn and I dont mean to scare, only to share our experiences

in hopes that they can help others going through it.

If my daughter had the ET opportunity, I wouldnt have missed it for the

world. I would have sold the house, the car, everything I own, and

perhaps even my soul..just jokin. ET is the Gold Standard for PIS and I

know from 1st hand experience (and you do too) that PIS treated late is

not superior care. ET w/ Mehtas EDF is superior and the Gold Standard.

The pros def. outweigh the cons.

Sorry, to scare you. Its really not that bad compared to the alternative.

HRH

> Ok. You guys are really scaring me. I don't want Shane to go through what

> you guys are describing. Nor do I. He is 3 now and we don't even have the

> date for the 1st cast yet. After reading the posts in this thread, I just

> might chicken out. I appreciate the honesty so I know what to be prepared

> for, but I'm very concerned and scared about this.

>

> Suzanne

> Sent from my iPhone

>

> On Nov 27, 2010, at 11:09 AM, heather@... wrote:

>

>> Great post, Jenn.

>> Sorry, Cole is having anxiety. I know that must have been hard for you

>> and Russ. ET is super challenging on kiddos and parents. Especially, if

>> the kiddos are a bit older (not infants). My daughter Liv experienced

>> anxiety too. Our childrens scoli stories are ~so~ different, but our

>> kiddos sound like they have much in common when it comes to medical

>> anxiety. Liv was also horrified of xray machines, hospitals, docs,

>> nurses,

>> hotels, the airport and airplanes, by age 3....Basically, anything that

>> was associated with our trips to SLC made her agitated & scared and it

>> became obvious that she was horrified and knew she would be back in

>> hospital to get poked and prodded & experience pain again. She refused

>> at

>> age 2 to even get near an exam table and her doc would have to come up

>> with creative ways to accomplish a thorough exam. X rays finally got

>> better at age 3.5 or 4.

>> Liv refused slides until age 7. She would have also refused water (pool)

>> but I put a huge one up in the backyard on purpose.... And after staring

>> at her cousins having fun all day w/ out her, she gathered the courage

>> to

>> try swimming. We had to take it very slow though. It was not easy and it

>> took many tries and tears. Now, she swims. She will also go sledding

>> now,

>> but wouldnt touch it at 3. She would go near nothing that had the

>> potential to throw off her balance.

>> I also sought out play therapy at the local Childrens Hospital & thought

>> it would help her to not internalize....But, after after 2 yrs of this

>> (1

>> session per week) she finally said that she didnt want to go anymore.

>> That was fine as I was paying $100 per session and it didnt seem to ease

>> her anxiety at hospital visits. (could have just been the therapist) I

>> think in her case, she just grew up and realized that this was her life

>> and surrendered to it (just a bit).

>> I agree that its his age. He is growing up and I think its natural that

>> he is realizing what scares him. Its not easy and no child should ever

>> be

>> scared or have anxiety, but it happens. Im no shrink obviously but I

>> think it may be a good thing that he shares with you that he is

>> petrified

>> and is able to get it all out. This may help him not to internalize too

>> much of this medical stuff. (??)

>> The good thing is, he will probably be done soon, and it will be just a

>> memory. I am in no way minimizing this as these are Coles formative

>> years, but I have no doubt that he will get through it.

>> Yesterday, Liv refused to walk up my moms front steps because there were

>> a

>> few bugs there enjoying he sun. Not spiders, just black and red little

>> bugs. She flat our refused to walk up the stairs and is a true

>> arachnaphobe (sp?). Reason being, once a moth got up the back of her

>> cast

>> when she was about 2.5 yrs old. Long story short, it was an extremely

>> traumatic event and has effected her til this day. Im now seeking out

>> some behavior modification therapy or bio feedback? As she must get

>> through this. Any ideas anyone?

>> I think all kiddos (and their parents) will have anxiety over having

>> casts

>> and we should keep this dialogue going.

>> Love,

>> HRH

>>

>> > I know this is probably a hard post for all the new parents to read

>> and I

>> > apologize for that. Casting is still the best option and I can not

>> > imagine what i would be dealing right now had we opted for the surgery

>> > route.

>> >

>> > My son Cole is 2,5, he will be 3 January 3rd. We started casting at 15

>> (I

>> > think) months. Did 5 casts over 10 months and are now 7-8 months into

>> a

>> > brace. HE has 1 very bad cast sore in his last cast, but other wise

>> > things could not have gone any smoother throughout the process.

>> >

>> > Cole is developing some serious anxiety and at times I would say it is

>> > very close to PTSD like symptoms. Here is an example. We leave for my

>> > aunts house for Thanksgiving and he IS SO SO excited. The last time we

>> > had been there had been for an MRI from our Neurologist. We ran up to

>> the

>> > door SO excited, but the second we stepped inside he knew exactly

>> where we

>> > were and he instantaneously went CRAZY with FEAR. He was terrified,

>> > kicking, screaming, fighting, sobbing to be let out of the house. It

>> was

>> > beyond anything normal for the age. It took several trips outside and

>> > over 30 minutes to get him to enter the house and be OK. Of course I

>> > don't know exactly why he did it but I can imagine it was because of

>> the

>> > dr association.

>> >

>> > Other freak out inducing things are any hotel (even the one for

>> vacation

>> > we have never been to), laying down on a doctors exam table (honestly

>> > being forced to lay down at all) the worse is the x-ray machine. When

>> it

>> > comes down to x-rays we have to pin him down wit at LEAST 2 people and

>> > have had to put his legs in a sac and strap him down along with people

>> > holding him because he is TERRIFIED. THis is starting to impact him

>> > medical care because we can not get accurate standing x-rays from him.

>> >

>> > It is not just these things either. He is nervous about other things

>> he

>> > used to like for example slides. Although not a timid child he is

>> pretty

>> > scared of water, and things like sledding. He won't do them even with

>> my

>> > husband and I. He won't even sit on a sled not moving. He just wants

>> to

>> > stay home. I think because it is the ONLY place he knows is SAFE.

>> >

>> > I know some is most likely heightened by the age. We have reached the

>> > phase where we check the closet at night and he doesn't like me

>> leaving

>> > him with a sitter which are all so NORMAL.

>> >

>> > It is tough to see him so scared. I have been thinking about taking

>> him

>> > to a play therapist and am going to talk to his doctor in a month when

>> we

>> > go for his well-kid check up. I am a VERY high anxiety person and

>> don't

>> > want him to feel that way.

>> >

>> > Something that drives me SO SO nuts is when people say well he won't

>> > remember any of this. And I'm sorry (I don't want to freak out parents

>> > but...) I am most of my way through a masters in clinical social work

>> and

>> > I don't buy that for a second. I think that because he is so little he

>> > was coded these things in a non-verbal way that he doesn't understand

>> and

>> > can not verbally retrieve for to process through with me. I think what

>> is

>> > left is a more " primal " terror of some of these things with no way to

>> let

>> > it out and work through. I don't think even at a very simple level

>> that

>> > he understands or remembers WHY that house was scary. If he doesn't

>> > remember like an older child or adult then how can I go back and work

>> > through with him why this time is different and help him understand

>> that

>> > it is ok. HE is too young to CONSCIOUSLY remember his fear and why is

>> was

>> > scared but I am afraid that these associations will keep popping up

>> like

>> > they did on Thanksgiving.

>> >

>> > Anyways. Thanksgiving was an intense reminder that THIS does effect

>> our

>> > kids emotionally at some level even when, like Cole, they often put on

>> a

>> > very brave face through the process.

>> >

>> > Jenn

>> > Mommy to Max, 4 months and Cole, 3 in January, 1st brace from

>> Rochester.

>> > 0 degrees laying down after 10 months in 5 casts.

>> >

>> >

>>

>>

>

[Guest guest]

I think it depends on the child's personality as well as the parents and the

specific circumstances. was 3 when she had her first cast and she has

never had any problems or fears. I showed her pictures of other casted children

and we just had the attitude of " go with the flow " ...like all of this is just

normal, no big deal stuff. She just followed suit. She's 4 now and has a " summer

brace " still; I can't WAIT to get her into another cast! The brace was nice for

the summer so she could go swimming, but other than that, I by far prefer the

casts.

~, 's mom

[Guest guest]

If you chicken out you will regret it. Do you like going to the doctor or undergoing any kind of medical experiences? I don't. Kids are no different they just tend to wear emotions on their sleeves! If your child is 3 they probably will emotionally deal better. Casts or braces have to be better than sugeries any day of the week. I can tell you hands down my childs surgery was by far the worst thing we have been through.... And that was a simple shunt placement. It was actually the infection and long hospital stay that was hard. While we were in the hospital we met some VERY sick kids with skin diseases and one 9 year old that had ironically enough rods /spinal fusion. Ironic because we didn't know our son even had scoli yet. Kids are resilant and adapt. They are eternally happy yet go through phases of fear which is normal. Being a mom of a child with medical issues requires wearing a brave face, being informed about a

variety of issues. I threw my boquet of pansies out long ago .... No time to be afraid when there is so much on the line. Sent from my iPhoneOn Nov 27, 2010, at 12:12 PM, Suzanne Rulka <suzy3333@...> wrote:

Ok. You guys are really scaring me. I don't want Shane to go through what you guys are describing. Nor do I. He is 3 now and we don't even have the date for the 1st cast yet. After reading the posts in this thread, I just might chicken out. I appreciate the honesty so I know what to be prepared for, but I'm very concerned and scared about this.SuzanneSent from my iPhoneOn Nov 27, 2010, at 11:09 AM, heather@... wrote:

Great post, Jenn.

Sorry, Cole is having anxiety. I know that must have been hard for you

and Russ. ET is super challenging on kiddos and parents. Especially, if

the kiddos are a bit older (not infants). My daughter Liv experienced

anxiety too. Our childrens scoli stories are ~so~ different, but our

kiddos sound like they have much in common when it comes to medical

anxiety. Liv was also horrified of xray machines, hospitals, docs, nurses,

hotels, the airport and airplanes, by age 3....Basically, anything that

was associated with our trips to SLC made her agitated & scared and it

became obvious that she was horrified and knew she would be back in

hospital to get poked and prodded & experience pain again. She refused at

age 2 to even get near an exam table and her doc would have to come up

with creative ways to accomplish a thorough exam. X rays finally got

better at age 3.5 or 4.

Liv refused slides until age 7. She would have also refused water (pool)

but I put a huge one up in the backyard on purpose.... And after staring

at her cousins having fun all day w/ out her, she gathered the courage to

try swimming. We had to take it very slow though. It was not easy and it

took many tries and tears. Now, she swims. She will also go sledding now,

but wouldnt touch it at 3. She would go near nothing that had the

potential to throw off her balance.

I also sought out play therapy at the local Childrens Hospital & thought

it would help her to not internalize....But, after after 2 yrs of this (1

session per week) she finally said that she didnt want to go anymore.

That was fine as I was paying $100 per session and it didnt seem to ease

her anxiety at hospital visits. (could have just been the therapist) I

think in her case, she just grew up and realized that this was her life

and surrendered to it (just a bit).

I agree that its his age. He is growing up and I think its natural that

he is realizing what scares him. Its not easy and no child should ever be

scared or have anxiety, but it happens. Im no shrink obviously but I

think it may be a good thing that he shares with you that he is petrified

and is able to get it all out. This may help him not to internalize too

much of this medical stuff. (??)

The good thing is, he will probably be done soon, and it will be just a

memory. I am in no way minimizing this as these are Coles formative

years, but I have no doubt that he will get through it.

Yesterday, Liv refused to walk up my moms front steps because there were a

few bugs there enjoying he sun. Not spiders, just black and red little

bugs. She flat our refused to walk up the stairs and is a true

arachnaphobe (sp?). Reason being, once a moth got up the back of her cast

when she was about 2.5 yrs old. Long story short, it was an extremely

traumatic event and has effected her til this day. Im now seeking out

some behavior modification therapy or bio feedback? As she must get

through this. Any ideas anyone?

I think all kiddos (and their parents) will have anxiety over having casts

and we should keep this dialogue going.

Love,

HRH

> I know this is probably a hard post for all the new parents to read and I

> apologize for that. Casting is still the best option and I can not

> imagine what i would be dealing right now had we opted for the surgery

> route.

>

> My son Cole is 2,5, he will be 3 January 3rd. We started casting at 15 (I

> think) months. Did 5 casts over 10 months and are now 7-8 months into a

> brace. HE has 1 very bad cast sore in his last cast, but other wise

> things could not have gone any smoother throughout the process.

>

> Cole is developing some serious anxiety and at times I would say it is

> very close to PTSD like symptoms. Here is an example. We leave for my

> aunts house for Thanksgiving and he IS SO SO excited. The last time we

> had been there had been for an MRI from our Neurologist. We ran up to the

> door SO excited, but the second we stepped inside he knew exactly where we

> were and he instantaneously went CRAZY with FEAR. He was terrified,

> kicking, screaming, fighting, sobbing to be let out of the house. It was

> beyond anything normal for the age. It took several trips outside and

> over 30 minutes to get him to enter the house and be OK. Of course I

> don't know exactly why he did it but I can imagine it was because of the

> dr association.

>

> Other freak out inducing things are any hotel (even the one for vacation

> we have never been to), laying down on a doctors exam table (honestly

> being forced to lay down at all) the worse is the x-ray machine. When it

> comes down to x-rays we have to pin him down wit at LEAST 2 people and

> have had to put his legs in a sac and strap him down along with people

> holding him because he is TERRIFIED. THis is starting to impact him

> medical care because we can not get accurate standing x-rays from him.

>

> It is not just these things either. He is nervous about other things he

> used to like for example slides. Although not a timid child he is pretty

> scared of water, and things like sledding. He won't do them even with my

> husband and I. He won't even sit on a sled not moving. He just wants to

> stay home. I think because it is the ONLY place he knows is SAFE.

>

> I know some is most likely heightened by the age. We have reached the

> phase where we check the closet at night and he doesn't like me leaving

> him with a sitter which are all so NORMAL.

>

> It is tough to see him so scared. I have been thinking about taking him

> to a play therapist and am going to talk to his doctor in a month when we

> go for his well-kid check up. I am a VERY high anxiety person and don't

> want him to feel that way.

>

> Something that drives me SO SO nuts is when people say well he won't

> remember any of this. And I'm sorry (I don't want to freak out parents

> but...) I am most of my way through a masters in clinical social work and

> I don't buy that for a second. I think that because he is so little he

> was coded these things in a non-verbal way that he doesn't understand and

> can not verbally retrieve for to process through with me. I think what is

> left is a more "primal" terror of some of these things with no way to let

> it out and work through. I don't think even at a very simple level that

> he understands or remembers WHY that house was scary. If he doesn't

> remember like an older child or adult then how can I go back and work

> through with him why this time is different and help him understand that

> it is ok. HE is too young to CONSCIOUSLY remember his fear and why is was

> scared but I am afraid that these associations will keep popping up like

> they did on Thanksgiving.

>

> Anyways. Thanksgiving was an intense reminder that THIS does effect our

> kids emotionally at some level even when, like Cole, they often put on a

> very brave face through the process.

>

> Jenn

> Mommy to Max, 4 months and Cole, 3 in January, 1st brace from Rochester.

> 0 degrees laying down after 10 months in 5 casts.

>

>

[Guest guest]

Grace was the same way with her first cast, wore it like a trooper! She had worn 4 braces prior tho. Prior to her first brace, the orthotist said, you must stay firm. You must never let her see that it bothers you to see her wear it or else she'll not want to wear it. I was pleasantly surprised when she never fussed about wearing her first brace. She wore it the whole night the first night and never looked back. These kids are amazing and can endure so much.

Grace did go through a "fear" stage throughout the last 2 yrs. But now she looks up at me after her xrays and proudly says, "Momma, I not cry no more!" And I praise her up one side and down the other. This isn't to say things don't still bother her, but we talk about them. I explain everything I know will happen before each appointment for any of her issues. Once we get there, sometimes things will change, and I stop, hold her close and tell her what is going to happen next. She does better knowing than having it sprung on her. The 2 week post-op appt last year was the worst. She was physically shaking when we walked back into Shriner's. We took it slow, but ultimately we did have to hold her down to remove the steri-strips and clean up her back. It was hard, but you know the saying "never let them see you sweat". Its true. They

take their cues from us. The first cast was tough too because you are an "in-patient" on the same hospital floor as the actual surgery patients, but I just kept reassuring her we would go home and focused on the fun things like getting to take a bath and picking a special color for her cast. We'd theme the casts too, the green was her B-bell cast (how she said Tinkerbell at the time), then pink was princess, purple she said was her mermaid and blue was Cinderella. It worked for us.

And take one day at a time!

Jane

[Guest guest]

Suzanne,

I'm sorry I don't know all the details of Shane's situation. I think these

realizations are definately scary. And if I were a new parent I would be

terrified by the thought. The reality is, though, that if he has a progressive

curve he will need treatment for it. Either now or later. The scoliosis won't go

away on it's own if it is progressive scoliosis. Casting hold the opportunity to

CORRECT the curve. If this happens for Shane, he hopefully won't have to have

surgery later.

I agree with the previous post. I think it all depens on the child, the parents

and the situation.

My daughter is 3. She had her first cast when she was 2.5.We have never had any

anxiety issues over doctors or hospitals. She had her first MRI when she was 5

months old, her first eye surgery when she was 19 months, regular visits to

Shriner's for her 'hug machine', and an incredibly long (day long - 6 hours)

appointment at Boston Children's Hospital with a neurologist and opthalmologist.

My point is, she's been to so many different doctors. Eye drops, blood draw, IV,

stuff. She's fine. Never balks at going and isn't exhibiting any fears or

anxiety related to her medical experience.

I think it all depends on the child. Perhaps we have been incredibly blessed. I

do know that I have been very careful to create an elaborate story for her. And

I always talk about the doctor before we get there. On the car ride to Chicago,

she sings and cheers about getting her new 'hug machine' and is SOOO excited

that there is an elevator in Chicago! (We stay at my husbands Aunt's in a high

rise). I also gave VERY specific instructions to my parents and in laws...under

no circumstances could they cry when they saw her in her cast for the first

time. We will all be strong and treat this like it's no big deal. We will not

talk about " HAVING " to go to the doctor - we " GET TO GET A BRAND NEW HUG

MACHNIE " .

Good luck! Ask lots of questions. I know in Chicago they are very good about

sedating them first before they ever start the IV. If Makenna hates anything

it's the IV So, she never knows it's going it.

Amy

>

> > Great post, Jenn.

> > Sorry, Cole is having anxiety. I know that must have been hard for you

> > and Russ. ET is super challenging on kiddos and parents. Especially, if

> > the kiddos are a bit older (not infants). My daughter Liv experienced

> > anxiety too. Our childrens scoli stories are ~so~ different, but our

> > kiddos sound like they have much in common when it comes to medical

> > anxiety. Liv was also horrified of xray machines, hospitals, docs, nurses,

> > hotels, the airport and airplanes, by age 3....Basically, anything that

> > was associated with our trips to SLC made her agitated & scared and it

> > became obvious that she was horrified and knew she would be back in

> > hospital to get poked and prodded & experience pain again. She refused at

> > age 2 to even get near an exam table and her doc would have to come up

> > with creative ways to accomplish a thorough exam. X rays finally got

> > better at age 3.5 or 4.

> > Liv refused slides until age 7. She would have also refused water (pool)

> > but I put a huge one up in the backyard on purpose.... And after staring

> > at her cousins having fun all day w/ out her, she gathered the courage to

> > try swimming. We had to take it very slow though. It was not easy and it

> > took many tries and tears. Now, she swims. She will also go sledding now,

> > but wouldnt touch it at 3. She would go near nothing that had the

> > potential to throw off her balance.

> > I also sought out play therapy at the local Childrens Hospital & thought

> > it would help her to not internalize....But, after after 2 yrs of this (1

> > session per week) she finally said that she didnt want to go anymore.

> > That was fine as I was paying $100 per session and it didnt seem to ease

> > her anxiety at hospital visits. (could have just been the therapist) I

> > think in her case, she just grew up and realized that this was her life

> > and surrendered to it (just a bit).

> > I agree that its his age. He is growing up and I think its natural that

> > he is realizing what scares him. Its not easy and no child should ever be

> > scared or have anxiety, but it happens. Im no shrink obviously but I

> > think it may be a good thing that he shares with you that he is petrified

> > and is able to get it all out. This may help him not to internalize too

> > much of this medical stuff. (??)

> > The good thing is, he will probably be done soon, and it will be just a

> > memory. I am in no way minimizing this as these are Coles formative

> > years, but I have no doubt that he will get through it.

> > Yesterday, Liv refused to walk up my moms front steps because there were a

> > few bugs there enjoying he sun. Not spiders, just black and red little

> > bugs. She flat our refused to walk up the stairs and is a true

> > arachnaphobe (sp?). Reason being, once a moth got up the back of her cast

> > when she was about 2.5 yrs old. Long story short, it was an extremely

> > traumatic event and has effected her til this day. Im now seeking out

> > some behavior modification therapy or bio feedback? As she must get

> > through this. Any ideas anyone?

> > I think all kiddos (and their parents) will have anxiety over having casts

> > and we should keep this dialogue going.

> > Love,

> > HRH

> >

> > > I know this is probably a hard post for all the new parents to read and I

> > > apologize for that. Casting is still the best option and I can not

> > > imagine what i would be dealing right now had we opted for the surgery

> > > route.

> > >

> > > My son Cole is 2,5, he will be 3 January 3rd. We started casting at 15 (I

> > > think) months. Did 5 casts over 10 months and are now 7-8 months into a

> > > brace. HE has 1 very bad cast sore in his last cast, but other wise

> > > things could not have gone any smoother throughout the process.

> > >

> > > Cole is developing some serious anxiety and at times I would say it is

> > > very close to PTSD like symptoms. Here is an example. We leave for my

> > > aunts house for Thanksgiving and he IS SO SO excited. The last time we

> > > had been there had been for an MRI from our Neurologist. We ran up to the

> > > door SO excited, but the second we stepped inside he knew exactly where we

> > > were and he instantaneously went CRAZY with FEAR. He was terrified,

> > > kicking, screaming, fighting, sobbing to be let out of the house. It was

> > > beyond anything normal for the age. It took several trips outside and

> > > over 30 minutes to get him to enter the house and be OK. Of course I

> > > don't know exactly why he did it but I can imagine it was because of the

> > > dr association.

> > >

> > > Other freak out inducing things are any hotel (even the one for vacation

> > > we have never been to), laying down on a doctors exam table (honestly

> > > being forced to lay down at all) the worse is the x-ray machine. When it

> > > comes down to x-rays we have to pin him down wit at LEAST 2 people and

> > > have had to put his legs in a sac and strap him down along with people

> > > holding him because he is TERRIFIED. THis is starting to impact him

> > > medical care because we can not get accurate standing x-rays from him.

> > >

> > > It is not just these things either. He is nervous about other things he

> > > used to like for example slides. Although not a timid child he is pretty

> > > scared of water, and things like sledding. He won't do them even with my

> > > husband and I. He won't even sit on a sled not moving. He just wants to

> > > stay home. I think because it is the ONLY place he knows is SAFE.

> > >

> > > I know some is most likely heightened by the age. We have reached the

> > > phase where we check the closet at night and he doesn't like me leaving

> > > him with a sitter which are all so NORMAL.

> > >

> > > It is tough to see him so scared. I have been thinking about taking him

> > > to a play therapist and am going to talk to his doctor in a month when we

> > > go for his well-kid check up. I am a VERY high anxiety person and don't

> > > want him to feel that way.

> > >

> > > Something that drives me SO SO nuts is when people say well he won't

> > > remember any of this. And I'm sorry (I don't want to freak out parents

> > > but...) I am most of my way through a masters in clinical social work and

> > > I don't buy that for a second. I think that because he is so little he

> > > was coded these things in a non-verbal way that he doesn't understand and

> > > can not verbally retrieve for to process through with me. I think what is

> > > left is a more " primal " terror of some of these things with no way to let

> > > it out and work through. I don't think even at a very simple level that

> > > he understands or remembers WHY that house was scary. If he doesn't

> > > remember like an older child or adult then how can I go back and work

> > > through with him why this time is different and help him understand that

> > > it is ok. HE is too young to CONSCIOUSLY remember his fear and why is was

> > > scared but I am afraid that these associations will keep popping up like

> > > they did on Thanksgiving.

> > >

> > > Anyways. Thanksgiving was an intense reminder that THIS does effect our

> > > kids emotionally at some level even when, like Cole, they often put on a

> > > very brave face through the process.

> > >

> > > Jenn

> > > Mommy to Max, 4 months and Cole, 3 in January, 1st brace from Rochester.

> > > 0 degrees laying down after 10 months in 5 casts.

> > >

> > >

> >

> >

>

[Guest guest]

I know what you mean ! The problem that my husband and I are having

right now with our daughter (age 15 months) is that she is afraid of diaper

changing tables inside stores. When I lay her down on one to change her, her

little mind thinks that she is getting another X-Ray or being put to sleep, or

being examined. She begins to scream out as if I am beating her to death. We

went to the mall yesterday with a few of my husband's siblings and my

sister-in-law and I had to both hold her while I changed her. I don't know how

to remedy this anxiety she has over changing tables. People keep waling in and

out of the restroom and looking at me as if I am killing my daughter. They

don't realize what is wrong with her. She screams so loud that people outside

the restroom can hear her. I feel so sorry for her. Yet, at the same time, I

know that I HAVE to change her or she would get a terrible rash or get very raw

while shopping. I am hoping that once her casting is completely finished and

treatment is no longer needed, that she will have no memory of the X-Rays, and

treatment. I hate to think of her being terrified of laying down on anything

for her whole childhood.

- , mom of Abby (15 months), 48 degrees down to 17 degrees in first cast

>

> I know this is probably a hard post for all the new parents to read and I

apologize for that. Casting is still the best option and I can not imagine what

i would be dealing right now had we opted for the surgery route.

>

> My son Cole is 2,5, he will be 3 January 3rd. We started casting at 15 (I

think) months. Did 5 casts over 10 months and are now 7-8 months into a brace.

HE has 1 very bad cast sore in his last cast, but other wise things could not

have gone any smoother throughout the process.

>

> Cole is developing some serious anxiety and at times I would say it is very

close to PTSD like symptoms. Here is an example. We leave for my aunts house

for Thanksgiving and he IS SO SO excited. The last time we had been there had

been for an MRI from our Neurologist. We ran up to the door SO excited, but the

second we stepped inside he knew exactly where we were and he instantaneously

went CRAZY with FEAR. He was terrified, kicking, screaming, fighting, sobbing

to be let out of the house. It was beyond anything normal for the age. It took

several trips outside and over 30 minutes to get him to enter the house and be

OK. Of course I don't know exactly why he did it but I can imagine it was

because of the dr association.

>

> Other freak out inducing things are any hotel (even the one for vacation we

have never been to), laying down on a doctors exam table (honestly being forced

to lay down at all) the worse is the x-ray machine. When it comes down to

x-rays we have to pin him down wit at LEAST 2 people and have had to put his

legs in a sac and strap him down along with people holding him because he is

TERRIFIED. THis is starting to impact him medical care because we can not get

accurate standing x-rays from him.

>

> It is not just these things either. He is nervous about other things he used

to like for example slides. Although not a timid child he is pretty scared of

water, and things like sledding. He won't do them even with my husband and I.

He won't even sit on a sled not moving. He just wants to stay home. I think

because it is the ONLY place he knows is SAFE.

>

> I know some is most likely heightened by the age. We have reached the phase

where we check the closet at night and he doesn't like me leaving him with a

sitter which are all so NORMAL.

>

> It is tough to see him so scared. I have been thinking about taking him to a

play therapist and am going to talk to his doctor in a month when we go for his

well-kid check up. I am a VERY high anxiety person and don't want him to feel

that way.

>

> Something that drives me SO SO nuts is when people say well he won't remember

any of this. And I'm sorry (I don't want to freak out parents but...) I am most

of my way through a masters in clinical social work and I don't buy that for a

second. I think that because he is so little he was coded these things in a

non-verbal way that he doesn't understand and can not verbally retrieve for to

process through with me. I think what is left is a more " primal " terror of some

of these things with no way to let it out and work through. I don't think even

at a very simple level that he understands or remembers WHY that house was

scary. If he doesn't remember like an older child or adult then how can I go

back and work through with him why this time is different and help him

understand that it is ok. HE is too young to CONSCIOUSLY remember his fear and

why is was scared but I am afraid that these associations will keep popping up

like they did on Thanksgiving.

>

> Anyways. Thanksgiving was an intense reminder that THIS does effect our kids

emotionally at some level even when, like Cole, they often put on a very brave

face through the process.

>

> Jenn

> Mommy to Max, 4 months and Cole, 3 in January, 1st brace from Rochester. 0

degrees laying down after 10 months in 5 casts.

>

[Guest guest]

Jenn, Nora has issues with anything that makes noise now thanks to the cast saw. We only used it on the 1st cast, has been cutting them off himself since. We were at a friends house and their son was playing with a remote controlled car, when he made the car go fast the noise that it made resembled the saw and she flipped out!!!! Sometimes she'll mention the saw out of the blue as well. I went to go clean out the car the other day and she said "Don't use a saw on Bersa(my explorer is called Bertha,lol)!" I don't know where that line of thinking came from!

Tonya Perkins

Asheboro,NC

mother of ,12 &

Nora,4 scoliosis, acid reflux

9th cast, down to 12* in cast

Greenville Shriners,SC

From: genericallyloud <jennifer.leggett@...>infantile scoliosis treatment Sent: Sat, November 27, 2010 8:07:52 AMSubject: Turkey with a side of ANXIETY

I know this is probably a hard post for all the new parents to read and I apologize for that. Casting is still the best option and I can not imagine what i would be dealing right now had we opted for the surgery route. My son Cole is 2,5, he will be 3 January 3rd. We started casting at 15 (I think) months. Did 5 casts over 10 months and are now 7-8 months into a brace. HE has 1 very bad cast sore in his last cast, but other wise things could not have gone any smoother throughout the process. Cole is developing some serious anxiety and at times I would say it is very close to PTSD like symptoms. Here is an example. We leave for my aunts house for Thanksgiving and he IS SO SO excited. The last time we had been there had been for an MRI from our Neurologist. We ran up to the door SO excited, but the second we stepped inside he knew exactly where we were and he instantaneously went CRAZY with FEAR. He was terrified, kicking, screaming,

fighting, sobbing to be let out of the house. It was beyond anything normal for the age. It took several trips outside and over 30 minutes to get him to enter the house and be OK. Of course I don't know exactly why he did it but I can imagine it was because of the dr association. Other freak out inducing things are any hotel (even the one for vacation we have never been to), laying down on a doctors exam table (honestly being forced to lay down at all) the worse is the x-ray machine. When it comes down to x-rays we have to pin him down wit at LEAST 2 people and have had to put his legs in a sac and strap him down along with people holding him because he is TERRIFIED. THis is starting to impact him medical care because we can not get accurate standing x-rays from him. It is not just these things either. He is nervous about other things he used to like for example slides. Although not a timid child he is pretty scared of water, and things

like sledding. He won't do them even with my husband and I. He won't even sit on a sled not moving. He just wants to stay home. I think because it is the ONLY place he knows is SAFE. I know some is most likely heightened by the age. We have reached the phase where we check the closet at night and he doesn't like me leaving him with a sitter which are all so NORMAL. It is tough to see him so scared. I have been thinking about taking him to a play therapist and am going to talk to his doctor in a month when we go for his well-kid check up. I am a VERY high anxiety person and don't want him to feel that way. Something that drives me SO SO nuts is when people say well he won't remember any of this. And I'm sorry (I don't want to freak out parents but...) I am most of my way through a masters in clinical social work and I don't buy that for a second. I think that because he is so little he was coded these things in a non-verbal way

that he doesn't understand and can not verbally retrieve for to process through with me. I think what is left is a more "primal" terror of some of these things with no way to let it out and work through. I don't think even at a very simple level that he understands or remembers WHY that house was scary. If he doesn't remember like an older child or adult then how can I go back and work through with him why this time is different and help him understand that it is ok. HE is too young to CONSCIOUSLY remember his fear and why is was scared but I am afraid that these associations will keep popping up like they did on Thanksgiving. Anyways. Thanksgiving was an intense reminder that THIS does effect our kids emotionally at some level even when, like Cole, they often put on a very brave face through the process. Jenn Mommy to Max, 4 months and Cole, 3 in January, 1st brace from Rochester. 0 degrees laying down after 10 months in 5

casts.

[Guest guest]

Tonya, maybe she was thinking of the vacuum cleaner? It sounds like the cast saw too Grace is scared of the vacuum, but she always has been, but maybe her fear was reinforced by the saw...hmmm. JaneFrom: tonya williams <jamienoramom@...>infantile scoliosis treatment Sent: Sun,

November 28, 2010 5:45:14 AMSubject: Re: Turkey with a side of ANXIETY

Jenn, Nora has issues with anything that makes noise now thanks to the cast saw. We only used it on the 1st cast, has been cutting them off himself since. We were at a friends house and their son was playing with a remote controlled car, when he made the car go fast the noise that it made resembled the saw and she flipped out!!!! Sometimes she'll mention the saw out of the blue as well. I went to go clean out the car the other day and she said "Don't use a saw on Bersa(my explorer is called Bertha,lol)!" I don't know where that line of thinking came from!

Tonya Perkins

Asheboro,NC

mother of ,12 &

Nora,4 scoliosis, acid reflux

9th cast, down to 12* in cast

Greenville Shriners,SC

From: genericallyloud <jennifer.leggett@...>infantile scoliosis treatment Sent: Sat, November 27, 2010 8:07:52 AMSubject: Turkey with a side of ANXIETY

I know this is probably a hard post for all the new parents to read and I apologize for that. Casting is still the best option and I can not imagine what i would be dealing right now had we opted for the surgery route. My son Cole is 2,5, he will be 3 January 3rd. We started casting at 15 (I think) months. Did 5 casts over 10 months and are now 7-8 months into a brace. HE has 1 very bad cast sore in his last cast, but other wise things could not have gone any smoother throughout the process. Cole is developing some serious anxiety and at times I would say it is very close to PTSD like symptoms. Here is an example. We leave for my aunts house for Thanksgiving and he IS SO SO excited. The last time we had been there had been for an MRI from our Neurologist. We ran up to the door SO excited, but the second we stepped inside he knew exactly where we were and he instantaneously went CRAZY with FEAR. He was terrified, kicking, screaming,

fighting, sobbing to be let out of the house. It was beyond anything normal for the age. It took several trips outside and over 30 minutes to get him to enter the house and be OK. Of course I don't know exactly why he did it but I can imagine it was because of the dr association. Other freak out inducing things are any hotel (even the one for vacation we have never been to), laying down on a doctors exam table (honestly being forced to lay down at all) the worse is the x-ray machine. When it comes down to x-rays we have to pin him down wit at LEAST 2 people and have had to put his legs in a sac and strap him down along with people holding him because he is TERRIFIED. THis is starting to impact him medical care because we can not get accurate standing x-rays from him. It is not just these things either. He is nervous about other things he used to like for example slides. Although not a timid child he is pretty scared of water, and things

like sledding. He won't do them even with my husband and I. He won't even sit on a sled not moving. He just wants to stay home. I think because it is the ONLY place he knows is SAFE. I know some is most likely heightened by the age. We have reached the phase where we check the closet at night and he doesn't like me leaving him with a sitter which are all so NORMAL. It is tough to see him so scared. I have been thinking about taking him to a play therapist and am going to talk to his doctor in a month when we go for his well-kid check up. I am a VERY high anxiety person and don't want him to feel that way. Something that drives me SO SO nuts is when people say well he won't remember any of this. And I'm sorry (I don't want to freak out parents but...) I am most of my way through a masters in clinical social work and I don't buy that for a second. I think that because he is so little he was coded these things in a non-verbal way

that he doesn't understand and can not verbally retrieve for to process through with me. I think what is left is a more "primal" terror of some of these things with no way to let it out and work through. I don't think even at a very simple level that he understands or remembers WHY that house was scary. If he doesn't remember like an older child or adult then how can I go back and work through with him why this time is different and help him understand that it is ok. HE is too young to CONSCIOUSLY remember his fear and why is was scared but I am afraid that these associations will keep popping up like they did on Thanksgiving. Anyways. Thanksgiving was an intense reminder that THIS does effect our kids emotionally at some level even when, like Cole, they often put on a very brave face through the process. Jenn Mommy to Max, 4 months and Cole, 3 in January, 1st brace from Rochester. 0 degrees laying down after 10 months in 5

casts.

[Guest guest]

I have three kids, one with scoliosis, all under the age of five. ALL my kids

where terrified of baby change tables in the malls and would scream like I was

killing them. A friend of mine, whose child does not have scoliosis, and before

my son with scoliosis was even born, let alone diagnosed, would change her

daughter on the floor of the baby department (cause it's carpeted and clean)

even if the store clerks where standing over her shoulder telling her to walk

the ten feet to the change table in the bathroom to keep her daughter from

screaming. All three of my children have gone through strange and horrible

fears, often for the same thing.

The biggest difference between the three has been that the one in the cast, my

son, has a lot more leverage when I am trying to change him or put him in the

car etc. And when he was younger people looked at me and called me a bad mom (I

really got it from the moms that I knew up here and strangers in the playground)

because my son was in a cast. The screaming just drew attention to the cast,

but all of my kids where upset regardless.

My son due to his history of pain (the cast resolved this pain -- he had a

dislocation that was hurting him,) through constant practice that started at

birth instead of at the some of the normal fear milestones, has trained himself

to be louder and sound more hard done by than his sisters. We're working on the

habit, as he actually handles some things far better than his elder sister, who

was never in a cast, did. Right around now, he is getting to the age his elder

sister was when he, my second born was born, and he is in his fourth cast.

I did, however, have a brother who was born with some serious birth defects who

was constantly going in for invasive surgery -- including bone grafts taken from

his hips. He passed away at age nine, but before he did, he proved to be the

friendliest, most fearless, least affected by pain kid I've ever met. Learned

everything physical like it was no problem, because he just did it. He knew

that, in his case, as his face was messed up, people looked at him like a freak

and he just didn't let anything stop him. He lived life to the fullest, had

more friends than anyone I have ever met (and close ones too!) Yes, he sat at

the table and swallowed his seven penicillin pre-op seven times a year (plus all

of the follow ups and other procedures he went through) until the day he was

born. And the memory of him with a glass of water and seven pills

systematically swallowing what he clearly did not like will always be one of the

memories I have of him, but I have drawn much strength from the time I spent

with him. I try to remember that some milestones are normal, even if they feel

a bit odd because of the cast, or are a bit louder out of habit on my son's

part, or get dirty looks because of the cast, but our children, no matter what

we may go through with them are so incredible and are going to be absolutely

amazing.

Shauna

Mother of Kieran, Kelsey, and .

> >

> > I know this is probably a hard post for all the new parents to read and I

apologize for that. Casting is still the best option and I can not imagine what

i would be dealing right now had we opted for the surgery route.

> >

> > My son Cole is 2,5, he will be 3 January 3rd. We started casting at 15 (I

think) months. Did 5 casts over 10 months and are now 7-8 months into a brace.

HE has 1 very bad cast sore in his last cast, but other wise things could not

have gone any smoother throughout the process.

> >

> > Cole is developing some serious anxiety and at times I would say it is very

close to PTSD like symptoms. Here is an example. We leave for my aunts house

for Thanksgiving and he IS SO SO excited. The last time we had been there had

been for an MRI from our Neurologist. We ran up to the door SO excited, but the

second we stepped inside he knew exactly where we were and he instantaneously

went CRAZY with FEAR. He was terrified, kicking, screaming, fighting, sobbing

to be let out of the house. It was beyond anything normal for the age. It took

several trips outside and over 30 minutes to get him to enter the house and be

OK. Of course I don't know exactly why he did it but I can imagine it was

because of the dr association.

> >

> > Other freak out inducing things are any hotel (even the one for vacation we

have never been to), laying down on a doctors exam table (honestly being forced

to lay down at all) the worse is the x-ray machine. When it comes down to

x-rays we have to pin him down wit at LEAST 2 people and have had to put his

legs in a sac and strap him down along with people holding him because he is

TERRIFIED. THis is starting to impact him medical care because we can not get

accurate standing x-rays from him.

> >

> > It is not just these things either. He is nervous about other things he

used to like for example slides. Although not a timid child he is pretty scared

of water, and things like sledding. He won't do them even with my husband and

I. He won't even sit on a sled not moving. He just wants to stay home. I

think because it is the ONLY place he knows is SAFE.

> >

> > I know some is most likely heightened by the age. We have reached the phase

where we check the closet at night and he doesn't like me leaving him with a

sitter which are all so NORMAL.

> >

> > It is tough to see him so scared. I have been thinking about taking him to

a play therapist and am going to talk to his doctor in a month when we go for

his well-kid check up. I am a VERY high anxiety person and don't want him to

feel that way.

> >

> > Something that drives me SO SO nuts is when people say well he won't

remember any of this. And I'm sorry (I don't want to freak out parents but...)

I am most of my way through a masters in clinical social work and I don't buy

that for a second. I think that because he is so little he was coded these

things in a non-verbal way that he doesn't understand and can not verbally

retrieve for to process through with me. I think what is left is a more

" primal " terror of some of these things with no way to let it out and work

through. I don't think even at a very simple level that he understands or

remembers WHY that house was scary. If he doesn't remember like an older child

or adult then how can I go back and work through with him why this time is

different and help him understand that it is ok. HE is too young to CONSCIOUSLY

remember his fear and why is was scared but I am afraid that these associations

will keep popping up like they did on Thanksgiving.

> >

> > Anyways. Thanksgiving was an intense reminder that THIS does effect our

kids emotionally at some level even when, like Cole, they often put on a very

brave face through the process.

> >

> > Jenn

> > Mommy to Max, 4 months and Cole, 3 in January, 1st brace from Rochester. 0

degrees laying down after 10 months in 5 casts.

> >

>

[Guest guest]

I take my baby daughter, who does not have scoliosis, to the van and change her

on the floor of the van, or on the front seat of any car, as she does not have

an issue with this. We rarely use change tables any more due to the fear babies

seem to have.

> > >

> > > I know this is probably a hard post for all the new parents to read and I

apologize for that. Casting is still the best option and I can not imagine what

i would be dealing right now had we opted for the surgery route.

> > >

> > > My son Cole is 2,5, he will be 3 January 3rd. We started casting at 15 (I

think) months. Did 5 casts over 10 months and are now 7-8 months into a brace.

HE has 1 very bad cast sore in his last cast, but other wise things could not

have gone any smoother throughout the process.

> > >

> > > Cole is developing some serious anxiety and at times I would say it is

very close to PTSD like symptoms. Here is an example. We leave for my aunts

house for Thanksgiving and he IS SO SO excited. The last time we had been there

had been for an MRI from our Neurologist. We ran up to the door SO excited, but

the second we stepped inside he knew exactly where we were and he

instantaneously went CRAZY with FEAR. He was terrified, kicking, screaming,

fighting, sobbing to be let out of the house. It was beyond anything normal for

the age. It took several trips outside and over 30 minutes to get him to enter

the house and be OK. Of course I don't know exactly why he did it but I can

imagine it was because of the dr association.

> > >

> > > Other freak out inducing things are any hotel (even the one for vacation

we have never been to), laying down on a doctors exam table (honestly being

forced to lay down at all) the worse is the x-ray machine. When it comes down

to x-rays we have to pin him down wit at LEAST 2 people and have had to put his

legs in a sac and strap him down along with people holding him because he is

TERRIFIED. THis is starting to impact him medical care because we can not get

accurate standing x-rays from him.

> > >

> > > It is not just these things either. He is nervous about other things he

used to like for example slides. Although not a timid child he is pretty scared

of water, and things like sledding. He won't do them even with my husband and

I. He won't even sit on a sled not moving. He just wants to stay home. I

think because it is the ONLY place he knows is SAFE.

> > >

> > > I know some is most likely heightened by the age. We have reached the

phase where we check the closet at night and he doesn't like me leaving him with

a sitter which are all so NORMAL.

> > >

> > > It is tough to see him so scared. I have been thinking about taking him

to a play therapist and am going to talk to his doctor in a month when we go for

his well-kid check up. I am a VERY high anxiety person and don't want him to

feel that way.

> > >

> > > Something that drives me SO SO nuts is when people say well he won't

remember any of this. And I'm sorry (I don't want to freak out parents but...)

I am most of my way through a masters in clinical social work and I don't buy

that for a second. I think that because he is so little he was coded these

things in a non-verbal way that he doesn't understand and can not verbally

retrieve for to process through with me. I think what is left is a more

" primal " terror of some of these things with no way to let it out and work

through. I don't think even at a very simple level that he understands or

remembers WHY that house was scary. If he doesn't remember like an older child

or adult then how can I go back and work through with him why this time is

different and help him understand that it is ok. HE is too young to CONSCIOUSLY

remember his fear and why is was scared but I am afraid that these associations

will keep popping up like they did on Thanksgiving.

> > >

> > > Anyways. Thanksgiving was an intense reminder that THIS does effect our

kids emotionally at some level even when, like Cole, they often put on a very

brave face through the process.

> > >

> > > Jenn

> > > Mommy to Max, 4 months and Cole, 3 in January, 1st brace from Rochester.

0 degrees laying down after 10 months in 5 casts.

> > >

> >

>

[Guest guest]

Jenn, Suzanne, and everyone else,

My Eden is 5 days younger than Cole. She's getting cast #4 on this Friday. The

first cast took her several weeks to adjust to but then she did well. We were

all upset those first few weeks...taking cast #1 off scared her (and 4yr old

daughter too, as she refused to be in the room).

Eden freaked when we arrived at the hospital for #2. She fought my husband

tooth and nail and REFUSED to get out of the car. When she woke up from the

anesthesia, she yelled at everyone. Very, very angry.

But you know, she adjusted. Her curve is improving. She's starting to talk

now, so she can tell us it's tight, it hurts, etc, but then she gets distracted

and we know it's bearable. One funny thing is we have to convince her it's ok

to sit in the bathtub after her cast is removed. She's so programmed to not get

it wet...

Eden has a brachial plexus injury from birth (with mild torticullis and

plagiocephaly that resolved) and has been examined a lot with her shirt off

since a babe. She HATES taking her shirt off. But it's not the end of the

world, and thankfully she's pretty laid back about everything else though at

some point Eden started biting her nails to the quick. It seems to have abated

since cast #1 in June. So she definitely hasn't been anxiety-free.

My nearly 5yr old is more reactive to things in general.

When she's scared or lonely, she asks her little sister if she can climb into

bed with her, and Eden the lil stinker says no.

Personally, I felt there was no decision to make for Eden. Not casting was not

an option. I'm thankful for her resiliency, and know that other kids have a

harder time (did I mention I'm rEALLY thankful my other daughter isn't going

through this? besides the obvious reason, she's 100x more challenging)

So all I can say is hang in there. I keep telling myself that the casting stage

doesn't last forever.

Sherry

[Guest guest]

Suzanne,We are on cast 8 and we just take it one day at a time. My son is thriving and the multiple spinal surgeries (every six months) would scare him far more, of that I'm certain. This group has lots of different stories and experiences and I just spoke to the mom who wrote that post today on the phone, my great friend Jenn- she would not change a thing if she had it to do all over. Casting is not easy but I'm convinced it's the best possible thing we could be doing for our precious boy. Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Suzanne Rulka <suzy3333@...>"infantile scoliosis treatment " <infantile scoliosis treatment >Sent: Sat, November 27, 2010 10:12:26 AMSubject: Re: Turkey with a side of ANXIETY

Ok. You guys are really scaring me. I don't want Shane to go through what you guys are describing. Nor do I. He is 3 now and we don't even have the date for the 1st cast yet. After reading the posts in this thread, I just might chicken out. I appreciate the honesty so I know what to be prepared for, but I'm very concerned and scared about this.SuzanneSent from my iPhoneOn Nov 27, 2010, at 11:09 AM, heather@... wrote:

Great post, Jenn.

Sorry, Cole is having anxiety. I know that must have been hard for you

and Russ. ET is super challenging on kiddos and parents. Especially, if

the kiddos are a bit older (not infants). My daughter Liv experienced

anxiety too. Our childrens scoli stories are ~so~ different, but our

kiddos sound like they have much in common when it comes to medical

anxiety. Liv was also horrified of xray machines, hospitals, docs, nurses,

hotels, the airport and airplanes, by age 3....Basically, anything that

was associated with our trips to SLC made her agitated & scared and it

became obvious that she was horrified and knew she would be back in

hospital to get poked and prodded & experience pain again. She refused at

age 2 to even get near an exam table and her doc would have to come up

with creative ways to accomplish a thorough exam. X rays finally got

better at age 3.5 or 4.

Liv refused slides until age 7. She would have also refused water (pool)

but I put a huge one up in the backyard on purpose.... And after staring

at her cousins having fun all day w/ out her, she gathered the courage to

try swimming. We had to take it very slow though. It was not easy and it

took many tries and tears. Now, she swims. She will also go sledding now,

but wouldnt touch it at 3. She would go near nothing that had the

potential to throw off her balance.

I also sought out play therapy at the local Childrens Hospital & thought

it would help her to not internalize....But, after after 2 yrs of this (1

session per week) she finally said that she didnt want to go anymore.

That was fine as I was paying $100 per session and it didnt seem to ease

her anxiety at hospital visits. (could have just been the therapist) I

think in her case, she just grew up and realized that this was her life

and surrendered to it (just a bit).

I agree that its his age. He is growing up and I think its natural that

he is realizing what scares him. Its not easy and no child should ever be

scared or have anxiety, but it happens. Im no shrink obviously but I

think it may be a good thing that he shares with you that he is petrified

and is able to get it all out. This may help him not to internalize too

much of this medical stuff. (??)

The good thing is, he will probably be done soon, and it will be just a

memory. I am in no way minimizing this as these are Coles formative

years, but I have no doubt that he will get through it.

Yesterday, Liv refused to walk up my moms front steps because there were a

few bugs there enjoying he sun. Not spiders, just black and red little

bugs. She flat our refused to walk up the stairs and is a true

arachnaphobe (sp?). Reason being, once a moth got up the back of her cast

when she was about 2.5 yrs old. Long story short, it was an extremely

traumatic event and has effected her til this day. Im now seeking out

some behavior modification therapy or bio feedback? As she must get

through this. Any ideas anyone?

I think all kiddos (and their parents) will have anxiety over having casts

and we should keep this dialogue going.

Love,

HRH

> I know this is probably a hard post for all the new parents to read and I

> apologize for that. Casting is still the best option and I can not

> imagine what i would be dealing right now had we opted for the surgery

> route.

>

> My son Cole is 2,5, he will be 3 January 3rd. We started casting at 15 (I

> think) months. Did 5 casts over 10 months and are now 7-8 months into a

> brace. HE has 1 very bad cast sore in his last cast, but other wise

> things could not have gone any smoother throughout the process.

>

> Cole is developing some serious anxiety and at times I would say it is

> very close to PTSD like symptoms. Here is an example. We leave for my

> aunts house for Thanksgiving and he IS SO SO excited. The last time we

> had been there had been for an MRI from our Neurologist. We ran up to the

> door SO excited, but the second we stepped inside he knew exactly where we

> were and he instantaneously went CRAZY with FEAR. He was terrified,

> kicking, screaming, fighting, sobbing to be let out of the house. It was

> beyond anything normal for the age. It took several trips outside and

> over 30 minutes to get him to enter the house and be OK. Of course I

> don't know exactly why he did it but I can imagine it was because of the

> dr association.

>

> Other freak out inducing things are any hotel (even the one for vacation

> we have never been to), laying down on a doctors exam table (honestly

> being forced to lay down at all) the worse is the x-ray machine. When it

> comes down to x-rays we have to pin him down wit at LEAST 2 people and

> have had to put his legs in a sac and strap him down along with people

> holding him because he is TERRIFIED. THis is starting to impact him

> medical care because we can not get accurate standing x-rays from him.

>

> It is not just these things either. He is nervous about other things he

> used to like for example slides. Although not a timid child he is pretty

> scared of water, and things like sledding. He won't do them even with my

> husband and I. He won't even sit on a sled not moving. He just wants to

> stay home. I think because it is the ONLY place he knows is SAFE.

>

> I know some is most likely heightened by the age. We have reached the

> phase where we check the closet at night and he doesn't like me leaving

> him with a sitter which are all so NORMAL.

>

> It is tough to see him so scared. I have been thinking about taking him

> to a play therapist and am going to talk to his doctor in a month when we

> go for his well-kid check up. I am a VERY high anxiety person and don't

> want him to feel that way.

>

> Something that drives me SO SO nuts is when people say well he won't

> remember any of this. And I'm sorry (I don't want to freak out parents

> but...) I am most of my way through a masters in clinical social work and

> I don't buy that for a second. I think that because he is so little he

> was coded these things in a non-verbal way that he doesn't understand and

> can not verbally retrieve for to process through with me. I think what is

> left is a more "primal" terror of some of these things with no way to let

> it out and work through. I don't think even at a very simple level that

> he understands or remembers WHY that house was scary. If he doesn't

> remember like an older child or adult then how can I go back and work

> through with him why this time is different and help him understand that

> it is ok. HE is too young to CONSCIOUSLY remember his fear and why is was

> scared but I am afraid that these associations will keep popping up like

> they did on Thanksgiving.

>

> Anyways. Thanksgiving was an intense reminder that THIS does effect our

> kids emotionally at some level even when, like Cole, they often put on a

> very brave face through the process.

>

> Jenn

> Mommy to Max, 4 months and Cole, 3 in January, 1st brace from Rochester.

> 0 degrees laying down after 10 months in 5 casts.

>

>

[Guest guest]

Yes, that is what we usually do too - take her to our van to change her. BUT, we

were at the mall and it was 36 degrees outside and we had been shopping for over

2 hours which meant that our van was freezing cold inside. Plus, we were unable

to park close to the building because of all of the shoppers. So, we would have

had to walk all the way to the end of the parking lot in the freezing weather to

a cold van and then changed her. So, we opted to change her this once inside.

When we are closer to the building or it is warmer outside, we take her to the

van.

- , mom of Abby (15 months) 48 degrees down to 17 degrees in first cast

> > > >

> > > > I know this is probably a hard post for all the new parents to read and

I apologize for that. Casting is still the best option and I can not imagine

what i would be dealing right now had we opted for the surgery route.

> > > >

> > > > My son Cole is 2,5, he will be 3 January 3rd. We started casting at 15

(I think) months. Did 5 casts over 10 months and are now 7-8 months into a

brace. HE has 1 very bad cast sore in his last cast, but other wise things

could not have gone any smoother throughout the process.

> > > >

> > > > Cole is developing some serious anxiety and at times I would say it is

very close to PTSD like symptoms. Here is an example. We leave for my aunts

house for Thanksgiving and he IS SO SO excited. The last time we had been there

had been for an MRI from our Neurologist. We ran up to the door SO excited, but

the second we stepped inside he knew exactly where we were and he

instantaneously went CRAZY with FEAR. He was terrified, kicking, screaming,

fighting, sobbing to be let out of the house. It was beyond anything normal for

the age. It took several trips outside and over 30 minutes to get him to enter

the house and be OK. Of course I don't know exactly why he did it but I can

imagine it was because of the dr association.

> > > >

> > > > Other freak out inducing things are any hotel (even the one for vacation

we have never been to), laying down on a doctors exam table (honestly being

forced to lay down at all) the worse is the x-ray machine. When it comes down

to x-rays we have to pin him down wit at LEAST 2 people and have had to put his

legs in a sac and strap him down along with people holding him because he is

TERRIFIED. THis is starting to impact him medical care because we can not get

accurate standing x-rays from him.

> > > >

> > > > It is not just these things either. He is nervous about other things he

used to like for example slides. Although not a timid child he is pretty scared

of water, and things like sledding. He won't do them even with my husband and

I. He won't even sit on a sled not moving. He just wants to stay home. I

think because it is the ONLY place he knows is SAFE.

> > > >

> > > > I know some is most likely heightened by the age. We have reached the

phase where we check the closet at night and he doesn't like me leaving him with

a sitter which are all so NORMAL.

> > > >

> > > > It is tough to see him so scared. I have been thinking about taking him

to a play therapist and am going to talk to his doctor in a month when we go for

his well-kid check up. I am a VERY high anxiety person and don't want him to

feel that way.

> > > >

> > > > Something that drives me SO SO nuts is when people say well he won't

remember any of this. And I'm sorry (I don't want to freak out parents but...)

I am most of my way through a masters in clinical social work and I don't buy

that for a second. I think that because he is so little he was coded these

things in a non-verbal way that he doesn't understand and can not verbally

retrieve for to process through with me. I think what is left is a more

" primal " terror of some of these things with no way to let it out and work

through. I don't think even at a very simple level that he understands or

remembers WHY that house was scary. If he doesn't remember like an older child

or adult then how can I go back and work through with him why this time is

different and help him understand that it is ok. HE is too young to CONSCIOUSLY

remember his fear and why is was scared but I am afraid that these associations

will keep popping up like they did on Thanksgiving.

> > > >

> > > > Anyways. Thanksgiving was an intense reminder that THIS does effect our

kids emotionally at some level even when, like Cole, they often put on a very

brave face through the process.

> > > >

> > > > Jenn

> > > > Mommy to Max, 4 months and Cole, 3 in January, 1st brace from Rochester.

0 degrees laying down after 10 months in 5 casts.

> > > >

> > >

> >

>

[Guest guest]

Jenn

I am just reading this now and can totally feel your pain. We have the same problem with Hayden and my Ped actually just told me last week that she feels he has PTSD to some degree. I think alot of these kids do and we just don't realize it. They have been through so much at such a young age in a short amount of time. He freaks out from little things, like loud noises, pictures of him when he was born and in the hospital, bright places (like a gymnasium at a highschool or something). So all I can tell you is you are not alone. Let me know what you decide to do for Cole. Sorry he is having such bad anxiety. He is such a smart little guy. Email me if you want to chat

Joanmom to Hayden 339 degrees down from 62After 4 casts, now in a brace 23 hours/dayTreated at ish Rite Hospital Dallas, TX

From: genericallyloud <jennifer.leggett@...>infantile scoliosis treatment Sent: Sat, November 27, 2010 7:07:52 AMSubject: Turkey with a side of ANXIETY

I know this is probably a hard post for all the new parents to read and I apologize for that. Casting is still the best option and I can not imagine what i would be dealing right now had we opted for the surgery route. My son Cole is 2,5, he will be 3 January 3rd. We started casting at 15 (I think) months. Did 5 casts over 10 months and are now 7-8 months into a brace. HE has 1 very bad cast sore in his last cast, but other wise things could not have gone any smoother throughout the process. Cole is developing some serious anxiety and at times I would say it is very close to PTSD like symptoms. Here is an example. We leave for my aunts house for Thanksgiving and he IS SO SO excited. The last time we had been there had been for an MRI from our Neurologist. We ran up to the door SO excited, but the second we stepped inside he knew exactly where we were and he instantaneously went CRAZY with FEAR. He was terrified, kicking, screaming,

fighting, sobbing to be let out of the house. It was beyond anything normal for the age. It took several trips outside and over 30 minutes to get him to enter the house and be OK. Of course I don't know exactly why he did it but I can imagine it was because of the dr association. Other freak out inducing things are any hotel (even the one for vacation we have never been to), laying down on a doctors exam table (honestly being forced to lay down at all) the worse is the x-ray machine. When it comes down to x-rays we have to pin him down wit at LEAST 2 people and have had to put his legs in a sac and strap him down along with people holding him because he is TERRIFIED. THis is starting to impact him medical care because we can not get accurate standing x-rays from him. It is not just these things either. He is nervous about other things he used to like for example slides. Although not a timid child he is pretty scared of water, and things

like sledding. He won't do them even with my husband and I. He won't even sit on a sled not moving. He just wants to stay home. I think because it is the ONLY place he knows is SAFE. I know some is most likely heightened by the age. We have reached the phase where we check the closet at night and he doesn't like me leaving him with a sitter which are all so NORMAL. It is tough to see him so scared. I have been thinking about taking him to a play therapist and am going to talk to his doctor in a month when we go for his well-kid check up. I am a VERY high anxiety person and don't want him to feel that way. Something that drives me SO SO nuts is when people say well he won't remember any of this. And I'm sorry (I don't want to freak out parents but...) I am most of my way through a masters in clinical social work and I don't buy that for a second. I think that because he is so little he was coded these things in a non-verbal way

that he doesn't understand and can not verbally retrieve for to process through with me. I think what is left is a more "primal" terror of some of these things with no way to let it out and work through. I don't think even at a very simple level that he understands or remembers WHY that house was scary. If he doesn't remember like an older child or adult then how can I go back and work through with him why this time is different and help him understand that it is ok. HE is too young to CONSCIOUSLY remember his fear and why is was scared but I am afraid that these associations will keep popping up like they did on Thanksgiving. Anyways. Thanksgiving was an intense reminder that THIS does effect our kids emotionally at some level even when, like Cole, they often put on a very brave face through the process. Jenn Mommy to Max, 4 months and Cole, 3 in January, 1st brace from Rochester. 0 degrees laying down after 10 months in 5

casts.