Re: Follow-up appt

February 17, 2012

I'm sorry you are feeling so down. It stinks that scoliosis can make you feel beaten down like that I know how you feel because I feel the same. Maybe it's a good thing you didn't have to make the decision and it's Off the table for now. You can let his skin heal up and maybe look into other options out there. Keep your chin up. You aren't a bad mom. You are trying your best to help Shane. I know none of that makes you feel any better right now but it's the truth. TameSent from my iPhoneOn Feb 16, 2012, at 7:16 PM, suzy3333@... wrote:

Well, I took Shane for a follow-up "wound check" appointment. To my surprise, Dr. C came in and informed me that he is taking the casting option "off the table" for Shane. He said that because he has now gotten 2 sores (May 2011 and February 2012) that he was stopping the casting. I was totally thrown aback because the cast the Dr. C put him in back in November 2011, was the cast that Shane kept on for the longest time and he had not 1 sore. When I told him that I was confused because he had told me that many kids gets sores, he responded, "but the 2 sores that Shane has gotten are the 2 worse sores I HAVE EVER SEEN". What??? Why am I hearing that now? To say that I'm annoyed is an understatement. He send us for Shane to get measurements for a brace (Boston Brace to be exact). However, he did tell me that we are unsure if it will even hold Shane's curves.

I didn't know if I even wanted to continue with the casting. But, now I feel like this infantile idiopathic scoliosis beat us and won. My heart is breaking for my baby because I failed to help him to get a better spine. I really must be the worst mother in the world since I am unable to help my son.

Sorry for the rant. I need to go lay down. I am so emotionally drained. Maybe tomorrow I can wake up from this nightmare (yeah right. If only...).

Anyway, sorry for being a downer. I just needed to vent.

SUZY ºOºsuzy3333

February 17, 2012

How far are you from Rochester? Could you get a second opinion. My understanding is that cast sores are not normal. They should not happen. Our doctor was one of the first trained by Mehta and had only had a handful of sores - I think 3 as of 2010 when we had ours.

If you want to keep going, I would just talk to another doctor and get their opinion. One thing to note with the brace and the sore. The pressure from the brace doesn't allow the sore to heal. We tried to wear the brace 24 hours a day and a month later the sore was still gaping. We eventually had to take a few days off and it healed rapidly at that point.

Hang in there! You will get through this. Jenn Mommy to Cole

February 17, 2012

Finally, saw the pressure wound and it is also one of the worst I have

ever seen. Please dont beat yourself up about this Suzy. You will always

seek out info on PIS and what treatments may/may not benefit your Shane.

The repeated wounds have set him back temporarily, not anything you

did/didnt do...The brace may hold him and give you time to discuss

treatment options in the future. Either way, it gives you time and no

decisions will made in haste. You know you're doing all you can and thats

all you can do.

Hang in there.

HRH

> Well, I took Shane for a follow-up " wound check " appointment. To my

> surprise, Dr. C came in and informed me that he is taking the casting

> option

> " off the table " for Shane. He said that because he has now gotten 2 sores

> (May 2011 and February 2012) that he was stopping the casting. I was

> totally

> thrown aback because the cast the Dr. C put him in back in November 2011,

> was the cast that Shane kept on for the longest time and he had not 1

> sore.

> When I told him that I was confused because he had told me that many kids

> gets sores, he responded, " but the 2 sores that Shane has gotten are the 2

> worse sores I HAVE EVER SEEN " . What??? Why am I hearing that now? To

> say

> that I'm annoyed is an understatement. He send us for Shane to get

> measurements for a brace (Boston Brace to be exact). However, he did

> tell me

> that we are unsure if it will even hold Shane's curves.

>

> I didn't know if I even wanted to continue with the casting. But, now I

> feel like this infantile idiopathic scoliosis beat us and won. My heart

> is

> breaking for my baby because I failed to help him to get a better spine.

> I

> really must be the worst mother in the world since I am unable to help my

> son.

>

> Sorry for the rant. I need to go lay down. I am so emotionally drained.

> Maybe tomorrow I can wake up from this nightmare (yeah right. If

> only...).

>

> Anyway, sorry for being a downer. I just needed to vent.

>

> SUZY ºOº

> suzy3333

February 18, 2012

Hello Suzy!

First of *HUGS*..if your son has the worst cast sore Dr. C's ever seen, it must

be bad, b/c that's what he said about Abigails! Hers took 2 months to heal and

allowed her curve to progress 8 more degrees. A picture of her cast sore is in

the Photos section, under AbigailFrappier. He wanted us to re-cast every 4 weeks

but we just couldn't manage that(we live too far away).

So we found other options, and now cast closer to home at Boston Childrens. Her

second cast she began to have another sore but all 7 casts since she's been

fine...No sores, not even redness except on her shoulder blade. The doctor puts

LOTS of padding in and positions the indent right above her sensitive scar

tissue so the pressure isn't so bad. And we also change out every 2.5 months,

not every 3.

I would say don't give up on casting unless you want too, not b/c you have too!

I second the notion for Dr. , we would go there in a heartbeat but he

doesn't take our insurance.

*HUGS*

Ami

Abigail 40*/35* S curve 1st cast shriner's Philly, 9 at Boston Childrens

currently at 12* in cast, about 38 out..

>

> Well, I took Shane for a follow-up " wound check " appointment. To my

> surprise, Dr. C came in and informed me that he is taking the casting option

> " off the table " for Shane. He said that because he has now gotten 2 sores

> (May 2011 and February 2012) that he was stopping the casting. I was totally

> thrown aback because the cast the Dr. C put him in back in November 2011,

> was the cast that Shane kept on for the longest time and he had not 1 sore.

> When I told him that I was confused because he had told me that many kids

> gets sores, he responded, " but the 2 sores that Shane has gotten are the 2

> worse sores I HAVE EVER SEEN " . What??? Why am I hearing that now? To say

> that I'm annoyed is an understatement. He send us for Shane to get

> measurements for a brace (Boston Brace to be exact). However, he did tell me

> that we are unsure if it will even hold Shane's curves.

>

> I didn't know if I even wanted to continue with the casting. But, now I

> feel like this infantile idiopathic scoliosis beat us and won. My heart is

> breaking for my baby because I failed to help him to get a better spine. I

> really must be the worst mother in the world since I am unable to help my

> son.

>

> Sorry for the rant. I need to go lay down. I am so emotionally drained.

> Maybe tomorrow I can wake up from this nightmare (yeah right. If only...).

>

> Anyway, sorry for being a downer. I just needed to vent.

>

> SUZY ºOº

> suzy3333

>

February 20, 2012

I second the idea I have read about getting a second opinion from another

doctor. Maybe another doctor, although the first doctor may be excellent, may

be just what Shane needs and the slight differences in individual technique will

work better for Shane's body. Good luck with the cast break! Even if Shane's

doctor is no longer available for casting, maybe trying again with someone else

is just what's needed once he has healed.

We all completely understand Suzy and wish there was everything we could do to

help, and are here to listed for sure.

Shauna

mother of Kelsey, Kieran, and