Re: I don't think I can do this anymore...

[Guest guest]

oh sweet jesus, i am so sorry you are going through all of this. I will pray for your little one and you, I wish I had some answers for you, but I don't

does he ware the undershirts and still gets that?

Jaylin (34 out of cast, 13 in now 5 years old) wares his undershirts. He doesn't like it without.

Joy Jaylin's mom

From: suzy3333@... <suzy3333@...>Subject: I don't think I can do this anymore...infantile scoliosis treatment Date: Tuesday, February 14, 2012, 6:15 AM

Hello everyone,

I need some thoughts on what you would do. Back last May, as some of you may remember, Shane got a bad pressure sore on his tummy. Initially, I was told that it would heal and all scars left from it would be gone it a few weeks. Well, we are in February and a scar is still there. (Albeit, smaller than it was but still noticeable).

Now, for the new information. Shane got his 6th cast on February 2. On February 4th (yes, 2 days later) he started to complain of pain. I gave him Tylenol at bedtime to help him sleep. Then at bedtime, the next night is had gotten worse.

By the 6th, (4 days after the new cast was applied) I could've taken him back to the hospital to have it looked at but feared I didn't want to be a hypochondriac or feel like I was crying wolf. So, I decided to stick it out until yesterday. Yes, I said yesterday. I let a whole week go by (mostly because the doctor was away at a conference and wasn't going to be there). Turns, out they had to cut off his cast (that he only had on for 11 days) because of a very, very, very bad pressure sore.

It was so bad, that the nurse gasped when she saw it and told me, "you don't want to see this. It's worse than the last one". Of course I had to look and broke down when I saw. His sore was completely open (I thought he might need stitches) and you could see into his back. Because of the location, they were unable to work around the cast which was why they cut it off.

Now, what would you do. Shane has very sensitive skin which is why it breaksdown quickly. I don't want my baby is any pain or discomfort. But, I don't want to have his back cut into for surgery. Do I continue with the casting route or just jump head first into VEPTR surgery? What would you do?

I need advice please. I will post the picture of the sore below, but please know that THE PICTURE IS GRAPHIC.

SUZY ºOºsuzy3333

[Guest guest]

Joy,

Yes. He started wearing those special gray shirts starting with cast #5. This cast was just tighter than the previous one (at my request). The first standing x-ray prior to Dr. C ever casting Shane (4/8/11) was 53º. The last out of cast standing x-ray (11/17/11) was 43º. So, when I started to see a very slow decrease in numbers (I'll take slow over none) I got excited. So, I asked Dr. C if we can get this cast tighter than the last one since that was the largest decrease and the tightest cast (at the time)?

Well, it obviously didn't work. I guess I never should have asked for a tighter one and then we wouldn't have this set-back right now. Now, I have to hope that this sore heals quickly so that we don't regress with the 10º progress that we made.

But, now I don't know if I want to chance a 3rd sore, if he gets casted again. I don't want to put my 4 year old baby through surgery. But, I also don't want him in any pain or discomfort with any more sores. It just breaks my heart. I wish I could walk on broken glass through a fire if only that would fix his spine and make it straight.

SUZY ºOºsuzy3333

In a message dated 2/14/2012 7:21:22 A.M. Eastern Standard Time, jll_mickey@... writes:

oh sweet jesus, i am so sorry you are going through all of this. I will pray for your little one and you, I wish I had some answers for you, but I don't

does he ware the undershirts and still gets that?

Jaylin (34 out of cast, 13 in now 5 years old) wares his undershirts. He doesn't like it without.

Joy Jaylin's mom

From: suzy3333@... <suzy3333@...>Subject: I don't think I can do this anymore...infantile scoliosis treatment Date: Tuesday, February 14, 2012, 6:15 AM

Hello everyone,

I need some thoughts on what you would do. Back last May, as some of you may remember, Shane got a bad pressure sore on his tummy. Initially, I was told that it would heal and all scars left from it would be gone it a few weeks. Well, we are in February and a scar is still there. (Albeit, smaller than it was but still noticeable).

Now, for the new information. Shane got his 6th cast on February 2. On February 4th (yes, 2 days later) he started to complain of pain. I gave him Tylenol at bedtime to help him sleep. Then at bedtime, the next night is had gotten worse.

By the 6th, (4 days after the new cast was applied) I could've taken him back to the hospital to have it looked at but feared I didn't want to be a hypochondriac or feel like I was crying wolf. So, I decided to stick it out until yesterday. Yes, I said yesterday. I let a whole week go by (mostly because the doctor was away at a conference and wasn't going to be there). Turns, out they had to cut off his cast (that he only had on for 11 days) because of a very, very, very bad pressure sore.

It was so bad, that the nurse gasped when she saw it and told me, "you don't want to see this. It's worse than the last one". Of course I had to look and broke down when I saw. His sore was completely open (I thought he might need stitches) and you could see into his back. Because of the location, they were unable to work around the cast which was why they cut it off.

Now, what would you do. Shane has very sensitive skin which is why it breaksdown quickly. I don't want my baby is any pain or discomfort. But, I don't want to have his back cut into for surgery. Do I continue with the casting route or just jump head first into VEPTR surgery? What would you do?

I need advice please. I will post the picture of the sore below, but please know that THE PICTURE IS GRAPHIC.

SUZY ºOºsuzy3333

[Guest guest]

Yeah I know what you mean, it would be so much easier to just go through all this ourselves, less heartache!Hang in there, answers will start coming in for u guys. Just keep praying!!!Live, laugh, and loveJoyOn Feb 14, 2012, at 7:48 AM, suzy3333@... wrote:

Joy,

Yes. He started wearing those special gray shirts starting with cast #5. This cast was just tighter than the previous one (at my request). The first standing x-ray prior to Dr. C ever casting Shane (4/8/11) was 53º. The last out of cast standing x-ray (11/17/11) was 43º. So, when I started to see a very slow decrease in numbers (I'll take slow over none) I got excited. So, I asked Dr. C if we can get this cast tighter than the last one since that was the largest decrease and the tightest cast (at the time)?

Well, it obviously didn't work. I guess I never should have asked for a tighter one and then we wouldn't have this set-back right now. Now, I have to hope that this sore heals quickly so that we don't regress with the 10º progress that we made.

But, now I don't know if I want to chance a 3rd sore, if he gets casted again. I don't want to put my 4 year old baby through surgery. But, I also don't want him in any pain or discomfort with any more sores. It just breaks my heart. I wish I could walk on broken glass through a fire if only that would fix his spine and make it straight.

SUZY ºOºsuzy3333

In a message dated 2/14/2012 7:21:22 A.M. Eastern Standard Time, jll_mickey@... writes:

oh sweet jesus, i am so sorry you are going through all of this. I will pray for your little one and you, I wish I had some answers for you, but I don't

does he ware the undershirts and still gets that?

Jaylin (34 out of cast, 13 in now 5 years old) wares his undershirts. He doesn't like it without.

Joy Jaylin's mom

From: suzy3333@... <suzy3333@...>Subject: I don't think I can do this anymore...infantile scoliosis treatment Date: Tuesday, February 14, 2012, 6:15 AM

Hello everyone,

I need some thoughts on what you would do. Back last May, as some of you may remember, Shane got a bad pressure sore on his tummy. Initially, I was told that it would heal and all scars left from it would be gone it a few weeks. Well, we are in February and a scar is still there. (Albeit, smaller than it was but still noticeable).

Now, for the new information. Shane got his 6th cast on February 2. On February 4th (yes, 2 days later) he started to complain of pain. I gave him Tylenol at bedtime to help him sleep. Then at bedtime, the next night is had gotten worse.

By the 6th, (4 days after the new cast was applied) I could've taken him back to the hospital to have it looked at but feared I didn't want to be a hypochondriac or feel like I was crying wolf. So, I decided to stick it out until yesterday. Yes, I said yesterday. I let a whole week go by (mostly because the doctor was away at a conference and wasn't going to be there). Turns, out they had to cut off his cast (that he only had on for 11 days) because of a very, very, very bad pressure sore.

It was so bad, that the nurse gasped when she saw it and told me, "you don't want to see this. It's worse than the last one". Of course I had to look and broke down when I saw. His sore was completely open (I thought he might need stitches) and you could see into his back. Because of the location, they were unable to work around the cast which was why they cut it off.

Now, what would you do. Shane has very sensitive skin which is why it breaksdown quickly. I don't want my baby is any pain or discomfort. But, I don't want to have his back cut into for surgery. Do I continue with the casting route or just jump head first into VEPTR surgery? What would you do?

I need advice please. I will post the picture of the sore below, but please know that THE PICTURE IS GRAPHIC.

<Back%20Sore.jpg>

SUZY ºOºsuzy3333

[Guest guest]

Suzy, I am so sorry!  I feel your pain here, at least a little.  I little one widget a horrible soar in his last cast. It took over a month to heal and he has a HUGE scar on his hip.  It is lighter now (1.5 years latter) but it will never go away. 

My advice is to try casting with another casting doctor.  Just once - If you can manage that.  I would go to a doctor like Dr. S at Rochester or Dr. D.A. at SLC who have been trained the longest.   I know there are some others who have done it a long time as well.  I would contact heather and get some names.  If we had to be recasted after his sore and if he had more than 1, that is what I would have tried.  I would have given it 1 shot to see how it went.  

Jenn Mommy to Cole & MaxOn Tue, Feb 14, 2012 at 6:15 AM, <suzy3333@...> wrote:

Hello everyone,

 

I need some thoughts on what you would do.  Back last May, as some of you may remember, Shane got a bad pressure sore on his tummy.  Initially, I was told that it would heal and all scars left from it would be gone it a few weeks.  Well, we are in February and a scar is still there.  (Albeit, smaller than it was but still noticeable).

 

Now, for the new information.  Shane got his 6th cast on February 2.  On February 4th (yes, 2 days later) he started to complain of pain.  I gave him Tylenol at bedtime to help him sleep.  Then at bedtime, the next night is had gotten worse.

 

By the 6th, (4 days after the new cast was applied) I could've taken him back to the hospital to have it looked at but feared I didn't want to be a hypochondriac or feel like I was crying wolf.  So, I decided to stick it out until yesterday.  Yes, I said yesterday.  I let a whole week go by (mostly because the doctor was away at a conference and wasn't going to be there).  Turns, out they had to cut off his cast (that he only had on for 11 days) because of a very, very, very bad pressure sore.

 

It was so bad, that the nurse gasped when she saw it and told me, " you don't want to see this.  It's worse than the last one " .  Of course I had to look and broke down when I saw.  His sore was completely open (I thought he might need stitches) and you could see into his back.  Because of the location, they were unable to work around the cast which was why they cut it off.

 

Now, what would you do.  Shane has very sensitive skin which is why it breaksdown quickly.  I don't want my baby is any pain or discomfort.  But, I don't want to have his back cut into for surgery. Do I continue with the casting route or just jump head first into VEPTR surgery?  What would you do? 

 

I need advice please.  I will post the picture of the sore below, but please know that THE PICTURE IS GRAPHIC. 

 

 

 

 

 

SUZY ºOºsuzy3333

[Guest guest]

Suzy, I wouldnt put him back in a cast. If it happened so face.i would.think.its was going to happen over and over. Maybe bracing would be worth looking at. I don't know anything about vepter but i know some family will chime in. Just me.personally if i saw that with my son that would be the last cast. Candies Sent from Samsung Mobile

suzy3333@... wrote:

Hello everyone,

I need some thoughts on what you would do. Back last May, as some of you may remember, Shane got a bad pressure sore on his tummy. Initially, I was told that it would heal and all scars left from it would be gone it a few weeks. Well, we are in February and a scar is still there. (Albeit, smaller than it was but still noticeable).

Now, for the new information. Shane got his 6th cast on February 2. On February 4th (yes, 2 days later) he started to complain of pain. I gave him Tylenol at bedtime to help him sleep. Then at bedtime, the next night is had gotten worse.

By the 6th, (4 days after the new cast was applied) I could've taken him back to the hospital to have it looked at but feared I didn't want to be a hypochondriac or feel like I was crying wolf. So, I decided to stick it out until yesterday. Yes, I said yesterday. I let a whole week go by (mostly because the doctor was away at a conference and wasn't going to be there). Turns, out they had to cut off his cast (that he only had on for 11 days) because of a very, very, very bad pressure sore.

It was so bad, that the nurse gasped when she saw it and told me, "you don't want to see this. It's worse than the last one". Of course I had to look and broke down when I saw. His sore was completely open (I thought he might need stitches) and you could see into his back. Because of the location, they were unable to work around the cast which was why they cut it off.

Now, what would you do. Shane has very sensitive skin which is why it breaksdown quickly. I don't want my baby is any pain or discomfort. But, I don't want to have his back cut into for surgery. Do I continue with the casting route or just jump head first into VEPTR surgery? What would you do?

I need advice please. I will post the picture of the sore below, but please know that THE PICTURE IS GRAPHIC.

SUZY ºOºsuzy3333

[Guest guest]

Hi Suzy:)I was just thinking about you the other day and wondering how things were going. We think our son is developing soriosis (however yah spell it) and I was telling my husband about Shane and his skin issues. Let me start by saying you have just been through the wringer w all of the cast/sore craziness! I feel like everything that could go wrong has.... I completely understand your hesitation to continue and it's okay to look into other options. The cast thing won't work for everyone. My son started Mehta about the same time as Shane I think. If I were in your shoes I would have a serious sit down pow wow w your doc about options. What are his chances of holding the curve in z brace? How agressive do they think the curve is? If it hasn't changed much - even w a loose cast maybe it would do a decent job of holding him for a couple years. What kinda brace do they use? Would they measure or mold? Is Shane

a candidate for veptr? What ate the pros and cons of veptr vs rods ....My son is getting his last cast in April. It's the end of the line for us and I happen to currently be extremely pissed off at primarily all doctors at the moment bc I feel like my son has just gotten the raw end of the deal from more than one doctor. I am sort of in transition mode trying to figure out what's best and what the next step should be .... I would happily hold your hand and walk across fire with you:( I hope you find viable options which will work for your little man. I hope hus sore heals quickly and things work out. Just remember you are trying to do shat you can to help Shane and try not to feel guilty about the sore. It's out of your control.Tame Sent from my iPhoneOn Feb 14, 2012, at 5:15 AM, suzy3333@... wrote:

Hello everyone,

I need some thoughts on what you would do. Back last May, as some of you may remember, Shane got a bad pressure sore on his tummy. Initially, I was told that it would heal and all scars left from it would be gone it a few weeks. Well, we are in February and a scar is still there. (Albeit, smaller than it was but still noticeable).

Now, for the new information. Shane got his 6th cast on February 2. On February 4th (yes, 2 days later) he started to complain of pain. I gave him Tylenol at bedtime to help him sleep. Then at bedtime, the next night is had gotten worse.

By the 6th, (4 days after the new cast was applied) I could've taken him back to the hospital to have it looked at but feared I didn't want to be a hypochondriac or feel like I was crying wolf. So, I decided to stick it out until yesterday. Yes, I said yesterday. I let a whole week go by (mostly because the doctor was away at a conference and wasn't going to be there). Turns, out they had to cut off his cast (that he only had on for 11 days) because of a very, very, very bad pressure sore.

It was so bad, that the nurse gasped when she saw it and told me, "you don't want to see this. It's worse than the last one". Of course I had to look and broke down when I saw. His sore was completely open (I thought he might need stitches) and you could see into his back. Because of the location, they were unable to work around the cast which was why they cut it off.

Now, what would you do. Shane has very sensitive skin which is why it breaksdown quickly. I don't want my baby is any pain or discomfort. But, I don't want to have his back cut into for surgery. Do I continue with the casting route or just jump head first into VEPTR surgery? What would you do?

I need advice please. I will post the picture of the sore below, but please know that THE PICTURE IS GRAPHIC.

<Back%20Sore.jpg>

SUZY ºOºsuzy3333

[Guest guest]

Dear Suzy,

I cant find the photo...If possible, please send to isop06@...

Once the sore is healed, I wonder if another series of edf casts would be

in order, with the goal being to maintain, not correct 100%? Maybe a

looser series of casts during the winter, alternated with a well fitting

brace during the summer? Perhaps, looser edf casts could help maintain

him and buy growth time until he is older/bigger for distraction hardware

surgery? If this is not a viable option, then seeking multiple opinions

shouldnt be out of the question...Surgical intervention is a huge

commitment and multiple opinions are definitely in order for all scoli

treatments.

Sorry, to hear about this Suzy..Please let me know if I can help.

HRH

Hello everyone,

>

> I need some thoughts on what you would do. Back last May, as some of you

> may remember, Shane got a bad pressure sore on his tummy. Initially, I

> was

> told that it would heal and all scars left from it would be gone it a few

> weeks. Well, we are in February and a scar is still there. (Albeit,

> smaller than it was but still noticeable).

>

> Now, for the new information. Shane got his 6th cast on February 2. On

> February 4th (yes, 2 days later) he started to complain of pain. I gave

> him

> Tylenol at bedtime to help him sleep. Then at bedtime, the next night is

> had gotten worse.

>

> By the 6th, (4 days after the new cast was applied) I could've taken him

> back to the hospital to have it looked at but feared I didn't want to be a

> hypochondriac or feel like I was crying wolf. So, I decided to stick it

> out

> until yesterday. Yes, I said yesterday. I let a whole week go by

> (mostly

> because the doctor was away at a conference and wasn't going to be

> there).

> Turns, out they had to cut off his cast (that he only had on for 11

> days)

> because of a very, very, very bad pressure sore.

>

> It was so bad, that the nurse gasped when she saw it and told me, " you

> don't want to see this. It's worse than the last one " . Of course I had

> to

> look and broke down when I saw. His sore was completely open (I thought

> he

> might need stitches) and you could see into his back. Because of the

> location, they were unable to work around the cast which was why they cut

> it off.

>

> Now, what would you do. Shane has very sensitive skin which is why it

> breaksdown quickly. I don't want my baby is any pain or discomfort.

> But, I

> don't want to have his back cut into for surgery. Do I continue with the

> casting route or just jump head first into VEPTR surgery? What would you

> do?

>

> I need advice please. I will post the picture of the sore below, but

> please know that THE PICTURE IS GRAPHIC.

>

>

>

>

>

>

> SUZY ºOº

> suzy3333

[Guest guest]

Suzy have you considered bracing for a while? I don't know the specifics of

Shane's scoliosis, but I thought I would add this to your brainstorming.

Although it may sound like the completely wrong direction, it may allow some

time to consider both VEPTR and casting at a later date. I understand that it

may be a while before Shane could even wear a brace too, and I don't know if he

takes cast breaks in a brace already, but am just sharing because it is the only

thing I came up with so far, not knowing all about Shane. Sorry if it is too

far out in left field and good luck!

Shauna

mother of Kieran, , and Kelsey.

>

> Hello everyone,

>

> I need some thoughts on what you would do. Back last May, as some of you

> may remember, Shane got a bad pressure sore on his tummy. Initially, I was

> told that it would heal and all scars left from it would be gone it a few

> weeks. Well, we are in February and a scar is still there. (Albeit,

> smaller than it was but still noticeable).

>

> Now, for the new information. Shane got his 6th cast on February 2. On

> February 4th (yes, 2 days later) he started to complain of pain. I gave him

> Tylenol at bedtime to help him sleep. Then at bedtime, the next night is

> had gotten worse.

>

> By the 6th, (4 days after the new cast was applied) I could've taken him

> back to the hospital to have it looked at but feared I didn't want to be a

> hypochondriac or feel like I was crying wolf. So, I decided to stick it out

> until yesterday. Yes, I said yesterday. I let a whole week go by (mostly

> because the doctor was away at a conference and wasn't going to be there).

> Turns, out they had to cut off his cast (that he only had on for 11 days)

> because of a very, very, very bad pressure sore.

>

> It was so bad, that the nurse gasped when she saw it and told me, " you

> don't want to see this. It's worse than the last one " . Of course I had to

> look and broke down when I saw. His sore was completely open (I thought he

> might need stitches) and you could see into his back. Because of the

> location, they were unable to work around the cast which was why they cut it

off.

>

> Now, what would you do. Shane has very sensitive skin which is why it

> breaksdown quickly. I don't want my baby is any pain or discomfort. But, I

> don't want to have his back cut into for surgery. Do I continue with the

> casting route or just jump head first into VEPTR surgery? What would you do?

>

> I need advice please. I will post the picture of the sore below, but

> please know that THE PICTURE IS GRAPHIC.

>

>

>

>

>

>

> SUZY ºOº

> suzy3333

>