Re: Questions you wished you had asked...

[Guest guest]

I seriously wished I would have known doctors are not always as informed as they

should be EVEN if they are specialized (ortho surgeons).

Tame

Sent from my iPhone

On Feb 10, 2012, at 7:18 PM, " rachelmjacobs " <rachelmjacobs@...> wrote:

Hi everyone. My name is and I'm extremely new to all of this. My daughter

Ella was just diagnosed on Monday and I've spent this entire week researching.

We have an appointment at Cincinnati Children's next week, so I'm trying to

prepare and make myself as knowledgeable as possible.

My question for you all is this: At your child's first appointment was there

something you wished you had asked and didn't?

Also, is there something you wished you had known at the beginning of " your "

journey?

I'm so scared about my daughter's appointment next week. Scared they can't help

her. I'm sure you've all felt the same. It's just so overwhelming.

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

[Guest guest]

Hey --I wish I wouldnt have fallen into the "wait and see" plot. Drs are not always right. Dont be afraid to be your childs advocate and dont be scared to change drs if something doesnt feel right. Time is your best friend and your worst enemy with scoliosis. amandalogan's mama (45 down to 9, 12th cast, 2 years old) From: rachelmjacobs <rachelmjacobs@...> infantile scoliosis treatment Sent: Friday, February 10, 2012 8:18 PM Subject: Questions you wished you had asked...

Hi everyone. My name is and I'm extremely new to all of this. My daughter Ella was just diagnosed on Monday and I've spent this entire week researching. We have an appointment at Cincinnati Children's next week, so I'm trying to prepare and make myself as knowledgeable as possible.

My question for you all is this: At your child's first appointment was there something you wished you had asked and didn't?

Also, is there something you wished you had known at the beginning of "your" journey?

I'm so scared about my daughter's appointment next week. Scared they can't help her. I'm sure you've all felt the same. It's just so overwhelming.

[Guest guest]

,

I see this is the 12th cast for your 2 year old. How old was he when he received

his first one? The reason I ask is because Ella is only 4 1/2 months old. I have

yet to find any information on a child being casted this young, BUT everyone

says that time is of the utmost importance (and I wholeheartedly agree).

>

> Hey --

> I wish I wouldnt have fallen into the " wait and see " plot. Drs are not always

right. Dont be afraid to be your childs advocate and dont be scared to change

drs if something doesnt feel right. Time is your best friend and your worst

enemy with scoliosis.

>  

> amanda

> logan's mama (45 down to 9, 12th cast, 2 years old)

>

>

> ________________________________

> From: rachelmjacobs <rachelmjacobs@...>

> infantile scoliosis treatment

> Sent: Friday, February 10, 2012 8:18 PM

> Subject: Questions you wished you had asked...

>

>

>

>  

>

> Hi everyone. My name is and I'm extremely new to all of this. My

daughter Ella was just diagnosed on Monday and I've spent this entire week

researching. We have an appointment at Cincinnati Children's next week, so I'm

trying to prepare and make myself as knowledgeable as possible.

>

> My question for you all is this: At your child's first appointment was there

something you wished you had asked and didn't?

> Also, is there something you wished you had known at the beginning of " your "

journey?

>

> I'm so scared about my daughter's appointment next week. Scared they can't

help her. I'm sure you've all felt the same. It's just so overwhelming.

>

>

>

[Guest guest]

Hi rachel..my daughter Emma is 4 1/2 months (just as you mentioned your daughter is). Emma was diagnosed with a 37degree curve at 2 months so since then we have spent time researching and seeking treatment. So I understand how overwhelming it is!!! We live in southern delaware and have gotten opinions at AI dupont Childrens Hospital of Philadelphia..both drs there feel strongly that Emma should just be in a brace at this time, not a cast. Emma has no underlying heath conditions. I don't know the details of your daughter diagnosis but because of their similarity in age, I'm curious what treatment advice you get. My advice is to do research so that you can understand the basics of scoliosis treatment options and this will help you come up with questions, but don't overwhelm yourself, as we all know this can happen easily when we search the web! You will constantly come up with questions for the docs..that's part of the journey! Keep me updated on your quest!Sent from my Verizon Wireless BlackBerryFrom: "rachelmjacobs" <rachelmjacobs@...>Sender: infantile scoliosis treatment Date: Sat, 11 Feb 2012 01:18:02 -0000<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Questions you wished you had asked... Hi everyone. My name is and I'm extremely new to all of this. My daughter Ella was just diagnosed on Monday and I've spent this entire week researching. We have an appointment at Cincinnati Children's next week, so I'm trying to prepare and make myself as knowledgeable as possible. My question for you all is this: At your child's first appointment was there something you wished you had asked and didn't?Also, is there something you wished you had known at the beginning of " your " journey?I'm so scared about my daughter's appointment next week. Scared they can't help her. I'm sure you've all felt the same. It's just so overwhelming.

[Guest guest]

,

We get casted in Cincinnati with Dr. S and we feel that we are getting top notch care. Our son Brayden is in his first cast and started at 15 months because we waited to see if it would resolve. The good thing has always been when we thought of questions later, we just email them or call the nurse and they get us the answers.

Where are you from? We are in the Columbus area and there are a bunch of families between here and Cincy that get casted there, if that tells you anything. If you have any specific questions, feel free to email me or my wife Eryn Dennis (she is on here too).

Curt

From: rachelmjacobs <rachelmjacobs@...>infantile scoliosis treatment Sent: Friday, February 10, 2012 8:18 PMSubject: Questions you wished you had asked...

Hi everyone. My name is and I'm extremely new to all of this. My daughter Ella was just diagnosed on Monday and I've spent this entire week researching. We have an appointment at Cincinnati Children's next week, so I'm trying to prepare and make myself as knowledgeable as possible. My question for you all is this: At your child's first appointment was there something you wished you had asked and didn't?Also, is there something you wished you had known at the beginning of "your" journey?I'm so scared about my daughter's appointment next week. Scared they can't help her. I'm sure you've all felt the same. It's just so overwhelming.

[Guest guest]

Question I wish I had asked or glad I did:Cobb Angle (remember there is a difference between standing and laying down)RVADRotation - How muchWhere the curve is located and how it impacts treatment.

Their experience with casting - both how many kids and their outcomesChilds flexibilityChilds lung and heart functioning?  Is the curve likely impacting these things or not right now?What is their prognosis - they will not give you a guarantee but should be able to say form the look of it I would expect ... complete correction ... to avoid surgery ...  surgery at some point

How does treatment typically go? casting until what degree? Then bracing for how long? What will the follow up schedule likely be - yearly until done growing?  More, less?If we are not getting good results how long will you cast?  As long as I want?  For a year?  

If I have a problem who do a call and how long will it take to get back in?  - thinking of things like a cracked cast where it may need to be replacedHow will the actual casting process go? Get there, check in, do you get to go back while they are given the anesthesia?  If not do they give them anxiety meds?  When can you get back to see them after the procedure? How long do they keep you?  

Also make sure they use a t-shirt, plaster and fiber glass. Do they do the correct mushroom cut out in the font and the d shape in the back. Will they do over the shoulder or under the shoulder casting? Over the shoulder is necessary for higher curves.  

Do they have a child frame that can address all 3 dimensions of scoliosis - not just a risser frame.How to schedule casting and appointments.  How hard is it? Sound ridiculous but I know some people who have a very hard time getting appointments scheduled or have to schedule a week before and don't have time to plan and it is stressful.  Others schedule right there. 

Are their local accommodation arrangements for hospital patients.  Sometimes you will be able to get hotel discounts. Also possibly ask about emergency situations - CPR or himlic in cast - - you can totally do it, but you may want them to show you.  

Also I just want to mention that you need to see how your doctor interacts with your child - they will likely be working with your child for a decade+!  They need to be great with your kid. Also Do they answer your questions and give you the time you need.  As a parent I want to feel that you are going to address all of my concerns and not make me feel like you think I am being ridiculous of that they are the dr and know better, thus I shouldn't question.  

I am not familiar with your hospital but these are the things I found helpful. Sorry for the super long list! Jenn Mommy to Cole & Max

[Guest guest]

Jenn,

If I could see you in person I would hug you! Thank you. Your answer was what I

was hoping for, because while I had thought of some of those questions, there

were definately others I had NOT thought of. Thank you so much.

Momma to Ella, 4 1/2 months

>

> Question I wish I had asked or glad I did:

>

> 1. Cobb Angle (remember there is a difference between standing and

> laying down)

> 2. RVAD

> 3. Rotation - How much

> 4. Where the curve is located and how it impacts treatment.

> 5. Their experience with casting - both how many kids and their outcomes

> 6. Childs flexibility

> 7. Childs lung and heart functioning? Is the curve likely impacting

> these things or not right now?

> 8. What is their prognosis - they will not give you a guarantee but

> should be able to say form the look of it I would expect ... complete

> correction ... to avoid surgery ... surgery at some point

> 9. How does treatment typically go? casting until what degree? Then

> bracing for how long? What will the follow up schedule likely be - yearly

> until done growing? More, less?

> 10. If we are not getting good results how long will you cast? As long

> as I want? For a year?

> 11. If I have a problem who do a call and how long will it take to get

> back in? - thinking of things like a cracked cast where it may need to be

> replaced

> 12. How will the actual casting process go? Get there, check in, do you

> get to go back while they are given the anesthesia? If not do they give

> them anxiety meds? When can you get back to see them after the procedure?

> How long do they keep you?

> 13. Also make sure they use a t-shirt, plaster and fiber glass.

> 14. Do they do the correct mushroom cut out in the font and the d shape

> in the back.

> 15. Will they do over the shoulder or under the shoulder casting? Over

> the shoulder is necessary for higher curves.

> 16. Do they have a child frame that can address all 3 dimensions of

> scoliosis - not just a risser frame.

> 17. How to schedule casting and appointments. How hard is it? Sound

> ridiculous but I know some people who have a very hard time getting

> appointments scheduled or have to schedule a week before and don't have

> time to plan and it is stressful. Others schedule right there.

> 18. Are their local accommodation arrangements for hospital patients.

> Sometimes you will be able to get hotel discounts.

> 19. Also possibly ask about emergency situations - CPR or himlic in cast

> - - you can totally do it, but you may want them to show you.

>

> Also I just want to mention that you need to see how your doctor interacts

> with your child - they will likely be working with your child for a

> decade+! They need to be great with your kid. Also Do they answer your

> questions and give you the time you need. As a parent I want to feel that

> you are going to address all of my concerns and not make me feel like you

> think I am being ridiculous of that they are the dr and know better, thus I

> shouldn't question.

>

> I am not familiar with your hospital but these are the things I found

> helpful.

>

> Sorry for the super long list!

>

> Jenn

> Mommy to Cole & Max

>

[Guest guest]

Those are all very good points, Jenn.

[Guest guest]

You are very welcome. Also what age would you recommend starting casting?  And is there any risk of starting early - under a year such as softer bones and rib deformities.  Some how I missed that she was so young.  I think Mehta started at a year, but I know kids here who have been casted younger.  

Feel free to email me me directly if you have any other questions.Jenn Mommy to Cole & Max

[Guest guest]

Jenn's list of questions is awesome. You should publish this to the website!

I am submitting my one year old son's application to Shriners this week and

these are great things to think about.

Delinda

Mom to

[Guest guest]

Amen, Tame! Some doctors are informed of the most up-to-date treatments,

and some aren't. The problem is figuring out which category your dr falls

into...they'll never say, " Well, I haven't really kept up. " Nor will they

say, " I don't know. " They are trained to give you an informed opinion.

Determining when they are blowing smoke is the hard part.

Sherry

Re: Questions you wished you had asked...

I seriously wished I would have known doctors are not always as informed as

they should be EVEN if they are specialized (ortho surgeons).

Tame

Sent from my iPhone

On Feb 10, 2012, at 7:18 PM, " rachelmjacobs " <rachelmjacobs@...>

wrote:

Hi everyone. My name is and I'm extremely new to all of this. My

daughter Ella was just diagnosed on Monday and I've spent this entire week

researching. We have an appointment at Cincinnati Children's next week, so

I'm trying to prepare and make myself as knowledgeable as possible.

My question for you all is this: At your child's first appointment was there

something you wished you had asked and didn't?

Also, is there something you wished you had known at the beginning of " your "

journey?

I'm so scared about my daughter's appointment next week. Scared they can't

help her. I'm sure you've all felt the same. It's just so overwhelming.

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

[Guest guest]

,

I can’t answer your question because

I can barely remember how things went. I was so upset, it was hard to

think straight. I do remember that they provided all the information I

needed at the appts. It wasn’t all the info I wanted, but it was

everything I needed.

I wanted to assure you that you are where

so many of us have been – with tons of unanswered questions and a lot of trepidation.

I also want to assure you that as you think of questions, we are here to

answer. The dr’s staff should also be available to answer questions,

too. I will warn you that there are questions that no one will be able to

answer for only time will provide some answers. That’s not a

comfortable place to be. Dealing with that does become easier. But

don’t ever hesitate to ask a question again and again of various people…

Best wishes,

Sherry

Questions you wished you had asked...

Hi everyone. My name is and I'm extremely new

to all of this. My daughter Ella was just diagnosed on Monday and I've spent

this entire week researching. We have an appointment at Cincinnati Children's

next week, so I'm trying to prepare and make myself as knowledgeable as

possible.

My question for you all is this: At your child's first appointment was there

something you wished you had asked and didn't?

Also, is there something you wished you had known at the beginning of

" your " journey?

I'm so scared about my daughter's appointment next week. Scared they can't help

her. I'm sure you've all felt the same. It's just so overwhelming.