Re: Prader Willi, Erie vs Rochester vs Philly etc

July 27, 2011

Can't help w docs but have an idea. While you are deciding see if there is a Mc House in Philly. If there is, that would help ease financial issues. They provide 3 meals a day and charge $15 per night to stay there. We travel 8 hrs to Dallas and always stay at the RMH. Good luck deciding. TameSent from my iPhoneOn Jul 27, 2011, at 11:20 AM, Bystrak <ebystrak@...> wrote:e jus=

t got the devastating news that we will no longer be able to be casted at t=

he Erie Shriners.=C2=A0 Violet has Prader-Willi Syndrome and her doctor req=

uires her to be admitted to the hospital for an overnight stay after her ca=

st is put on.=C2=A0 It seems the Erie Shriners is ending their inpatient ca=

re so if we stay with our current doc (who we LOVE) we have to travel to Ph=

iladelphia for treatment.=C2=A0 It's about an 8 hour drive from our house, =

versus Erie which was only an hour and a half.=C2=A0 BTW- this change at th=

e Erie Shriners shouldn't affect any other casting patients that go there.=

=C2=A0 I don't want to panic anyone!=C2=A0 I was told we are their only cas=

ting patient who requires an overnight stay.

Anyway, here is the dillema.=C2=A0 We have to choose whether to A. follow o=

ur doctor to Philly (again, we are very happy with him!) or B. switch to Dr=

.. in Rochester.=C2=A0 I have read a lot about the Rochester practic=

e and know many of you go there.=C2=A0 Rochester is only about an hour driv=

e from our house- much closer than Philly.

We are torn.=C2=A0 We are new to casting- Vi has only had a cast for five w=

eeks!=C2=A0 But both doctor's (in Philly and Rochester) want to change her =

every two months- Philly will be very difficult to manage with work, expens=

e, etc.=C2=A0=20

So I am looking for input.=C2=A0 If you go to either Philly or Rochester, w=

ould you share your thoughts with me? =C2=A0=C2=A0 If you see either Dr. Sa=

nders or Dr. Van Bose, would you contact me?=C2=A0 If your child has PWS, I=

'm also curious where you go and how the treatment is working.=C2=A0=20

I thought we had things all worked out- I'm very worried about this whole t=

hing!=20

Thanks in advance for your help!

Liz

________________________________

From: NIck Guthe

infantile scoliosis treatment

Sent: Wednesday, July 20, 2011 9:10 PM

Subject: Re: Scoliosis Book!

=C2=A0=20

Love it! I'm so excited for Bex to have the book in his hands, too. I'm goi=

ng to give the others as gifts and one to Bex's preschool. Maybe the local =

library, as well.

=C2=A0Heidi, Bexon's Mommy, (4 years old, 10 casts from Salt Lake City Shri=

ners, currently down from 63 degrees to 10.9 in first brace. You can read B=

exon's Story on www.GirltoMom.com)

________________________________

From: Leggett

infantile scoliosis treatment

Sent: Wed, July 20, 2011 3:34:16 PM

Subject: Re: Scoliosis Book!

=C2=A0=20

Heidi -Thank you so much for supporting the book! I can't wait to get a cop=

y in my boys hands! =C2=A0For $150 you get 9 books and a Thank You mention =

in the book! I will email you some pictures from the book tonight! I can al=

so send them to anyone else who needs them too!=C2=A0

For everyone else, we are 5% of the way to our goal and we have 86 days lef=

t! =C2=A0I forgot to mention that if we raise all $6500 we get a 4% bonus f=

orm the place we are going through to raise the money!=C2=A0

Jenn=C2=A0

Mommy to Cole & Max

=20

--0-78616854-1311783616=:74771

Content-Type: text/html; charset=UTF-8

Content-Transfer-Encoding: 7bit

Hello, My daughter is currently in her first cast, which was put on at the end of June. She is doing better than we could have imagined, however we just got the devastating news that we will no longer be able to be casted at the Erie Shriners. Violet has Prader-Willi Syndrome and her doctor requires her to be admitted to the hospital for an overnight stay after her cast is put on. It seems the Erie Shriners is ending their inpatient care so if we stay with our current doc (who we LOVE) we have to travel to Philadelphia for treatment. It's about an 8 hour drive from our house, versus Erie which was only an hour and a half. BTW- this change at the Erie Shriners shouldn't affect any other casting patients that go there. I

don't want to panic anyone! I was told we are their only casting patient who requires an overnight stay.Anyway, here is the dillema. We have to choose whether to A. follow our doctor to Philly (again, we are very happy with him!) or B. switch to Dr. in Rochester. I have read a lot about the Rochester practice and know many of you go there. Rochester is only about an hour drive from our house- much closer than Philly.We are torn. We are new to casting- Vi has only had a cast for five weeks! But both doctor's (in Philly and Rochester) want to change her every two months- Philly will be very difficult to manage with work, expense, etc. So I am looking for input. If you go to either Philly or Rochester, would you share your thoughts with me?

If you see either Dr. or Dr. Van Bose, would you contact me? If your child has PWS, I'm also curious where you go and how the treatment is working. I thought we had things all worked out- I'm very worried about this whole thing! Thanks in advance for your help!LizFrom: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Wednesday, July 20, 2011

9:10 PMSubject: Re: Scoliosis Book!

Love it! I'm so excited for Bex to have the book in his hands, too. I'm going to give the others as gifts and one to Bex's preschool. Maybe the local library, as well. Heidi, Bexon's Mommy, (4 years old, 10 casts from Salt Lake City Shriners, currently down from 63 degrees to 10.9 in first brace. You can read Bexon's Story on www.GirltoMom.com)

July 27, 2011

We see dr, S and I can only say positive things about our experience. I could not imagine a better dr. HE bedside manor is amazing. When I have had concerns at home, he has always called me back personally. He responds very quickly, usually within a couple hours to emails.

If you want to know more feel free to email me directly. We can also chat on the phone if you would like.Jenn Mommy to Colr & Max

July 28, 2011

I go to Rochester for my son Caden, and I am glad I made the choice. I brought my son at first to Philly and was not pleased. I then brought my son to Hospital for Special Surgery in New York City and they referred me to Strong Memorial up in Rochester. The doctor (who is referred as "Dr. R") was a resident at HSS and was going to come down to the city to cast my son. However, it was less costly for me to go to him in Rochester, even though Manhattan was only 70 min. vs. driving 4 hrs to Rochester. My husband and I couldn't be more please with the Hospital. My son started off with a 54 degree curve and after 9 casts and 3 braces, he still holding at 6 degrees. Dr. R suggested no brace for 6 months to see if the spine remains, but my husband and

I were nervous about that and insisted on a brace so he now wears a "night brace" which is more flexible than a regular one.

Jeannette McNally

From: Bystrak <ebystrak@...>"infantile scoliosis treatment " <infantile scoliosis treatment >Sent: Wednesday, July 27, 2011 12:20 PMSubject: Prader Willi, Erie vs Rochester vs Philly etc

Hello,

My daughter is currently in her first cast, which was put on at the end of June. She is doing better than we could have imagined, however we just got the devastating news that we will no longer be able to be casted at the Erie Shriners. Violet has Prader-Willi Syndrome and her doctor requires her to be admitted to the hospital for an overnight stay after her cast is put on. It seems the Erie Shriners is ending their inpatient care so if we stay with our current doc (who we LOVE) we have to travel to Philadelphia for treatment. It's about an 8 hour drive from our house, versus Erie which was only an hour and a half. BTW- this change at the Erie Shriners shouldn't affect any other casting patients that go there. I don't want to panic anyone! I was told we are their only casting patient who requires an overnight stay.

Anyway, here is the dillema. We have to choose whether to A. follow our doctor to Philly (again, we are very happy with him!) or B. switch to Dr. in Rochester. I have read a lot about the Rochester practice and know many of you go there. Rochester is only about an hour drive from our house- much closer than Philly.

We are torn. We are new to casting- Vi has only had a cast for five weeks! But both doctor's (in Philly and Rochester) want to change her every two months- Philly will be very difficult to manage with work, expense, etc.

So I am looking for input. If you go to either Philly or Rochester, would you share your thoughts with me? If you see either Dr. or Dr. Van Bose, would you contact me? If your child has PWS, I'm also curious where you go and how the treatment is working.

I thought we had things all worked out- I'm very worried about this whole thing!

Thanks in advance for your help!

Liz

From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Wednesday, July 20, 2011 9:10 PMSubject: Re: Scoliosis Book!

Love it! I'm so excited for Bex to have the book in his hands, too. I'm going to give the others as gifts and one to Bex's preschool. Maybe the local library, as well.

Heidi, Bexon's Mommy, (4 years old, 10 casts from Salt Lake City Shriners, currently down from 63 degrees to 10.9 in first brace. You can read Bexon's Story on www.GirltoMom.com)

From: Leggett <jennifer.leggett@...>infantile scoliosis treatment Sent: Wed, July 20, 2011 3:34:16 PMSubject: Re: Scoliosis Book!

Heidi -Thank you so much for supporting the book! I can't wait to get a copy in my boys hands! For $150 you get 9 books and a Thank You mention in the book! I will email you some pictures from the book tonight! I can also send them to anyone else who needs them too!

For everyone else, we are 5% of the way to our goal and we have 86 days left! I forgot to mention that if we raise all $6500 we get a 4% bonus form the place we are going through to raise the money!

Jenn

Mommy to Cole & Max

July 28, 2011

I can tell you that Shriner's in Philly has parent apartments on the 8th floor for them to stay in. I am told that one parent can stay at bedside (if they choose to). But the parent apartments are available (and I don't believe they charge for them). I was offered to stay in one when Shane had cast #2 put on there (his first time being treated at Shriner's) but I declined. Shane wanted to go home and I didn't want to put more stress on him.I know nothing about Rochester so I can't comment on that. I can tell you that Philly Shriner's (Dr. C) was highly recommended by and other members and I am extremely happy there (even with the outcome of cast #3).SuzanneSent from my iPhoneOn Jul 27, 2011, at 12:38 PM, Tame Olson <dazies2001@...> wrote: