Re: Computer back up

[Guest guest]

,

We live closer to Philadelphia, but we'll keep in mind about Rochester, just in case. And we're hoping they'll take a look at her records and give us their opinion. Thanks for letting me know about Rochester. If you don't mind my asking, how old is your daughter? How many casts has she had?

Jay

From: <christina_borlik@ hotmail.com>Subject: [infantile_scoliosi s] Re: Computer back upTo: infantile_scoliosis @yahoogroups. comDate: Thursday, September 11, 2008, 1:59 PM

Hi Jay,I'm not sure where you go for treatment, but was your daughter placed on a special table? I'm sure others will chime in on this, but I'm willing to bet that her rotation wasn't improved if she wasn't placed on a AIML table (or Risser table or traction table - it goes by so many different names!) If your hospital doesn't have one - you might want to look into this for the next casting. I believe you said you were considering Philly. is a great resourse and has the most knowledge about the tables. I'd check with her if you have questions.As far as the skin irratations go - I'd suggest Calendula Cream or Aquaphor. They both helped us tremedously.Let me know if I can be of any help. Welcome to the group!~Noah 3 years oldIn 2nd brace after 9 months of casts> > > > From: redrockerb212 <redrockerb212@ yahoo.com>> > Subject: [infantile_scoliosi s] Computer back up> > To: infantile_scoliosis @yahoogroups. com> > Date: Tuesday, September 9, 2008, 6:05 PM> > > > > > > > > > Hi Everyone,> > Our computer has been down for a while now. We finally got > technicians > > out to fix the dsl line for the third time in the past couple > weeks. > > I've been on here reading up on what has happened and

been posted > over > > the past few weeks that we've been without internet. I hope > everyone is > > doing well. Our daughter has been casted in her first cast for a > couple > > weeks now, and she got improvement from 40+ degrees to 27 degrees > in > > her first cast. However the RVAD didn't show much improvement. It's > > still over 50. Thanks again to everyone for all your great advice. > We > > are going to contact the Philadelphia Shriners to see if they will > look > > over her records and if they think they can do something more. > Right > > now our doctor is suggesting that she will still need surgery, and > I > > think he said her curve rotation is rigid. , you said Dr. > Asghar > > in in Philadelphia once a week, is that correct? We will be going

> out > > of town next week for a couple weeks, but want to send him her > records > > before we leave. Thanks again to everyone! You all give such good > > information. Your kids are lucky to have such caring parents!> >>

[Guest guest]

Hi there,

I hope it is OK to mention doctors' names, generally, in this way.

Since his name was already brought up, I just wanted to clarify that

Dr. Asghar is not at Shriners once a week, he is on their staff on a

FULL-TIME basis.

I have his e-mail address if you want to e-mail me at

mariaf305@..., I'd be happy to provide it. Or you can just

call the hospital at 1-.

The best way to reach him regarding casting or any part of his

practice is through Janet Cerrone, same phone number - or by e-mail

at janetcerrone@.... But Dr. Asghar also is pretty good

about answering his e-mails directly from what I understand.

Good luck!

>

> Hi Everyone,

> Our computer has been down for a while now. We finally got

technicians

> out to fix the dsl line for the third time in the past couple

weeks.

> I've been on here reading up on what has happened and been posted

over

> the past few weeks that we've been without internet. I hope

everyone is

> doing well. Our daughter has been casted in her first cast for a

couple

> weeks now, and she got improvement from 40+ degrees to 27 degrees

in

> her first cast. However the RVAD didn't show much improvement. It's

> still over 50. Thanks again to everyone for all your great advice.

We

> are going to contact the Philadelphia Shriners to see if they will

look

> over her records and if they think they can do something more.

Right

> now our doctor is suggesting that she will still need surgery, and

I

> think he said her curve rotation is rigid. , you said Dr.

Asghar

> in in Philadelphia once a week, is that correct? We will be going

out

> of town next week for a couple weeks, but want to send him her

records

> before we leave. Thanks again to everyone! You all give such good

> information. Your kids are lucky to have such caring parents!

>

[Guest guest]

Hi Jay,

The reason I mentioned Rochester is that both docs there are very experienced.... Our casting doc has published an article with the doc from SLC about Et and you can read the article.... It's on our website. The docs at Rochester will absolutely look at your records and give you an opinion.... If you don't hear from them within a week, then do give them a call to follow up. Rochester is private practice so you would need to see if either doc is in network for you first.

I know we are all asking you a lot of questions about your doc's casting frame and I would hate to badger you about it.... It is very tedious to properly modify an adult casting frame (Risser) to correctly address the needs of a child... especially the rotation in the spine. It can be done, but given that most of us are not familiar with your doc we just want to make sure that your precious baby is getting the most optimum results possible.... Please don't be offended.... I mean this to be taken as one parent who is going through this to another.... I didn't know about the casting frame initially and almost went with a facility that didn't have one until I spoke with another mom from this group who informed me about it...

Noelle will be 2 on September 29th.... Her scoli was obvious at birth by way of a prominent right rib bulge. However her pediatrician dismissed it as positioning in utero and said it would resolve on it's own. When it didn't he said that she was growing assymetrically and she would eventually even out. At her 11 month well-visit, I explained how she still could not sit up straight and that she would crawl more so in the direction of the curve then against it... He ordered x-rays and Noelle was at 39 degrees right thoracic with an RVAD of 21. 6 weeks later I had an appointment at NYU and she was at 56 degrees! I got an appointment with her her current casting doc who was at Erie Shriners (now relocated to Rochester) and she went down to 35 degrees in about 5 weeks. We thought that she might be resolving on her own. Follow up x-rays were taken 3 months later and her curve was back up to 45

degrees. We took her to Rochester to be casted at 18 months and she is currently in cast number 3. We go back for a cast change at the beginning of October. Currently in cast, her spinal rotation went from a level 2 to zero and her RVAD is about 5 and her curves are in the single digits... (she has 2 compensatory curves as well) I wish we could have started this process earlier.... My gut told me something was not quite right with that rib-bulge, but I had no idea that it was something like this!!!!

Okay... Sorry to ramble on! Ask me anything you like..... If you want to call me or e-mail me off line, feel free.... I'll give you my number if you e-mail me privately and be glad to speak with you and/or your wife. Sometimes it's nice to talk to someone "live" about this stuff!!!! Glad that your little girl is doing so well!!! Steph

From: <christina_borlik@ hotmail.com>Subject: [infantile_scoliosi s] Re: Computer back upTo: infantile_scoliosis @yahoogroups. comDate: Thursday, September 11, 2008, 1:59 PM

Hi Jay,I'm not sure where you go for treatment, but was your daughter placed on a special table? I'm sure others will chime in on this, but I'm willing to bet that her rotation wasn't improved if she wasn't placed on a AIML table (or Risser table or traction table - it goes by so many different names!) If your hospital doesn't have one - you might want to look into this for the next casting. I believe you said you were considering Philly. is a great resourse and has the most knowledge about the tables. I'd check with her if you have questions.As far as the skin irratations go - I'd suggest Calendula Cream or Aquaphor. They both helped us tremedously.Let me know if I can be of any help. Welcome to the group!~Noah 3 years oldIn 2nd brace after 9 months of casts> > > > From: redrockerb212 <redrockerb212@ yahoo.com>> > Subject: [infantile_scoliosi s] Computer back up> > To: infantile_scoliosis @yahoogroups. com> > Date: Tuesday, September 9, 2008, 6:05 PM> > > > > > > > > > Hi Everyone,> > Our computer has been down for a while now. We finally got > technicians > > out to fix the dsl line for the third time in the past couple > weeks. > > I've been on here reading up on what has happened and

been posted > over > > the past few weeks that we've been without internet. I hope > everyone is > > doing well. Our daughter has been casted in her first cast for a > couple > > weeks now, and she got improvement from 40+ degrees to 27 degrees > in > > her first cast. However the RVAD didn't show much improvement. It's > > still over 50. Thanks again to everyone for all your great advice. > We > > are going to contact the Philadelphia Shriners to see if they will > look > > over her records and if they think they can do something more. > Right > > now our doctor is suggesting that she will still need surgery, and > I > > think he said her curve rotation is rigid. , you said Dr. > Asghar > > in in Philadelphia once a week, is that correct? We will be going

> out > > of town next week for a couple weeks, but want to send him her > records > > before we leave. Thanks again to everyone! You all give such good > > information. Your kids are lucky to have such caring parents!> >>

[Guest guest]

,

Don't apologize for asking questions, I'm glad everyone is asking and giving info...it's very helpful. My wife has done tons of research as well, and when I tell her of things someone has mentioned from this website group, she's always so thankful to have more info. It sounds like you have had great results with Rochester! We're getting her medical records next week, and then we'll be looking to send them to 1 or 2 places to get second opinions. The doctor your daughter sees-is that doctor still in Rochester? Thanks.

Jay

From: <christina_borlik@ hotmail.com>Subject: [infantile_scoliosi s] Re: Computer back upTo: infantile_scoliosis @yahoogroups. comDate: Thursday, September 11, 2008, 1:59 PM

Hi Jay,I'm not sure where you go for treatment, but was your daughter placed on a special table? I'm sure others will chime in on this, but I'm willing to bet that her rotation wasn't improved if she wasn't placed on a AIML table (or Risser table or traction table - it goes by so many different names!) If your hospital doesn't have one - you might want to look into this for the next casting. I believe you said you were considering Philly. is a great resourse and has the most knowledge about the tables. I'd check with her if you have questions.As far as the skin irratations go - I'd suggest Calendula Cream or Aquaphor. They both helped us tremedously.Let me know if I can be of any help. Welcome to the group!~Noah 3 years oldIn 2nd brace after 9 months of casts> > > > From: redrockerb212 <redrockerb212@ yahoo.com>> > Subject: [infantile_scoliosi s] Computer back up> > To: infantile_scoliosis @yahoogroups. com> > Date: Tuesday, September 9, 2008, 6:05 PM> > > > > > > > > > Hi Everyone,> > Our computer has been down for a while now. We finally got > technicians > > out to fix the dsl line for the third time in the past couple > weeks. > > I've been on here reading up on what has happened and

been posted > over > > the past few weeks that we've been without internet. I hope > everyone is > > doing well. Our daughter has been casted in her first cast for a > couple > > weeks now, and she got improvement from 40+ degrees to 27 degrees > in > > her first cast. However the RVAD didn't show much improvement. It's > > still over 50. Thanks again to everyone for all your great advice. > We > > are going to contact the Philadelphia Shriners to see if they will > look > > over her records and if they think they can do something more. > Right > > now our doctor is suggesting that she will still need surgery, and > I > > think he said her curve rotation is rigid. , you said Dr. > Asghar > > in in Philadelphia once a week, is that correct? We will be going

> out > > of town next week for a couple weeks, but want to send him her > records > > before we leave. Thanks again to everyone! You all give such good > > information. Your kids are lucky to have such caring parents!> >>

[Guest guest]

Yes... he's there and there is another excellent casting doc there as well.... Either doc would be a terrific choice. If you need info. about them or decide to go there and want info. on places to stay, etc. let me know. If you have any questions specific to my doc, e-mail me off-line and I'll answer as best as I can. He has a lot of experience and we are very comfortable with Rochester. How is Emma adjusting? Steph

From: <christina_borlik@ hotmail.com>Subject: [infantile_scoliosi s] Re: Computer back upTo: infantile_scoliosis @yahoogroups. comDate: Thursday, September 11, 2008, 1:59 PM

Hi Jay,I'm not sure where you go for treatment, but was your daughter placed on a special table? I'm sure others will chime in on this, but I'm willing to bet that her rotation wasn't improved if she wasn't placed on a AIML table (or Risser table or traction table - it goes by so many different names!) If your hospital doesn't have one - you might want to look into this for the next casting. I believe you said you were considering Philly. is a great resourse and has the most knowledge about the tables. I'd check with her if you have questions.As far as the skin irratations go - I'd suggest Calendula Cream or Aquaphor. They both helped us tremedously.Let me know if I can be of any help. Welcome to the group!~Noah 3 years oldIn 2nd brace after 9 months of casts> > > > From: redrockerb212 <redrockerb212@ yahoo.com>> > Subject: [infantile_scoliosi s] Computer back up> > To: infantile_scoliosis @yahoogroups. com> > Date: Tuesday, September 9, 2008, 6:05 PM> > > > > > > > > > Hi Everyone,> > Our computer has been down for a while now. We finally got > technicians > > out to fix the dsl line for the third time in the past couple > weeks. > > I've been on here reading up on what has happened and

been posted > over > > the past few weeks that we've been without internet. I hope > everyone is > > doing well. Our daughter has been casted in her first cast for a > couple > > weeks now, and she got improvement from 40+ degrees to 27 degrees > in > > her first cast. However the RVAD didn't show much improvement. It's > > still over 50. Thanks again to everyone for all your great advice. > We > > are going to contact the Philadelphia Shriners to see if they will > look > > over her records and if they think they can do something more. > Right > > now our doctor is suggesting that she will still need surgery, and > I > > think he said her curve rotation is rigid. , you said Dr. > Asghar > > in in Philadelphia once a week, is that correct? We will be going

> out > > of town next week for a couple weeks, but want to send him her > records > > before we leave. Thanks again to everyone! You all give such good > > information. Your kids are lucky to have such caring parents!> >>