Re: More Questions from NewbiE

[Guest guest]

Dawn-

The downside to banding early is that you could get the desired

correction from repositioning alone. The earlier you band, the

better correction you should see due to the growth.

You are lucky that you live in KC. You can get either band there.

Of course the CT people are great, but I have heard very impressive

things about the STARband orthotists there as well. The bands are

only as good as the orthotist who uses them. The CT people only do

bands while the STARband orthos do other things.

Hopefully someone will chime in from KC!

You may want to interview both. Call Rehab Designs of America and

see if they have free consults. I'm sorry but I do not know the

name of the STARband group.

Dane's mom DOC Grad

> Hi Everyone,

>

> Thank you so much for the instant support and words of

encouragement!

>

> I have two more questions:

>

> 1. Is there a downside to starting the helmet ASAP rather than

waiting to see

> if his head will reshape?

>

> 2. I have read about the two types of helmets and have noticed

that a lot of

> people state which one they used. Since you all have so much

experience,

> can you tell me which one is best?

>

> For those of you that asked, I live in the Kansas City area.

>

> Thanks again for all of the support. It is great to see other

parents that care so

> very much and have so much experience with this.

>

> Dawn Fire

> Proud mom of Brock :-)

[Guest guest]

--For some reason i haven't been getting my individuals emails in my

in box. I wanted to tell Dawm that i live in Blue Springs Missouri.

We got to Hanger Prosthetics & Orthotics. Thers is one in

Independence and I think the other is in Leawood. They do the

Starband. Jenna has had hers since 10/21. We go to the Independence

office. I know other member of the group goes to the Leawood

office. I am sorry since i haven't received emails I haven't heard

all the details. Have you seen a specialst. We go to Dr. Singhal at

Childrens Mercy.

Angie and Jenna banded at 9 months

- In Plagiocephaly , " rmanias <rmanias@a...> "

<rmanias@a...> wrote:

> Dawn-

> The downside to banding early is that you could get the desired

> correction from repositioning alone. The earlier you band, the

> better correction you should see due to the growth.

> You are lucky that you live in KC. You can get either band there.

> Of course the CT people are great, but I have heard very impressive

> things about the STARband orthotists there as well. The bands are

> only as good as the orthotist who uses them. The CT people only do

> bands while the STARband orthos do other things.

> Hopefully someone will chime in from KC!

> You may want to interview both. Call Rehab Designs of America and

> see if they have free consults. I'm sorry but I do not know the

> name of the STARband group.

>

> Dane's mom DOC Grad

>

>

> > Hi Everyone,

> >

> > Thank you so much for the instant support and words of

> encouragement!

> >

> > I have two more questions:

> >

> > 1. Is there a downside to starting the helmet ASAP rather than

> waiting to see

> > if his head will reshape?

> >

> > 2. I have read about the two types of helmets and have noticed

> that a lot of

> > people state which one they used. Since you all have so much

> experience,

> > can you tell me which one is best?

> >

> > For those of you that asked, I live in the Kansas City area.

> >

> > Thanks again for all of the support. It is great to see other

> parents that care so

> > very much and have so much experience with this.

> >

> > Dawn Fire

> > Proud mom of Brock :-)

[Guest guest]

Dawn,

I agree with , the only down side is that some people get

great correction through repositioning alone. Also, some people

worry that by starting early the baby will finish treatment early and

possibly regress. It is very, very uncommon for a baby to regress,

but that is something that has been of concern to some of our

members. The earlier the better really. Growth spurts are more

frequent when they are little bitty so correction tends to come

faster and tends to be more complete.

You've received some good posts about the STAR and DOC

band so I'll leave that to the experts - my daughter wore a locally

made helmet so we don't have personal experience with either

of the bands.

Marci (mom to )

Oklahoma

> Hi Everyone,

>

> Thank you so much for the instant support and words of

encouragement!

>

> I have two more questions:

>

> 1. Is there a downside to starting the helmet ASAP rather than

waiting to see

> if his head will reshape?

>

> 2. I have read about the two types of helmets and have noticed

that a lot of

> people state which one they used. Since you all have so much

experience,

> can you tell me which one is best?

>

> For those of you that asked, I live in the Kansas City area.

>

> Thanks again for all of the support. It is great to see other

parents that care so

> very much and have so much experience with this.

>

> Dawn Fire

> Proud mom of Brock :-)

[Guest guest]

, I heart goes out to you and to the baby. Nothing

breaks our hearts so much as knowing that a child has to

go through many medical procedures so young.

You may be lucky that you live in Ohio. The Cleveland Clinic

has an entire unit dealing with swallowing disorders. I am

sure others who have actually been there will chime in and

tell you a lot more about it. A number of members here have

actually traveled many miles to go there.

Hugs to you and DS

Maggie

AL

[Guest guest]

I am in Ohio, but am willing to travel. There are resources available

to assist children & caregivers with travel.

> -- where do you live? .

>

> Debbi in Michigan

[Guest guest]

I totally agree with Maggie -- if I were anywhere in the Midwest, I

would go straight to Cleveland to get my own son treated.

I actually live in Michigan and travel to Cleveland myself after

finding out (the hard way) that the doctors within 2 hours of me

weren't experienced enough to treat me properly.

Please give the doctors at The Cleveland Clinic a call about your

son's condition:

http://www.clevelandclinic.org/

Debbi in Michigan

On 6/25/05, jenn_spiess <jenn_spiess@...> wrote:

> I am in Ohio, but am willing to travel. There are resources available

> to assist children & caregivers with travel.

>

>

[Guest guest]

Thank you Debbi & Maggie for info on The Cleveland Clinic. I already

travel 2 1/2 hours south to Cincinnati to see his ped gi. It would

only be 2 1/2 hours north to go to Cleveland. Do the same dr's treat

the children & the adults there?

> I totally agree with Maggie -- if I were anywhere in the Midwest, I

> would go straight to Cleveland to get my own son treated.

>

>

> http://www.clevelandclinic.org/

>

> Debbi in Michigan

[Guest guest]

I'm not sure about that, . Being 36yo myself, it never occurred to me to ask.... however, a quick check of their website shows that the Children's Hospital has a GI department. (see link and/or copied text below)

I know that the last few people who went to TCC's adult GI department got in pretty quickly (a couple of weeks, maybe), but I have no idea about the child GI dept.

Another thing -- when you call, make sure that they know you'll be traveling. The adult GI dept has always made a point to cluster testing together for out-of-towners, so that you're not there all week waiting to take different tests every other day.

Debbi

http://cms.clevelandclinic.org/childrenshospital/body.cfm?id=79

Pediatric gastroenterologists are physician specialists who care for children with problems of the gastrointestinal tract, including the esophagus, stomach, large and small bowel, liver and pancreas. Gastrointestinal disorders in children range from minor to life-threatening, and short- to long-term, or chronic. Among the childhood gastrointestinal problems treated here are:

reflux and vomiting

colic

abdominal pain

inflammatory bowel diseases (Crohn's disease and ulcerative colitis)

peptic ulcer disease

liver disease

polyps in the colon

motility disorders (problems with movement of food through the gastrointestinal tract), including irritable bowel syndrome

pancreatitis (inflammation of the pancreas)

diarrhea

constipation

retrieval of swallowed foreign bodies using the endoscope

problems with food absorption

esophageal varices (varicose veins in the esophagus)

Patient visits to the Pediatric Gastroenterology Department number about 8,500 per year. The Children's Hospital at The Cleveland Clinic is one of the largest U.S. centers for inflammatory bowel diseases.

First, Diagnose the ProblemAn accurate diagnosis is the key to good treatment, and a doctor's expertise is the most important element in diagnosing a child's problem. The doctor often orders tests to confirm a diagnosis. Any test needed to diagnose gastrointestinal problems is available at our hospital, including some very sophisticated and specialized ones performed at only a few hospitals nationwide.

Leading-Edge TreatmentInnovative treatments are the hallmark of our Pediatric Gastroenterology Department.Some examples:

A new medication, which our staff helped research, that has dramatically improved the health of children with serious inflammatory bowel disease Our unique Center for Functional and GI Motility Disorders, which helps children with chronic disease learn to cope with pain and other symptoms through biofeedback and other techniques Pediatric liver transplantation, which provides different options for children with very serious liver disease and has excellent survival rates

Taking the time to explain treatment options and plans to patients and their families is a high priority for our pediatric gastroenterology team. Team members also encourage patients and families' active participation in decision-making over the course of care.

AppointmentsTo schedule an appointment for your child with a member of the Pediatric Gastroenterology Department at The Children's Hospital at the Cleveland Clinic, please call 216/444-9000, or (toll-free) 800/223-2273, ext. 49000.

Pediatric Gastroenterology TeamAll physicians on our team treat children with the full spectrum of gastrointestinal problems. Physicians in our three-year pediatric gastroenterology fellowship program have already completed their training in general pediatrics and work directly with staff .

Re: more questions from newbie

Thank you Debbi & Maggie for info on The Cleveland Clinic. I already travel 2 1/2 hours south to Cincinnati to see his ped gi. It would only be 2 1/2 hours north to go to Cleveland. Do the same dr's treat the children & the adults there? > I totally agree with Maggie -- if I were anywhere in the Midwest, I> would go straight to Cleveland to get my own son treated.> > > http://www.clevelandclinic.org/> > Debbi in Michigan