Craniofacial eval.: medical or dental

[Guest guest]

Thanks again Kim for your note. I have already begun researching

craniofacial clinics today and there appears to be one 15 minutes

from my house, and another about an hour away (at s Hopkins). I

am not sure how they operate, plan on calling later today to get more

details.

One thing I was always curious about was whether or not dental work

needed as a result of a genetic condition might actually fall under

the " medical " part of our insurance, rather than " dental " . Usually

the dental side covers much less. I thought I remember someone

mentioning this once. Has anyone out there ever heard of this?

Thanks,

Alison

> > > At the MAGIC convention, many of you were fortunate enough to

have

> > Dr. Kurt

> > > , a craniofacial orthodontist, evaluate your child. I

> > wanted to share some

> > > info that I think others might find helpful.

> > >

> > > I was very interested in having my son see Dr. , because

I

> > could not find an

> > > orthodontist in my area who was either willing to treat my son

or

> > whose services were

> > > covered under my dental insurance policy. After attending the

> > convention, Dr.

> > > & I communicated via e-mail & he told me that there

were 3

> > craniofacial

> > > clinics in Florida (where I am from) that I should contact.

First

> > and foremost, I never

> > > knew that a -Silver child met criteria for craniofacial

> > services, and none of the

> > > TONS of doctors we have seen around here had ever mentioned

this.

> > Come to find

> > > out, I called the clinic nearest to my house (only 9 miles

away!),

> > and was told that they

> > > had a large team of doctors & specialists who evaluate

craniofacial

> > patients, make

> > > recommendations, and follow-up over the years. The best part

of

> > all is that this

> > > service is covered for FREE, so for those of you who don't have

> > insurance, this is

> > > awesome! Since I do have insurance, they did ask me to get a

few

> > referrals - one for

> > > a speech evaluation, one for the ENT, and one for a hearing

> > evaluatiuon, but I was

> > > glad to oblige.

> > >

> > > I took this morning to the clinic, and was very

impressed.

> > Keip in mind that

> > > this cost me nothing, and we do not qualify for any types of

> > financial assistance

> > > whatsoever. We were there for 4 hours, and only about 20

minutes

> > of that time was

> > > spent waiting to be seen. The rest of the time we were

rotating

> > through the following

> > > doctors & specialists: Genetic counseling, audiology (complete

> > hearing evaluation

> > > done), ENT evaluation, we then met with a family advisor who

told

> > us about support

> > > groups in the area & offered assistance with a parent advocate

for

> > school-related

> > > issues (IEP) if needed, a pediatrician, a pediatric

> > dental/orthodontic team from a local

> > > university, 2 speech/language pathologists who did a speech

> > screening, a craniofacial

> > > surgeon, a maxilllofacial surgeon, and a social worker who

could

> > hook us up with

> > > cpmmunity services if necessary. Although we didn't see

> > specialists in the following

> > > areas, they were also listed on the roster of available

services:

> > physical therapy,

> > > ophthalmology, neurosurgery, psychology, & nutrition.

> > >

> > > I urge many of you to check into your state's programs for

> > craniofacial clinics &

> > > schedule an appointment. When I called to schedule, I was told

> > that they could not

> > > refuse patients due to financial need or lack of health

insurance,

> > and that there was

> > > no charge for the first evaluation. Best of all, the

> > dental/orthodontic team told me

> > > that if I took to the university privately, they may

> > consider him a research

> > > subject (learning experience) and either not charge me for

services

> > or adjust their fee

> > > schedule, considering my dental insurance won't cover their

> > services. If I had gone to

> > > the dental clinic on my own, they would not have even offered

these

> > services. I don't

> > > think they have any -Silver patients, so this may be to

> > 's benefit!

> > >

> > > I hope this information helpful to you. I would have never

known

> > about this service

> > > or that a RSS child fell under the " craniofacial " umbrella if I

> > hadn't attended the MAGIC

> > > convention & met Dr. !

> > >

> > > Kim C.

[Guest guest]

Yes, some health insurance companies may cover dental work that is related to a

medical

condition, but it might be a lot of work to fight to get this covered. That was

going to be

my next endeavor if this didn't pan out. On a positive note with my insirance

company -

i am happy to announce that my HMO insurance (Florida) authorized our visit in

December to Dr. H. in New York. I was pleasantly surprised. They said they

would cover

the visit at 100% minus my normal copayment to specialists!

Kim C.

> > > > At the MAGIC convention, many of you were fortunate enough to

> have

> > > Dr. Kurt

> > > > , a craniofacial orthodontist, evaluate your child. I

> > > wanted to share some

> > > > info that I think others might find helpful.

> > > >

> > > > I was very interested in having my son see Dr. , because

> I

> > > could not find an

> > > > orthodontist in my area who was either willing to treat my son

> or

> > > whose services were

> > > > covered under my dental insurance policy. After attending the

> > > convention, Dr.

> > > > & I communicated via e-mail & he told me that there

> were 3

> > > craniofacial

> > > > clinics in Florida (where I am from) that I should contact.

> First

> > > and foremost, I never

> > > > knew that a -Silver child met criteria for craniofacial

> > > services, and none of the

> > > > TONS of doctors we have seen around here had ever mentioned

> this.

> > > Come to find

> > > > out, I called the clinic nearest to my house (only 9 miles

> away!),

> > > and was told that they

> > > > had a large team of doctors & specialists who evaluate

> craniofacial

> > > patients, make

> > > > recommendations, and follow-up over the years. The best part

> of

> > > all is that this

> > > > service is covered for FREE, so for those of you who don't have

> > > insurance, this is

> > > > awesome! Since I do have insurance, they did ask me to get a

> few

> > > referrals - one for

> > > > a speech evaluation, one for the ENT, and one for a hearing

> > > evaluatiuon, but I was

> > > > glad to oblige.

> > > >

> > > > I took this morning to the clinic, and was very

> impressed.

> > > Keip in mind that

> > > > this cost me nothing, and we do not qualify for any types of

> > > financial assistance

> > > > whatsoever. We were there for 4 hours, and only about 20

> minutes

> > > of that time was

> > > > spent waiting to be seen. The rest of the time we were

> rotating

> > > through the following

> > > > doctors & specialists: Genetic counseling, audiology (complete

> > > hearing evaluation

> > > > done), ENT evaluation, we then met with a family advisor who

> told

> > > us about support

> > > > groups in the area & offered assistance with a parent advocate

> for

> > > school-related

> > > > issues (IEP) if needed, a pediatrician, a pediatric

> > > dental/orthodontic team from a local

> > > > university, 2 speech/language pathologists who did a speech

> > > screening, a craniofacial

> > > > surgeon, a maxilllofacial surgeon, and a social worker who

> could

> > > hook us up with

> > > > cpmmunity services if necessary. Although we didn't see

> > > specialists in the following

> > > > areas, they were also listed on the roster of available

> services:

> > > physical therapy,

> > > > ophthalmology, neurosurgery, psychology, & nutrition.

> > > >

> > > > I urge many of you to check into your state's programs for

> > > craniofacial clinics &

> > > > schedule an appointment. When I called to schedule, I was told

> > > that they could not

> > > > refuse patients due to financial need or lack of health

> insurance,

> > > and that there was

> > > > no charge for the first evaluation. Best of all, the

> > > dental/orthodontic team told me

> > > > that if I took to the university privately, they may

> > > consider him a research

> > > > subject (learning experience) and either not charge me for

> services

> > > or adjust their fee

> > > > schedule, considering my dental insurance won't cover their

> > > services. If I had gone to

> > > > the dental clinic on my own, they would not have even offered

> these

> > > services. I don't

> > > > think they have any -Silver patients, so this may be to

> > > 's benefit!

> > > >

> > > > I hope this information helpful to you. I would have never

> known

> > > about this service

> > > > or that a RSS child fell under the " craniofacial " umbrella if I

> > > hadn't attended the MAGIC

> > > > convention & met Dr. !

> > > >

> > > > Kim C.

[Guest guest]

Great news, Kim. When in December is your appointment? We see Dr.

H. on Wed, October 28 and then again 8 weeks from then. That means

we will be there around mid-December. Well, more like somewhere

between the 15th and 20th, I believe.

Jodi

[Guest guest]

Hi Jodi,

Our appointment is on 12/11. I am just keeping my fingers crossed now that I

will be

able to keep it as I am pregnant & have been having some complications (as

usual).

I'll be 29 weeks along at that point, but it was the first appointment I could

get.

Kim C.

> Great news, Kim. When in December is your appointment? We see Dr.

> H. on Wed, October 28 and then again 8 weeks from then. That means

> we will be there around mid-December. Well, more like somewhere

> between the 15th and 20th, I believe.

>

> Jodi