Introducing Nolan Dean

[Guest guest]

Hello,

I'm new to the group and would like to introduce myself and my

family. My husband, Mike and I have one child, Nolan. We live in

Hanover Park, IL which is a west/Northwest suburb of Chicago.

Nolan is 8 months old today! We learned when he was 2 days old that

he has bilateral coloboma (right eye- iris/retina; left eye-

iris/retina/optic nerve). He also has micropthalmia, and nystagmus.

When he was 6 months old we learned he has a level 3 VSD and an

undescended testicle. We participated in a coloboma study at the NIH

where genetic tests for Cat Eye and were CHARGE were performed, but

came back negative. At the suggestion of NIH we had an MRI of his

brain performed, and learned he has slight hydrochepalus. He has

been in VT and PT through EI since he was 4 months old. We had a PT

that I was very unhappy with, so we've recently switched to a new one

at Easter Seals who is wonderful! Nolan is severely delayed, as he

is not even rolling yet. He will roll from tummy to back, but only in

one direction. Our PT told us that he is low tone. Also, he does not

seem to as engaged in his environment as most kids his age. He

reacts to Mike and me, but doesn't really seek anything out unless it

is right in front of him (could be the vision, but the eye docs say

his vision should actually be pretty good in his right eye).

Thankfully, his kidneys are fine. Also, his hearing seems to be

good, and he's passed his hearing tests, but some tests reveal

possible Eustachian tube dysfunction. As for making sounds, he

screeches, but doesn't babble at all. No one else is concerned about

this particular issue expect for me. Nolan was off the charts big

when he was born ( 9lbs and 21 3/4 inches) but has tapered to the 50%-

not sure if this is aligned with CHARGE or not.

I know the CHARGE test is only 60-70% accurate, but I go down the

list of characteristics and he has a lot of them. I'm hoping I can

learn more from the group about how to handle his unique needs. Some

specific questions I have are:

1) How will we know if he really has CHARGE?

2) What would be the implication of Eustachian tube dysfunction?

3) What kind of a doc can help us pull this all together? I've been

told geneticist, and I've been told developmentalist, not sure which

is best and I'd like to hear your thoughts.

2) Is there anyone else on the group from our geographic area who has

a pediatrician that they're happy with? I don't feel ours is

equipped to deal with his special needs. I've been interviewing

doctors over the last few weeks, and I can't find any who are in

network and have experience with CHARGE.

I've read through a few posts, and this seems to be a supportive and

informative group. I'm looking forward to learning more from you.

Thanks for any insight you can provide!

[Guest guest]

Annie-

Hi! Welcome to the list. I'm in west central IL (Pittsfield - about one

hour west of Springfield). I have family in Naperville and Wheaton so we

get up that way on occasion. There are other CHARGE moms in the city and

suburbs and I'm sure they'll chime in soon.

Have you reviewed the CHARGE manual on the foundation website? It will give

you info about what to expect or what can be involved in CHARGE. The

downside is that no 2 kids are exactly alike so it can be frustrating trying

to answer questions about Nolan's future.

You will learn so much here. This list has provided the information and

support I have needed along the way to provide the best care for Aubrie (9

yrs) medically and educationally.

How do you know if Nolan really has CHARGE? You are right to keep asking

even though the CHD-7 testing was negative. The best way I know to get a

reliable diagnosis is to send a photo or set up a meeting with Meg Hefner.

She's a genetic counselor in St Louis who is one of the CHARGE gurus. She

can identify the CHARGE " look " because she's had so much experience over a

long period of time with many many children in many countries. There are

some very particular features of CHARGE ears that she can look for in

addition to the overall " look " . We see a genetic doctor at Meg's hospital

in order to take advantage of her expertise. We do most of our doctoring in

St Louis so it's convenient for us. However, it may be worth it to first

send her a photo and then set up a meeting if you think it's worthwhile

after a phone or email discussion with Meg. I've cc'd her on this so she

will surely see our discussion. She's on the list but can't read every

post.

Which kind of doc is best to pull it altogether?? I think it could be a

developmental pediatrician or a geneticist. The specialty isn't as

important as the knowledge and attitude of the person you choose. You're

right to ask for input from others in your geographic area. Hopefully,

someone has found a dr who is a help to them. I did just have this same

discussion with another mom in the area (I've also cc'd her - Janay) and I

know she is equally frustrated at trying to find that person in the Chicago

area.

Eustachain tube dysfunction? I don't know enough about that one so I'll

pass. knowing that someone else will have the info you need.

Welcome to the CHARGE family! We're thrilled to have you with us.

Michele W

Mom to Aubrie 9 yrs CHaRgE and 15 yrs, wife to DJ

[Guest guest]

---

Hello! Welcome to the group! Our daughter did test positive for the

CHARGE gene- I do know that a lot of kids do not test positive for the

gene change and still have CHARGE. Chargesyndrome.org is a great source

of information. I know their are a few families from your area- Good

luck!

Zoey was born with

Tetrology of fallot w/ pulmonary atresia

TEF

bilateral retinal colobomo's(though vision seemed well)

Unilateral right sided cleft lip and palate

typical " CHARGE " ear on her right side(though hearing was said to be

normal).

She had both a J and G tube and took formula orally as well.

Hope this helps!

, mama to Zoey Faith(4-25~7-31-2006)CHargE

[Guest guest]

Welcome to the group. My son Ethan is 4 1/2 years old and we live in Buffalo

Grove, IL. I have a great pediatrician in Arlington Heights, but I don't know

if you want to travel that far. I would definately recommend seeing a

geneticist. They have now identified one of the genes that causes CHARGE that

can be tested. Ethan was born at Lutheran General. The geneticist there made

the diagnosis 12 hours after he was born. It was a clear cut diagnosis for him

so we never had follow up with any other geneticist. Feel free to e-mail me

privately or call me () if you want to talk.

Jody

Jody - mom to Ethan (ChARGE) and

__________________________________________________

[Guest guest]

Hi there Annie and welcome to the listserv and congratulations on the birth

of Nolan! Your child still may have CHARGE even if he didn't test positive

for CHD7 mutations. Usually, it's a good developmental pediatrician who is

the best one to guide you along the way (although you'll be a pro yourself

in no time). Even if she/he doesn't have experience with CHARGE, an

openness to parents/familial input as well as willingness to confer with

other doctors who DO have experience with CHARGE can go a long way. I would

say that a Eustachan tube dysfunction may lead you to having to have tubes

place in Nolan's ears in the future. Inner ear malformations/problems are

extremely common in CHARGE.

I'm in Canada, so no luck with the friendly local doctors, but there are IL

families on the list who should be able to help. It's great to meet you,

please drop in when you can and update us on Nolan (my two sons' last name

is Nolan!)

Weir

Mom to Kennedy 8 yrs (CHARGE), 17, 15, and wife to Graeme

New Brunswick Canada

www.chargesyndrome.info

>

> Hello,

> I'm new to the group and would like to introduce myself and my

> family. My husband, Mike and I have one child, Nolan. We live in

> Hanover Park, IL which is a west/Northwest suburb of Chicago.

>

> Nolan is 8 months old today! We learned when he was 2 days old that

> he has bilateral coloboma (right eye- iris/retina; left eye-

> iris/retina/optic nerve). He also has micropthalmia, and nystagmus.

> When he was 6 months old we learned he has a level 3 VSD and an

> undescended testicle. We participated in a coloboma study at the NIH

> where genetic tests for Cat Eye and were CHARGE were performed, but

> came back negative. At the suggestion of NIH we had an MRI of his

> brain performed, and learned he has slight hydrochepalus. He has

> been in VT and PT through EI since he was 4 months old. We had a PT

> that I was very unhappy with, so we've recently switched to a new one

> at Easter Seals who is wonderful! Nolan is severely delayed, as he

> is not even rolling yet. He will roll from tummy to back, but only in

> one direction. Our PT told us that he is low tone. Also, he does not

> seem to as engaged in his environment as most kids his age. He

> reacts to Mike and me, but doesn't really seek anything out unless it

> is right in front of him (could be the vision, but the eye docs say

> his vision should actually be pretty good in his right eye).

> Thankfully, his kidneys are fine. Also, his hearing seems to be

> good, and he's passed his hearing tests, but some tests reveal

> possible Eustachian tube dysfunction. As for making sounds, he

> screeches, but doesn't babble at all. No one else is concerned about

> this particular issue expect for me. Nolan was off the charts big

> when he was born ( 9lbs and 21 3/4 inches) but has tapered to the 50%-

> not sure if this is aligned with CHARGE or not.

>

> I know the CHARGE test is only 60-70% accurate, but I go down the

> list of characteristics and he has a lot of them. I'm hoping I can

> learn more from the group about how to handle his unique needs. Some

> specific questions I have are:

> 1) How will we know if he really has CHARGE?

> 2) What would be the implication of Eustachian tube dysfunction?

> 3) What kind of a doc can help us pull this all together? I've been

> told geneticist, and I've been told developmentalist, not sure which

> is best and I'd like to hear your thoughts.

> 2) Is there anyone else on the group from our geographic area who has

> a pediatrician that they're happy with? I don't feel ours is

> equipped to deal with his special needs. I've been interviewing

> doctors over the last few weeks, and I can't find any who are in

> network and have experience with CHARGE.

>

> I've read through a few posts, and this seems to be a supportive and

> informative group. I'm looking forward to learning more from you.

> Thanks for any insight you can provide!

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

Just the quickest of notes from me, I'm afraid, though I'll pop in again -

A number of geneticists have said that does not have CHARGE

(basically because she's too tall; ignoring that I'm 5'9 1/2 " and father and

brother were/are over 6'2 " , and an uncle beats them by several inches).

I've learned to take such opinions with a huge grain of salt. attended

the Perkins School for the Blind for 7 years; they've probably had more

" concentrated " experience with CHARGE than any other facility in the

country. The professionals there absolutely endorsed CHARGE for .

The bottom line for us, I guess, is that even if it isn't CHARGE, the issues

has faced and continues to face (she's now 22) dove-tail so perfectly

with what I've learned from Perkins, this group, and reading, that I'm really

at ease.

You'll find our group a great resource. You can cry and laugh here. That

isn't a bad combination.

Martha

[Guest guest]

note martha mum is five foot soemthing LOL

>

> martha on katies hight bel who i have met at the last syd conf is the

> same hight as my mum and ive seen chantelle and chrystine in pics they all

> look the same hight so in my opinion that means that they dont have the

> growth probs and neither does k lol

>

>

> >

> > Just the quickest of notes from me, I'm afraid, though I'll pop in

> > again -

> > A number of geneticists have said that does not have CHARGE

> > (basically because she's too tall; ignoring that I'm 5'9 1/2 " and father

> > and

> > brother were/are over 6'2 " , and an uncle beats them by several inches).

> > I've learned to take such opinions with a huge grain of salt.

> > attended

> > the Perkins School for the Blind for 7 years; they've probably had more

> > " concentrated " experience with CHARGE than any other facility in the

> > country. The professionals there absolutely endorsed CHARGE for .

> > The bottom line for us, I guess, is that even if it isn't CHARGE, the

> > issues

> > has faced and continues to face (she's now 22) dove-tail so

> > perfectly

> > with what I've learned from Perkins, this group, and reading, that I'm

> > really

> > at ease.

> > You'll find our group a great resource. You can cry and laugh here. That

> >

> > isn't a bad combination.

> > Martha

> >

> >

[Guest guest]

martha on katies hight bel who i have met at the last syd conf is the same

hight as my mum and ive seen chantelle and chrystine in pics they all look

the same hight so in my opinion that means that they dont have the growth

probs and neither does k lol

>

> Just the quickest of notes from me, I'm afraid, though I'll pop in again

> -

> A number of geneticists have said that does not have CHARGE

> (basically because she's too tall; ignoring that I'm 5'9 1/2 " and father

> and

> brother were/are over 6'2 " , and an uncle beats them by several inches).

> I've learned to take such opinions with a huge grain of salt.

> attended

> the Perkins School for the Blind for 7 years; they've probably had more

> " concentrated " experience with CHARGE than any other facility in the

> country. The professionals there absolutely endorsed CHARGE for .

> The bottom line for us, I guess, is that even if it isn't CHARGE, the

> issues

> has faced and continues to face (she's now 22) dove-tail so

> perfectly

> with what I've learned from Perkins, this group, and reading, that I'm

> really

> at ease.

> You'll find our group a great resource. You can cry and laugh here. That

> isn't a bad combination.

> Martha

>

>

[Guest guest]

Ellen, I really thank you for writing. I've always sort of had the feeling that

was the odd duck here because of her height. It's refreshing to hear

otherwise. Thanks.

A complete aside. As you might recall, our daughter, , spent

time in the Pacific and may be going back for a short while. For some odd

reason tonight I'm wondering what time it is where you are now. I just

don't remember the difference. lol.

Martha

[Guest guest]

Martha,

My Mark is 5'7 " and definitely is CHARGE. He is 23 now. Some

Dr's don't ever think outside the parameters.

[Guest guest]

annie welc ome to the group my answer to how do u no she has charge is look

at ur gut ceeling look at the genetic things then ok if she fitrs most of

the criteria like three or four then she has it so two major ones two minor

or soemthing like that not everyone has the hearing probs or the other sutff

most of us do but not all i do and ive got colabomas cleft lip palate reflux

and growth and hormonal probs plus other stuff best type of drs

developmental thats what i had the second oen i had didnt know nothing bout

charge but she was the kind that researchexd everything from if no veings

were part of charge to what sorts of relux meds i should take LOL she was

the best and now im in adults hosptial with more great drs and shes retired

after ten years of being my dr hugs ellen in aus

>

> note martha mum is five foot soemthing LOL

>

>

> >

> > martha on katies hight bel who i have met at the last syd conf is the

> > same hight as my mum and ive seen chantelle and chrystine in pics they all

> > look the same hight so in my opinion that means that they dont have the

> > growth probs and neither does k lol

> >

> >

> > >

> > > Just the quickest of notes from me, I'm afraid, though I'll pop in

> > > again -

> > > A number of geneticists have said that does not have CHARGE

> > > (basically because she's too tall; ignoring that I'm 5'9 1/2 " and

> > > father and

> > > brother were/are over 6'2 " , and an uncle beats them by several

> > > inches).

> > > I've learned to take such opinions with a huge grain of salt.

> > > attended

> > > the Perkins School for the Blind for 7 years; they've probably had

> > > more

> > > " concentrated " experience with CHARGE than any other facility in the

> > > country. The professionals there absolutely endorsed CHARGE for .

> > >

> > > The bottom line for us, I guess, is that even if it isn't CHARGE, the

> > > issues

> > > has faced and continues to face (she's now 22) dove-tail so

> > > perfectly

> > > with what I've learned from Perkins, this group, and reading, that I'm

> > > really

> > > at ease.

> > > You'll find our group a great resource. You can cry and laugh here.

> > > That

> > > isn't a bad combination.

> > > Martha

> > >

> > >

[Guest guest]

its acutaly nearly five pm wats the time here im thinking must b late at

nite lol

>

> Ellen, I really thank you for writing. I've always sort of had the

> feeling that

> was the odd duck here because of her height. It's refreshing to hear

>

> otherwise. Thanks.

> A complete aside. As you might recall, our daughter, , spent

> time in the Pacific and may be going back for a short while. For some odd

> reason tonight I'm wondering what time it is where you are now. I just

> don't remember the difference. lol.

> Martha

>

>

[Guest guest]

Welcome my name is Crystal and my CHARGEr is 20 months old and doing

well, her name is Eva. I also have 2 older boys, and . We

live in Illionis in Round Lake Beach. I know I am always looking for

more CHARGE kids in Illinois, I am not sure how far you are from me

but email if you ever need anything. Jody Wolfe and I meet and its

so great to meet other families.

I hope we can all help and give you as much info as we can.

Crystal mom to (10), (3), and Eva (20 month old CHARGEr)

wife to Dan in Illinois

>

> Hello,

> I'm new to the group and would like to introduce myself and my

> family. My husband, Mike and I have one child, Nolan. We live in

> Hanover Park, IL which is a west/Northwest suburb of Chicago.

>

> Nolan is 8 months old today! We learned when he was 2 days old

that

> he has bilateral coloboma (right eye- iris/retina; left eye-

> iris/retina/optic nerve). He also has micropthalmia, and

nystagmus.

> When he was 6 months old we learned he has a level 3 VSD and an

> undescended testicle. We participated in a coloboma study at the

NIH

> where genetic tests for Cat Eye and were CHARGE were performed,

but

> came back negative. At the suggestion of NIH we had an MRI of his

> brain performed, and learned he has slight hydrochepalus. He has

> been in VT and PT through EI since he was 4 months old. We had a

PT

> that I was very unhappy with, so we've recently switched to a new

one

> at Easter Seals who is wonderful! Nolan is severely delayed, as

he

> is not even rolling yet. He will roll from tummy to back, but only

in

> one direction. Our PT told us that he is low tone. Also, he does

not

> seem to as engaged in his environment as most kids his age. He

> reacts to Mike and me, but doesn't really seek anything out unless

it

> is right in front of him (could be the vision, but the eye docs

say

> his vision should actually be pretty good in his right eye).

> Thankfully, his kidneys are fine. Also, his hearing seems to be

> good, and he's passed his hearing tests, but some tests reveal

> possible Eustachian tube dysfunction. As for making sounds, he

> screeches, but doesn't babble at all. No one else is concerned

about

> this particular issue expect for me. Nolan was off the charts

big

> when he was born ( 9lbs and 21 3/4 inches) but has tapered to the

50%-

> not sure if this is aligned with CHARGE or not.

>

> I know the CHARGE test is only 60-70% accurate, but I go down the

> list of characteristics and he has a lot of them. I'm hoping I can

> learn more from the group about how to handle his unique needs.

Some

> specific questions I have are:

> 1) How will we know if he really has CHARGE?

> 2) What would be the implication of Eustachian tube dysfunction?

> 3) What kind of a doc can help us pull this all together? I've

been

> told geneticist, and I've been told developmentalist, not sure

which

> is best and I'd like to hear your thoughts.

> 2) Is there anyone else on the group from our geographic area who

has

> a pediatrician that they're happy with? I don't feel ours is

> equipped to deal with his special needs. I've been interviewing

> doctors over the last few weeks, and I can't find any who are in

> network and have experience with CHARGE.

>

>

> I've read through a few posts, and this seems to be a supportive

and

> informative group. I'm looking forward to learning more from you.

> Thanks for any insight you can provide!

>

[Guest guest]

Well I just checked it out and you are about 45 mins away from me

and I don't know how far you want to go for a doctor. All Eva's

specialists are at Childern's hopital of Wisconsin Milwaukee and I

love all of them and they all have seemed to deal with other CHARGE

kids. We did have a genetics doctor to help us with finding out Eva

has CHARGE. Our peds doctor is in Grayslake and he is awsome and is

so good with all my kids. If you need anything let me know and email

me supermama95@...

I hope when the flu season is over I can meet you and Nolan, I know

what it feels like to not have many people understand what you are

going threw. We can set something up to meet somewhere.

Hugs,

Crystal mom to (10), (3), and Eva (20 month old CHARGEr)

wife to Dan in Illionis

PS this is Eva's site if you would like to check it out!!

http://www.babysites.com/sites/crystalm1476/

> >

> > Hello,

> > I'm new to the group and would like to introduce myself and my

> > family. My husband, Mike and I have one child, Nolan. We live

in

> > Hanover Park, IL which is a west/Northwest suburb of Chicago.

> >

> > Nolan is 8 months old today! We learned when he was 2 days old

> that

> > he has bilateral coloboma (right eye- iris/retina; left eye-

> > iris/retina/optic nerve). He also has micropthalmia, and

> nystagmus.

> > When he was 6 months old we learned he has a level 3 VSD and an

> > undescended testicle. We participated in a coloboma study at

the

> NIH

> > where genetic tests for Cat Eye and were CHARGE were performed,

> but

> > came back negative. At the suggestion of NIH we had an MRI of

his

> > brain performed, and learned he has slight hydrochepalus. He

has

> > been in VT and PT through EI since he was 4 months old. We had

a

> PT

> > that I was very unhappy with, so we've recently switched to a

new

> one

> > at Easter Seals who is wonderful! Nolan is severely delayed, as

> he

> > is not even rolling yet. He will roll from tummy to back, but

only

> in

> > one direction. Our PT told us that he is low tone. Also, he

does

> not

> > seem to as engaged in his environment as most kids his age. He

> > reacts to Mike and me, but doesn't really seek anything out

unless

> it

> > is right in front of him (could be the vision, but the eye docs

> say

> > his vision should actually be pretty good in his right eye).

> > Thankfully, his kidneys are fine. Also, his hearing seems to be

> > good, and he's passed his hearing tests, but some tests reveal

> > possible Eustachian tube dysfunction. As for making sounds, he

> > screeches, but doesn't babble at all. No one else is concerned

> about

> > this particular issue expect for me. Nolan was off the charts

> big

> > when he was born ( 9lbs and 21 3/4 inches) but has tapered to

the

> 50%-

> > not sure if this is aligned with CHARGE or not.

> >

> > I know the CHARGE test is only 60-70% accurate, but I go down

the

> > list of characteristics and he has a lot of them. I'm hoping I

can

> > learn more from the group about how to handle his unique needs.

> Some

> > specific questions I have are:

> > 1) How will we know if he really has CHARGE?

> > 2) What would be the implication of Eustachian tube dysfunction?

> > 3) What kind of a doc can help us pull this all together? I've

> been

> > told geneticist, and I've been told developmentalist, not sure

> which

> > is best and I'd like to hear your thoughts.

> > 2) Is there anyone else on the group from our geographic area

who

> has

> > a pediatrician that they're happy with? I don't feel ours is

> > equipped to deal with his special needs. I've been interviewing

> > doctors over the last few weeks, and I can't find any who are in

> > network and have experience with CHARGE.

> >

> >

> > I've read through a few posts, and this seems to be a supportive

> and

> > informative group. I'm looking forward to learning more from

you.

> > Thanks for any insight you can provide!

> >

>

[Guest guest]

Hi Crystal,

Thanks for the message- and thanks to everyone else who has

responded as well! I've started a spreadsheet of other IL parents

so I can try and keep track. This is a REALLY active group- which

is great. I'm learning a new language though, and seeing many

names, trying to sort it all out.

It is so nice to know that Mike and I are not alone. I'm definitely

going to start making some phone calls/emails to those of you who

are local to me. (that will go on my list for the weekend, I can't

accomplish much during the week- when I get home from work, Mike and

I have 10 minutes, and then he heads off to his job)

For those of you who aren't local, I'll keep you and your kiddos in

my prayers- so many of you are dealing with super tough situations,

my heart goes out to you and so do my prayers.

-Annie

> > >

> > > Hello,

> > > I'm new to the group and would like to introduce myself and my

> > > family. My husband, Mike and I have one child, Nolan. We

live

> in

> > > Hanover Park, IL which is a west/Northwest suburb of Chicago.

> > >

> > > Nolan is 8 months old today! We learned when he was 2 days

old

> > that

> > > he has bilateral coloboma (right eye- iris/retina; left eye-

> > > iris/retina/optic nerve). He also has micropthalmia, and

> > nystagmus.

> > > When he was 6 months old we learned he has a level 3 VSD and

an

> > > undescended testicle. We participated in a coloboma study at

> the

> > NIH

> > > where genetic tests for Cat Eye and were CHARGE were

performed,

> > but

> > > came back negative. At the suggestion of NIH we had an MRI of

> his

> > > brain performed, and learned he has slight hydrochepalus. He

> has

> > > been in VT and PT through EI since he was 4 months old. We

had

> a

> > PT

> > > that I was very unhappy with, so we've recently switched to a

> new

> > one

> > > at Easter Seals who is wonderful! Nolan is severely delayed,

as

> > he

> > > is not even rolling yet. He will roll from tummy to back, but

> only

> > in

> > > one direction. Our PT told us that he is low tone. Also, he

> does

> > not

> > > seem to as engaged in his environment as most kids his age.

He

> > > reacts to Mike and me, but doesn't really seek anything out

> unless

> > it

> > > is right in front of him (could be the vision, but the eye

docs

> > say

> > > his vision should actually be pretty good in his right eye).

> > > Thankfully, his kidneys are fine. Also, his hearing seems to

be

> > > good, and he's passed his hearing tests, but some tests reveal

> > > possible Eustachian tube dysfunction. As for making sounds,

he

> > > screeches, but doesn't babble at all. No one else is

concerned

> > about

> > > this particular issue expect for me. Nolan was off the

charts

> > big

> > > when he was born ( 9lbs and 21 3/4 inches) but has tapered to

> the

> > 50%-

> > > not sure if this is aligned with CHARGE or not.

> > >

> > > I know the CHARGE test is only 60-70% accurate, but I go down

> the

> > > list of characteristics and he has a lot of them. I'm hoping I

> can

> > > learn more from the group about how to handle his unique

needs.

> > Some

> > > specific questions I have are:

> > > 1) How will we know if he really has CHARGE?

> > > 2) What would be the implication of Eustachian tube

dysfunction?

> > > 3) What kind of a doc can help us pull this all together? I've

> > been

> > > told geneticist, and I've been told developmentalist, not sure

> > which

> > > is best and I'd like to hear your thoughts.

> > > 2) Is there anyone else on the group from our geographic area

> who

> > has

> > > a pediatrician that they're happy with? I don't feel ours is

> > > equipped to deal with his special needs. I've been

interviewing

> > > doctors over the last few weeks, and I can't find any who are

in

> > > network and have experience with CHARGE.

> > >

> > >

> > > I've read through a few posts, and this seems to be a

supportive

> > and

> > > informative group. I'm looking forward to learning more from

> you.

> > > Thanks for any insight you can provide!

> > >

> >

>