RE: goldenhar? have you guys heard of this?

[Guest guest]

Hi ,

Yes, I've heard of Goldenhar Syndrome. When Jack was in hospital in Glasgow

about 6yrs ago we met a little boy with this syndrome. He was only a few

months old at the time. He had one eye completely missing and also no external

ear

on one side (can't remember which side). He also had a trachy due to

problems with his airway and I think he also had a heart defect of some sort.

There are many syndromes which have overlapping conditions so I guess

diagnosis can change ?

There is a website _www.goldenharsyndrome.org_

(http://www.goldenharsyndrome.org)

Elaine, mum to Elise (12yrs) & Jack (7yrs) CHaRGE

Scotland

[Guest guest]

Hi ,

Yes, I've heard of Goldenhar Syndrome. When Jack was in hospital in Glasgow

about 6yrs ago we met a little boy with this syndrome. He was only a few

months old at the time. He had one eye completely missing and also no external

ear

on one side (can't remember which side). He also had a trachy due to

problems with his airway and I think he also had a heart defect of some sort.

There are many syndromes which have overlapping conditions so I guess

diagnosis can change ?

There is a website _www.goldenharsyndrome.org_

(http://www.goldenharsyndrome.org)

Elaine, mum to Elise (12yrs) & Jack (7yrs) CHaRGE

Scotland

[Guest guest]

,

My son Tanis is 2 and presently diagnosed with CHARGE. Due to the fact he

doesn't have eye problems or Renal problems, the NICU doc in the high risk

clinic has recommended he may actually have VATERS or possibly Goldenhars. The

reason he was looking at Goldenhars is that my husband served in Army during the

Gulf War and has a multitude of his own problems that are being diagnosed and

treated.

Tanis sees the geneticist on Fri, Aug 5. I have already met the geneticist

and was introduced by the high risk neonatalogist to him (he even told him what

the issues were).

Right now we are in limbo with about a zillion appointments (okay, seems like

a zillion, more like 10 so far--in 3 weeks). I looked Goldenhars up in

Google Search and read about it.

Carolyn

mother of Tanis 2 CHARGE and Denny 3 months and wife of Chris

[Guest guest]

,

My son Tanis is 2 and presently diagnosed with CHARGE. Due to the fact he

doesn't have eye problems or Renal problems, the NICU doc in the high risk

clinic has recommended he may actually have VATERS or possibly Goldenhars. The

reason he was looking at Goldenhars is that my husband served in Army during the

Gulf War and has a multitude of his own problems that are being diagnosed and

treated.

Tanis sees the geneticist on Fri, Aug 5. I have already met the geneticist

and was introduced by the high risk neonatalogist to him (he even told him what

the issues were).

Right now we are in limbo with about a zillion appointments (okay, seems like

a zillion, more like 10 so far--in 3 weeks). I looked Goldenhars up in

Google Search and read about it.

Carolyn

mother of Tanis 2 CHARGE and Denny 3 months and wife of Chris

[Guest guest]

I have a dear friend whose daughter has Goldenhar - I feel it is different

than CHARGE - there are similarities but the red flag CHARGE symptoms

(choanal atresia/coloboma) aren't present. The symptoms are listed here:

http://www.faces-cranio.org/Disord/Golden.htm and they don't seem very

CHARGE-like to me.

Weir

Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://ca.geocities.com/weirfamilyrogers

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

goldenhar? have you guys heard of this?

we saw a new doc today and he mentioned goldenhar syndrome,he said it

is very similar to charge, he said we might want to run it by our

genetic doctor. i am doing a little research on it and i thought

some you guys might have heard of it. if so, how do you feel it is

different than charge? from what i read they have a lot in common,

some of you that have trouble with fussed neck bones might want to

ask about goldenhar, that seems to be a common feature. just thought

i'd run it by you guys.

good luck

jennifer, mom to 12 month old CHargEr.

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