Re: Anybody have other medical issues?

[Guest guest]

My sons ears are also cupped. I was told that the cupped ears were because

of the BPES. He has had other eye problems and he has ADHD. He has muscle

weaknesses and learning disablities hat are making school hard for him.

He's in kindergarten and goes to special ed., PT & OT.

My oldest son who also has BPES, but has finished with his surgeries and

looks wonderful, had blocked tear ducts that he had surgery for, and he had

surgery for hypospadias. He also has ADD/ODD and asthma.

I also have BPES and have had no other medical problems.

[Guest guest]

snellshein wrote:

> Hey, everybody!

> , my almost 3 yr. old, has medical issues from big (cerebral

> palsy, large whole in his heart that was surgically repaired) to small

> (amelogenesis imperfecta, a cupped ear, crossed toes, etc.)in addition

> to his BPES.

> I was just wondering if anyone else has concerns, other than the BPES.

> Sari

My son was born with a congenital sliding hiatus hernia, which required

a fundoplication operation (far nastier than any BPEI surgery) to fix.

Also, like me, he has AD(non-H)D.

Rob

[Guest guest]

Hi Sari, Our wee man *Ethan* has got the *cupped ears*, more so his right, havn't been told that it's connected with blephs, but the Opthalmologist said it *probably* is, when we took him to our family Dr for a cold, he was checking inside his ears, and just mentioned that the ear opening instead of being round like you or I, was slot shaped??? I am guessing its connected also???? anyone else been told this?...It's not a big deal, but the dr said as a wee joke something about not getting peanuts stuck in his ears:), as kids seem to put all kinds of things in there ears:)

-- blepharophimosis Anybody have other medical issues?

Hey, everybody! , my almost 3 yr. old, has medical issues from big (cerebralpalsy, large whole in his heart that was surgically repaired) to small(amelogenesis imperfecta, a cupped ear, crossed toes, etc.)in additionto his BPES.I was just wondering if anyone else has concerns, other than the BPES.Sari

[Guest guest]

>He has muscle weaknesses and learning disablities hat are making school

>hard for him.

Hi ,

At what age did you realize your son’s learning disabilities? We have no

concerns so far, but it is hard to realize at a very young age ... our

daughter turns two in may.

Have you had any chromosome and/or a molecular genetic testing done?

Do any of the other members have concerns about learning disabilities?

Thanks for sharing!

Anja

>From: " Feichtner " <mfeichtner@...>

>Reply-blepharophimosis

><blepharophimosis >

>Subject: Re: blepharophimosis Anybody have other medical issues?

>Date: Tue, 13 Apr 2004 23:08:52 -0400

>

>My sons ears are also cupped. I was told that the cupped ears were because

>of the BPES. He has had other eye problems and he has ADHD. He has muscle

>weaknesses and learning disablities hat are making school hard for him.

>He's in kindergarten and goes to special ed., PT & OT.

>

>My oldest son who also has BPES, but has finished with his surgeries and

>looks wonderful, had blocked tear ducts that he had surgery for, and he

>had

>surgery for hypospadias. He also has ADD/ODD and asthma.

>

>I also have BPES and have had no other medical problems.

>

>

>

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[Guest guest]

Anja,

We didn't really know he was behind his peers in learning until he started

preschool. I kind of was worried that he wasn't learning his colors or

alphabet, but i figured that since was only 3 at the time that he would know

more the following year when he was 4. Well, he didn't learn anymore than

he had the year before that. It wasn't until he started kindergarten this

school year that we learned that he had more of a problem that what we

thought. I'm thankful that he has a wonderful teacher who pushed to get him

tested and now has an IEP.

We have not had any kind of genetic testing done on him or my oldest son. I

never had any either when i was younger and as far as i know nobody else in

my family had testing done either.

Garrett is the only one that has learning disabilities, except for the

ADD/ODD with my oldest. Nobody else with BPES in my family has had a

learning disability to my knowledge.