A friend needs your help

[Guest guest]

Hi Guys,

this is off another list I am on Mom just found out her son has a

double aortic arch.. told her I would post it here and those of you

that have kids with this (I know ther are at least a couple on here)

can help her out.. she's scared...

Send replys directly to her please..

Thanks, Casey

Date sent: Fri, 29 Oct 1999 16:22:31 EDT

Send reply to: SDidinsky@...

Subject: Our Cardiology Appt. - NOT GOOD!!!!!!!!!!!!!

Hi all:

Sorry for the mass mailing BUT I am not very happy. Actually I am

about to

cry. Went to the cardiologist today for a routine visit requested by

Clayton's ped and metabolic doctor since he has been diagnosed

with a

mitochondrial disoder. I of course expected the exam to be

normal. Well

first we got there at 9am and of course Clayton would not

cooperate and

they could not give him chloral hydrate since he ate breakfast. I

made the

appointment about a month and a half ago and really did not want

to change

it. THey were great and said come back at one. So we did and

they needed

to give him 3 doses of chloral hydrate and then I had to drive him

inthe

car for 10 minutes befoire he fell asleep - about 2:15pm. Finally did

the

cardiac echo and of course something was wrong. The heart itself

looked

fine - on the large size of normal for his size but this was ok. Blood

flow was normal - EXCEPT CLAYTON HAS A SECOND AORTIC

ARCH - A VASCULAR

RING. LOVELY. What this means is that he has this second arch

and it is

crossing over his trachea and esphagus and most likely causing his

breathing problems - strider, and is eating and swallowing

problems!!!!!

Surprise Surprise. The echo was very clear showing this and so

was the

chest x-ray - BUT now we are going to havwe a chest MRI so we

can see

exactly what it is impinging on and then guess what - Clayton will

need

surgery to correct this. About 3-5 hours worth. Just want I want for

him.

I cannot believe this. I go there expecting everything to be fine and

dandy and get knocked down again. I swear everytime we go for a

routine

test or exam something is wrong. I just do not know what to do.

BUT what

bothers me - the cardiologist feels that this is one of the main

reasons

Clayton has problems swallowing and eating and does not want to

eat. IT

is not behavorial. I jsut can't take anymore. I just want to say no

more

doctors.

Anywaythe only good news was that his EKG is normal.

Thanks for letting me vent and if anyone has any information on

vascular

rings and the surgery to coorect them I would love them and

anyone who

went through this with their child info would be great.

Thanks.

Love,

Sharon, mom to 3 wonderful boys - Jake (6 1/2 ADD, fine motor

delays,

gifted), fraternal twins 2 1/2 - Cole (nda - with the greatest smile)

and

Clayton (mitochondrial disorder, g-tube, microcephalic, Nissen,

sensory

intergration dysfunction, no real attention span , now most likely a

vascular ring and WHO KNOWS WHAT ELSE)

[Guest guest]

Casey,

Brittney has a aortic arch. I'd love to talk with this mom. Can you set

us up?

Amy Brittney 7

bobc@...

Our Cardiology Appt. - NOT GOOD!!!!!!!!!!!!!

>

>

> Hi all:

>

> Sorry for the mass mailing BUT I am not very happy. Actually I am

> about to

> cry. Went to the cardiologist today for a routine visit requested by

> Clayton's ped and metabolic doctor since he has been diagnosed

> with a

> mitochondrial disoder. I of course expected the exam to be

> normal. Well

> first we got there at 9am and of course Clayton would not

> cooperate and

> they could not give him chloral hydrate since he ate breakfast. I

> made the

> appointment about a month and a half ago and really did not want

> to change

> it. THey were great and said come back at one. So we did and

> they needed

> to give him 3 doses of chloral hydrate and then I had to drive him

> inthe

> car for 10 minutes befoire he fell asleep - about 2:15pm. Finally did

> the

> cardiac echo and of course something was wrong. The heart itself

> looked

> fine - on the large size of normal for his size but this was ok. Blood

> flow was normal - EXCEPT CLAYTON HAS A SECOND AORTIC

> ARCH - A VASCULAR

> RING. LOVELY. What this means is that he has this second arch

> and it is

> crossing over his trachea and esphagus and most likely causing his

> breathing problems - strider, and is eating and swallowing

> problems!!!!!

> Surprise Surprise. The echo was very clear showing this and so

> was the

> chest x-ray - BUT now we are going to havwe a chest MRI so we

> can see

> exactly what it is impinging on and then guess what - Clayton will

> need

> surgery to correct this. About 3-5 hours worth. Just want I want for

> him.

> I cannot believe this. I go there expecting everything to be fine and

> dandy and get knocked down again. I swear everytime we go for a

> routine

> test or exam something is wrong. I just do not know what to do.

> BUT what

> bothers me - the cardiologist feels that this is one of the main

> reasons

> Clayton has problems swallowing and eating and does not want to

> eat. IT

> is not behavorial. I jsut can't take anymore. I just want to say no

> more

> doctors.

>

> Anywaythe only good news was that his EKG is normal.

>

> Thanks for letting me vent and if anyone has any information on

> vascular

> rings and the surgery to coorect them I would love them and

> anyone who

> went through this with their child info would be great.

>

> Thanks.

>

> Love,

> Sharon, mom to 3 wonderful boys - Jake (6 1/2 ADD, fine motor

> delays,

> gifted), fraternal twins 2 1/2 - Cole (nda - with the greatest smile)

> and

> Clayton (mitochondrial disorder, g-tube, microcephalic, Nissen,

> sensory

> intergration dysfunction, no real attention span , now most likely a

> vascular ring and WHO KNOWS WHAT ELSE)

>

> > For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

>