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

[Guest guest]

Sharon,

First of all let me say that my prayers are with

you, and hope all goes well.

What is mitochondrial disorder? Does it cause EE?

What are the symptoms and how is it diagnosed?

My son had a chest x-ray and EKG today because

he has been having a few problems when he plays soccer.

Namely, he nearly passed out once after just 5 minutes

of exercise, and then yesterday he complained that

his heart was hurting and it hurt to breathe. The

tech that did the ekg said that he had an irregular heart

beat and they did a second test called a rythym strip.

We will get the results on Monday. When was born

he had a small VSD ( a small hole in his heart) that

has since closed up on it's own. NO surgery was

needed.

Hopefully, everything will check out fine, but now

I guess I will be worrying all weekend. As long as

I'm carrying on here, I have to say that the last 3

weeks have been awful. With 's prednisone,

scope, this heart thing, and My mom was just diagnosed

with stage IV cancer in the chest cavity, and also 6

tumors in the brain. I've been out of state with

her, and will return next week. Very stressful. It

just seems like everything always happens in clusters,

and I am just waiting for something else to crop up.

I'm just trying to take it day by day, and saying

lots of prayers.

Enough of my ramblings, and I will say a prayer for

Clayton, and the rest of the family.

Take Care,

> From: SDidinsky@...

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

> To: FundoFamilies (AT) onelist (DOT) com, eosinophilic gastroenteritis (AT) onelist (DOT) com,

> okbabes (AT) onelist (DOT) com, our-kids@...,

> gtube@...

> Reply-to: eosinophilic gastroenteritis (AT) onelist (DOT) com

> Subject: [eosinophilic gastroenteritis] Our Cardiology Appt. - NOT GOOD!!!!!!!!!!!!!

> From: SDidinsky@...

>

> 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]

Sharon,

I so sorry you have moore to wory about with little Clayton. You are as

always, in our prayers.

Hugs,

Cathy

[Guest guest]

In a message dated 10/29/99 5:25:52 PM Eastern Standard Time,

garyarm@... writes:

<< What is mitochondrial disorder? Does it cause EE?

What are the symptoms and how is it diagnosed? >>

No a mitochondrial disorder does not cause EG. A mitochondrial disorder is a

metabolic disoder. It is hard to describe as there are lots of symptoms and

not everyone has the smae symptoms or even the same prognosis even with the

same type. Clayton is more on the mild side. I have attached some links that

will describe it better than i can in an e-mail.

http://www.neuro.wustl.edu/neuromuscular/mitosyn.html#leigh " >Mitocho

ndrial Disorders http://www.mdausa.org/publications/fa-metab.html " >Facts About Metabolic

Diseases of Muscle | MDA Publications

http://www.iwindow.com/mito " >MITOCHONDRIAL MYOPATHY LINKS

http://www.imdn.org/ " >International Mitochondrial Disease Network

(providing support and information

http://biochemgen.ucsd.edu/umdf/ " >The United Mitochondrial Disease

Foundation

Love,

Sharon