Re: Airway issue????Long reply

[Guest guest]

Hi

I was chatting with you last night, but had to leave to cook dinner.

I'll give you some more info on Will, that might help.

Like I said last night Will didn't start having probs till 5 months of

age and then all of a sudden started having severe reflux. They tried

to start meds for the reflux and he started choking on everything he

spit up. They did a Bronch and told me it was normal, except for some

inflamation, probably relating to small amounts of aspiration. They

did surgery to fix the reflux and told us he'd be fine. Well 6 months

later we were having more and more breathing problems, and he was still

vomiting daily, so they did another Bronch. This time it showed lots

of inflamation, and Laryngealmalacia, and some distal Bronchomalacia.

At this time we had no clue what we were dealing with, but were told

that don't worry kids grow out of all of this it shouldn't be a

problem. Our question of course was if it wasn't seen on the first

Bronch. why are things getting worse, nobody had an answer. We

switched Pulmonary Drs shortly after that, and were told no problem

things will get better. Then we had 6 months of pnuemonia. They did

another Bronch last Sept. and the Pulm was surprised by what she saw.

There was an incredible amount of inflamation (we had stopped

thickening what will was drinking), visual evidence of aspiration,

Laryngeal/Tracheal/Bronchomalacia. Our Pulmonary was baffled, she

originally tried to write it off as bad technique on the other Drs

part, and then gave us the he'll grow out of it answer (he was 25

months at the time).

A couple of months later we did a follow up with her and mentioned Mito

for the first time and she stopped trying to talk us into the he'll

outgrow it. She is watching him a lot closer now and we are trying to

set up a bunch of different tests. She told us she doesn't know a

whole lot about Mito, but that it makes perfect sense that if it is

effecting muscles and energy it would effect breathing. That his lung

tissues themselves are not all that bad, but the problem is in the

mechanisms for breathing (the muscles and airway). Right now she

doesn't have any solutions, just treat as things come up, but at least

she's keeping her eyes out for more info. that may help her treat Will.

We know in the past few weeks Will has gotten worse, and are hoping to

get back in to her soon.

I know that was a lot of stuff, and nothing concrete, but it's what

we've been through. I know Joey is older than Will, but maybe this

helps.

J.

[Guest guest]

---

Hi I was reading your information . I thought I would tellyou

about my daughter. At Birth she was a normal baby but when she would

eat she would projectile vomit. She would not burp but if you fed

her more than 2 ounces she would vomit. Then at 2 months old she

quit breathing on me twice the doctors said she had pneumonia and

then got a mucus plug and that is why she quit breathing. But come

to find out Her diaphragm quit working and what the doctors at one

hospital thought was pneumonia was really atelectasis(where areas of

the lung collapse and reinflate by themselves.) I don't want to

worry you but thought you should hear my story.

Mother of Chelsea 6yrs(mito unspecified)

In Mito , wrote:

> Hi

> I was chatting with you last night, but had to leave to cook

dinner.

> I'll give you some more info on Will, that might help.

> Like I said last night Will didn't start having probs till 5

months of

> age and then all of a sudden started having severe reflux. They

tried

> to start meds for the reflux and he started choking on everything

he

> spit up. They did a Bronch and told me it was normal, except for

some

> inflamation, probably relating to small amounts of aspiration.

They

> did surgery to fix the reflux and told us he'd be fine. Well 6

months

> later we were having more and more breathing problems, and he was

still

> vomiting daily, so they did another Bronch. This time it showed

lots

> of inflamation, and Laryngealmalacia, and some distal

Bronchomalacia.

> At this time we had no clue what we were dealing with, but were

told

> that don't worry kids grow out of all of this it shouldn't be a

> problem. Our question of course was if it wasn't seen on the

first

> Bronch. why are things getting worse, nobody had an answer. We

> switched Pulmonary Drs shortly after that, and were told no

problem

> things will get better. Then we had 6 months of pnuemonia. They

did

> another Bronch last Sept. and the Pulm was surprised by what she

saw.

> There was an incredible amount of inflamation (we had stopped

> thickening what will was drinking), visual evidence of aspiration,

> Laryngeal/Tracheal/Bronchomalacia. Our Pulmonary was baffled, she

> originally tried to write it off as bad technique on the other Drs

> part, and then gave us the he'll grow out of it answer (he was 25

> months at the time).

> A couple of months later we did a follow up with her and mentioned

Mito

> for the first time and she stopped trying to talk us into the

he'll

> outgrow it. She is watching him a lot closer now and we are

trying to

> set up a bunch of different tests. She told us she doesn't know a

> whole lot about Mito, but that it makes perfect sense that if it

is

> effecting muscles and energy it would effect breathing. That his

lung

> tissues themselves are not all that bad, but the problem is in the

> mechanisms for breathing (the muscles and airway). Right now she

> doesn't have any solutions, just treat as things come up, but at

least

> she's keeping her eyes out for more info. that may help her treat

Will.

> We know in the past few weeks Will has gotten worse, and are

hoping to

> get back in to her soon.

>

> I know that was a lot of stuff, and nothing concrete, but it's

what

> we've been through. I know Joey is older than Will, but maybe

this

> helps.

>

> J.