Re: Tracheomalasia

[Guest guest]

Hi Donna-

I'm sorry to hear you have yet another " thing " to deal with. Is this

something she will just grow out of eventually? Is this related to the

reflux as well? Can they do anything to prevent her from aspirating? I

hope there is someone on this list that can provide you with some

helpful information. Give Mikayla a hug from us and we'll be thinking

about you guys.

Mom to Ellie 13mths wCF and Jack 3yrs no CF

Tracheomalasia

Mikayla was just diagnosed with silent aspiration caused by

tracheomalasia. I am interested in learning more now that we have

another new *thing* to get through. If anyone has been through

this, please share what you think I should know. Thanks.

Donna

Mom to 13 and Mikayla (Miss May) 13 months.

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

------------------------------------

[Guest guest]

Abby has silent aspiration. We have to thicken her liquids. We have

been doing this for 18 months now. It's not bad. The thicker

liquids are easier to swallow. We are hoping that Abby out grows

this problem.

Gale

> Hi Donna-

> I'm sorry to hear you have yet another " thing " to deal with. Is

this

> something she will just grow out of eventually? Is this related to

the

> reflux as well? Can they do anything to prevent her from

aspirating? I

> hope there is someone on this list that can provide you with some

> helpful information. Give Mikayla a hug from us and we'll be

thinking

> about you guys.

>

>

> Mom to Ellie 13mths wCF and Jack 3yrs no CF

>

> Tracheomalasia

>

> Mikayla was just diagnosed with silent aspiration caused by

> tracheomalasia. I am interested in learning more now that we have

> another new *thing* to get through. If anyone has been through

> this, please share what you think I should know. Thanks.

>

>

> Donna

> Mom to 13 and Mikayla (Miss May) 13 months.

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO

WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

Donna,

When Abby was diagnosed at 5 mos. the reason for our trip to the

university hospital was to check her for tracheo malacia. She had

had a bad case of bronchiolitis/brocho pneumonia requiring

hospitalization and was discharged as her ped. said she was clear.

The following week she was wheezing a lot and we bugged him to death

about what could be wrong. He never mentioned CF but wanted us to go

have her checked for t.m.

A reflux test was administered first which was slightly positive then

a bronchoscopy was performed. The doctor who performed it came out

and told us that she did have t.m. and that it was the cause for the

wheezing. He explained that it was harmless and that she would grow

out of it. Basically it is when the rings or bands in the trachea

are soft or " floppy " and not as rigid as they are when developed.

After this she was sweat-tested - which came back a strong positive

and changed our focus entirely.

She had another bronch in July (6 mos. later) and the t.m. seemed to

have resolved itself. She had stopped wheezing months before that

and doesn't now.

One of the doctors on her team has t.m. himself and never did " grow

out of it " . He demonstrated it for us by exhaling long and hard and

the wheezy rattle was apparent. It has never caused him any problems

though.

This has been our experience regarding t.m. If you have learned

anything else that may apply to us - being different from what we

were told I would be interested. Thanks and good luck.

Joe