when did your child's laryngomalacia resolve?

[Guest guest]

Hello - I'm new here, although my daughter (now almost 3) was

diagnosed nearly 2 years ago. Her most significant issue right now

is severe laryngomalacia which causes her breathing and feeding

problems. She is G-tube fed and uses a CPAP machine at night to help

her breathe (she is fine when she's awake). Has anyone else had a

similar combination of issues and, if so, when did they resolve?

Also, was it a sudden improvement or gradual over time? She has

definitely improved immensely over where she was at two years ago, as

far as her breathing and secretions. But, while the doctors all say

she will outgrow this, nobody can give a guess when. Any insight

would be appreciated. Thanks.

[Guest guest]

Hi, my daughter was about 2 years old when she outgrew her

laryngomalacia, she also had sleep apnea and lots of secretions but

these were mainly gone by 2. She was also g-tube fed till 3yo and

cpap until about 18 months. I do remember the ENT saying that if her

laryngo/tracheamalacia did not improve on it's own (which he ensured

me it would), she could have some kind of laser treatment that they do

when they do an LBO (laryngo broncial oscopy - I think thats how you

say it) and that would harden the floppy parts of her airways. That

was quite a long time ago, is 5 and a half now and eats and

drinks on her own, no more sleep apnea, life is good... it just took a

long time!!

All the best of luck

Australia

>

> Hello - I'm new here, although my daughter (now almost 3) was

> diagnosed nearly 2 years ago. Her most significant issue right now

> is severe laryngomalacia which causes her breathing and feeding

> problems. She is G-tube fed and uses a CPAP machine at night to

help

> her breathe (she is fine when she's awake). Has anyone else had a

> similar combination of issues and, if so, when did they resolve?

> Also, was it a sudden improvement or gradual over time? She has

> definitely improved immensely over where she was at two years ago,

as

> far as her breathing and secretions. But, while the doctors all say

> she will outgrow this, nobody can give a guess when. Any insight

> would be appreciated. Thanks.

>

[Guest guest]

angela i think i know the op you mean think soem other chargers on here have

had that

>

> Hi, my daughter was about 2 years old when she outgrew her

> laryngomalacia, she also had sleep apnea and lots of secretions but

> these were mainly gone by 2. She was also g-tube fed till 3yo and

> cpap until about 18 months. I do remember the ENT saying that if her

> laryngo/tracheamalacia did not improve on it's own (which he ensured

> me it would), she could have some kind of laser treatment that they do

> when they do an LBO (laryngo broncial oscopy - I think thats how you

> say it) and that would harden the floppy parts of her airways. That

> was quite a long time ago, is 5 and a half now and eats and

> drinks on her own, no more sleep apnea, life is good... it just took a

> long time!!

> All the best of luck

>

> Australia

>

>

> >

> > Hello - I'm new here, although my daughter (now almost 3) was

> > diagnosed nearly 2 years ago. Her most significant issue right now

> > is severe laryngomalacia which causes her breathing and feeding

> > problems. She is G-tube fed and uses a CPAP machine at night to

> help

> > her breathe (she is fine when she's awake). Has anyone else had a

> > similar combination of issues and, if so, when did they resolve?

> > Also, was it a sudden improvement or gradual over time? She has

> > definitely improved immensely over where she was at two years ago,

> as

> > far as her breathing and secretions. But, while the doctors all say

> > she will outgrow this, nobody can give a guess when. Any insight

> > would be appreciated. Thanks.

> >

>

>

>

[Guest guest]

MY daughters laryngolomalcia and bronchomalacia improved over time, a long

time! she had to have a trach until she was 8. she still has some sleep

apena, occasionally still needs the BIPAP at night, but only when she gets

sick.

she still cannot swallow effectively enough to eat by mouth. Secretions are

still an issue.

All that being said, there has been improvement. If i look every day it

seems like not much, wheni look where she was 6 mos, 1 yr, 2 yrs ago etc. there

are improvments, it has been a baby step thing. I think that with a lot of

CHARGE'rs, Baby steps is pretty common. They cannot be rushed. Growth plays

an important part as well.

Good luck,

Cathie, mom to 11 yr

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[Guest guest]

Meagan, who is two years, 5 months, was born with laryngomalacia. At this

point in her life, it is not an issue. We were told that most kids grow out

of it by two, but as we know, our CHARGErs do things differently. Meagan

outgrew hers so gradually, that I actually almost forgot about the diagnosis

She had so many issues surrounding her, that when her malacia wasn't

apparent anymore, I must have just omitted it from my memory. She never wore

the CPAP. Here malacia was apparent all the time...day and night. She

instead took a med called Bethanecol to strengthen smooth muscle

(specifically her airway). That seemed to be enough help.

We also were told that it was a part of her feeding issues, but with it gone

the issues are still there. Nothing is taken by mouth. The desire is there,

but so is the gag. The laryngomalacia is gone, but now other airway issues

have crept up (large tonsils). We'll see if this improves her feedings.

Hope this helps.

, mommy to Meagan (CHaRgE) and 2 year old twins, and big brother

4 years, married to the best daddy in the world for 9 years!

The mention of my child's name might make me cry. Not mentioning my child's name

will break my heart. Unknown

[Guest guest]

Everything you said sounds right. Thank you for responding.

(mom to , 3)

-------------- Original message ----------------------

From: NPTQueenie@...

> MY daughters laryngolomalcia and bronchomalacia improved over time, a long

> time! she had to have a trach until she was 8. she still has some sleep

> apena, occasionally still needs the BIPAP at night, but only when she gets

> sick.

> she still cannot swallow effectively enough to eat by mouth. Secretions are

> still an issue.

> All that being said, there has been improvement. If i look every day it

> seems like not much, wheni look where she was 6 mos, 1 yr, 2 yrs ago etc.

there

> are improvments, it has been a baby step thing. I think that with a lot of

> CHARGE'rs, Baby steps is pretty common. They cannot be rushed. Growth plays

> an important part as well.

>

> Good luck,

> Cathie, mom to 11 yr

>

>

>

> ************************************** AOL now offers free email to everyone.

> Find out more about what's free from AOL at http://www.aol.com.

>

>

>