CHARGE and asthma

[Guest guest]

Happy Holidays to all! Does anyone have a CHARGER with asthma? has

had early morning coughing and wheezing episodes for weeks now and his

pediatrician feels it is asthma/allergies and is sending us to a

specialist. Is there a connection between CHARGE and asthma? Sometimes

I feel like my kid can't catch a break! Like it's not enough with all

the CHARGE anomalies he is dealing with(hearing loss,motor

delays,frequent ear infections), now this. Also, waht meds for asthma

have people had success with. did not have luck with Albuterol

nebulizer treatments. He has been taking Pulmacort by nebulizer for

about 5 days and we are not seeing that much improvement. Thanks in

advance for any help you can offer.

, mom to Ben(6) and (3), CHARGER

[Guest guest]

>

> Happy Holidays to all! Does anyone have a CHARGER with asthma?

has

> had early morning coughing and wheezing episodes for weeks now and

his

> pediatrician feels it is asthma/allergies and is sending us to a

> specialist. Is there a connection between CHARGE and asthma?

Sometimes

> I feel like my kid can't catch a break! Like it's not enough with

all

> the CHARGE anomalies he is dealing with(hearing loss,motor

> delays,frequent ear infections), now this. Also, waht meds for

asthma

> have people had success with. did not have luck with

Albuterol

> nebulizer treatments. He has been taking Pulmacort by nebulizer

for

> about 5 days and we are not seeing that much improvement. Thanks

in yes my grandson has this he is on to med for this he takes

breathing treatments1 to 2 a day. yes we understand how you feel

cause Mr Cody has some of the same things Granny

> advance for any help you can offer.

>

> , mom to Ben(6) and (3), CHARGER

>

[Guest guest]

,

I'm sorry to hear about the asthma. Like you say, it seems that sometimes our

kids don't get any breaks.

Our experience with asthma was a little different. The tests that were

administered showed that our daughter had severe asthma. One time it was so

serious they put her on pavulon, a muscle relaxant which made her unable to

move. While pavulonized she could be put onto the vent and not breathe against

the machinery. They told us it was asthma, as clear as day. But then, it turned

out the problem was that her vascular ring was obstructing her airway! It

wasn't asthma at all. The vascular ring was not diagnosed for two years after

the original 'asthma', so in the meantime she had a lot of medications and

nublizer treatments for asthma.

While vascular ring, double aortic arch, does not come up really frequently on

the list, there are several children who have this condition. The vascular ring

wraps around the trachea and esophagus and trachea obstructing both eating and

breathing to varying degrees. Our daughter's condition was not diagnosed

quickly and several specialists missed the diagnosis. It was visible on a

barium swallow, was NOT visible on an ECHO, and was diagnosed following an

angiogram. The vascular ring made the trachea very narrow. Her narrowing was

in the subglottic region and resulted in subglottic stenosis visible during a

bronchoscopy.

Whenever I read an e-mail like yours, I immediately wonder if the vascular ring

double aortic arch has been ruled out. Upon repair of the vascular ring at two

years of age, the 'asthma' disappeared. She has never had it since. Amazing.

Other conditions that might also contribute to asthma could be reflux or some

infections. Since ' coughing and wheezing occurs in the morning, is there a

possibility there is an allergen at play? Some people react negatively the the

heat source such as forced air furnace.

I hope you find an answer and help for soon.

Best wishes,

CHARGE and asthma

Happy Holidays to all! Does anyone have a CHARGER with asthma? has

had early morning coughing and wheezing episodes for weeks now and his

pediatrician feels it is asthma/allergies and is sending us to a

specialist. Is there a connection between CHARGE and asthma? Sometimes

I feel like my kid can't catch a break! Like it's not enough with all

the CHARGE anomalies he is dealing with(hearing loss,motor

delays,frequent ear infections), now this. Also, waht meds for asthma

have people had success with. did not have luck with Albuterol

nebulizer treatments. He has been taking Pulmacort by nebulizer for

about 5 days and we are not seeing that much improvement. Thanks in

advance for any help you can offer.

, mom to Ben(6) and (3), CHARGER

[Guest guest]

erika has bad asthema, or reactive airw2ay desiese (RAD). she takes flovent

or pulmicort twice daily, xopoenex daily and when it is bad she takes

predisone. she also takes singular.

she has been tested by allergist, and no real know alleriges to anyone

thing. her airways get inflammed with colds, allergry season. she has a

history

of tracheal and broncheal atresia which i beleive is a CHARGE thing. it

eventually getes better as they get bigger. erikas has improved, she is now

11.

it was much much wrose in her early years, she also had to have a trach from

birth til 8 yrs old.

we also now have " the respiratory vest " is a vibrating vest that she uses

2x day for 20 mns, minimum. it used ot be for people with cystic fibrosis.

but they now see its great benefits for people w/chronic lung issues. we had

to fight insurance for it, as it is $15,000. it really has helped.

cathie, mom to erika

[Guest guest]

Hi ,

My daughter doesn't have asthma but I'm sure many on the list will be able

to help you. There's nothing I've read in the literature that shows a

correlation between CHARGE & asthma; it probably occurs randomly as it would

in the general population and unfortunately, got the unlucky draw on

that one. I hope you find some meds that work for him (and rule out that

vascular ring that mentioned - sometimes the docs DO miss things!)

Keep us updated and do share what is working for him...it's really helpful.

www.chargesyndrome.info

>

> Happy Holidays to all! Does anyone have a CHARGER with asthma? has

> had early morning coughing and wheezing episodes for weeks now and his

> pediatrician feels it is asthma/allergies and is sending us to a

> specialist. Is there a connection between CHARGE and asthma? Sometimes

> I feel like my kid can't catch a break! Like it's not enough with all

> the CHARGE anomalies he is dealing with(hearing loss,motor

> delays,frequent ear infections), now this. Also, waht meds for asthma

> have people had success with. did not have luck with Albuterol

> nebulizer treatments. He has been taking Pulmacort by nebulizer for

> about 5 days and we are not seeing that much improvement. Thanks in

> advance for any help you can offer.

>

> , mom to Ben(6) and (3), CHARGER

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

Hi -

I wanted to repeat something said. Reflux is an issue we have

as well as " seasonal " need for breathing treatments. We've been

doing Pulmicort twice a day and Albuterol as needed. SInce she's had

a cold for a month now and had some trouble with it over the weekend

the Albuterol has been 4 x day.Anyway, the point was going to be :-)

that as I've been learning more about reflux, I'm finding that it

can cause asthma.

My understanding of the Pulmicort is that it is a preventive measure-

not one that stops trouble like Albuterol is supposed to-so you have

to keep using it longterm to reduce the severity of the problem.

Keep us posted. I'm really interested in this subject as well. If my

older daughter didn't have asthma, I would have wondered why Rasha

has to deal with this too. It's hard to tell what's CHARGE related

and what would have happened anyway without CHARGE to introduce the

situation.

Janay

Rasha's Mom

>

> Happy Holidays to all! Does anyone have a CHARGER with asthma?

has

> had early morning coughing and wheezing episodes for weeks now and

his

> pediatrician feels it is asthma/allergies and is sending us to a

> specialist. Is there a connection between CHARGE and asthma?

Sometimes

> I feel like my kid can't catch a break! Like it's not enough with

all

> the CHARGE anomalies he is dealing with(hearing loss,motor

> delays,frequent ear infections), now this. Also, waht meds for

asthma

> have people had success with. did not have luck with

Albuterol

> nebulizer treatments. He has been taking Pulmacort by nebulizer

for

> about 5 days and we are not seeing that much improvement. Thanks

in

> advance for any help you can offer.

>

> , mom to Ben(6) and (3), CHARGER

>

[Guest guest]

Thanks for all the feedback. did have a vascular ring, which

was repaired almost 2 years ago. He also had reflux, which he outgrew

finally about 6 months ago. This cough is definitely different in

that the vascular ring and reflux coughs were triggered every time he

ate and this is primarily first thing in the morning, waking him out

of his sleep. I am wondering if he will need a preventative med as

well as a rescue med for sudden attacks. It is strange because the

cough is the primary symptom. I did not hear the wheezing, but the

doctor did when she listened to his chest. I always thought wheezing

and shortness of breath were primary asthma symptoms. On a good

note, woke up cough-free this morning for the first time in 2

weeks. thanks again for the feedback!

, mom of Ben(6) and (3), CHARGER

>

> ,

>

> I'm sorry to hear about the asthma. Like you say, it seems that

sometimes our kids don't get any breaks.

>

> Our experience with asthma was a little different. The tests that

were administered showed that our daughter had severe asthma. One

time it was so serious they put her on pavulon, a muscle relaxant

which made her unable to move. While pavulonized she could be put

onto the vent and not breathe against the machinery. They told us it

was asthma, as clear as day. But then, it turned out the problem was

that her vascular ring was obstructing her airway! It wasn't asthma

at all. The vascular ring was not diagnosed for two years after the

original 'asthma', so in the meantime she had a lot of medications

and nublizer treatments for asthma.

>

> While vascular ring, double aortic arch, does not come up really

frequently on the list, there are several children who have this

condition. The vascular ring wraps around the trachea and esophagus

and trachea obstructing both eating and breathing to varying

degrees. Our daughter's condition was not diagnosed quickly and

several specialists missed the diagnosis. It was visible on a barium

swallow, was NOT visible on an ECHO, and was diagnosed following an

angiogram. The vascular ring made the trachea very narrow. Her

narrowing was in the subglottic region and resulted in subglottic

stenosis visible during a bronchoscopy.

>

> Whenever I read an e-mail like yours, I immediately wonder if the

vascular ring double aortic arch has been ruled out. Upon repair of

the vascular ring at two years of age, the 'asthma' disappeared. She

has never had it since. Amazing.

>

> Other conditions that might also contribute to asthma could be

reflux or some infections. Since ' coughing and wheezing occurs

in the morning, is there a possibility there is an allergen at play?

Some people react negatively the the heat source such as forced air

furnace.

>

> I hope you find an answer and help for soon.

>

> Best wishes,

>

> CHARGE and asthma

>

>

> Happy Holidays to all! Does anyone have a CHARGER with asthma?

has

> had early morning coughing and wheezing episodes for weeks now

and his

> pediatrician feels it is asthma/allergies and is sending us to a

> specialist. Is there a connection between CHARGE and asthma?

Sometimes

> I feel like my kid can't catch a break! Like it's not enough with

all

> the CHARGE anomalies he is dealing with(hearing loss,motor

> delays,frequent ear infections), now this. Also, waht meds for

asthma

> have people had success with. did not have luck with

Albuterol

> nebulizer treatments. He has been taking Pulmacort by nebulizer

for

> about 5 days and we are not seeing that much improvement. Thanks

in

> advance for any help you can offer.

>

> , mom to Ben(6) and (3), CHARGER

>

>

>

>

>

>

[Guest guest]

- My son Ethan has asthma and a trach. I assumed all along that the

asthma wasn't CHARGE related because both my husband and Ethan's brother have

asthma.

Ethan was on Flovent inhaler 220 mcg 2 x day as a preventative measure. Ethan

was having a lot of dry coughing at night this past fall and his pulmonologist

thought this was asthma related so he switched him to a med call Q Var inhaler.

So far, the Q Var seems to be helping the nighttime coughing.

When he is sick and wheezing, we add Xopenex nebulizer too. Xopenex is

similar to Albuterol, but Ethan seems to respond better to Xopenex and has less

side effects.

P.S. We did try Pulmacort for some time and saw no benefit.

Jody - mom to Ethan (4.5 yrs - ChARGE) and (7.5 yrs)

Jody - mom to Ethan (ChARGE) and

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