Another question for the experts

[Guest guest]

I know I've used my share of questions for the month, but I figure I'll

squeeze one more in this month, so I can save my September ?'s as Noah

grows! J

At times, (especially at night) Noah when he is breathing sounds like he is

extremely congested and having trouble breathing.

However we suction (bulb suction) his nose out and most times get absolutely

nothing.

The pediatrician said just put some saline drops in his nose and it will

help. Of course that doesn't work! J

We're going to make an appointment with another pediatrician. But I had

read (several sources) that with down syndrome the nasal passages are

smaller and sometimes there are respiratory issues, plus I have read that

somehow a reflux issue can cause difficulty with respiratory.

I figured if anyone knows someone here will! J

Boy am I glad I have a list of those that went before me, what would I do

otherwise! J

Thanks in advance for your responses.

[Guest guest]

,

I'm sorry, I have not been keeping up with the list lately so I'm not sure if

you have covered this or not. My son just turned one and has the same

issues with his breathing. For the first 9 months of his life everyone called

him the " Darth Vader " baby because he sounded so congested all the time. We had

a sleep study done and he does have moderate to severe sleep apnea but his

oxygen levels stay pretty high. I think from an earlier post I read it looks

like you have already had one done for Noah.

What finally seems to be working for us is having him on medications that are

used to treat asthma and allergies. We took him to see a pulmonologist (have you

done that?) and he is the one who ordered the sleep study and started him on the

medications. He diagnosed him with reactive airway disease (RAD), which is

basically just what they call it when kids are too young to be diagnosed with

asthma. He takes Flovent (an inhaler) twice a day and uses albuterol (another

inhaler) as needed for wheezing. He was on Nasonex and Singulair also, but we

have been able to take him off those for the past couple of months. But I expect

come fall he will have to start taking them again.

About the reflux possibly being the cause, it's definitely true that children

with silent reflux can have respiratory problems, although it typically leads to

infections (like pneumonia) not just sounding congested. Has he seen a GI

specialist? If you think that could be a possibility, I would try to find a GI

doctor that could check into that. They can order swallow studies and do other

tests to see if he is having reflux or if it is doing damage.

Obviously every child is unique and these may be things that you have already

tried or that won't work for Noah. But your explanation of what he is doing

sounded so familiar I just wanted to share what worked for us. I hope it helps

and if it doesn't, I hope someone else will have an answer that will!

Kristi

Mom to - 4 and 1 (!), DS

>

> I know I've used my share of questions for the month, but I figure I'll

> squeeze one more in this month, so I can save my September ?'s as Noah

> grows! J

>

>

>

> At times, (especially at night) Noah when he is breathing sounds like he is

> extremely congested and having trouble breathing.

>

>

> However we suction (bulb suction) his nose out and most times get absolutely

> nothing.

>

>

> The pediatrician said just put some saline drops in his nose and it will

> help. Of course that doesn't work! J

>

>

>

> We're going to make an appointment with another pediatrician. But I had

> read (several sources) that with down syndrome the nasal passages are

> smaller and sometimes there are respiratory issues, plus I have read that

> somehow a reflux issue can cause difficulty with respiratory.

>

>

>

> I figured if anyone knows someone here will! J

>

>

>

> Boy am I glad I have a list of those that went before me, what would I do

> otherwise! J

>

>

> Thanks in advance for your responses.

>

>

>

>

>

>

>

[Guest guest]

-

had chronic URI including really bad bouts of pneumonia (on time it put an

actual hole in his lung) and he was diagnosed with reflux eventhough he didn't

show any of the " classic " signs of it. He also had a sleep study done - he

wouldn't sleep at the hospital with all the gizmos hooked up to him, so we did a

at home weekend monitoring of his oxygen levels - well it came back saying that

he had mild sleep apnea so we had our tonsils removed (at that point we already

had our adnoids out due to chronic sinus infections) he has been sleeping so

much better and soundly since they were removed. You might want to check out

some allergy medications, has really bad allergies and tis the time of the

year that we have to double up on our medications - dang ragweed I tell you, it

kills him and me!! If I were you on my list of specialists to see would be

someone at the Down syndrome clinic, a gastroentrologist, a pulmonologist and an

allergist oh and a better equipped pediatrician!! I know it is a long list and

a bunch of appointments but I guess that is what makes our kids special - or at

least that is what I keep telling myself when we are going to all of our

specialists (throw in a ENT, eye dr, endrocrinologist and a behavioral

specialist and that is our mix with oh and now a cardiologist because of

our cholesterol issues - way too high). Hang in there good luck!!

mom to 10 (DS and a long list of other problems)

Abbey and a 4 - identical twins

Another question for the experts

I know I've used my share of questions for the month, but I figure I'll

squeeze one more in this month, so I can save my September ?'s as Noah

grows! J

At times, (especially at night) Noah when he is breathing sounds like he is

extremely congested and having trouble breathing.

However we suction (bulb suction) his nose out and most times get absolutely

nothing.

The pediatrician said just put some saline drops in his nose and it will

help. Of course that doesn't work! J

We're going to make an appointment with another pediatrician. But I had

read (several sources) that with down syndrome the nasal passages are

smaller and sometimes there are respiratory issues, plus I have read that

somehow a reflux issue can cause difficulty with respiratory.

I figured if anyone knows someone here will! J

Boy am I glad I have a list of those that went before me, what would I do

otherwise! J

Thanks in advance for your responses.

[Guest guest]

Here's my $0.02... Anika (now 6) used to sleep quite oddly as a baby. She

would tilt her head back until it looked like she was laying on her head or

resting her head on her back. She didn't have problems sleeping but it looked

weird.

Fast forward a couple of years and when she breathes - it's just awful! She

would hold her breath and gasp. She moved around constantly. We did an at-home

sleep study (where you clip on an Oxygen meter to her toe) and it looked fine.

We saw one ENT because we were worried about adenoid size and after sticking a

tube down her nose said nothing was wrong. We let it alone for a while. Doc

tried to give us allergy meds with a decongestant but I wasn't sure if it was a

good idea since it didn't really get at WHAT the problems was.

Got a new doc and went to ENT when she was about 3. Diagnosed her with very

enlarged adenoids but normal sized tonsils. He also gave us super-duper

decongestant to use when she was congested - which we did liberally for a while

until a different doc said that it was really bad for kids with heart defects

(small VSD). Those were removed and things were OK for a while.

They got worse, she ran a marathon each night when she was put to bed. Had

behavior problems partly related to being so dang tired. New ENT (age 5 now)

and he said her tonsils were huge.

Those were taken out last spring and things are MUCH better. It seems super

common with our kiddos that they have obstructive sleep apnea - small " tubes " ,

floppy tissue in the back of the throat that gets cut off easily when laying on

their backs, and predisposition to large adenoids and tonsils.

Tabatha

Mom-o-2 (almost 4 and almost 6 [DS])

--- In , " Boruchowitz "

....

At times, (especially at night) Noah when he is breathing sounds like he is

extremely congested and having trouble breathing.

However we suction (bulb suction) his nose out and most times get absolutely

nothing.

The pediatrician said just put some saline drops in his nose and it will help.

Of course that doesn't work! J

We're going to make an appointment with another pediatrician. But I had read

(several sources) that with down syndrome the nasal passages are smaller and

sometimes there are respiratory issues, plus I have read that somehow a reflux

issue can cause difficulty with respiratory. ...

[Guest guest]

Darn...I am really behind on emails...depression sucks (that's a personal,

experienced opinion)

Hi ,

has those little, narrow passages...although they have grown quite a bit,

they are still small.  She had this congested sound to her sleep as well, and

trust me, I sucked her nose...can't think of anything MORE fun than stradling a

baby, squiritng saline up her nose, praying she screams (so the saline will

actually go up her nose) and then sucking it back out...I would probably be in

jail if any of that were on video :0)

has never had any respiratory issues, and only 3 ear infections in her 8

(long) years here...did I say long...oh, I meant absurdly exciting, worry-free,

no sass-back talking...sweet wonderful bliss...okay, that's funny!!

She did have some reflux and well, she just kind of snored...it sounded like she

was congested, but she wasn't...it was just the way the air was hitting her

narrow passages and making them vibrate.  I did put a cool mist humidifier in

her room for a year or so...it didn't make the noise go away, but it did help

with her dry lips...she is really a mouth breather. 

I still took her to the doctor until I felt like she had been thoroughly checked

out.  I also have a Down syndrome specialist, so it's kind of nice to run by him

what her regular pediatrician says.

Needless to say,  was an EARLY nose blower...but I still have my blue nose

sucker :0)

God Bless your family...I am so jealous!!

  Moyers

Kay Independent Sr. Beauty Consultant

832-816-7992

www.marykay.com/jendmoyers

________________________________

From: Boruchowitz <dboruchowitz@...>

Sent: Friday, August 28, 2009 10:26:53 PM

Subject: Another question for the experts

 

I know I've used my share of questions for the month, but I figure I'll

squeeze one more in this month, so I can save my September ?'s as Noah

grows! J

At times, (especially at night) Noah when he is breathing sounds like he is

extremely congested and having trouble breathing.

However we suction (bulb suction) his nose out and most times get absolutely

nothing.

The pediatrician said just put some saline drops in his nose and it will

help. Of course that doesn't work! J

We're going to make an appointment with another pediatrician. But I had

read (several sources) that with down syndrome the nasal passages are

smaller and sometimes there are respiratory issues, plus I have read that

somehow a reflux issue can cause difficulty with respiratory.

I figured if anyone knows someone here will! J

Boy am I glad I have a list of those that went before me, what would I do

otherwise! J

Thanks in advance for your responses.