Brooks funny noise

[Googsmom aka Jennifer]

Finally, I caught Brooks funny noise on video. I have her sleeping, I posted that one I think. The doc said it was snoring. THIS is NOT snoring.... she is wide awake walking the dog out back. This is the funny noise Brook makes with almost every breath. We go back to the ENT begining of April. She best not say this is snoring or i'll find a new doc

www.youtube.com/watch?v=TlYaN0e_cAs

[kg91207]

Ok, first of all, I jsut have to say she is so cute I just want to eat her up!!! Kaelyn makes a lot of weird noises, but nothing quite like Brook's. I would definitely say this is NOT snoring!!!

[steffipoo]

OMG Keep the tape for the ent please. This is the best way to show em this is NOT snoring. Olivia sometimes makes a weird noise similar BUT when Liv does it she is sucking on her tongue and her mouth is closed. Liv did make weird noises when she had malasia but they were usually when she was eating or sleeping. Just out of curiousity, is she sucking on her tongue? When Liv does it the noise sounds really similar but in the video it looked like Brookers mouth was open so most likely she isn't doing that.Definately bring the video. Docs must be so glad we have video now as how many times have we went to the doc and said well she's not doing it now but it sounds like this.......lolol Good luck. (((HUGS))) Steff

[Googsmom aka Jennifer]

I don't think it's a tounge thing Steff. We work really hard on tounge/lip/mouth control. I just don't know what the _____ is going on. I'm freeked out though. I'm reallly hoping we can do this plan:

*go under general annistia (sp) and look in her throat. SHOW the momma so *I* can see with my own two eyes. I've done so much research on what this could be I want to see.

That is the plan i'm going to ask for and that is all I will settle for

[steffipoo]

have they ever done a bronchoscopy on her? This seems to be a great way to diagnose what the problem is could still be the flopy airway like Liv had when she was a bambino.Didn't think it was a tongue thing but heck had to throw it out there as I did NOT see Brookers mouth close seemed to be comibng out of her while she breathed and walked n talked. Ddidn't they hafta do a bronch to diagnose her with malacia? They diagnosed Liv with tracheobronchomalacia (big word eh?) when she was a baby after her vascular ring operation. but they diagnosed it thru bronchoscopy. Brooke is too darned cute she reminds me sooo much of Olivia it's weird.(((HUGS))) Steff

[Googsmom aka Jennifer]

What? Liv had a vascular ring operation? That is something they said too. Tooooo scary for me. No, they said it was Trachamalasia when she was little bitty b/c of the noise alone. I took their word. Then when we went to see the ENT to get a sleep study done she said thats not Trachamalasia, thats Laringomalasia. All just by decription from me. I really want them to look and see and show me too. I guess i'll patiently wait for the appt. *big wink wink on the patiently...LOL*

[Chris too]

Steff's right - a rigid bronchioscopy is the only way momma's gonna get to see the noise in action. I got only a still shot of Stevie's "floppy projection" that was on her voicebox, but it was very clear & they did a before/after thing so that I could see what they did with that laser.

She isn't blue, Jenn (she'd be cutie-pie even blue as a berry though), and she hasn't got bronchitis or pneumonia, so I'm pretty sure that you can quit freaking out You said it is constant, so no more at night than what I saw in the video, right? She is just as cute and smart as can be, isn't she??

If the noise is originating from the larynx - as the ENT says - then it is tied more to her voice box (the top-side of the airway) than to her trachea - here, look at this page: www.medterms.com/script/main/art.asp?articlekey=6224

It should be easy for them to have a look, and I'd ask for pictures if not video. It won't be as cute as the one you made, but it should prove to be very interesting.

[Chris too]

Didn't Brook get an echocardiogram in the first couple of weeks following birth? This was the first test my doc ordered following the positive T21 karyotype. Wouldn't that show a vascular ring if there had been one? They are congenital, so it's not as if she would develop it later. Are they really concerned about that, or did they just mention it as one of the causes of a stridor?

[Googsmom aka Jennifer]

What did they do for Stevie? How did she do? Thx for the page. That was there first thought too but I dunno. I just called the ENT to look at the video. She said she would and call me back. What a nice lady. The 10th is a long ways away to this momma. I'm trying not to freek out to bad Chris. Just nervous. All the things Dr Tami talked about were just too much for me. I hear this noise all day long for months now and it has become normal to me. Others who are just hearing it are saying they never heard a noise like this one. Did Stevie make the same noise? Even Leah (lespring) has never heard it and I thought for sure she would of heard something similar. Brook is quite the unique girl. She will have her *own* way of doing things...LOL

[Googsmom aka Jennifer]

Yea Brook had and Echo a couple times. We havent been sence she was 1 yr old though. We don't have to go back till 2010 April. Last month I believe is when the doc did an xray of her throat to diagnose the sinus disease. I wonder why they didn't see it then. At least they didn't say anything. Hmmm. I didn't see anything either really ( I am NOT the doc though. I wouldn't know what I was looking for) just that her throat is as big as my middle finder (hence feeding plan)

[steffipoo]

Liv's vascular ring was not detected by her echo, numerous chest xrays or even the swallow study. An astute man who read the swallow study said he saw something a little weird on it after everyone else had said it was fine. So HE ordered the MRI which clearly showed the vascular ring and the huge compression on Livs esophagus and trachea. She was operated on 2 days later. Livs rt subclavian was wrapped around her esophagus like a noose and very little of anything would be able to pass through.hmmmm interesting Jenn the only way they were able to diagnose Liv with the ring was thru MRI BUT I REMEMBER CLEARLY they did the bronchoscopy prior to surgery but after they diaqgnosed her with the ring after MRI. After the MRI they did the bronch and gave me pics of her pinpoint opening she had before surgery. Poor kid. So guess I'm saying a bronch should show any evidence of a ring as they would clearly see the compression. A bronch perhaps??

[Jackie]

I know nothing about 'noises' but...I do know a really cute kid when I see one! ;D

Jackie

[alisonzmom]

I'm with Jackie.... don't know nothing about noises..... but gosh she one very cute little girl!

Barb

[Googsmom aka Jennifer]

Thx Jackie and Barb

So Dr Tami called and said she has heard this noise once before way back when she worked for a Pulmanologist (sp). She said that Brook has the noise "down pat". Her way of saying we need to see the Pulmanologist again. Again I say?!?! I guess we've seen one before when Brook was little but I forgot. Bad Mom! So i'll wait to see the results from Brooks sleep study and hear what the ENT says about the clip. I also sent it to Dr Pinter (the head guy up at OHSU who started the Ds clinic. Smart Great guy. Dr Tami said Brook is not "struggling" with this noise as in air or anything and she just keeps on keepin' on so she prescribed momma to do the same untill we get some anwsers. Better go hug my girl and fill that script Thx for helping me through this everybody. Medical stuff sucks! Throw me to a tank full of teachers and i'll be fine, doctor stuff..... me no like

[Chris]

She is the cutest!!! ;D I don't know anything about the noise except Sarah makes similar noises when she is congested but probably not the same. Please don't take offense but those noises remind me of a pug.

Chris