Brook has joined the club [sigh]...Video added

[Googsmom aka Jennifer]

Well indeed Brook has joined the club of sleep studies and tubes and possible tonsil and adnoid removal....SIGH!! Big fat freeeeked out SIGH!!! Mom here is somewhat ok b/c of the stories I read on the bb's, blogs and places but when I actually heard she failed her hearing test again today (she can hear but not really well), I knew it was coming. A BIG TERRIBLE KNOT in my tummy Sleep study first THEN we will see about the T & A. Tubes are a must though. She has a small pond of fluid behind both ears and along with the area behind her little nose where fluid likes to collect already, this is not so good.

Here's a funny:
Brook does not like doctors!! I told the ENT doc if she wanted to get wax out of Brooks ears we would need a small army Oh we'll be fine, she says. ok whatever. LOL finally it took 4 nurses and 1 mom to hold a little 37 lb 36 in tall squiggling p'off little girl to get a tiny bit of wax out. Brookster aka muscle woman...LOL I apologized to the staff after we were done but I reminded them i warned them...LOL They were fine. no damage done...Hahahahaa ;D

Hello doctor, please let me introduce you to my wonderful daughter Brook........... ;D I sure love her ;D

[CC]

HUGS girl.

Chris had the sleep study had his adenoids (sp?) and Tonsils out, sadly didn't help at all and was not pretty BUT he was not the norm from what I read on this procedure. Chris too has a mild hearing loss but his is due to a bone thing, we tried hearing aids for a few years but for him was just NO good One thing Chris never needed was the ear tubes. Funny it seems to be so common among ones with DS but Chris never ever needed them ;D

Please let us know when you are doing what and prayers will be going out from Jersey for sure

CC ~

[Chris too]

Hey Jen, if she's having all that trouble with fluid, do you think it might be reflux? Stevie's doc said that it can cause so much irritation all the way up the tubes to cause ear, nose and eye troubles and will, of course, cause waking due to choking. Is Brook on Prevacid or anything? Have you asked the ENT about it? Stevie had constant "eye boogers" and fluid and failed hearing tests until the Prevacid fixed it. I think she's going to need a dose increase soon, too - or it could just be one cold after another

[Googsmom aka Jennifer]

CC, {{{{HUGS}}} I will be on here whining when it gets closer. Probally next month or so. We leave for a week vacation next monday so after we get back.

And Chris, ya know, the more and more I think about that, it has always been an issue with Brook her whole life. The doc will give her Zantac, etc... and it goes away. I should know by now it only goes away for a little while. Does Stevie take it everyday? All the time? I gave it to her till it stoped. I think i'm going to ask about that. Never could get a good swallow study done on this girl. Add "hello doctor..... and food...LOL no good! LOL

[momofrussell]

How come you are freaking out?? The sleep study part or the T&A or what?

We didn't have to have a sleep study done with Russell... we bypassed that and went straight for the T&A surgery. It did improve his sleep as far as breathing better and just BREATHING instead of not breathing from the obstruction and how he moved/thrashed so much at night. But it didn't cure all his sleep issues... because some are sensory related.....

Good luck!

A.

[Chris]

I'm glad Chris mentioned the reflux. Our ENT said that reflux often contributes to the fluid behind the eardrum problem. When she got her first set of tubes she had an esophagus scope done. Sure enough, she had reflux. Sarah always had eating problems from the time she was a tiny infant. She was still eating baby food when she was three. Once we got the reflux under control, she started eating solid foods. ;D Believe me, it was a huge leap in her development.

Once Sarah was having horrible sleep problems and Laurasnowbird mentioned it may be reflux. Duh! We had stopped giving Sarah her Prevacid (I can't remember why) but as soon as she started taking Prevacid again, she started sleeping through the night. Amazing.

I love this website because the moms are such a great resource.

Chris

[damarasmom]

Jenn
HUGS!!!!
Sorry about this new development with Brook. I'm sure it will all work out, she's a strong girl . Damara has had 2 1/2 sets of tubes, T&A but done at different times and has done very well. She sleeps much better and no really loud snoring either!
Keep us updated.....BTW....where are you going on vacation???

[Googsmom aka Jennifer]

A, i'm freeked out about hospitals and annistisia (sp) and cutting on my kid. The medical side of Ds is not my for'tay. I'm scared and a big whinner Remember when Mary had surgery? Took me along time to get over the vision of her going away from me into the ORoom. I had a real hard time sleeping for weeks.

What is this....esophagus scope? Some sort of thing they look down the throat? I thought about the reflux all stinkin' night and now am awake at 5am I layed awake last night and watched her thrash about, gag, whine and then fall back asleep. Sucks!! I think I need to really have her reflux looked at. Not just a swallow study b/c she will not cooperate. Hmmmm... what to do?

Shirley, Thx for the hugs. Ya think you could just fly up here and hold my hand...LOL Vacation: It's hubbys 47th b-day and every year he makes it to his b-day (sence the heart attacks, etc) I give him $ (to much) $ to go to the casino at the coast. We will hang out for 5 days I can't wait. Bro in law and sis in law will also be coming. Should be fun as long as I don't forget his CPAP this time...LOL He wants to go sky diving with the oldest boy but I refuse to video tape his demise...LOL

[Chris too]

Jen, Stevie's doc saw the fluid in the ears, asked about nasal stuffiness, saw the "eye boogers" and that was enough for him to prescribe the Prevacid - as far as I can tell, for life. I tried to get her off of it once (just 'cause it was a pain to remember to give it to her silly me) and she started having trouble - night waking, snotty nose, ear congestion - and her breath smelled "vomitty" . It took me two weeks, though, to realize that it was bc of taking her off the Prevacid *sigh* It took a good 10 days to get her "normal" again. Maybe Brook's doc would be willing to give her a Prevacid trial before doing anything else - give her a month on the meds to see if it all clears up. It sure would be nice to avoid all the other stuff if you can.

Have fun on the coast!

[Googsmom aka Jennifer]

I think i'll call the doc today and get her Zantac re-scripted and leave her on it forever. I'm sure it has to help. They were thinking all the noise that comes from her throat is still the pesky treacamalasia (sp) but they thought it was the other kind ringamalsia (sp) instead. They're not sure why it hasn't corrected itself yet. Would this be a reflux doctor thing? Like a GI doc.? See I know nothing of medical stuff. I can't even spell the things correctly. Sigh... I'm off to Mary's IEP for a break from doc stuff...LOL More my kind of thing LOL

[sd112170]

I am wondering about John. He goes for the sleep study because of the thrashing about to. He doesn't sleep well either. He is on Zantac and has been since birth. I didn't know reflux could do all that. He also continues to fail the hearing test. HUMMMMMMM? Got lots of questions about it now.

Hope you get Brook straight. I hate the doctors to. It seems thats all we ever do.

Great Big Hugs Brook!!!

[momofrussell]

While you are calling the doc for the Zantac you might want to ask for some Xanax for you LOL It's a wonderful thing...... heehee

A.

[Chris too]

A - ROTFL

Zantac works for lots of people, but it did not work for Stevie - that's why they approved the Prevacid. I don't know if you would need a GI doc or not, but we didn't. It would probably depend on your insurance requirements. For ours, it was sufficient to say that she continued to have symptoms with the Zantac after a week, and they approved the Prevacid. I wouldn't be at all surprised, though if some insurers would require an acid test of the esophogus to prove the failure or the need of meds at all. I'm sorry that I can't be more helpful on that. I'd ask your Dr. Tammy, Jen.

[Chris]

Since Brook will already be in surgery, maybe your ENT would scope her esophagus at the same time. That's what our doctor has done (twice). All the doc will do is put a scope down her throat while she is under anesthesia. Last spring we found that Sarah had acute esophagitis which is caused by the reflux. We doubled her dosage of Prevacid. My ENT prescribes the Prevacid.

Sarah never spit up much as a baby. She isn't a big burper so I never thought she had reflux. She has silent reflux which means that she doesn't exhibit the classic symptoms. I think all children with Ds need to be checked for reflux.

Chris

[sd112170]

Tonight I gave John his zantac a little later. Do you think that this might help him sleep a little more sound? And also, he had a stomach virus this past week. Lost a lot of weight with it . I am going to pay attention to his sleep until he gains it back. I would think if he sleeps sound until then, we may need to up his dose. I really don't want to do the T&A thing yet.

Jen, I was not worried until I read this thread. Now you have opened a whole new door. But I am glad I have a little more knowledge. Thanks!!