a substitute for Broncho-Saline?

January 25, 2008

Carol,

I know you have had a lot to deal with lately. I hope you can get

rid of that strep for good.

I was wondering if you had found any substitute for Broncho-Saline

that can be used in the nebulizer to help open up the upper airways?

was sick before, during, and after Christmas. He was put on

prednisolone again. Singulair was added to his daily regimen of

Xopenex and Pulmicort for as long as he was coughing. This time, he

was sent for a chest xray, and the radiologist said " probable

pneumonia " , so that got him 10 days of an antibiotic. Between giving

meds and breathing treatments and trying to get some healthy food

into him and nursing and rocking and thumping him on the back and

often holding him while he slept so he wouldn't wake up coughing the

minute I put him down, I didn't do much else for a couple weeks. I

am so blessed to have older daughters who can and do run the house

for me!(And the 2 oldest boys are pretty good about helping.)

Once was well, I determined to keep him at home the entire

month of Jan. and work on keeping him well. We cancelled a planned

trip to visit my husbands family in early Jan., I've kept him home

from therapy, and he and I even stayed home from church for 2 weeks.

Yet, in spite of all I'm doing to try to build up his immune system,

he now has a head cold again.

I can't seem to get any answers from 's doctors on how we can

keep him from getting colds. Or, once he has a cold, how we can get

rid of it fast before his airways become inflamed and congested. I

did bring up the Broncho-Saline and I brought up the mucosal atomizer

that W. posted about. Neither doctor said much of anything

about either idea. Either they weren't familiar with those

particular products or didn't think they would really help. His ped

gave standard suggestions: saline nose drops/spray and a humidifier

may help ease symptoms. But the asthma booklet he gave me said to

keep the house between 25 and 50% humidity to reduce mold growth. We

do have a mold/mildew problem on our window sills and also in our

basement.

The pulminologist said that has " a little asthma " and gave a

little speech about what asthma is and how to best keep it under

control. He gave us the OptiChamber and mask we needed to be able to

use the Flovent inhaler with . I like it; it is so much

quicker and easier. Though after being on it about a week,

began making a strange throat noise, kind of like a kkkkg sound that

makes me wonder if his throat is feeling scratchy and irritated.

I've started giving him water before I use the inhaler, rinse his

mouth after, and then give him more water. He won't open enough for

me to get a look at his throat. I guess I'll have his ped look at it

at his next check up. The pulminologist seems to believe that

prednisolone is the best medication for asthma. He wants us to have

a bottle in the refrigerator to use anytime his coughing and wheezing

is not responding to Xopenex. He said use it until the coughing and

wheezing are gone. If they clear up after one dose, then stop. If

they clear up after 2 days, then stop. Up to 5 days max. Of course,

you know I am still questioning if that is best. I don't believe

there are any " miracle drugs " that don't come with a price.

So, I continue to try to find answers for . If all else fails,

there is always the SCD diet! I guess there are no easy answers or

shortcuts to good health in our T21 kids.

Blessings,

P.S. I've more kids, but I don't have any grandkids and you do.

That's why I thought perhaps you were older than me. I'm 47, and was

45 when was born. My oldest daughter is will soon be 25.

January 26, 2008

, I am so sorry. I remember very well what that is like! It was an all consuming fire and I felt a bit like a 'queen bee' that needed lots of attention to keep me ( and there by ) functioning. I was just reminiscing this week while putting away all the accumulated clothes piled up on my big comfy over stuffed rocker in my room. I used to LIVE in that chair when she was younger. I used pillows to support my arms so I could hold her in an upright position and still manage to get some sleep myself. I had a table right next to it with the TV remote ( I have never watched SO MUCH TV in my life!!! Too bad I didn't have my iPod back then!) and kids would bring me food and drink. I could even manage to go to the bathroom while still maintaining her in an upright position on my

shoulder! LOLI very definitely know what you are going through!I also came to the simple conclusion that not going out was the best solution for everyone in the family and so we simply avoided it and didn't allow sick kids over to our house either. It was the only thing that truly helped. We stopped attending church as well during the viral season. Summer we went on as normal, though avoided anyone obviously ill. From now til June is the WORST. Here's the good news! He *will* grow out of some of this. As he gets physically larger his airways will as well. His muscle tone will improve as he gets older and that will also tighten up his floppy airways and improve things for him. Course at some point he will have to catch all those bugs... for her it was when she turned 3 and entered the school system. She handled the illness a lot better at that age though.She actually has a great immune

system and when she would get ill, she wasn't really all that 'sick', she simply couldn't breathe. It was all plumbing problems. Didn't matter if it was a tiny cold or a huge nasty ones. If it caused her airways to swell even a little, it set off a cascade of events that included the asthma.Once the virus is in the body, the airways become inflamed. That is true for every one of us. Our airways are just larger and air still moves well enough through them. The only way to intervene is to stop that swelling response before it happens with the steroids so hopefully the asthma won't kick in on top of everything else. Or just don't let him catch a virus in the first place.Very high humidity helps - mold has never bothered her nor has her asthma been triggered by any allergen. It was always triggered by a virus. There are different triggers and each child is different. The best you can do is experiment to find what

works. We tried singulair too and it did nothing for her. Avoiding colds was the only way to avoid all the asthma issues and give her some time to simply grow. It's a valid path to take with him.I was able to get some Broncho Saline yet... but I think when it's gone I am going to use 'Simply Saline' made by the same company for use in the nose. It's sterile too. You could ask your favorite pharmacist for what's available in your area too.I do use a lot of eucalyptus oil in her Vick's cold mist too. I swear it helps a lot. We just started using the chamber last year with . My Ped, who specializes in resp issues, said that its not great when a child is very young or very sick. I still use the nebulizer when she is actually sick, though haven't had to this year!!! ( so far) It assures she is getting ALL the meds and it comes with the saline to boot. If he is making those funny noises, I would go

back to the nebs and see if they stop. Could be he is not getting the full dose of meds?Some of the issues kids with DS have aren't only with the immune system, but their structural make up, which, short of surgery, you can't really fix. It does seem to improve as they get larger and stronger over all, someday this will all be a distant memory!I am going to be 51 in a couple of months, my oldest is going to 26 in that same month. :-) I was 43 when I had . So I am a little older, but not much!! Carol in IL AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - Down Syndrome Treatment/ Listen to oldest dd's music http://www.myspace.com/vennamusic----- Original Message ----From: <ninepreciousgiftsfromgod@...>Down Syndrome Treatment Sent: Friday, January 25, 2008 10:59:33 PMSubject: a substitute for Broncho-Saline?