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J_9 · Feb 23, 2010, 03:02 PM

Please keep us posted. My neighbor's grandson went through the same thing you are going through. He is almost 8 now. CF sweat test was negative, tonsils removed and voilà... healthy as a horse. I'll pray that you all are as simple as that.

Aurora_Bell · Feb 23, 2010, 03:23 PM

Thanks J_9! Me too.

Aurora_Bell · Feb 25, 2010, 06:12 AM

Ok so today is the day we go for the CF test. Just a quick update, the Singulair seems to be working great. One of the side effects is hyperactivity, and boy is she hyper! I don't know if it's from the drug or from her being 2.5. Either way we got our first full night of sleep last night. She has been able to sleep in her own bed for 3 nights. :) This funk that was hanging over my head seems to be lifting. I am still worried about the abnormality in her lung, but I am not going to stress until they know exactly what it is. So I will keep you all posted. Thanks again to everyone who gave me tips, and let me vent my frustrations!

J_9 · Feb 25, 2010, 06:35 AM

Good luck today. The sweat test isn't fun from what I've heard. You will be in my thoughts today.

Aurora_Bell · Feb 26, 2010, 07:31 AM

Well the sweat test definitely isn't fun. Basically they hook up two electroids to her arm, one on her forearm the other on her biceps. They giver her mild shocks, feels like pins and needles when you foot or hand falls asleep.This stimulates the sweat glands. They have to leave that on for 5 minutes. Then they place gauze over one of the spots, place a piece of plastic over that, and then wrap the arm in rubber-like tape. She had to leave that on for 1/2 hour, they remeoved the gauze and bandaging and then sent the sample off the to lab. It took us about an hour to drive to the hospital where the test takes place, by the time I had reached my town they had the results...

She has nothing consistent of CF! :D

whew what a relief. They are still concerned about the abnormality on her lung, so she is booked for another x ray. This appointment will probably take a little longer to get. The Singulair seems to be doing it's job. I like the fact that there is no steroids in it. My friends son has been on it for 2 years, and it is really helping to control his asthma. In fact when he was 3, he ate about 12 pills! His mom called poison control, and they told here there was nothing harmful in it that would hurt him. They told her to skip his next dose for the following day.

The pediatrician would like my Daughter to go on the neubulizer, I am uneasy about that, I don't like the thought of pumping drugs into her system, but if that's what will help, I guess it's worth a shot. How I am ever going to get an extremely active 2 year old to sit still long enough to wear that mask for 1/2 hour is beyond me.
I will keep you posted when the results from the x ray are in.

J_9 · Feb 26, 2010, 07:38 AM

Originally Posted by Aurora_Bell

How I am ever going to get an extremly active 2 year old to sit still long enough to wear that mask for 1/2 hour is beyond me.

That's GREAT news!

Little J has a choice with his mask... he can either wear the fish or the dinosaur. We sit and read books together when he is having a breathing treatmet.

Aurora_Bell · Feb 26, 2010, 08:06 AM

Oh do they have different mask things? Now we may be able to swing that!

J_9 · Feb 26, 2010, 08:09 AM

Oh, heck yea! Tons of different masks!

Aurora_Bell · Feb 26, 2010, 08:18 AM

WHere did you get them? Wow this put a whole new perspective on things!!

QLP · Mar 3, 2010, 08:04 PM

My husband has had asthma his whole life and has recently discovered that a salt-pipe gives him more relief than anything he has ever tried before. Here in England they have actually built a room lined with this salt, like an artificial salt cave, where asthmatic children are taken to simply play and breathe in the air for periods and the results have been really positive. This is provided via mainstream medical care by the way although the treatment was originally considered to be alternative.

The place we got our salt-pipe do them for children but you would need to contact a supplier to check what age they are suitable from.

We got ours here and it tells you a bit about them:

The Cisca Salt pipe : The Authentic Original Patented Saltpipe for Asthma, Sinus problems, breathing difficulties, etc.

I'm sure if you Google you will find lots of other suppliers.

Also I think I heard of a salt therapy room in Florida so there may be quite a few around. Don't know where you are but it might be worth looking into.

Aurora_Bell · Mar 3, 2010, 08:06 PM

Hey thanks for the info! I've never heard of a salt pipe, but I will read up on the info you provided.

Aurora_Bell · Mar 8, 2010, 08:06 PM

So just a quick update, my daughter had an appointment for her x ray, but one of my co workers wants to go watch a hockey game, and that is obviously more important, but I could vent about that all day.. so I have to book another appointment. Anyway, just wanted to keep you all posted. Thanks for all the input! :)

MrEasy · Mar 9, 2010, 06:56 PM

I'm very familiar with people who suffer from multi-chemical sensitivities. The one thing that triggered reactions whether it be respiratory, headache, nausea or confusion was fragrances. Almost all fragrances are made from synthetic chemicals and the body cannot assimilate anything synthetic thus the reaction. Your house could be clean as a pin and the air filtered but if you use dryer sheets with fragrance those clothes are next to the body all day long. Then the sheets and pillow cases are there out gassing scent all night long. Stop and think about all the chemical fragrances that she could be exposed to. Soap, laundry detergent, shampoo, conditioner, hand lotion, perfume, cologne, air fresheners, disinfectant sprays, carpet cleaner, dog shampoo, dish detergent, bathroom cleaners, etc. Two of the worst offenders are scented candles and air freshners. Whenever one of these causes a reaction it in turn weakens the immune system and the body perpetuating the problem.

Start removing fragranced products and replace them with fragrance free products. Also, there are cleaning products that are non-toxic and fragrance free. That's what we use in our home because my wife and I are both chemical sensitive. I purchase an all natural chemical and fragrance-free cleaning product from HeartlandNatural.Com that I bathe, shampoo, shave and wash clothes and dishes in. It is safe enough to drink but effective enough to wash dishes, clean carpet, wash the dog, etc.

I agree with the others about the wood stove. My wife and son can't be anywhere near a fireplace because it stops their head and noses up within minutes. The same with pet dander.

I hope you find out what the trigger is so she doesn't have to live on drugs.

QLP · Mar 20, 2010, 03:31 AM

Originally Posted by MrEasy

I'm very familiar with people who suffer from multi-chemical sensitivities. The one thing that triggered reactions whether it be respiratory, headache, nausea or confusion was fragrances. Almost all fragrances are made from synthetic chemicals and the body cannot assimilate anything synthetic thus the reaction. Your house could be clean as a pin and the air filtered but if you use dryer sheets with fragrance those clothes are next to the body all day long. Then the sheets and pillow cases are there out gassing scent all night long. Stop and think about all the chemical fragrances that she could be exposed to. Soap, laundry detergent, shampoo, conditioner, hand lotion, perfume, cologne, air fresheners, disinfectant sprays, carpet cleaner, dog shampoo, dish detergent, bathroom cleaners, etc. Two of the worst offenders are scented candles and air freshners. Whenever one of these causes a reaction it in turn weakens the immune system and the body perpetuating the problem.

Start removing fragranced products and replace them with fragrance free products. Also, there are cleaning products that are non-toxic and fragrance free. That's what we use in our home because my wife and I are both chemical sensitive. I purchase an all natural chemical and fragrance-free cleaning product from HeartlandNatural.Com that I bathe, shampoo, shave and wash clothes and dishes in. It is safe enough to drink but effective enough to wash dishes, clean carpet, wash the dog, etc.

I agree with the others about the wood stove. My wife and son can't be anywhere near a fireplace because it stops their head and noses up within minutes. The same with pet dander.

I hope you find out what the trigger is so she doesn't have to live on drugs.

Good strategy. I have completely stopped buying chemical cleaners - white vinegar or bicarbonate of soda will clean most things. I use soappods/soapnuts instead of washing detergent. For a nice smell I use a little natural essential oils. Tea tree for a natural antibacterial. I make or buy natural toiletries. I find natural shampoo or castille soap a little pricey but save so much on other stuff that I spend a lot less than the average person who buys commercial products. I bulk buy bicarb and vinegar etc - much cheaper than those little pots and bottles from the supermarket. The more chemicals you can get out of the house the better when people are sensitive. This site has some useful info if you are interested - Imperfectly Natural Janey Lee Grace - afraid the recommended suppliers are Uk but if you are interested in this sort of stuff generally I'm sure you can find US suppliers.