Anyone's child have severe asthma?

[Wild Lupine]

I'm not sure if my daughter's asthma is considered severe, but we might be headed in that direction. 

Starting in infancy she had wheezing when she had a bad cold; they told us she had 'reactive airways' and expected her to outgrow it. 

A few months ago she started needing her albuterol nebulizer even without colds, almost daily. So they put her on pulmocort, which often helped, but sometimes she needed her albuterol in addition. Last week she had allergy testing and it was found she has numerous environmental allergies, including all sorts of pollen, dogs and cats, and dust mites. I've deep cleaned the house, including all the bedding, and running the air conditioner frequently. She's also now on allergy medication.

Yesterday she had a flare up that didn't respond to albuterol, and I brought her to the ER. They gave her oral steroids. Today I'm watching her very closely to see if we need to go back. We were at a picnic earlier today and her breathing got really bad, so she's stayed inside, in air conditioning, for the rest of the day. I moved her bed to the living room (the only room thats air conditioned, and I'll sleep there, too, but the air conditioning really seems to make an enormous difference. If  we didn't have AC I'm sure we'd be back in the ER.

It seems like she's gotten so bad so quickly, it's scary. And she's on so much medicine. I'm giving her everything that's been prescribed, breathing is something I just don't play around with, but it just seems like so much.

Has anyone been through this? Do some children need all this medicine all the time, or do most kids asthma get easier to control? How do you decide when to go to the ER? I'm trying to find the line between necessary vigilance and unnecessary worry.

Her dust mite allergy is the worst, according to the allergist. I'd like to get rid of the carpeting, but we can't afford it (I mean, really, really cannot afford it, just getting it steam cleaned is going to be a stretch). Are there any grants for medically necessary redecorations? (Or any idea where I could find out?)

[34me]

Depending on where you live there may be money available for home renovations due to medical conditions.  I have a friend that got a grant to replace their flooring with laminate from the county we live in.  It's a one time grant, and they only pay the store/company/contractor. 

With that being said, I have 1 ds with a dx of moderate/severe asthma and one with viral induced.  When he was a small kiddo we carried a portable nebulizer everywhere we went.  He was on Singulair, various allergy meds at different times, pulmacort, and xopenex (albuterol literally made him vibrate)  When he was 5ish he actually went on Advair and I alwair had steroids in the house.  So it was pretty scary and icky.  By the time he was about 10 he was undercontrol on Singulair, Zyrtec and low dose Advair.  He had very few flares at times.  When he was 13 he started "forgetting" to take his meds and as a teen I just let him go with it.  I wanted to let him figure out he needed them.  Well, he doesn't.  He's now 15 and occasionally takes an allergy pill (still horrible but no longer seem to irritate his airways) or a hit of his inhaler.  He plays 2 sports competitively, and has since he was 6.

In no way do I think he has grown out of it, or that your experience will be the same as ours, but a Doc from National Jewish (leading respiratory hospital and research center) says it's often the case that kids can get some respite in their teen years; and then the airways get twitchy again in their 20's but it's then easier to get back into control.  It happened with my dh and appears to be happening with my ds

[Peony]

I have no idea regarding the home renovations and getting it covered. We've done quite a bit to our place trying to get DD2's asthma under control. She is doing much better now. We also do Singular (best med ever for her! It has helped SOO much), and two nebs. I'm exhausted (new baby) and completely spacing on the meds right now we are using, we've tried many over the years. We've only had to go the ER once, and it was one of those times where I just knew that she needed more meds/treatment then I had. That was also pre-Singular which has really reduced her flare ups. 

[Wild Lupine]

Originally Posted by Peony 

I have no idea regarding the home renovations and getting it covered. We've done quite a bit to our place trying to get DD2's asthma under control. She is doing much better now. We also do Singular (best med ever for her! It has helped SOO much), and two nebs. I'm exhausted (new baby) and completely spacing on the meds right now we are using, we've tried many over the years. We've only had to go the ER once, and it was one of those times where I just knew that she needed more meds/treatment then I had. That was also pre-Singular which has really reduced her flare ups. 

What sorts of things have you done to your place? I'm trying to do everything we can short of removing the carpets. If we have to remove the carpets, we will, but it's expensive, and I can't imagine what the noise would be like in our small place without them.

Originally Posted by 34me 

With that being said, I have 1 ds with a dx of moderate/severe asthma and one with viral induced.  When he was a small kiddo we carried a portable nebulizer everywhere we went.  He was on Singulair, various allergy meds at different times, pulmacort, and xopenex (albuterol literally made him vibrate)  When he was 5ish he actually went on Advair and I alwair had steroids in the house.  So it was pretty scary and icky.  By the time he was about 10 he was undercontrol on Singulair, Zyrtec and low dose Advair.  He had very few flares at times.  When he was 13 he started "forgetting" to take his meds and as a teen I just let him go with it.  I wanted to let him figure out he needed them.  Well, he doesn't.  He's now 15 and occasionally takes an allergy pill (still horrible but no longer seem to irritate his airways) or a hit of his inhaler.  He plays 2 sports competitively, and has since he was 6.

In no way do I think he has grown out of it, or that your experience will be the same as ours, but a Doc from National Jewish (leading respiratory hospital and research center) says it's often the case that kids can get some respite in their teen years; and then the airways get twitchy again in their 20's but it's then easier to get back into control.  It happened with my dh and appears to be happening with my ds

I'm hoping we can get this under control or it gets better as she gets older. She's a very athletic kid and I can really see this limiting her. It's still early for us and we just found out what she's allergic to. But she still needs almost constant monitoring, which is tough on all of us. And scary.

[Peony]

Removed carpet from from all the main living areas, it is only left in the bedrooms. Animals are not allowed in there, we keep the doors shut to the rooms to minimize dander. We have two cats, our two dogs are gone now and we were warned that getting more pets would not be good for her so we have not replaced them. Hepa filter vacuum that I run almost daily. We have a steam cleaner that we use often on the carpet that is left. Mattress and pillows are covered for dust mites, all feathered bedding/pillows are gone. We had an inspection for mold which found some slight mold in our crawlspace that we took care of. I rarely used chemicals for cleaning to begin with but now they aren't even in our house. We live in a very dry climate, we run a humidifer nightly in her room that I keep mold free. We see an asthma doc and our first 2 appointments where going over all these things, what we could do to help her home environment. 

The part that gets me the most, is that DD2 is limited for her activity level. Breaks my heart because my first child is heavily into sports. DD2 does them, dances, gymnastics, played t-ball this summer, soccer this fall, but it wears on her. She can run her little butt off out there but just can't always keep up, she just don't have the stamina to.  I am so thrilled that she does this well, once upon a time, I never thought she would be this good, but you just always want the best for them.