Okay, are you ready for a long question/post from me?

As many of you know Emily was diagnosed with asthma after a series of attacks between January and March of last winter.

We started her on Pulmicort 2X/day, and since we started the treatments she hasn't had an attack since. It has been about 8 months of attack free.

We have been attributing her great results to the pulmicort, thinking that it was the miracle drug. My DH is severely asthmatic, and asthma runs in his family. His is so bad that last September he was on a respirator for 2 days because he really couldn't breath for himself at all. So we always have the fear in the back of our minds that her asthma could get that bad, so we were so happy that the pulmicort was working for us.

Now --- a few weeks ago we took her for her 2 year well baby checkup. When I asked about the pulmicort, if we should continue the same treatment, the dr. told us to take her off of it for 2-3 weeks COMPLETELY bcause she can't be on it and get her MMR shots anyway.

We were so nervous when he said this. Fall is a bad time of year for asthmatics. In the 5+ years I've known my DH, he's never been NOT hospitalized in the fall (aside from this year) because of his asthma. I usually would take him 2-3 times alone in the fall because it got out of hand.

She also had a headcold at the time, so we waited a week to take her off of it ---- and the plan is about 2.5 weeks off, and then we'll take her back to the pediatrician for her MMR.

Well, it's been over a week now with no pulmicort and she's doing GREAT. I haven't heard her wheeze ONCE, which is so strange.

I am also thinking about some other things now, about how there are a lot of side effects of steroids with continued use and did she really need it 2X/day for the past 8 months. Could we have been messing up her body.

The pediatricians assured me (and I also read it on some asthmatic parenting boards online) when we started her on the treatments that pulmicort is a drug that mostly stays in her lungs --- that very little gets into her blood stream and so it wouldn't effect her the way that oral steroids would, the ones she'd take if she wasn't taking a preventative med and was having attacks often.

I am thinking though that when I take her back to the pediatrician in a few weeks that we need to talk about either going to a pediatric asthma specialist who can evaluate how bad her asthma really is and determine if she really needs the med all the time, or trying 1X/day or a lower dosage out to see how it goes.

I really thought that the only reason she wasn't having attacks was because she was on the pulmicort. But maybe her asthma isn't as bad as we thought it was. Maybe last winter was a fluke thing. Or maybe the past 2 weeks have just been lucky and if we take her off of it we are taking a huge risk.

Please talk to be about this if you have the time ---- give me your opinions/advice, because I really don't know what to think about it!

Thanks in advance!
Melissa

Re: Okay, are you ready for a long question/post from me?

Hmmmm...that's tough. I would go to the specialist for sure. In addition, I would probaby put her back on the pulmicort for the time being until you were able to speak to him and get his professional opinion. At least if he advises you to take her off, she'll be under his care if her asthma flares up again.

Re: Okay, are you ready for a long question/post from me?

I don't have first had knowledge, but I do know that at 6 mos doctors diagnosed my nephew with asthma after a hospitalization for breathing problems. That was 17 years ago. They gave him all kinds of drugs & poked his little feet until they were black/blue & purple. My sister refused to beleive it was asthma & went home & removed and/or cleaned everything in their house & installed air purifiers in all the rooms. After that visit he never had another attack.

I know other people who had asthma when they were young & "outgrew" it.

Maybe your DD is outgrowing it! Wouldn't that be great! Good luck!

Re: Okay, are you ready for a long question/post from me?

I have no advice as that post was looooooong. But I wanted to tell you that Noah has Asthma too and he gets 2 kind of inhalers twice a day.

Re: Okay, are you ready for a long question/post from me?

My DD has asthma too. She was incorrectly diagnosed with pnuenomia last winter. Since then she has been on singulair once a day and nebulizer treatments for when she has an attack - she does well on the singulair but she is def not symptom free - this could also be because she has severe food and enviornmental allergies that trigger attacks.

She see's a wonderful pulminlogist at Stony Brook University - Dr. Kanu.

To be perfectly honest, I would see a pulminologist before you do anything with Emily's medicine. Just because she is doing ok off the Pulimcort for these 2 weeks doesn't mean that she will stay that way. Winter is fast upon us, and as you know the cold air is hard for asthmatics.
Maybe the pulminologist will have different options for you regarding treatments and vaccinations?


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Re: Okay, are you ready for a long question/post from me?

JRG71 --- it is true. This has been a mild fall so far, so that could be one of the reasons why she's been okay --- the winter could be a totally different story.

I guess I need to ask the pediatrician for a child pulminary recommendation --- or start asking around for one myself.

My DH has a pulminologist that he sees every 3 months and is happy with, maybe he can recomend a pediatric one.

I think that is the best solution, it'll give me the most peace of mind and let me know that we aren't taking risks.

Re: Okay, are you ready for a long question/post from me?

Re: Okay, are you ready for a long question/post from me?