Wednesday, January 27, 2010

Visit to Pulminologist...Asthma Update

For those of you who read this blog or know anything about Marino, you know that Marino's asthma is a big source of frustration and stress for us. It is very difficult to watch your child struggle to breathe, and Marino's viral triggered asthma has meant a lot of minor viruses lately have turned into big illnesses, which in turn has meant lots of stress, money, time off of work for Evan and I, etc. In a nutshell, asthma sucks.

We took Marino to see a Pulminologist today, just to see if there was something different we should we doing to treat his asthma, or if he thought there was a larger issue we were missing.

Right now we are doing (if he is healthy):
Singulair once daily
Pulmicort nebulizer treatment (.25mg) once daily
*for those of you not familiar, both of those medications are medications intended to prevent asthma flare ups, not to control acute asthma attacks/flare ups.

if he gets any sort of cold or seems to be having more trouble, we add in:
an additional Pulmicort nebulizer treatment
Albuterol (2.5mg) every 4 hours (unlike Pulmicort, Albuterol is used to control asthma attacks/flare ups, its is not a maintence medication)

if that doesn't work, we've added in oral steroids (prednisone).

The Pulminologist listened to Marino's lungs and said he certainly thinks the asthma diagnosis is correct. In listening to his breathing for several minutes (for which Marino miraculously sat still and completely quiet), he could detect 1 wheeze per every 10 breaths and this is even with our current system of medicating the asthma (and he's not currently sick). He thinks that his asthma is probably less a result of his prematurity (given that he did not have breathing issues after leaving the NICU until he was 9 months old) and more a result of heredity (Marino's half-brother, Quintyn, had severe asthma as a toddler, too). He said we can hope he will outgrow it, but not to get our hopes up about that...he thinks we will likely be dealing with respiratory issues every winter and hopefully have easier summers (when there are less viruses to contend with).

I asked if he thought I should stop taking Marino to public places, since he ALWAYS seems to get sick within 72 hours after we take him to a place where he is exposed to many people. He said he didn't see any value in that, given that Marino is in daycare, and therefore already exposed to many people, who are exposed to many other people, etc. He made a wonderful point that the harm caused by the viruses he picks up in those places is balenced by the social benefit of being exposed to new people, places and experiences. I think this may be especially true for Marino, who is such a social boy.

He did recommend that we increase Marino's Pulmicort treatments, both the dosage (from .25 to .5mg)and increase to twice a day. We also got a fancy new mask for his nebulizer, that the doctor says he finds does a better job of getting the medicine directly to the lungs (especially with toddlers who are not all that compliant with a nebulizer...unless you bribe them with Yo Gabba Gabba). The new mask is called a Pari mask.

Here's a picture of what our old nebulizer mask looked like. As you can see, it has fairly large ventilation holes and is made out of a thick plastic.

This is our super cool new pari mask. It has smaller ventilation holes and is made of a softer plastic, so it conforms more to his face, for a tighter fit. AND it looks like a fish, which makes it about 12,000 times cooler, right?

Instead of unscrewing the top to put the medicine in, the pari mask is like a pitcher, so you pour the medicine inside. The other mask had actually become an issue in this regard lately, since Marino would sometimes pull the top off of the other mask, and meds would spew out. Not possible with Mr. Fish.
And here's what it looks like on. It also dispenses the medicine quicker and more effectively. The total time needed for this mask is 6 minutes. With our old mask, it could take up to 15 minutes to finish the meds.
We go back in 2 months (at the end of cold/flu season) to reassess where we are with our med dosages, and we may be able to cut back some in the spring/summer months.

10 comments:

  1. Hey Sara...
    You are right. Asthma sucks...severely.
    Reading this post takes me back to my son's issues w/asthma. It began when he was 7 months old and his first incident landed us in the hospital. Everytime he had a virus...or even during allergy season, the asthma hit. I feared nothing more than that dreaded "asthma cough." It took three specialists for us to finally get his under control at age 3. We were also told he may grow out of it.
    For the most part, he does really well now and we have not used a nebulizer since he was 9. He is now 13. He is still on his maintenance drugs {Singulair, Flovent, Nasonex, and Asthmanex} daily...but he usually has about 1 - 2 asthma bouts p/year which land us in the office for a prednisone rx. We tried taking him off the maintenance drugs during the summer last year...and quickly found out...he needs them. So..although it has gotten much better with age, the issue remains. We will keep Marino in our thoughts and prayers. I can't tell you how many days of work I missed due to asthma outbreaks. AND...that darn mask was awful! Alex called it his Luke Skywalker mask! The new one is awesome! Talk to you soon!

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  2. Thanks for the info!
    Right now we're doing once a day pulmicort, with going to 2x pulmicort and q4 albuterol as needed.
    Glad we're at least on the right track. I hope this helps Marino!

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  3. i'm glad he said you guys can go out. marino will have much more fun. (and i'm sure you guys will be able to have a little more sanity without a couped up toddler!)
    and the mask is SO CUTE! (it's the little things isn't it?) i hope it works better for him.
    he's such a little trooper... is he always so good with something on his face? (when we do wren's xopenex she sort of just zones out, or reaches up to hold the tube herself. i was surprised she acted that way.)

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  4. Brandon has the same fish mask that we use. That is good that the pulminologist said you can continue to take Marino out. Ours said the same thing about bringing Brandon out for the same reason.

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  5. I can't believe they hadn't given him a peri mask earlier! When we battled RSV with son #1 that is the mask we got immediately...

    I am glad that the appointment went well and you were able to get some helpful info! Marino is such a cutie!

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  6. Charla - I was going to stick this in my 5 on Friday post...the only reason he is so good with the mask is because is obsessed with Yo Gabba Gabba. In fact, he is so obsessed with it, that if I tell him "no sass" (while he is trying to hand me the "mote"), he will go and get his neb mask and hold it up to his face, since he knows he gets to watch YGG if he gets a breathing treatment! Oh, the manipulation...I can't wait until he is speaking in complete sentences, he'll be all "oh, Mommy, I can't breathe...need a treatment...and my YGG!"

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  7. Yo Gabba Gabba is a lifesaver during treatments!! So far, we only have to do the albuterol when he has a cold and continue with the Singulair daily. Ugh...this does suck! I'm going to have to ask about that super cool fish mask, though! That thing is awesome :)

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  8. Thanks for posting all this info and especially the pics. I learned a lot from this. We have the old mask you were using from when Cam was still on O2 at home and getting tons of neb treatments every day. I'll have to keep in mind that there are better masks, maybe see if I can pick one up somewhere. Glad the doc has a plan of action for Marino. Hope this all works and that he out grows this.

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  9. Yuck. I'm praying Marino outgrows this crap! Cool fish mask though! Hayden has a dinosaur mask, but, gratefully, he hasn't had to use it much. Are you seeing Dr. Rosenburg? (I'm sure I've asked you that before - forgive my forgetfulness)

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  10. I'm really glad I found this

    Now I've been having fits of coughing and wheezing for years and years since childhood, usually at night or early mornings and nothing I do seems to prevent it.

    Time and time again I've been to the doctors, first taken by parents as a child and since then multiple times on my own.. problem is since this mostly happens at night, while I am in the doctors office the wheezing/coughing isn't present.

    5mins later after blowing into a machine I'm sent packing out the door with the only words from the doctor 'you don't have asthma' .. no other tests, no other possible causes put to me. Just sent away feeling like I've wasted their time.

    So I'm still coughing and wheezing through the night and no closer after all these years of discovering why or how to prevent it.
    Read more

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