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Anyone have a DC on Pulmicort?

MediaBrideMediaBride
in Parenting

DS has been on it for about a year now.  In the winter we do 2x/day and in the summer we were down to 1x/day.

 I had initiated the conversation with his pediatrician about reducing the dose (to 1x/day) largely due to the fact that he was out of control on it 2x/day.  Super aggressive, super-over-the-top-emotional etc.  It was like he was having a roid rage (for lack of a better description).  When we went down to 1x/day things greatly improved b/c we did it right before bedtime.

We are back up to 2x/day, which he definitely needs, but once again he is a crazy man.  He def needs to be on something, but I think there has GOT to be an alternative to this b/c we are miserable.  I cannot leave him near his brother for 2 seconds alone b/c he is THAT aggressive.  It's like a different child when he takes it in the AM as well.

I was curious if anyone else has had this happen to their DC on Pulmicort and if yes, did you get a new med and what was it?  There has to be another option :( 

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Re: Anyone have a DC on Pulmicort?

  • soontobeahighsoontobeahigh member
    Im a lurker here but I will answer. My DD was on it for almost a year 2x a day. We didn't have any noticable changes in her behavior. She is younger than your son so I don't know if it would be different if she was older to see a difference in her behavior. Im sorry you are having trouble. I hope you get some good responses.
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  • omurrayomurray
    My DS has severe side effects from Pulmicort as well.  He gets super emotional, has trouble falling asleep at night and feels like he needs to pee all the time (like 3 times in 5 min).  We tried Flovent for a short while and it made him super aggressive, aggitated etc..  We just got a new script for Singulair.  We have not started it yet because DS is sick right now and we want to make sure he is back to "normal" before he starts the new med so that we can be sure that any side effects are truly due to the med and not due to a frustrated, sick kid.  The reason I have some hope with the Singulair is because it is not a steroid.  Our specialist said it works well for some people and not for others, so we'll see, but I'm certainly praying we can be done with steroids.  I'm not comfortable with them at all. 
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  • niecyniecy
    try Singulair. It's worked well for DS
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  • dawnc78dawnc78

    This is an area where I have gone against the grain a little...

    DS started having issues regarding asthma at 8months old...they don't normally Dx it that young but the specialists here were confident that that is what it was... at some point before he turned 2 we began using the pulmicort in addition to the xopenex nebulizer treatments (our pedi prefers it to albuterol because it has a lesser effect on heart rate...but not much, i've noticed). We immediately saw a difference in his behavior and emotional state... at that point we discussed the options with the asthma/allergy specialists and the pediatrician...the A/A specialists wanted us to keep him on the pulmicort as a daily maint. drug... our concern was that we were dooming him to a life of emotional upset and what would that do to his development at such a young age...the Pedi agreed with us and said that she, herself had encountered this problem with her own child. Her choice, and eventually ours as well, was to begin using the Pulmicort at the first sign of a cold (DS's asthma is cold or allergy induced) or allergies 2x/day...he remains on it until he is cough free for 3 days...  otherwise we don't give it... There is an extremely noticeable difference in him when he takes it still and he is almost 4... This has worked for us but I don't know if it would have been any better if he were on it daily (as far as how often we had to resort to the xopenex or prednisolone). He rarely has an episode where we don't end up using the whole gammet...but it is definitely less severe when we include the Pulmicort in his regime.

     We were also advised to try Singulair (sp?) but we had a similar problem with that and it has reported cases of suicide attempts and depression as  side effects, so we decided that at his age it would be difficult to determine what was developmental and what was medicine induced so we opted out of that treatment as well

     

    this is our typical regime when he starts with a cold (other than the cold treatment of sudafed, saline, and motrin if necessary)

    Pulmacort 2x/day

    Xopenex every 4-6hrs as needed (given if he starts coughing, wheezing, etc.)

    If he needs another xopenex before 4hrs is up we go to 2vials in one treatment...if he still needs another treatment before 4hrs is up we add the oral steroid (that causes some CRAZY behavior changes!!!) 

    We also give the oral steroid if he begins retracting at any time (if you are looking at his naked chest, you will see the skin dip between his ribs or at his collarbone... this is a clear sign that his lungs are working too hard)

    Prednisolone 1.25tsp 2x/day for 3days   1x/day for 3-5days (until cough is gone not longer than 5 days)

    I hope something here helps!!!
    Good Luck

    {HUGS}

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  • kickypantskickypants
    Wow, this is interesting. My DS2 has been on daily Pulmicort since June, and his behavior has steadily gone downhill (tantrums, emotional, just can't seem to deal sometimes). I've asked all his doctors if the Pulmicort could be responsible, and they've all said it's unlikely--that he's 2.5 and just being a 2 y/o. Hmmm. I'm going to research this a little more. Even if it is responsible, he really seems to need it, and has already ended up on Prednisolone three times since he was diagnosed. (Now that is the devil's drug.) At least I'm not crazy for thinking his behavior could be meds-related...
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  • omurrayomurray

    imagekickypants:
    Wow, this is interesting. My DS2 has been on daily Pulmicort since June, and his behavior has steadily gone downhill (tantrums, emotional, just can't seem to deal sometimes). I've asked all his doctors if the Pulmicort could be responsible, and they've all said it's unlikely--that he's 2.5 and just being a 2 y/o. Hmmm. I'm going to research this a little more. Even if it is responsible, he really seems to need it, and has already ended up on Prednisolone three times since he was diagnosed. (Now that is the devil's drug.) At least I'm not crazy for thinking his behavior could be meds-related...

    Trust your gut.  I've had a couple docs give me the side eye when i've mentioned DS's side effects with Pulmicort.  However, our specialist didn't bat an eye and told us we'd try some different things till we find the right one for DS.  I know my kid and yes, he's 4 and is occasionally a handful, but when he's on Pulmicort, he is a mess.

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