Well, we're going to see our peds allergist next week to see whether we go back
to Pulmicort. I'm bummed -- the Singulair is soooo much easier on all of us.
But I'm wondering if I'm overreacting. Do your kids cough and if so, how
much and how often, on a regular basis? It's probably crazy to think we
could eliminate his cough entirely, but then parenting is pretty much crazy
as it is. Also, tell me about Flovent vs. Pulmicort. How old do you need to
be to use it -- with a MDI and spacer, right? I'm just so tired of strugglng
with a daily nebulizer treatment!!!! Cheryl
From my experience (disclaimer: NOT a doctor, just an asthma mom!): My son coughs occasionally. When he develops a cough, it will start with the occasional evening cough. He'll maybe cough 5 times a day between 6:00PM and 7:30AM. We'll usually start him on albuterol 2-3 times per day, and we're often able to head things off. But not always.
We switched him from Pulmicort to Flovent ages ago, when he ceased to cooperate with the nebulizer. Flovent's the same medication, but used with and MDI and spacer - just as you noted. We started him on it around the time he turned two, maybe even a little before then.
He's been on Flovent 220 most of the time since then, although he's back to 110 right now. We've never experienced any noticeable side effects, but we'd love to get him off the stuff someday. There is a possibility of stunted growth, and he is kinda small... Lots of other parents have found that their children are irritable when on Flovent, same as with Pulmicort.
And working with the MDI/spacer is really easy, once they're used to it. It takes about 15 seconds, and we need to do two puffs, twice daily. Just make sure your doctor gives you a demo in the office, and that you're comfortable doing it by the time you leave.
It has been a miracle, though. His asthma has been remarkably better since we started the stuff. His peds. pulm. is pretty sure it's kept him out of the hospital a bunch of times. In fact, we made it all of last winter without a single pneumonia or trip to the ER.
BTW, Cheryl -- he's on Flovent AND Singulair. And for us, that's really been the "silver bullet."
Everyone else -- please chime in with your thoughts and experiences!!!
21 comments:
Thanks, Aimee! It sounds like Chas' coughing is right in line with what you describe for your son. Usually, he only coughs when he cries but since stopping the Pulmicort, he just sort of coughs here and there and it sounds junky. Our appointment is next week so if this is a cold developing, it should be in full force or hopefully gone by then.
That's what I hate about this whole asthma thing -- sometimes you think things are getting worse when really, it's just a cold coming on -- which means it IS worse, but will get better.
Sigh. Anyway, we use an MDI and spacer with our albuterol. We have the nebulizer respules, too, but rarely take the time to use it. Normally, we're giving him albuterol in the middle of the night when he has had a bad dream or something and cries himself into a coughing fit -- if we did the nebulizer he'd totally wake up and we'd lose all hope of sleeping!
Thanks for this blog -- it's got a lot of WONDERFUL information and resources. I'll recommend it to any other mom of a kid with asthma I run into!
Wow, Cheryl. Sounds like Chas and Bryn have very similar asthma.
It's funny - sometimes I feel like he's a little smoker or something. He'll just cough a few times a night and that's that. Usually I'll start albuterol, just to be safe. And it is that "junky" cough, too.
Also, we have the same deal with nightmares. He'll cry himself right into an attack.
Weird!
Ever since my son's Flovent and Singulair kicked in, we have not made one hospital trip. He's only need steroids once and a handfull of nebs.
It was started after 3 hospitalizations, vials and vials of Xoponex and Prednisolone and little sleep.
Those meds are my Godsend!
You know, I was hesitant to say this because I don't want to scare people unneccessarily, but you all seem to be pretty level headed, so I'll share. Earlier this summer a 41-year-old friend of ours, very fit, died of a sudden asthma attack. He was found on a sidewalk, albuterol inhaler in his hand. We were shocked, of course. We mentioned it to our peds allergist who said most asthma deaths, and virtually all adult asthma deaths, occur because people stop using their controller meds or under-use them.
Everything I'd read before had me convinced that the Pulmicort would be well worth it, even if Chas did end up an inch or two shorter than he would have otherwise. But this was just a stark reminder. It breaks my heart to see moms stop the controller meds without consulting doctors, and makes my heart soar to hear moms like you guys talking rationally about their use. We all say things we use are "life-savers," but that is literally true in the case of controller meds.
OK, off my soapbox. Or, in this case, YOUR soapbox that I borrowed for a moment. :-)
Cheryl, my soapbox is always open to you!
I would like to chime in on the side effects of Pulmicort (with sort of relevance to the Singulair debate). My son experiences psychosis when on any inhaled steroid. He is 5, and we have tried various drugs over the years and tried each one more than once. This type of reaction is not really in the literature, but I can tell you from the "playground" discussions, it is more common than the drs. will admit. My son gets night terrors, regressed at potty training, had halucinations, tried to kill himself, attacked his 11 year old sister with a sharp object, beat a dog with a baseball bat, etc. This was not just a case of "kicking the dog once in a while" as was suggested of the mom who was withdrawing singulair from her child. Singulair works for my kid--no problems at all. When my child is off pulmicort, he is a perfectly normal kid. I have met moms whoose sons (always, always boys--why?)have been diagnosed with high-functing autism. When they stopped pulmicort, low and behold the kid was "cured." I just met a woman whoose 15 year old son had been in intense pyschotherapy since he was 5. Yes, he was "normal" before being on pulmicort, but his psychotic tendencies required treatment.
This is not to say that either of these drugs are bad or should be taken off the market. But we, the moms (and it generally does fall to us), need to stand up for what works for our kids and insist that drugs that cause problems be removed. Problem is, doctors think they know it all. I work with a pulminologist who has a son with similar asthma and reactions as my son. He "gets it." However, when my son was hospitalized last year, one of the puminologist's partners threatened to have my son placed in foster care so that he would have pulmicort administered!!!!
I would urge any parents who have seen adverse reactions in their children that they suspect are caused by a drug to report the incidence to the FDA at http://www.fda.gov/medwatch/index.html
Sorry to have ranted so long. Had to "educate" a new doc at the pediatrician's office again today as son was suffering from an asthma flare (new terminolgy by the way--not attack).
Chrysa Cullather
Wow, Chrysa -- that's some story! I've never heard of such a severe reaction to pulmicort. The things they *don't* warn us about.
Same effect with Flovent, or no???
Welcome, btw, and thanks for the link in your other comment.
Hi guys I am new to the asthma thing and any help would be greatly appreciated. I would like to say a big Thank you to Chyrsa's comments about the Pulmicort. My daughter is four and we have been struggling with asthma since moving to NC. The are calling it allergic asthma and we are going to see and allergist in two weeks. Riley is on Flonase, Singulair, and Zyrtec. When she flares obviously we use Albuterol and they would like us to use Pulmicort. But her behavior changes so drastically with it, she becomes agressive, can't sleep, nightmares, and melts down at the drop of a hat. My question is have you guys found an alternative to the Pulmicort??
Hi, My li'l one is 2 years 8 months old and has been on Pulmicort for 9 months now. The past 3 months he's been symptom-free and his ped said that we can slowly wean him off the Pulmicort until cold weather hits. I'm looking forward to a break , hoping that he'll catch up on his growth. He's little for his age and that is a constant worry for me since I am small too (although dad is tall). Almost all the kids I've seen who are on asthma meds seem significantly smaller than their peers. What are your observations?
On one hand,I'm excited about taking him off the Pulmicort,but on the other, I'm worried because he's starting preschool and I'm not sure how he can handle a cold without Pulmicort. The last 3 months that he has been symptom-free have also been cold-free months. What are your views/experiences on all this?
Thanks,
Archana
My son was born prematurely and is missing 25% of his left lung and the bronchial tubes are twisted into knots in his left lung. He has asthma like symptoms as a result of this birth defect. We used Pulmicort the first 3 winters (which were hard, he never slept through the night) and last winter switched to Flovent (just for the ease of it). However, on the flovent my son stopped eating, began waking up with nightmares, and became physically aggressive (hitting, biting) and has an emotional breakdown over the slightest things. We took him off Flovent for the summer and then started it again this fall. He is now 4 and half years old. The symptoms disappeared over the summer, but started about 2 days after beginning the flovent again. I refuse to give it to my child. However, the pulmonary specialists insisted we go back on the pulmicort. Have been back on it about a week and am starting to see similar behavior issues in my child (especially nightmares). He is also covered in eczema, when he is on this medication.
I'm totally frustrated. Feeling like a bad mom. I don't want him on all of this medicine. I feel like I'm in a catch 22. If I stop all the meds, and he catches a simple cold, we could be in for a real hard time, but if I leave him on the meds, we can hardly control his behavior, nor do we get any sleep.
Are there any natural remedies to help with the symptoms? Or other meds that any of you have tried that you might suggest for us to try. Since my gut instinct isn't matching what the doctor tells us, I'm just not sure where to go from here.
Sorry, I went on so long. Looking for a way to vent and maybe get some feedback.
Tami -- I'm so sorry! I'm posting just for you.
Thanks for the input. I'll give the vaseline a try. Anything at this point.
I am in a major metro area and working with a top pulmonary specialists at a Children's Hospital, so I feel like we have the best possible doctors.
My son has now been on the pulmicort for a little over a week. He rambles until about midnight in his room, and then gets up about 5 a.m. Definitely not enough sleep for a little body. He also started with the raspy, hoarse voice yesterday. His mood has settled down the last two days though.
I HAVE 2 YOUNG CHILDREN ON SINGULAIR AND ZYRTEC. THEY HAVE BEEN ON THE MEDS FOR 5 OR 6 YEARS. ONE ALSO HAS ASTHMA. THEY HAVE BEEN ON MORE MEDS SO FAR THAN I EVER WAS IN MY WHOLD LIFE. THAT MAKES ME MAD. I AM WEANING THEM OF THE MEDS TO SEE IF THERE WILL BE A CHANGE WITHOUT THEM BECAUSE THEY HAVE NEVER REALLY ENCOUNTERED MUCH OF A TIME WITHOUT BEING ON LOTS OF MEDS. I HOPE THEY WILL BE OK. CAN I HAVE YOUR OPINION OF THIS SITUATION. THANKS. FRUSTRATED IN MISSISSIPPI
HELP!!!!! My son is 7, was dx w/ asthma this past winter after a lifetime of treating what different ped's "thought" were simply nasal infections with antibiotics. We have recently went from zyrtec, to oral steroids, now on to pulmicort, albuterol and singulair. I am VERY afraid as my son is already a sensitive and emotional boy. It sounds like the pulmicort is simply a BAD med??? Does anyone have any homeopathic advice on treating asthma? My mom is permanently disabled from medications that were not properly tested and monitored,,,,,,, I am in search of help, not more hurt!!! - Tammy
Well...this will be the first comment I've posted online before. I have a 5 yr. old son w/ asthma. He never wheezes. Only coughes. But, boy can he cough! This started around 1 1/2 years. He would cough at night till he'd make himself throw up. My husband argued with me for a long time stating he didn't believe it was asthma because he didn't wheeze. He was taking pulmicort and it just didn't seem to do "the trick". He's been taking Flovent for a month and has been doing great! I wish you all the best!!!
I am new, but desperate to find some advice. My 4 year old has asthma and has been on albuterol, pulmicort, singulair, and prednisone for a few years on and off. His 6 year old sister brought a cough/cold home from school last week and now he is battling it. All of the parents of asthma children know that when they get a cold/cough...it's SOO much worse for them over other children. I'm at my wits end, he is coughing and coughing for days now. The doctor told me to do the regular routine...albuterol/pulmicort in his machine. It doesn't seem to be helping, he has made himself vomit 2 times from his coughing attacks. It's now Saturday night, 6:30 pm and he's coughing nonstop. He isn't wheezing, but his breathing is fast. The cough is the worst, and I don't seem to be getting much help from his doctor.
Any advice on how to help the cough even a little bit other than his albuterol/pulmicort/prednisone. I feel like I'm overmedicating him today. I'm so stressed, he can't stop coughing.
I'm not sure if it's time for a trip to the ER, but not sure what else they can do for him, we have all the meds right here, it just doesn't seem to be helping.
Sounds crazy, I know, but we can't always hear them wheeze - but we CAN always hear them cough.
I'd like to start by saying that I'm a nurse & I do understand the need for my asmatic son to be on Flovent. He has been out of control to say the least for the past year and a half. I am not sure what made me search side effects of Flovent, except that I've exhausted every other option. The energy level is exhausting. I fear that he is going to hurt himself. I have nightmares about not getting to him in time... Whether he's jumping from the 6th step, trying to climb up our stair banister, hitting me, hitting his sisters, throwing tempertantrum, ect. I really could go on and on. I figured for a while that this was 2 for a boy, but it isn't getting any better. His asthma is induced by colds, so this time of year he's on 4 puffs 2x a day. Does any one know of any other meds w/ out these side effects for a 2 1/2 year old? I love how Flovent controls the asthma, but thinking that our sweet son is in there somewhere is also heartbreaking. Any thougths or advice? Thanks,
Jenn
Just wanted to share... our boy was coughing and wheezing all the time from when he was about 2. We used Albuterol nebs all the time and Pulmicort when it was bad. As he got older we really just did Albuterol as needed and it seemed manageable with exception of when he was down with a cold. He had been to the hospital once or twice. We had Advair prescriptions but did not use it because did not thin we needed to. But at 7 years old during a cold he had a severe attack. We were giving him albuterol that day and then it just happened so fast that he almost stopped breathing and we had to call 911. It was the worst thing that ever happened to us and seemed we were very close to losing him. Since then we have been giving him Flovent. He does not seem to have any side effects at al from it and its been like a Miracle drug for us. He's been good even through colds. We don't want to have him on it because of possibly stunting growth but its worth it. We will never take him off preventatives again without doing it carefully with the DR. oversight.
My son has asthma, but recently I took him off his meds and have been giving him antioxidants..the best I found so far is the amino acid NAC, it has been wonderful. He was having so many side effects from the meds, also we are doing lung detox too. You can get these at any health food store. Just wanted to tell of some alternatives. The NAC I heard about from neighbor on lung transplant list, since taking this antioxidant she no longer needs the lung transplant. Also another alternative is to get tested for delayed food allergies and get rid of biggest culprits this should help decrease asthma if it contributes to the trigger/ or is the trigger. The delayed allergy is IgG which is differ from immediate IgE allergies. IgG allergy is a blood test.
Some discussion we've got going here, huh?!
Anon - great idea about the antioxidants. Of course, as always, I caution you all to *please talk to your doctor* before taking your child off controller meds and/or adding new treatments.
As far as Flovent side effects, I wonder if they are different if you switch corticosteroids and go to Qvar or Pulmicort instead?
Also, when #1 son was flaring less, he was taken off Flovent and kept on Singular. I wonder if that's an option for any of you?
Post a Comment