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Toddler Asthma/High Dose Inhaled Steroids

I wondered if anyone else has used high dose inhaled steroids for a flare plan?

 

I have a 2 year old who has a reactive airway since he developed RSV bronchiolitis at the age of 5 months. That landed us in the hospital for 3 days.

 

At this point he mostly just has a cough as his "asthma" symptom. He is seen by a pediatric asthma doctor at one of the top hospitals in the country.  When he gets a flare they have him do high dose inhaled steroids. For maintenance he is on Flovent 110mcg 2 puffs twice a day. For his flare plan he does Flovent 110mcg 3 puffs three times a day. We also do Albuterol. I try using a nebulizer but he is a typical 2 year old boy and won't sit still long enough. He is pretty good using the inhaler with spacer/facemask.

 

He has not required oral steroids. We did a 2 1/2 week trial of Singulair. Not sure that made a difference. October has been a bad month. We ended up doing the flare plan 3 times. He attends daycare 3 times a week. URI's seem to be his biggest trigger. 

When he has a flare he can cough through most of the night. This usually goes on for a least one night until it is usually under better control. I will wake him up sometimes (because he is trying to sleep through it) and give him Albuterol. Sometimes that really doesn't do much. The asthma doctor thought perhaps he was just having a lot of postnasal drip and that if it were his asthma the albuterol would have helped. 

I'm a little nervous about him being on such high doses of inhaled steroids. I wondered if anyone else was doing this as well?

 

Thanks,

 

Andrea

 

 

 

 

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Comments 46

  • K8sMom2002

    Welcome, Andrea, and . It's really tough to see a toddler struggling to breathe or cough all night. My DD's biggest trigger was and is upper respiratory infections as well.

    It sounds like you're worried that the the side effects of the inhaled steroids might be similar to oral steroids? 

    From what I've read in articles like this journal article about , that's not the case. The body absorbs a lot less of the inhaled steroids compared to oral steroids. 

    My DD's flare plan actually requires going on a burst of oral steroids — which makes me really nervous. Like you, I have a healthy respect for steroids!

    When you say "flare," what do you mean? Has your doctor given you clear guidelines so you're on the same page? 

    What did the doctor suggest to address the post-nasal drip? For my DD and me, even post nasal drip can be a trigger for asthma flares — the coughing seems to stir up the mucus, which seems to inflame her lungs, which stirs up more coughing and still more inflammation.

    I've heard of parents letting their kids watch videos or doing other kid-friendly activities (finger paint, Play-dough) to keep their kiddos still enough while doing nebulizers, and they only get to do that WHILE they're nebbing. Is there any activity that he really likes that you could use as "bait" to get him to cooperate better? 

    Asthma is a tough beast, especially for little kids, and it can get ugly in a hurry. We're here for you … you're not alone in this!

  • Kathy P

    Welcome Andrea. Our plan, when my kids were little, was to increase their inhaled steroid during a flare. There were times when we had a hard time going back down. For us, it was important to keep up with the higher dose til we were well past the flare. Otherwise we'd wind up back in a flare. 

    My kids always managed with a mask holding chamber, so I didn't have to get them to sit still. I know other parents who would use diversion for nebs. Put on their favorite video or let them play with a special toy they only get when the neb comes out. Some have had good luck with the fun masks- I know there is a fish one. 

    It's hard to think of our kids on strong meds. I used to worry about all the inhaled steroids too. Mine were always on nose spray and inhaler. They are now 17 and 19 and don't seem any worse for wear. Both currently have well controlled asthma, but it will flare with illness or allergies. When that happens, they ramp up their inhaled steroid. 

  • andreakath

    Thanks for your replies. It is nice to know that you are not the only one struggling with this.

     

    As far as flare: we were instructed to start it for one week if cold symptoms were worsening or if I start to notice a nighttime cough. My threshold is usually a cough at night that lasts longer than 5-10 minutes. He has not wheezed since his RSV at 5 months and usually he doesn't seem bothered or in distress by the cough. Since he is older and now more mobile I have noticed the cough with activity during his flares.

     

    I've tried letting him watch the iPad when doing a nebulizer and that sometimes help. I was also diagnosed with cough variant asthma last year and sometimes a little pulmicort neb just gets me over the hump (it works like magic!) I will sometimes pretend to do my nebulizer with him and depending on his mood that sometimes helps.

     

    When I notice the PND I am going to start giving him Flonase per his doctor's recommendation. I did that with the last flare and that seemed to help. He is usually on Zyrtec too. Cool mist humidifier hasn't really seemed to help.  A little Vick's on the chest too. Elevating his pillow and trying to teach him to blow his nose. I just feel so bad when the little guy is coughing all night long. I hope it's not a long winter!

  • K8sMom2002

    Glad you feel less alone! I hope he had a better night last night?

    A couple of things that stuck out from what you said:

    Wheezing and asthma: sometimes the wheeze is not necessarily audible except with a stethoscope. I always thought that people with asthma had an audible wheeze when they breathed during an attack until I was diagnosed with asthma in my early 30s. When the doc told me I was in the middle of an asthma attack, I pointed out that I wasn't wheezing.

    He took the palms of his hands and pressed them against the sides of my ribcage and told me to breathe out. I sound like a tea kettle! 

    Flonase: when our doctors prescribed flonase for us, it was to be used daily along with antihistamines to prevent allergic reactions that would trigger asthma attacks. 

    Vicks has been a great help to us over the years, but humidifiers haven't necessarily helped.

    Another thing that has helped us in the past was to use decongestants, but I'd definitely speak to your doctor before adding any over the counter decongestant to your son's mix of meds. For us, decongestants help prevent an upper respiratory infection from turning into a full-fledged sinus infection, which seemed to always trigger a huge flare for either me or my DD. 

    Also, DD is allergic to corn, so a lot of OTC cough suppressants or syrups are not safe for her. I've used straight honey as a cough suppressant once I read a few medical journal articles like this about

  • Shea

    I have a 4 year old, and the shows that had kept him still and calm for the longest at age 2 were Baby Einstein (Baby Mozart especially), and Tellitubbies… Maybe you could try those if/when nebulizing? Nebulizing works better for me, but it does take a lot more time.. I get restless too and I am 30 years older than he!

    2 questions: Have you had him allergy tested? And, Do you have cats or dogs in the home? (My son and I have severe cat and dog allergies, and it is one of the most common allergies and easiest thing under your control to in your home environment, if he is allergic it is likely contributing to asthma, in which case it would be great to know so you can avoid any allergic triggers).

    An allergist can do a skin test for cat and dog dander allergies, as well as to other things people are commonly allergic to. The test is pretty accurate, (although it can tell you he is not allergic when he still might be, it does not tell you he is allergic when he is not. You can re-test later if you suspect that an allergy that he previously tested not allergic to is triggering asthma and may find out he us allergic, but if the test says he is allergic to something, it is most likely he is.)

    Singulair is a drug that has been correlated with a higher rate of prevalence of a chronic allergic disease called Churg-Strauss Syndrome, a previously rare disease. I was diagnosed with CSS after taking Singulair for 2 years, and have been told by more than one specialist that they believe it is not a good medication. Although they havent proven causation of taking Singulair to getting CSS, there is a high correlation and more than one doctor believes a causal relationship is likely. (I had never been informed about this correlation prior to being diagnosed with CSS after it caused me a heart attack, so I always tell people about that correlation when I hear Singulair, and recommend the doctor keep a close eye on Eosinophil levels in CBC bloodwork if they do take Singulair).

    I pray your son's coughing eases and he is able to have nice, clear, deep breaths. Hopefully once the inflammation is knocked out, he can wean off these meds and inhalers and eventually not need anything!

    The only home remedy I can recommend is creating a sanctuary in his room where he sleeps and spends most of his time. It took me a while to make one for my son and myself, but it surely helped reduce medications and improve symptoms for us. My son is not on any medications besides occasional benadryl and zyrtec, and rarely gets URIs since I have made our homes and rooms into what I call sanctuaries (following all the allergy and asthma recomendations: cases on pillows and mattresses, washing mattress pades, bedding, and curtains in hot water once a week in allergy-asthma friendly detergent, vacuuming area rugs at least twice a week (not near bedtime), preferably no carpet, but if so, steam cleaning as well, and I keep a HEPA air purifier in his room). I hope some of this info helps!

  • K8sMom2002

    Shea, you have some good tips — I still remember Baby Einstein lulling my DD into a nice calm during carseat trips, and she hated the carseat!

    One thing, however: allergy tests — either blood tests or skin prick tests — can only show that a person has a sensitivity to a particular allergen, not necessarily a true allergy. In other words, you CAN test positive to something that doesn't create a reaction to you. 

    As the  puts it:

    a positive test per se does not establish the presence of clinical allergy. That is, simply because a patient has IgE against the allergen that can be detected by either in vivo or in vitro testing, does not necessarily mean that exposure to that allergen will produce a reaction. This is an extremely important concept, and is key to the understanding of test results. And this is where the training and experience of the physician caring for the patient is of greatest importance.This phenomenon is known as sensitivity in the absence of clinical reactivity. For example, on occasion, we see patients treated for allergy on the basis of a very low score on a blood test when in actuality, the patient has no symptoms when exposed to that allergen. This is more commonly seen in food allergy than it is in respiratory allergy, but does occur in patients with respiratory allergy as well.

    If you have a documented reaction and a positive blood or skin prick test, then it's a pretty safe bet that you have a clinical allergy to that substance. 

    On the flip side, a person can have a negative result to the test but still be allergic. From what I understand, reactions (or the lack of one) trump test results.

    I really like your advice to make a "sanctuary" out of a kiddo's bedroom. Asthma and allergies both tend to kick up at night – though it's not really understood why. has a rather science-y discussion on the different possibilities. But keeping your bedroom a sanctuary is good advice regardless of the reason asthma kicks up at night.

  • Kathy P

    Andrea – that sounds similar to our "sick plans". We start or ramp up both the ICS (inhaled corticosteroid) and the nasal spray (such as Fonase). That has really helped to keep things under control for myself and both my kids (whey they are compliant! Ugh teens!) My teen boy, the most non-compliant of the bunch, has realized that enacting his sick plan is important. He had a viral infection last month and as soon as he started feeling it, started the Fonase and Mucinex and albuterol (he's not currently on an asthma preventative). He got hit hard from his other issues, but his sinuses and asthma did not flare and he avoided the lingering aftereffects.

    I don't wheeze either – I mainly cough. There have been times when I'm in the doctor's office coughing my head off and still moving air in the my lungs with no wheeze at all. I only wheeze with bronchitis or pneumonia. For me, keeping the cough under control is important. The cough further irritates the lungs. I've been instructed to use my albuterol if my asthma coughing starts. If that doesn't cut it, then I add cough suppressants.

    Early on, my kids' biggest environmental allergy issue was dust mites. We encased their mattresses and pillows and made sure to wash all their bedding regularly in hot water.

  • andreakath

    Thanks for all the great suggestions and replies. I have been doing some of the things such as washing bedding in hot water once weekly. I have slowly been taking out the "dust collectors" in his room. I purchased coverings for his mattress and pillow.

    I actually took him for a second opinion this week. This doctor thought he was on super high doses of Flovent considering we have not had ER visits, oral steroids etc. She also suggested that the "flare plan" we do has not been proven to prevent him from ending up on oral steroids etc. She also said that theses doses that he is on have not been included in the studies that say the side effects are small.  She made suggestions for decreasing his maintenance Flovent a bit and a "flare plan" that is a bit more modest. I thought she seemed to really know the data. The only problem is my original doctor is in the asthma department at one of the top children's hospitals in the country. It is hard for me to think that our plan doesn't seem to be universal in the community. 

     

    She also gave me a prescription to try the steroid (pulmicort) in his nebulizer during a flare. This is something the original doctor wouldn't do.

     

    Neither recommended allergy testing at this point.

     

    This week has been better than any week in October. 

     

     

  • K8sMom2002

    So what will you do? Give the second opinion doc a try? It sounds like you have confidence in her knowledge and that she took time with you to go over your concerns, and that's important. But I also hear some doubt in your words. What would ease your mind?

    One thing that I might suggest doing is to keep a diary of what has been going on right before a flare — just a short recap of the day, whether he played outside, what he had to eat, what the weather was like, what was blooming. You can find out what is blooming on  by typing in your zip code.

    If there are any stuffed animals that he absolutely adores and can't live without long term, but you can't wash, you can wrap them in a plastic bag and stick them in your freezer for 24 hours. That's part of the advice that Nationwide Children's Hospital gives .

  • andreakath

    I feel like I don't have much to lose by trying the second opinion doctor. CHOP doesn't want to see us back until March. The second doctor was very kind and basicly told me I could still see CHOP too. It gives me time to try the second doctors plan. 

    I was thinking about just creating a more detailed log like you suggested to see what is going on around the flare ( usually it involves an upper respiratory infection ) and the medications and his response during flare.

     

     

     

     

  • K8sMom2002

    Then it sounds like a win-win! I love it when doctors are open to other opinions and will really listen.

    And I'm a big believer in keeping detailed logs. It was the only way we figured out exactly what was going on with our DD. 

    Another way that you can do a two-for-one — you can "log" it here on this thread, kind of like a daily journal, and that way you're sharing your journey and getting support and encouragement, but you also have it at the ready when you need to go back and find it. You can print out individual replies by clicking on the "Take Action" link at the bottom right hand corner of a reply.

    I found, when we were in the process of adopting our daughter, that I couldn't stick to writing a journal entry every day — but then I realized that my emails to friends were almost exactly like a journal entry and contained all the information I wanted to include in a journal entry. So I printed them out and put them together for DD to read when she was older. Win-win — I saved time, and she has the play-by-play of our adoption journey if she's ever interested in reading it.

  • Jen

    andreakath – I think your approach of working with the 2nd opinion doctor for now seems very reasonable.  Glad to hear this week has been a good one.

  • Shea

    Andreakath, from my experience, "hospital doctors" often treat things more aggressively, and they are great at getting people stabilized, but doctors who do not work in hospitals sometimes are better with moderate cases and treatments, as well as individualized treatments. I think both "types" of doctors are good, it is simply that setting plays a role often in how to treat. I started with my hospital doctors after discharged with my diagnosis, and followed up with them, but I was not comfortable with my medications, and even though I was so thankful and even kind of attached to the doctors who helped me so much in the hospital, I had to find the right long-term doctor that I felt comfortable with discussing my medications, and it took me two tries but I found a great doctor, he has been managing my disease for over 4 years now, so it was worth it. The right doctor us the one you are comfortable with discussing medications with, and who you feel is a good fit.

  • andreakath

    This week has been good . . . I decreased his maintenance steroid by 25% and will probably just hold there for a few weeks and see what happens. Thanks for checking in and all the great suggestions.

  • K8sMom2002

    I'm glad you could decrease his steroids! How's he doing? Did you guys have a good weekend?

  • andreakath

    So far so good. . . I'll probably see how the rest of the month goes before decreasing any further. 

  • K8sMom2002

    Slow and steady wins the race! When do you guys see the doctor again? What other things are you doing that you think is helping?

  • andreakath

    we will see her back in about 2 months or so. I did take out all the stuffed animals that could not be washed from his room, removed his curtains and bought allergy coverings for his pillow?

  • andreakath

    Think it's still too early to know. The flares usually seem to be preceded by a cold. But I have not noticed a baseline cough with the decrease in his meds which is good. 

  • K8sMom2002

    That is good — it sounds like he's holding his own. And your son might be like me and my DD — a cold is often just what sets off one of our asthma flares. I think it must happen a lot like that with quite a number of folks who manage asthma.

  • Jen

    @andreakath - How are things going this week?  Will you be in town for Thanksgiving or do you travel?

  • andreakath

    Hi Jen . . . Things are going ok. I have noticed a slight cough since decreasing his Flovent. Nothing crazy but I notice like the slightest cough since I'm his Mom!

     

    We didn't have to travel this year which was nice.  Hopefully everyone had a nice relaxing Thanksgiving.

  • Jen

    Glad it's going ok.  I hear you about being on high alert.  I can be that way with my oldest who has food allergies.  She throws up and I check for hives.  Most of the time it's just a stomach virus, but the food allergy mom in me can't help but check.

  • K8sMom2002

    @andreakath, Hope Thanksgiving was peaceful and nice and you could concentrate on enjoying the day rather than worrying about breathing and lungs … how did he do over the holiday?

  • andreakath

    He had a bit of a flare. Started coughing through his nap right after Thanksgiving. I tried the second doctors flare plan. I used his nebulizer with steroid instead of his flovent and spacer/facemask. We also only did the plan for 5 days since his symptoms were controlled pretty quickly. I just restarted his maintenance Flovent today so we will see how it goes!

  • Kathy P

    Did using the meds in the nebulizer seem to stabilize things faster than when you just used the inhaler/spacer in the past? Hopefully he can continue on maintenance.

  • andreakath

    I want to say the nebulizer did help more but I also think I was able to start his "flare" meds before that really bad night time cough started to kick in. 

  • Kathy P

    That's good. I know for myself, realizing early and starting my sick plan is key. It means I can usually keep things in check.

  • K8sMom2002

    Good to know he responded quickly — sounds like you caught it in time and it didn't have a chance to spiral into something worse! What do you think triggered the flare to begin with?

    How's he doing now?

  • K8sMom2002

    AndreaKath, checking on you guys to see how you are doing? Is your little guy doing better? Has he had any more flares?

  • andreakath

    hi there- thanks for checking in! We have been doing well. He is down about half of his maintence dose since November. I certainly don't think he is worse!

  • K8sMom2002

    That's great! It sounds like you and he will have a great holiday time, then! What sort of plans do you guys have?

  • K8sMom2002

    AndreaKath, just checking in on you — how did the holidays treat your little guy? I hope all is well!

  • andreakath

    He has been doing well . . .  still on the lower Flovent dose. We saw the second opinion doctor back and I think we are going to stay with her for his care. Will leave the door open at the university hospital if needed.

    I have been managing a cold induced flare myself this past week. Using albuterol, pulmicort neb and prescription cough medicine to sleep at night.  I only cough. I seem to have a handle on it.

     

    Thanks for checking in !

     

  • K8sMom2002

    It's so nice when you find the right fit for doctor and patient, and I'm glad you can leave the door open for the other provider as well. 

    Hope your own flare gets better soon — but if not, take it from me, see your doctor. The last time I thought I could handle it on my own and that it was "just a cough," I wound up with a not-so-lovely case of pneumonia.

  • Kathy P

    Glad you are doing well andreakath. Hope the little guys is still doing well on the lower dose and can stay there.

  • K8sMom2002

    @andreakath, are you guys back to normal yet? Here's hoping that something else didn't jump on you while you were recovering from the other …

  • Jen

    @andreakath - Have you managed to keep everyone's flares under control?