More asthma questions...

[Annie N]

Hi all,

My 4 children have all ben dxed with asthma, two are on Singulaire,1 is on Advair, and one is not on regular meds, just an inhaler when she needs it.

 

I want to go and talk to the PA who is treating them because I am not really happy with things as they are. I don't think that the meds are doing much if anything to reduce any of their symptoms, and I am not happy that they are taking these meds every day with so little benefit when there is no real understanding of long-term results in children. I could see it if my children had to be taken to the emergency room and now didn't, or if they were constantly suffering but now aren't, but that is not the case; instead we have that they are sometimes sick off it and sick about the same amount of times and for about the same length of time on it.

 

I wanted to suggest to her that we get a nebulizer and use the medicine that she gives to them when they got really sick and they weren't on the meds. That way they could use the nebulizer the one or two times a year that they really need it and not have to take the daily meds.

 

Do you think that this is a reasonable request? The nebulizer did seem to get them over the hump in their recovery.

 

Thanks very much :)

[TeacherZee]

Here is what I do:

 

I am rarely sick with my asthma. I have a preventer inhaler (steroids) and an emergency inhaler (ventolin). With my doctors full knowledge (and to me that is important) I use my preventer when I start feeling a cold coming on and during the worst of the pollen season (I should be starting that now). I use my emergency inhaler maybe every 2-3 months, sometimes less than that.

 

I think you could certainly discuss it with them.

[Annie N]

Here is what I do:

 

I am rarely sick with my asthma. I have a preventer inhaler (steroids) and an emergency inhaler (ventolin). With my doctors full knowledge (and to me that is important) I use my preventer when I start feeling a cold coming on and during the worst of the pollen season (I should be starting that now). I use my emergency inhaler maybe every 2-3 months, sometimes less than that.

 

I think you could certainly discuss it with them.

 

This is great :) I had no idea--she just seemed to assume that they needed these meds all the time, and I really know so little about asthma and am not so great with all that stuff. Thanks for letting me know about this alternative.

[East Coast Sue]

My 3 year old son was just last week dx with asthma (by an allergy & asthma doctor). He has a nebulizer b/c a few weeks ago he had bronchiolitis and we received a prescription for albuterol and a nebulizer at that time (from an urgent care center). Following the bronchiolitis dx, we had an appointment with an allergy & asthma specialist. I suspected food allergies but we found out lots of helpful information. My son's allergy & asthma doctor feels that my son should only need a nasal spray and albuterol as needed- absolutely he wants to keep him off daily meds as much as possible. If at all possible, I would recommend finding a specialist (allergy & asthma) and consider testing for environmental & food allergies- not only to find the right medication but also to get to the bottom of your kids health issues- I think you should see a benefit to using the medicine for asthma, IYKWIM. My son's problems were almost completely gone within 24hours of our appointment- we will only use the medicine when needed and I am so thankful for that! I hope the best for you & your kids.

 

Sue

[dtsmamtj]

WOW, I agree with others who have posted. I too have asthma and ONLY use my Xopenex when needed and my Advair sparingly - the side effects can be brutal. I pick up usage when I am coming down with a cold, but that is it. I also have a little plastic breath/air measurer that I use to catch any decrease in air flow before an attack hits - and I only use this when I feel a shortness or breath. After being hospitlaized two years ago for severe asthma I learned that I needed to be proactive (learn my triggers, etc.) rather than reactive (waiting for an attack to hit). This cut my medication use down to a low minimum. HTH

 

T

[Hoggirl]

WOW, I agree with others who have posted. I too have asthma and ONLY use my Xopenex when needed and my Advair sparingly - the side effects can be brutal. I pick up usage when I am coming down with a cold, but that is it. I also have a little plastic breath/air measurer that I use to catch any decrease in air flow before an attack hits - and I only use this when I feel a shortness or breath. After being hospitlaized two years ago for severe asthma I learned that I needed to be proactive (learn my triggers, etc.) rather than reactive (waiting for an attack to hit). This cut my medication use down to a low minimum. HTH

 

T

 

Could I ask waht the side effects are which are "brutal?" My ds is in Pulmicort right now, and I have wondered what side effects there might be. One of my son's MDs wants to keep him on it indefinitely.

 

I think the advice of seeing a specialist is a good one. However, you are going to find opinions which are all over the map. My son sees an allergist and allergy shots have helped him tremendously. However, he was having some shortness of breath issues last summer and the allergist eventually sent him to a pediatric pulmonologist. The latter is the one who put him on the Pulmicort and she makes no bones about the fact that she is very "aggressive" in the usage of maintenance inhalers long-term. I have really struggled with the arrogance of this particular MD and her completely dismissing my concerns as well as those of the allergist. Honestly, I thinik she may have a touch of anti-homeschooling in her!! At any rate, I have expressed my concerns to the allergist who completely disagrees with the pulmonologist. I plan to discontinue visits to the pulmonologist (allergist wanted to make sure nothing was being missed - my son only has mild asthma so I don't feel the need to continue seeing her - especially since I don't like her!) and let the allergist handle it. The allergist is in favor of backing off the Pulmicort. She believes that one should ONLY be on the lowest dose absolutely necessary.

[TeacherZee]

Could I ask waht the side effects are which are "brutal?" My ds is in Pulmicort right now, and I have wondered what side effects there might be. One of my son's MDs wants to keep him on it indefinitely.

 

I think the advice of seeing a specialist is a good one. However, you are going to find opinions which are all over the map. My son sees an allergist and allergy shots have helped him tremendously. However, he was having some shortness of breath issues last summer and the allergist eventually sent him to a pediatric pulmonologist. The latter is the one who put him on the Pulmicort and she makes no bones about the fact that she is very "aggressive" in the usage of maintenance inhalers long-term. I have really struggled with the arrogance of this particular MD and her completely dismissing my concerns as well as those of the allergist. Honestly, I thinik she may have a touch of anti-homeschooling in her!! At any rate, I have expressed my concerns to the allergist who completely disagrees with the pulmonologist. I plan to discontinue visits to the pulmonologist (allergist wanted to make sure nothing was being missed - my son only has mild asthma so I don't feel the need to continue seeing her - especially since I don't like her!) and let the allergist handle it. The allergist is in favor of backing off the Pulmicort. She believes that one should ONLY be on the lowest dose absolutely necessary.

 

I can't take Pulmicort. It actually increased my asthma attacks. The steroids also did something to my vocal chords, they gave me a husky voice and a sore throat.

[Hoggirl]

I can't take Pulmicort. It actually increased my asthma attacks. The steroids also did something to my vocal chords, they gave me a husky voice and a sore throat.

 

I find this fascinating. We also saw a Speech Pathologist (at the pulmonologist's request), b/c she thought ds might have a vocal chord dysfunction. The speech pathologist thought he did, but he had been on some type of steroid inhaler for quite a while. I wonder if the Pulmicort was the culprit of the vocal cord problem?! My son's voice is also changing so I am not sure how (or if) that factors in at all.

 

Ugh.

[BMW]

You want to consider how your children are when they are not sick at all. Prior to being given any daily meds, when they were not sick, did they wheeze occasionally? daily? seasonally? at bed time?

 

A general rule that I have been asked about and heard over and over for many years is that when a person has to use an inhaler to stop the wheezing more than 1-2 times in a week, they should be on medication to prevent the wheezing altogether.

 

I have children in similar situations. One wheezes about 3 weeks out of the year and had been on medication year round. I stopped that and knew that I was knowledgable enough to handle this situation. He takes a daily medication for those few weeks of the year (mid spring). The rest of the year, he is just fine and never has to take an inhaler and has no wheezing.

 

Another son wheezes with exercise. He takes albuterol before pe or tennis. He is a teen who was raised with asthma and he understand what to do. He used to have much worse asthma and was on a daily medication. He has to go on daily medication with sickness, and since he gets triggered by cold, winter air, he takes a smaller dose of daily med. during the cold months.

 

Another son would wheeze every day, non stop and have bad attacks without daily med. I don't like it that he has to take something daily, but I want him to keep breathing and we have tried several different meds... It is most important for him to take daily meds. If you have one like this, be very careful about limiting meds. This son gets colds and can end up in respiratory distress and in the hospital in a flash. And that is ON medication.

 

We have a nebulizer for home use and it comes in handy when they get colds. The danger comes when a parent doesn't pay attention to the warning signs... If your child uses a nebulizer and continues wheezing, you need to call in to the dr. We've had to use them every 4 hours round the clock, but I know what to look for with respiratory distress. You need to be well grounded in this area.

 

Medication does have side effects. If a child takes advair it is my opinion that he/she should be eating lots of calcium rich foods. Advair is not good for bones. I don't have anything else to offer except that over the years I have heard others mention that and I read about it once. I would take a close look at meds and do your research. I don't like children taking meds if another option works... just study it out, know your children and get that appointment to discuss it with the doctor. A doctor is much more willing to work with this with you if he knows that you are educated about it.

[TeacherZee]

I find this fascinating. We also saw a Speech Pathologist (at the pulmonologist's request), b/c she thought ds might have a vocal chord dysfunction. The speech pathologist thought he did, but he had been on some type of steroid inhaler for quite a while. I wonder if the Pulmicort was the culprit of the vocal cord problem?! My son's voice is also changing so I am not sure how (or if) that factors in at all.

 

Ugh.

 

It could very well be the case. My throat got better when I switched medication. I also started using a spacer when I need to use the steroids. You might want to ask if they can prescribe that for your son.

[AnnetteB]

Here is what I do:

 

I am rarely sick with my asthma. I have a preventer inhaler (steroids) and an emergency inhaler (ventolin). With my doctors full knowledge (and to me that is important) I use my preventer when I start feeling a cold coming on and during the worst of the pollen season (I should be starting that now). I use my emergency inhaler maybe every 2-3 months, sometimes less than that.

 

I think you could certainly discuss it with them.

My own asthma is controllable in a similar way, but I would like to ask if the children have had allergy testing? Knowing and avoiding the "triggers" of each child's asthma is part of managing the condition. I have a lot of triggers, but one of our dc has only a few and he can avoid them (and inhalers completely). an aside here, Has anyone noticed how ineffective the new inhalers are now that they are designed to not add to ozone depletion?? Honestly, we inhale the propellant and it couldn't really be that big of a factor in the scheme of things.

[TeacherZee]

My own asthma is controllable in a similar way, but I would like to ask if the children have had allergy testing? Knowing and avoiding the "triggers" of each child's asthma is part of managing the condition. I have a lot of triggers, but one of our dc has only a few and he can avoid them (and inhalers completely). an aside here, Has anyone noticed how ineffective the new inhalers are now that they are designed to not add to ozone depletion?? Honestly, we inhale the propellant and it couldn't really be that big of a factor in the scheme of things.

 

I definitely agree on finding out the triggers.

 

My triggers are pollen (which is why I use the preventer during the pollen season) and colds (any cold goes to my chest without passing go hence the preventer when I have colds).

[Desert Rat]

Yes. Both my boys are on Singulair and Zyrtec daily to prevent flair ups. When they get a cold or during allergy season we use a nebulizer machine with Xopenex and, during particularly rough times, Pulmocort. Pulmocort works really well but makes them have, what we all, the steroid meanies. I have a rescue inhaler too.

What we're doing now is changing the environment in which they live. I'm already on the uber-neat side but living in the desert I just can't keep up with the dust. We've taken out all mini-blinds and I wash the curtains every 6 weeks or so. We've torn all the carpeting out of the house except for the master bedroom which will probably be leaving next year. After visiting someone with animals or during high pollen season we strip down in the garage and take shower straight away.

Cutting down on triggers has helped my asthmatics immensely.

HTH

[sixpence1978]

I definitely agree about finding the triggers, but complete avoidance isn't always possible either. My DS has asthma and a severe dust allergy. It doesn't matter how much preventative care I do, I can't completely eliminate the dust. He also is more likely to flair up with a sickness more than anything else.

 

He was on Singulair for a while, and we hated it. It did nothing to help him and made him more aggressive. The Advair didn't do much for him either. What we do now is take Zyrtec during periods of high pollen, or when we are going to other people's houses for extended periods of time. He has a standard Albuterol inhaler for the occasional flair up. He also has a nebulizer that we use with Albuterol and Pulmocort (I am not sold on this steroid, but it is what we use) when he has a cold.

 

The nebulizer works so much better at getting the medication in his lungs, that when he is really fighting something or struggling to breathe, it works 10x better than using an inhaler.

 

I also just use Albuterol for flair ups, and add in a steriod inhaler when I feel a cold coming on. It works well for us here. That way we aren't taking something everyday.

[Annie N]

Well, I'd love to take them all to an allergist, but...

 

Thanks so very much for all this very helpful information :) They are ok most of the time, and when they are ok, they are very ok.

 

But when they catch a cold, they really thoroughly catch it, and then they have problems. And in the late summer, they all seem to get sick and the PA attributes this to something going on at that time on the farms which surround us (but a neighbor said that a lot of people seemed to be allergic to some plants which flower around then--she's lived here all her 80 years...). We have not yet started off late summer already on meds, so I don't know if that would help, but that is the time when three were dxed and they had to go in for nebulizer treatments, which really did help them a lot.

 

But with the colds--maybe the daily meds are keeping their peak flow ratings higher than they otherwise would be, but now they are falling. I am not very good at having them test with the PFM all the time, after several weeks of testing with their scores being normal, we fall off, and then I don't think about it until they say they feel that certain way.

 

So, I would be ok with the idea of their taking the meds starting in mid-July to see if they helped them through August, and then getting off them. If the meds helped, then we could do that every year.

 

And then just keep their inhalers (which are the kind for emergencies rather than for regular use, I think they used to be called Albuterol?) around--they rarely need them except in August and September, just occasionally when they are having a bad time recovering from having a cold.

 

The most helpful thing in August in terms of getting their PFM scores up has been the nebulizers.

 

My older son has always had problems with wheezing, and my younger daughter might have some problems with allergies to something near her camp, but other than that, I am assuming that since they are so ok normally that they are not allergic to anything that is around the house all the time (like dust, dogs, and the like), or any foods that we normally eat.

 

I do find this rather confusing and the fact that everything changes yearly makes it take so much longer to figure it all out and that is rather difficult too.

 

Which is why I so very much appreciate y'all's help, because I am very clueless!

[AnnetteB]

Even though the testing was expensive(we didn't have any insurance at the time) it proved invaluable. I have intrinsic and extrinsic asthma. Cold weather, exercise, smells, laughing, and emotion could trigger mine as well as allergens :( I turned out to be allergic to pollens, trees, grasses, chamomile, lettuce! peas, tomatoes, danders, molds, dust, birds, cats, dogs, hay(but not horses...but where do you find a squeaky clean horse?), rabbits, all rodents really, almonds, walnuts,,,,,the lists went on and on. My dh thought I was exaggerating until he saw the written test results :tongue_smilie:

[elizabeth]

I also have dealt with this in my dd. We homeschooled initially due to the overwhelming allergen exposure at school...parochial ,wearing uniforms , not washing the clothes after playing with cats...it was endless and awful. Soy farming is a very common allergy trigger as well. We have been off singulair for 3 years and only because we learned what she was allergic to and are able to avoid those triggers. It becomes like a carousel ride but not fun. Chronic asthma attacks cause permanent damage a type of scarring of the lung tissue so every time that an attack occurs this damage occurs as well. It is definitely best to use a maintenance product and avoidance of the triggers as opposed to rescue medicine for this reason. It is just a really tough situation as well once you know the triggers because folks that do not have to deal with this cannot get it through their head that this can kill period. Thus when you cannot go to a house due to cats, dogs or what have you the person often just does not get it that asthma kills and thinks of you as being hypervigilant etc they just have no idea what it is like to see your childs eyes tear up as they struggle to get air.

[Pine Ledge Academy]

I would ask. My husband is a PA and my oldest son has asthma. We use his meds as needed, being thankful for them when necessary, but realizing there are side effects of long term use. Some MD's believe that people with asthma should be on meds all the time, but hopefully your provider will be open to usage only as needed. All that to say, we have had times, once a year or so, where a cold had caused enough inflammation that the inhalers are not as effective and we have gone to Urgent Care for nebulizer treatments. I would learn the signs of their asthma and treat early on...my son starts coughing fits that become more frequent if not treated....and treat sooner rather than later. hth

I would add, that he has a very mild case....not as the above poster had mentioned. Some asthma will need continuous treatment or the side effects of the triggers can be deadly.

Edited March 3, 2009 by Pine Ledge Academy
clarification

[Mommyof4ks]

I agree finding the triggers or at least finding the times of the year the asthma seems to be a problem. Some people have worse symptoms than others also and very aggressive treatment is needed for those people.

 

My son is allergic to something outdoors during March and April and something else in September-November, so we have him on Asthmanex during those times. He does have a rescue Xopenex inhaler and a nebulizer for the times when his oxygen levels drop (cheap pulse/ox machine works great). This keeps him out of the ER. He is allergic to other things too, but they do not trigger his asthma, but his ezema is another story lol.

[Annie N]

Even though the testing was expensive(we didn't have any insurance at the time) it proved invaluable. I have intrinsic and extrinsic asthma. Cold weather, exercise, smells, laughing, and emotion could trigger mine as well as allergens :( I turned out to be allergic to pollens, trees, grasses, chamomile, lettuce! peas, tomatoes, danders, molds, dust, birds, cats, dogs, hay(but not horses...but where do you find a squeaky clean horse?), rabbits, all rodents really, almonds, walnuts,,,,,the lists went on and on. My dh thought I was exaggerating until he saw the written test results :tongue_smilie:

 

Thanks so much, Annette. Did you have the kind of asthma where you had to go the hospital? Because my children don't have it that much--it's really only a couple of times a year that they get bad, and even then, it's not so bad that they have to go to the hospital, just like they have a really bad cold. I take them in to our regular provider, but they can take us within a day or two of calling, I might have to do osmething different if they told us we had to wait a week to go in, iyswim.

[Annie N]

I also have dealt with this in my dd. We homeschooled initially due to the overwhelming allergen exposure at school...parochial ,wearing uniforms , not washing the clothes after playing with cats...it was endless and awful. Soy farming is a very common allergy trigger as well. We have been off singulair for 3 years and only because we learned what she was allergic to and are able to avoid those triggers. It becomes like a carousel ride but not fun. Chronic asthma attacks cause permanent damage a type of scarring of the lung tissue so every time that an attack occurs this damage occurs as well. It is definitely best to use a maintenance product and avoidance of the triggers as opposed to rescue medicine for this reason. It is just a really tough situation as well once you know the triggers because folks that do not have to deal with this cannot get it through their head that this can kill period. Thus when you cannot go to a house due to cats, dogs or what have you the person often just does not get it that asthma kills and thinks of you as being hypervigilant etc they just have no idea what it is like to see your childs eyes tear up as they struggle to get air.

Wow, I imagine it is really hard if others are not understanding (altho I have had this sort of thing from my mother!)

 

I don't think my children have asthma as strongly as yours do--they wheeze but they don't get so bad that they can't get air. I will have to ask about the lung scarring--if that is happening to them with the weakness of their attacks.

 

However, I can so relate to the farming aspect! I feel like taking mine away altogether when they start some of whatever it is they do. I'm so bummed out about that, too: life in the country and all that.

 

Thanks so much for sharing all this info!

[Annie N]

I would ask. My husband is a PA and my oldest son has asthma. We use his meds as needed, being thankful for them when necessary, but realizing there are side effects of long term use. Some MD's believe that people with asthma should be on meds all the time, but hopefully your provider will be open to usage only as needed. All that to say, we have had times, once a year or so, where a cold had caused enough inflammation that the inhalers are not as effective and we have gone to Urgent Care for nebulizer treatments. I would learn the signs of their asthma and treat early on...my son starts coughing fits that become more frequent if not treated....and treat sooner rather than later. hth

I would add, that he has a very mild case....not as the above poster had mentioned. Some asthma will need continuous treatment or the side effects of the triggers can be deadly.

Mine have mild cases also, and that is why I am questioning their being on the meds full-time. And the treating early on is something we are still having to get used to, that they have to be more rigourous about using the peak flow meter and all that.

 

Thanks so much for explaining this :)

[Annie N]

I agree finding the triggers or at least finding the times of the year the asthma seems to be a problem. Some people have worse symptoms than others also and very aggressive treatment is needed for those people.

 

My son is allergic to something outdoors during March and April and something else in September-November, so we have him on Asthmanex during those times. He does have a rescue Xopenex inhaler and a nebulizer for the times when his oxygen levels drop (cheap pulse/ox machine works great). This keeps him out of the ER. He is allergic to other things too, but they do not trigger his asthma, but his ezema is another story lol.

 

This is similar to our situation with the twice a year problems, and it seems that y'all are doing pretty much what I want to do. And you all have all those macines at home! Even an oygen tester! Yes, if our PA thinks that would be ok, I would do that.

 

Thanks very much for all these details! :)

[Susan in KY]

Haven't read all the replies, but I wanted to toss in my pair'o'pennies that being on a preventative long term can have ramifications. My son used pulmacort for a year and became very weak and was in severe pain all over his body. It was really bad. I had no clue of the potential side effects, but I should have investigated better.

 

Now he uses Singulair. No body aches, but increased asthmatic activity. :tongue_smilie:

 

Susan

[Annie N]

Haven't read all the replies, but I wanted to toss in my pair'o'pennies that being on a preventative long term can have ramifications. My son used pulmacort for a year and became very weak and was in severe pain all over his body. It was really bad. I had no clue of the potential side effects, but I should have investigated better.

 

Now he uses Singulair. No body aches, but increased asthmatic activity. :tongue_smilie:

 

Susan

You're saying that the Singulaire is not as effective wrt asthma as the pulmacort was? I am having a bit of trouble finding out about side effects on Singulaire, some people think it causes huge amounts of problems, and they just added something about mood changes to their side-effects (and that is what I am not happy about: I have lived through too many drugs which were later found to have problems, iykwim!)

 

Thanks for your reply, I am very happy to hear that your son is doing better!

[Karen FL]

It would probably be to your advantage to consult with a pulmonary specialist or asthma/allergy specialist.

Years ago, I was clueless and so was my general practitioner. I ended up hospitalized for seven days with astham and on heavy duty steroids.

I read and learned everything I could. I saw a pulmonolgist and then an asthma/allergy specialist. Through allergy testing, I found out what my triggers were. I put expensive covers over my box spring mattress, pillows, and mattress; washed all bed linen in hot water once a week; got rid of my two cats; and switched from carpet to tile throughout my home.

 

After making all of those changes and taking allergy shots, I went from taking eight medications for asthma to taking only Claritin as needed.

[DinoMom]

My DD has very outrageous asthma outbreak during the winter months and during the season change. She was prescribed Pulmicort and Albuterol. Whenever she gets a serious outbreak, she has to rely inhale Albuterol every 3-4 hrs and Pulmicort twice a day. On such days, she barely sleeps because it gets worse every time she dozes off. She is actually scared to close her eyes!

 

A friend who is an expert in herbal therapy, told me that vegetarian diet helps to reduce the frequency of outbreak. I could not judge because we have been vegetarian all along. Another friend reported great improvement with her son since they minimized meat in his daily intake. Her son used to get admitted to er, even at school. Now, his outbreak are all mild ones. I'm thankful that we are not as serious as him yet.

[ma23peas]

Do all you can to remove potential irritants. We started homeschooling b/c the common cold my son would catch in his pre-k class would send us to the ER...he had about 15 attacks when he was 5, when I brought him home, he had 2 and now he's had none for the past 2 years (he's 13 now)...we, too, were told to keep him on Singulair, NO, it wasn't necessary, his lungs were just fine on their own as long as we kept him free from colds..allergens...irritants...

 

Check your house for mold, for all 4 of your children to show symptoms it could be something as simple as dirty duct work...it's worth it to pay to have your duct work cleaned out...have a mold inspection, we live in north AL and mold is prevalent. Pets, cats are horrible for irritating kids with disposition to asthma...some dogs..my kids are fine with dogs/horses and now my son can even tolerate a cat for a little bit..but he'd go into instant attack when he was 2-3 if he were around a cat.

 

The best thing for them is no drugs and let their body handle it...keep nebulizer (they're only 40-50 dollars!!) and albuterol on hand in case they start having trouble..or buy the spacer (heck the spacer was $90!!) we had better luck with the nebulizer...if you find you're using the nebulizer more than 6x a year then maybe consider a long term drug, I just don't like them...and I sold pharmaceuticals for years!

 

Tara

[Annie N]

Thanks everyone! (I'm sorry it took so long for me to see these messages :blushing: ) I discussed all this with my husband and he thinks we should take them to an allergist or specialist and get more of a handle on it.

 

I must say that the last time they got sick, their peak flow meter scores stayed up really high in a way that I think they normally wouldn't have, so I am more reconciled to the meds, but if I can reduce as much as you all have, it would be worth doing all this.

 

Thanks everyone :D