Asthma ? long and rambly

[rjruiz_415]

this is long and rambly, sorry.

So, I guess DS has asthma. One night when he was 2, he had an episode of breathing difficulty. I reluctantly took him to the ER. They gave him a breathing treatment, and all was well. A short while later it happened again, and we went to his doctor - who gave us a prescription for a nebulizer and the albuterol. Since then (almost 3 years) he has had some breathing issues once every several months. We just do a treatment ( sometimes two) and he is good to go. Well, about a month ago he had an episode, and we realized that his albuterol had expired. It took many more treatments than usual to get him back to breathing normally... So when I woke up this morning to a very wheezy boy, I decided to take him to the doctor. Remember, he has not been to the doctor is several years. Anyways...it was just a mess, and I would like to ask a bunch of questions before I decide if I am going to do everything the doctor said...

First, she freaked out, literally, about us having not been to a doctor, him not having been *followed* by someone about his *chronic* asthma. She said that it is standard to check up with asthmatics every three months, even if he is not having symptoms. Soory, but I do not want to do this, not at all... even DH, who's younger sister grew up with VERY scary asthma, thinks that is just ridiculous... Do you take your asthmatic child every 3 months, just to check in? (keep in mind that we do not do well baby checks, so I do not like the idea of taking my child in unless it is absolutely necessary, at which point I do take them in)

Second, she gave us some liquid steroid. (well, she tried to-) Saying that for three days after each episode, he needed to drink this steroid stuff. I have never heard of that? I ended up just dumping it and leaving, cause I was tired of arguing with him after 20 minutes to drink it...

Sooo... we came home and did another treatment. She wants us to come back tomorrow, in one week, and then, i presume, every three months. I do NOT see the need to do this, I am not negligent, and if the albuterol is not working, I would definately take him in. Do I need to do this, really? Is she going to call CPS on me or something?

She also pointed out my sons horrid ecxema and spoke to me as if I did not know about it, the nurse was baffled about us not vaxing (even though he is vaxed thru 15m) and then when I was explaining my need to get home and do the next treatment at home, as I had to go get my other kids, and nurse the baby, she asked 'gosh, how many kids do you have' in a tone thay was implying I had too many? Or that she could not believe I had more than the one? IDK, i am just irritated, and would love some input..

Oh. and to add to it - I learned (at the apt.) that our medi-cal (state insurance) is not active, so the visit was not covered...

[Violet2]

I sympathize, but as a veteran asthmatic think you need to work more with the doctors.

1. Asthma can cause permanent damage of the lungs. It can limit how much kids can do in school too. Medical care prevents this, it makes a normal life possible.

2. Yeah, it's a pain to see someone every couple of months but asthma can spin on a dime and kids aren't as observant about their health as an adult. When things go south, it is really really really helpful to have that doctor who has seen you through thick and thin. They will have your back in ways the ER won't.

3. I wonder if the relative with 'severe' asthma is so severe precisely because they don't go in for routine follow up?

Your doctor is being a jerk because they are WORRIED. Maybe this doc isn't a good fit for you, but I would take their worry as a sign that you do need to do more than you are.

At the very least YOU need to educate yourself about what asthma is. From your post I don't think you know very much.

Also, steroids are nothing to mess around with--you really need to know what they are and how they work before you give them to your child or throw them in the garbage. Steroids are potent and they are not prescribed lightly. I would infer from your doctor's actions that your child is seriously ill.

I would worry about CPS just because this is about your child's ability to breathe. If the doc feels that is being compromised, they will have no choice but to call.

I am sorry they were rude to you. I'm not excusing them, but their behavior aside, there are legitimate issues here that should not be ignored.

ETA: As a former kid with asthma, I will tell you my parents never understood how sick I was. Never. I was in pain. Each breath felt like I was raking my lungs shards of glass. As a result, I have scarring in my lungs because medical care was delayed or deemed unnecessary. I would not trust your outside assessment of how your child feels unless they are able to communicate clearly to you about it. At least not until you have a better understanding of asthma.

V

[sbgrace]

I think the doctor gave the steroids because the asthma isn't responding to (disappearing with) albuterol and you need to keep using it. What you described reads like a child with uncontrolled asthma though I get that he was well controlled before. Things can change (that happened with us last year). When you get in that kind of mess steroids are sometimes all that will get things under control again. Is he ok with albuterol are you still need to frequently dose it? Using it multiple times for multiple days is uncontrolled asthma.

It's not typical to routinely follow albuterol with oral steroids. It's not typical to need a lot of albtuerol with well controlled asthma though and so if it's not well controlled you'd need another medication (allergy med, singulair, inhaled steroid...what it is depends on the causes and response) to control it so you avoid needing oral steroids which are hard on the body.

I'm thinking the doctor wants him stable (using the steroid to calm things down should do that) and then the three months out is to see if he's still well controlled or if he needs something to manage it better. Beyond that, it sounds like he's got major allergy issues and so figuring out and managing those may make his asthma better and make him more comfortable (eczema is, I know, so horrible to experience).

We don't see a doctor every three months for asthma. We do manage it at home via a pulmonologist though. We've got a peak flow monitor so we can know if he's headed to trouble, he's on meds, and if it's uncontrolled (too much albuterol/too often) I know I need to go in and figure out what to do next. He has an allergist and pulmonologist. He sees a pediatrician for well checks. So he's followed. I think that's the issue the doctor has.

She sounds like she might be over-reacting and distrustful of you. It doesn't sound like a good doctor-parent relationship and I'd look for someone else. But I would be concerned, given her reaction, about what she might do if she feels you aren't following up with his condition appropriately. So I'd step carefully out of concern from that angle and also because you do need to get his asthma well managed again.

I'm thinking the doctor over-reacted because she is aware he's rarely seen and wasn't being regularly followed for asthma and you brought him in with what she saw as uncontrolled asthma, which can be life threatening. Whether he's really not controlled I can't tell from your post. If you gave him albuterol and the next day or later that day he needed more and that goes on he's not controlled. I would have held onto the steroids in case I needed them.

[choochootrain]

You need to see an asthma specialist. When DD, at the age of 2, was diagnosed with asthma by our family dr, they wanted her on preventative steroids daily, even if her symptoms were very mild. I didn't like this "preventative" thing, so I pushed and pushed for a referal to an asthma / allergy specialist. (Btw, the fact that you son has bad ecxema is a sign that his asthma might be more serious than you think, as they are closely related).

The specialist said DD's asthma was viral, e.i. with colds only. He was not keen at all on preventative steroids and suggested we use the steroid puffer only at the beginning of each cold, and end it when the cold ended (I know that this is not a very popular opinion, but I trust that specialist and his years of experience).

Within several months DD's asthma symptoms weren't as prominent--she still would have coughs with colds, but they were within the normal range, and she had difficulties breathing only rarely if at all.

The specialist told us to try and see what happens without the steroids--and she was fine.

I'm telling you this not to necessarily get encouraged that asthma disappears--viral asthma with no or mild excema is often ougrown, but your son might not have this particular form. But it is important to see a specialist, rather than just a family doctor who is more likely to push heavy meds. The specialist will be more knowledgeable at fine tuning the meds. Also, DD was on naturopathic treatments for a year. Nut sure if this helped, but who knows, impossible to tell. Her symptoms were mild anyway.

[Violet2]

Choochootrain: Good for you for pushing! Yes, I agree, steroids should be a last resort for flare ups not a daily med. Inhaled steroids I would do as a maintenance med when DD was older, but not now.

V

[WildKingdom]

According to the CDC, in 2006 there were 444,000 hospital admissions for asthma. There were 3,613 deaths.

Your doctor was not overreacting. Asthma kills.

[choochootrain]

Originally Posted by sbgrace

She sounds like she might be over-reacting and distrustful of you. It doesn't sound like a good doctor-parent relationship and I'd look for someone else. But I would be concerned, given her reaction, about what she might do if she feels you aren't following up with his condition appropriately. So I'd step carefully out of concern from that angle and also because you do need to get his asthma well managed again.

I'm thinking the doctor over-reacted because she is aware he's rarely seen and wasn't being regularly followed for asthma and you brought him in with what she saw as uncontrolled asthma, which can be life threatening. Whether he's really not controlled I can't tell from your post. If you gave him albuterol and the next day or later that day he needed more and that goes on he's not controlled. I would have held onto the steroids in case I needed them.

I agree with the above. The doctor doesn't seem like a good match, and if she thinks you are endangering her son (and she does think this, rightly or wrongly) she might follow up with the CPS.

[savithny]

Another former asthmatic kid here, though my worst issue was Before the Dawn of Time.

BY the time I was diagnosed, my lung function was severely impaired -- and I never had a crisis attack. Asthma can be ongoing and does not consist just of "attacks."

It is my understanding, from the additional treatment I got during college, that the goal of treatment is to limit the number of crises that require albuterol treatments. Regular need for treatments is a sign of inadequate maintenance treatments:

Even Dr. Sears agrees:
http://www.askdrsears.com/html/8/T080700.asp

There are three main goals of maintenance therapy:

1.Keep the child in a symptom-free state on a daily basis. Proper maintenance therapy can help a child go through life without suffering from daily wheezing, chest pain, chest tightness, and shortness of breath.

2.Decrease the frequency and severity of attacks. Adequate maintenance therapy should prevent attacks from even occurring in the first place. When they do occur, they should be milder.

3.Decrease reliance on albuterol. If albuterol is used continuously for many months or years, your child may become resistant to it. It is important not to let this happen since albuterol is one of the only bronchdilators available to us. Important note – don't be afraid to use albuterol. It takes several months to years of daily use to become resistant to it, and resistance is rare anyway. Most people use it frequently for years and have no problems with resistance. It is preferable to be on one of the maintenance medications daily than to use albuterol daily.

The ENTIRE article I quoted (follow the link above) is very informative. It sounds like you are not familiar with some of the medications and procedures used in asthma treatment, or the definitions of different types and kinds. Only a well-informed parent is ready to advocate for their child in a situation like the one you described with the doctor, and perhaps if you'd been familiar with the names of the meds the doctor was proposing, you could have been able to say "I understood that (drug x) is usually recommended as a last resort, not as a regular thing."

I also always recommend that when dealing with an ongoing or chronic condition, you need to go into each appointment with a notebook and pencil and take notes. Write down what you're told -- treatments, drugs, dosages etc. Date it and get names. It really helps to have a record of your own of what you were told and when.

[choochootrain]

Originally Posted by WildKingdom

According to the CDC, in 2006 there were 444,000 hospital admissions for asthma. There were 3,613 deaths.

Your doctor was not overreacting. Asthma kills.

What is the break-up by age and confounding medical conditions?

[Multimomma]

Those are the deaths that are directly contributed to asthma. There are an additional 7000 each year in which asthma is a contributing condition (like CHF, COPD, etc)

[Delicateflower]

OP, I think you need to learn to work with doctors, not against them. When the doctor hands me something (like a dose of liquid steroids) I run though a list of questions. It helps me to decide what the correct course of action is, rather than just dumping the meds.

1: what's the diagnosis
2: what made you decide on that rather than something else
3: what can we expect to happen
4: what are all the possible treatments
5: what is the treatment you're recommending
6: why is this one better than the other ones you described
7: what are the positive benefits of this treatment
8: what are the side effects or potential complications
9: how long/how often will we need to do the treatment
10: what if we don't do the treatment

#10 is the most informative of the questions. It gets good honest answers from everyone from a perinatologist recommending growth scans to peds with antibiotics and steroids.

The answers I've gotten wrt the steroids is that if you give that first dose the first night, it might head off the entire course of the attacks (this was for croup, not asthma), so you can quite reasonably and safely wait until 10pm the next night to see if any more doses are needed.

[ASusan]

An added benefit to the short course of oral steroids is that it will bring your son's eczema into control or to a baseline, and you can then perhaps begin to observe what he is reacting to. I like this "side effect" of oral steroids for my son's asthma, although I truly dislike giving them - they bring the eczema down to a point where we can then say, "aha - he DID react to that (food/fabric/animal)."

[Traceround]

Asthma is nothing to play around with or hope that it just goes away. You do need to work with the doctors (maybe not this particular doctor but A doctor) and get your sons asthma under control.

Speaking from experience, I can go from feeling fine to gasping in a very short amount of time and I often can't feel when I am hitting the danger zone until I am already there. Then I have to do the steroid and nebulizor routine until I am better. So because of that, I keep up with my doctor and pay attention to my breathing and track my peak flows to make sure I am doing well.

Please don't sweep this under the rug. Asthma hurts and it kills. Not being able to breath is a very scary experience for anyone.

[bjerme]

If you do not go to the follow up visits, you probably should expect a visit from CPS. It sounds like this Dr. is very concerned... I would not take that lightly.
(We do not do well baby visits, and my oldest hasn't seen a dr. in 4 or more years... however, if i was concerned about asthma, i would do everything the dr. recommended)

[ccohenou]

Originally Posted by rjruiz_415

Sooo... we came home and did another treatment. She wants us to come back tomorrow, in one week, and then, i presume, every three months. I do NOT see the need to do this, I am not negligent, and if the albuterol is not working, I would definately take him in. Do I need to do this, really? Is she going to call CPS on me or something?

Yes, you are negligent. Your son has uncontrolled asthma and you are refusing to cooperate with treatment. If you won't get on the train, I can only hope that they will call CPS. He deserves to breathe.

[graceomalley]

Your doctor is concerned about your son's chronic, untreated asthma for good reason. It would be foolish of you to refuse the treatment he deserves. Asthma can be deadly.

[JessicaS]

If one inhaler lasted years that is not something at all I would see as "dangerous" or "chronic"

I would suggest you see an allergist or pulmonologist so you can get to the bottom of what is going on there. I would start with the allergist because of the eczema.

There are many variations of severity and many causes. I would find out more what is going on with specialists.

This Dr sounds a bit over zealous to me. Needing a treatment once every couple months is hardly "life threatening" asthma. I would look into it further though. It can be dangerous and can get worse so you'll want to know what is causing it, what aggravates it and how to keep it from getting worse.

[sbgrace]

I agree with abimommy on your son clearly had asthma that was well controlled/mild. What I'm not sure of is how it stands now.

My son got dx'd with asthma (well, they called it reactive airway disease) around age two. We got a nebulizer and albuterol. We use it so rarely that we still had the original package of albuterol when he was five. And then last summer he had an asthma flair. We used albuterol like usual but I kept having to use it. And then it wasn't really controlling it at all. Long story short we ended up needing a course of oral steroids to get his asthma under control. He's on meds now (and needs them) to keep it controlled. So things can change. I'm wondering if they changed for your son too. For my son it was all allergy related so I'd certainly look into that being a trigger for your son too due to the eczema (and it's spring and a rough one allergy wise for lots of people this year).

[ammiga]

Originally Posted by abimommy

If one inhaler lasted years that is not something at all I would see as "dangerous" or "chronic"

I would suggest you see an allergist or pulmonologist so you can get to the bottom of what is going on there. I would start with the allergist because of the eczema.

There are many variations of severity and many causes. I would find out more what is going on with specialists.

This Dr sounds a bit over zealous to me. Needing a treatment once every couple months is hardly "life threatening" asthma. I would look into it further though. It can be dangerous and can get worse so you'll want to know what is causing it, what aggravates it and how to keep it from getting worse.

I agree with this. I was a severe asthmatic growing up, and I was lucky if my albuterol inhalers lasted a month.

There were two times in my life I found relief from asthma. The first was when I started to see an asthma/allergy specialist. I was put on 3 drugs a day and could mostly function, although I used my rescue inhaler all the time, and frequently needed to go on oral steroids around colds and other illnesses. Yes, sadly, that was a huge improvement in my life.

When I found the most relief from my asthma (and allergies and eczema) was when I cleaned up my diet and my environment. I took all inflammatory foods out of my diet (trans fats, most white flour, most processed foods, etc). I switched to a mostly organic and whole foods diet. I don't eat artificial ingredients (HFCS, artificial colors or flavors, sweeteners). I removed all chemical cleaners from my home and use vinegar and baking soda. I only use natural body products. And I ditched all forms of western medicne. For the first time in my life, I can breathe. I mean really breathe. I am med-free, and have been for 3 years.

Seeing doctors gave me a bunch of medicines and ways to cope with my asthma, but never really fixed anything. They seemed to "control" my asthma to a certain extent, but didn't *cure* it. I was led to believe there was no cure. Maybe for some there isn't. But I was labeled an extreme asthmatic from the time I was 3 years old. I literally sat on the sidelines during gym my entire days in school. I couldn't even go outside in the winter (we live in the midwest). I had to be careful outside if it was too humid, if it was allergy season, if it was mold season, etc. Sometimes I woke up in the middle of the night and needed to go to the ER because I couldn't breathe. I was in the ER for nebulizers and adrenaline shots multiple times a month. As an adult, I took 2-3 medicines a day and still needed to carry my rescue inhaler with me at all times. All I'm saying is, it wasn't the doctors that actually cured my asthma. Yes, they kept me alive plenty of times. But I figured out how to cure my asthma, and to me, that is amazing.

So, yes, look into more. Push for a specialist. But don't stop there. There are a lot of things that you can do at home that can help your son. I'm not entirely sure what the check-ins would do, other than see if he is struggling to breathe on a regular basis more than you are aware of. This is important to know, but can probably be monitored at home with a peak-flow meter.

[graceomalley]

Originally Posted by abimommy

If one inhaler lasted years that is not something at all I would see as "dangerous" or "chronic"

Just addressing the 'chronic' part.

Chronic asthma is defined as an asthmatic condition which is long term (in this case, over 3 years) and persistent. It's chronic because the inflammation is there, whether the attacks are occurring or not.

This child fits the description of a chronic asthmatic. Frequency doesn't come into the equation when you're talking about whether it's chronic or not. If frequency is mentioned, it's mentioned in severity, eg 'chronic severe asthma' or 'chronic mild asthma'.

As for dangerous - well, lung scarring is hardly safe or desirable.