Albuterol vs. Xopenex - the debate continues!

Three years ago, I posted an article that stirred up huge debate regarding the value of Xopenex vs. Albuterol.

Amazing how many comments that post still gets!! I thought I'd bring it back to top of the blog to see who else wanted to weigh in.

Here's the original post.

And the pneumonia just keeps on comin'!

Update -

Sent Oz back to school yesterday. He'd been fine all weekend, and practically bouncing of the walls. He couldn't wait to get out!

When he came home, he immediately lay down on the sofa and fell asleep.

That is NOT like my Oz.

When I checked, he was running 100.8 and complaining of pain in his chest and a headache.

I put him to bed early, but he woke up shortly after crying hysterically - he was completely incomprehensible. Then he threw up all over my bed. Then he fell asleep again.

Next time he woke up, not an hour later, the screaming resumed. He was in pain, scared - I don't even know what. I started to warm up the car so I could take him to the ER.  But by the time I came back in, he was asleep again.

I'd spoken to the doctor twice by this time. She warned me that it could either be an effusion or a mucus plug. (eeeeuwwww.)

He made it through the night after that. He was laboring to breathe a bit, but his respiratory rate was OK.

This morning, we had to go back to the doctor, of course. And of course, we were sent for another chest X-ray.

The results? The Zithromax he'd been taking wasn't working. The pneumonia had actually gotten worse! WTF??!!!

So... while it may actually be a viral pneumonia, we're starting Omnicef tonight.

Wish us luck.  We're back to the pulmonologist next week.

And still MORE pneumonia

Yes, really.

Oz was diagnosed today, after a chest Xray.

Last night was one of those hellish nights (we've all been there) where we were sitting up doing back-to-back nebs at 1:00AM.  Poor guy couldn't stop coughing.  And he's been running a fever (lower-grade) since Tuesday AM.

After barely sleeping, I can't tell you how much fun it was to run Oz around the hospital (where our pulmonologist's office is) and then down to X-ray, with ornery Ig in tow. Blecccch.

Xray showed a mild pneumonia, and since his sats were at 100 and he sounded pretty clear, we don't need oral steroids.

Anyway, we're starting antibiotics tonight. Hopefully, we'll have more sleep, less coughing, and healthier boys in the very near future.

I am in hell.

I have to vent like a big ol' whiner right now.

Today has been so miserable...there aren't even words.

Two sick boys: a four year old with a bad temper and a five year old with a bad attitude. Both feeling unwell enough to really highlight the worst of their personalities.

I've had Ig screaming and whining and carrying on all day. The whining and crying is enough to make me run  screaming into the freezing cold night.

And Oz, "Mr. Cool", just monopolizing the TV and complaining every time I let Ig watch Thomas the Tank Engine.

All this while I'm trying to hash out digital marketing strategies and analyze Google AdWords campaign reports. On a deadline.

I don't know whether to scream, cry, run or take a bubble bath.

The sad part is, Oz really is sick today. I feel bad for him (although he doesn't make it easy sometimes) and I want to take care of him. But Ig is making almost impossible! He's so jealous - I can't get near Oz without him  reacting. And then Oz reacts to THAT, and all hell breaks loose all over again.

I know they're sick, and I'm doing my best to take care of them....but I'm allowed to rant every now and then, right?

Pneumonia - Not Again!

Well, I was all set to send Ig back to preschool today, but he had a brutal fit of coughing last night. Here I was thinking that this would be my albuterol-free child...

I can handle a few coughs, but this was BAD. It sounded like he had croup for half of it, and the other half was this loud, wet-sounding cough-cough-WHEEZE, cough-cough-WHEEZE we'd been hearing a few days back. I wasn't sure if he needed albuterol or Dimetapp, but I figured since albuterol would actually help him breathe, while Dimetapp is purely prophylactic, I'd try the albuterol first. And it worked. The poor little dude went back to sleep after that.

I was on the fence about sending him back to school. If it were just daycare, I would definitely keep him home. But Ig is PDD-NOS (high-functioning autistic) and in a special preschool program in the morning where he gets speech therapy and OT. I hate for him to miss it! But I know how the school nurse gets when you give her that kind of responsibility. If I called her and said, "He had pneumonia last week, but is still coughing. If he breaks into a fit of spasmodic, coughing or sounds like he has croup, can you please call me?" she would tell me to keep him home. After all, the woman's got 500 other kids to worry about.

Anyway, my choice was made for me: This morning, Oz woke up coughing and running 101.  He was coughing yesterday, so I did start him on the albuterol MDI, but we definitely breaking out the neb today, kids.

I wasn't worried about pneumonia - I didn't think pneumonia could be spread AS pneumonia. I thought it was like strep, which doesn't always strike the throat - we've seen it fester as an infected hangnail!

But, horrifyingly, I was mistaken. I asked my dad - a pharmacist who almost died from antibiotic-resistant pneumonia as a teen. Dad said, "Theoretically, it is contagious. I got a lot of nurses sick in the hospital."

Great.

I confirmed Dad's assessment on KidsHealth.org:

The bacteria and viruses that cause pneumonia can be contagious. But once your son is taking the proper antibiotics for his bacterial infection, there is a minimal risk of passing the organism on. Check with the doctor about your son’s specific case.

Ugh. Guess we're going back to the doctor today...

I'll keep you posted.

Quick Note: Ig's Pneumonia

Just a quick update: Ig developed pneumonia the day we left Canada for home. (We go to Canada for the holidays every year - in-laws are in Ontario.)

He's fine - didn't even need any nebs. Never mind that his fever hit 104.8 on New Year's Day!

Isn't it ironic? The kid who spent his first day of life in respiratory distress in the NICU is the kid with the strongest lungs! Fever started Thursday, and he'll be back in preschool tomorrow.

For the record, I believe this is pneumonia #6 for the mama.

One flare; one mystery symptom

Just wanted to update y'all -

Oz had a minor flare last Tuesday and Wednesday - nothing we couldn't manage with a little DuoNeb. I was a little nervous that he might miss his Thanksgiving play...but he was through the flare by Wednesday afternoon.

I don't think we're 100% out of the woods...there was a lot of sniffling today, all of a sudden. But I don't see a trip to the ER in the near future, either.

Ig's going to the doctor tomorrow. He's had these very red eyes since Friday. No discharge or crust or anything....just bloodshot eyes. How weird is that?

I've heard him cough a handful of times, and he may be a tiny bit congested, but the eyes are just odd.

Called the pediatrician today, and she suggested we give him some antihistamine, but I don't think it helped at all. She did ask if he was urinating, and I *think* he is...but truth be told, now that he's potty trained, I'm not sure how often he goes. He's not like Oz, who at 5.5, still announces each and every trip to the potty to the entire household.

So...maybe he isn't urinating as frequently. Anyone know what this might be a symptom of? It's so hard with Ig. With his communication skills so impaired, I don't even know if he *feels* sick.

Having a Moment (Autism, not Asthma)

I'm having a rough time.

I know my posts are generally asthma-related, but I actually have two boys who are on the autism spectrum, too.

#1 son, B, has Aspergers Syndrome. He's totally mainstreamed in school and, if anything, his particularly brand of autism makes him better-behaved than average kids. I think he honestly believes the world will burst into a fiery ball if he breaks a single rule. He definitely has anxieties and feels the stress of everyday life more than most, but he's a great kid.

Oz, son #2 is a completely typical 5 year old - smart, gorgeous, snarky. He's great.

#3 son, Ig, who will be 4 in December, was recently diagnosed PDD-NOS - that is "Pervasive Developmental Disorder, Not Otherwise Specified." The "NOS" part typically means there's no delay in speech development.

Although Aspergers is frequently catagorized as a PDD-NOS diagnosis, I can tell you that Ig and B are unbelievably dissimilar. Where B and I were having full conversations (about snakes, usually) by the time he was three and a half, Ig can't carry a conversation at all. He has the vocabulary. What he lacks are the semantic and pragmatic language skills. He just doesn't "get" conversation at all.

A little clarification on that "semantic pragmatic language disorder":

Semantic-Pragmatic Disordered children have many more problems than just speaking and understanding words, so it is called a communication disorder rather than a language disorder. We think that the difficulty for children with S.P.D. may be in the way they process information. Children with S.P.D. find it more difficult to extract the central meaning or the saliency of an event. They tend to focus on detail instead; for example the sort of child who finds the duck hidden in the picture but fails to grasp the situation or story in the picture or the child who points out the spot on your face before saying 'hello'. "

So, vocabulary is there, language skills aren't. But there are so many more problems than that.

Every day is a struggle for Ig. I don't think he understands that there is a world around him that functions independently of him and without regard for what he wants or needs. This includes time, which has no meaning for him. If he wants something, he wants it now, and there's no explaining that he has to wait for it, or that the zoo is closed, or that we have to leave for school right this instant.

It's hard enough that he doesn't get these things in the first place, but then you can't even discuss them to attempt to reason with him. Conversation is impossible, although I do believe he understands quite a bit more than we give him credit for.

And when he doesn't get what he wants, he tantrums. These used be typical toddler tantrums - screaming, crying, kicking, hitting. Now they're just small, random acts of violence - hitting or biting one of his brothers, throwing a toy, kicking the dishwasher, whipping me in the back of the legs with his security blanket. If we put him "time out" for one of these offenses....THEN we get to see a good, old fashioned temper tantrum.

You can understand then, maybe, why I've kind of given up. In the past, I was the mom who removed her child from the restaurant at the first wail. My kids go to time out for talking back. They don't get dessert if they don't finish dinner. I'm an old fashioned parent in so many ways. But Ig has just worn me down. I let him get away with murder because it's easier. It's SO much less work.

I realize that I can't do that, and today I resolved to stop doing that. And I know it's going to get worse before it gets better. It always does.

Ugh. I love this kid so much, and I know that he needs me so much more than my other guys do right now. Seriously, I don't think anyone's ever loved me or trusted me the way he does! But he's so tough. He can be so sweet one minute, and trying to punch me the next. He's completely unpredictable.

The most frustrating thing? I can't afford to see the behavioral therapist as much as I need to. We've made so much progress with him, but insurance doesn't cover the visits. (NJ mandated insurance coverage for autism-related therapies back in August, but it doesn't take effect until February.) I would have the guy move in with us if I could! And we live pretty comfortably - we're not millionaires or anything - but the therapies really do cost THAT much.

I'm ranting (whining?) now...too tired to make sense. I just feel so alone with this. No one in my world understands how tough it is to live with this guy, but really - after nearly four years, I've only just started to feel like he's not running the household. And I'm scared of what the future holds for him. Will he ever be able to make friends? Will he find ways other than violence to relieve his frustration? Will he have to go to special schools? Can we afford all the therapy it will take to help him lead a happy, satisfying life?

Will anyone be able to see the glimpses of the smart, beautiful, loving little boy I see?

To Med, or not to Med?

Hi, all!

I'm happy to say, things have been quiet around here (apart from autism-related behavioral stuff, that is) - no one's coughing right now. Ig even made it through a nasty side infection without a single neb! But alas, it's flu season, so I'm cautious with my optimism.

This just came in via comments, and I thought I should address it, since it's definitely an evergreen topic.

Great blog! I found you by wandering around looking for a comparison of albuterol and xopenex. My DD (5) had a cough and a fever for four days so I took her to see the Ped, who promptly prescribed albuterol inhaler and antibiotics.

I freaked out (my kids have never had prescription meds for anything ever before) and decided NOT to follow Ped's suggestion, hoping that Ped was just CYA and DD could kick it on her own.

Well, fast forward three days and DD is weezing. Now, I'm reconsidering but a friend suggested Xopenex instead. *throws hands up* When I read your blog and the experience of the other parents, I get so frustrated because it seems like once you start, there's no getting off the moving sidewalk of meds. However, DD is miserable and I just want her to get better. *sigh*

First of all, WOW - I can't believe your kids have never been on prescription meds before. That's awesome!

But...y'know what? I think you should consider listening to your pediatrician and starting them. Respiratory illnesses (especially during this particularly creepy flu season) can become very serious, and albuterol - or Xopenex - will help your child breathe more easily.

While they may make her hyper, please remember that your child is probably having difficulty breathing if she's wheezing and coughing. For young kids - heck, even for US! - this is a scary situation. Fast-acting inhalers like albuterol and Xopenex will help her feel better right away. (And if you delay starting the meds, you end up having to put her on Orapred. Horrible!)

I totally get the idea of not completely trusting your docs, believe me - there's tons of research that shows that doctors will prescribe antibiotics and other meds because they think patients expect them. (A direct result of DTC advertising, but that's a whole 'nother kettle of fish...) My peds know that I often won't fill certain prescriptions they write for my kids (like antibiotics for minor illnesses that may be viral). At least not right away.

But with respiratory stuff, I don't take chances. There's too much room for something to go horribly wrong. I've taken my kids to the ER far too many times to risk it.

In a perfect world, you'll have pediatricians that you trust with your kids lives - literally. But if you question a respiratory diagnosis, find a pediatric pulmonologist or an asthma and allergy specialist.

In this case, please don't wait. If you're questioning the diagnosis, see that specialist ASAP.

And granted, I'm not a doctor or a medical professional or any kind, but as the mother of three asthmatic kids, I hope you'll start the nebs while you consider your options. There are no known long-term side effects to albuterol or Xopenex, and they'll literally help your daughter breathe easier.

Best of luck to you and your little girl. Please feel free to email me or continue our conversation via comments. And apologies if I sound sanctimonious at all - I don't mean to!

BTW, definitely check out the Mothers of Asthmatics site. It's a GREAT resource.

Are your kids getting the flu shot?

I haven't decided yet.

B can't get it, since he's allergic to eggs. (The vaccine is "grown" in eggs, so egg-allergic patients cannot be vaccinated.)

I'm not a fan of the vaccine, as many of you know. And here's why:

• In past years, quality has been an issue. Remember Chiron and the tainted vaccine in 2004? And then more problems in 2006.
• It's predictive, which means it may or many not actually work to prevent the flu. The two years my kids got the flu, the strain was not covered by the vaccine. (One year they'd been vaccinated, one year they hadn't.)
• It typically contains thimerosal a preservative derived from mercury. There are thimerosal-free shots out there if you ask for them, but don't expect your insurance to cover these.

Nonetheless, I probably will vaccinate, if only because I'll be forced to. And now that my kids are older (and two are already on the spectrum anyway), thimerosal isn't quite as scary, although I don't like the idea of ANY mercury being injected into humans - especially not my kids. Whoever thought that was a good idea?

And yes, I know it's smart to vaccinate your kids against the flu, especially when they're asthmatic. But I have lots of reasons to distrust big pharma, so I'm wary. I do solemnly swear, however, to religiously clean my house, wash my kids hands, keep them home when they are sick, and encourage them to cough into their elbows.

Are you vaccinating? Share your thoughts on why or why not.

Singulair Black Box

From comments:

Hi I just found your blog while doing endless searches on pediatric asthma. I have a few questions for you if you don't mind. What is the Singulair black box warning, is it about depression/ suicide? And I also had a question about your personal experience with flovent. My son has just been prescribed it, and he is two. Have you noticed any growth supression, and have you noticed any serious behavioral changes? I am so worried about giving him this drug, and the doctor and pharm just try to play down the side effects, but when I search online I find LOADS of unhappy mothers about them! Thanks for your posts!

First of all, your welcome! I'm so glad you find my blog helpful. Regarding Flovent - we never noticed any behavioral changes, but we actually did see suppression of growth. #1 son was pretty tiny when we took him off the stuff, and probably shot up a foot over that summer. He's grown astronomically since then. It's hard to say how much of that was just natural though.

What I can tell you about Flovent is that once he started it, we never had to go to the emergency room again. We haven't had any hospitalizations for any of our kids since we started them on Flovent. We don't love that they've been on steroids for years, but the results are well worth it for us. If you look through the comments on this blog, I think you'll find that *most* readers agree

As for Singulair - yes, there was a concern about Singulair causing suicidal thoughts and other behavioral problems. Our pulmonologist promptly yanked my kids off the stuff as soon as the warning was issued, despite the fact that none of them ever experienced side effects of any kind. (I do appreciate her caution though!)

As far as I know via my very quick research, Singulair has never been black-boxed, although many consumers seem to be pushing for this.

As recently as June 2009, Merck has been pushing back against the FDA on the basis that Singulair has proven to be incredibly helpful to many asthma and allergy patients.

Merck is confident in the efficacy and safety of SINGULAIR, a medicine that has been prescribed to tens of millions of patients with asthma and allergic rhinitis since its approval more than 11 years ago.

"For the millions of people suffering from either asthma or allergic rhinitis, SINGULAIR is an important treatment option for appropriate patients," said Scott Korn, M.D., vice president, Clinical Risk Management and Safety Surveillance, Merck Research Laboratories.

SINGULAIR is indicated for the prevention and chronic treatment of asthma in adults and pediatric patients 12 months of age and older, for the relief of symptoms of seasonal allergic rhinitis (SAR) in adults and children 2 years and older, and for the relief of symptoms of perennial allergic rhinitis (PAR) in adults and children 6 months and older. The efficacy and safety profile of SINGULAIR is supported by available data from controlled clinical trials, in which more than 20,000 patients received SINGULAIR, and from a review of post-marketing adverse event reports collected since the drug was approved by the FDA. ...

In clinical studies in patients with asthma, adverse events were generally mild and varied by age. The most common adverse events in clinical trials in adults and adolescents with asthma ages 15 years and older were headache, influenza, abdominal pain, cough and dyspepsia. In clinical studies in patients with allergic rhinitis, SINGULAIR was generally well tolerated with a safety profile similar to placebo. The most common adverse events in these clinical trials included sinusitis, upper respiratory infection, sinus headache, cough, epistaxis, headache, otitis media, pharyngitis and increased alanine aminotransferase (ALT). Less common side effects that have happened with SINGULAIR include behavior and mood related changes [agitation including aggressive behavior, bad/vivid dreams, depression, feeling anxious, hallucinations (seeing things that are not there), irritability, restlessness, suicidal thoughts and actions (including suicide), tremor, trouble sleeping].

On August 28, the FDA updated its page regarding the review of Singulair and similar drugs. Regarding the status of this review, the FDA now recommends that:

Patients and healthcare professionals should be aware of the potential for neuropsychiatric events with these medications.

Patients should talk with their healthcare providers if these events occur.

Healthcare professionals should consider discontinuing these medications if patients develop neuropsychiatric symptoms.

I don't know if this is FDA code for "Black Box" - anyone?

Behavioral issues from Pulmicort and Singulair?

Another comment to address:

My son is on singulair and plumicort. He has had "asthma/breathing" problems since he was six months old. He was put on the meds the summer bw pre-k and kindergarten. He was a perfect student in Pre-k, but ever since he has been in trouble in school. He just started the first grade and his teacher has asked me to have him tested for ADHD. I do not want to medicate him anymore than I have to. I have read that singulair and plumicort can have these side effects on children. But he needs them to survive!! The dr told me today I can take him off the singulair for a week and see if there is a difference.

So, keep in mind that Singular and Pulmicort absolutely CAN cause behavioral side effects...but they don't always. We were fortunate enough to never see those side effects (I assume, but I've never been able to talk Ozzy off the stuff!), although we did have others. We did see jumpiness from Albuterol and Prednisone, but not from the maintenance meds.

I would follow your teacher's advice. Talk to your pediatrician about your teacher's report and try to understand if her concerns seem related to the medications. Talk to your pulminologist if he or she might have a better understanding of the side effects. If your pediatrician thinks it's warranted, take your son for the evaluation. If your behavorial psychologists and/or pediatric neurologists handle evaluations in a manner similar to the way our doctors do, you'll find the evaluation an enlightening experience. My kids and I have actually enjoyed those appointments, believe it or not.

And if your child does have ADHD, you'll be able to get the treatment he needs. Not all doctors medicate for it - and not all kids require medication. (Our Ig was recently diagnosed with PDD-NOS, and I was warned that he probably has ADHD as well, although he's too young to diagnose. Like you, I don't want to medicate. I don't like those meds! If we have to do it, we will, but we'll do everything we can to avoid it.)

So, in summary, do the evaluation. Your child's classroom issues may not have anything to do with the asthma meds. But once you have a diagnosis (or not), you'll be able to make informed decisions about how to help your child succeed in and out of the classroom.

Good luck - and please keep me posted.

H1N1 - and all flu - require vigilance

Have to adress this comment that came in as a response to my swine flu post from July:

No offense, but it seems very unwise to say H1N1 is no big deal and then make an offhand remark at the end of your post that your child was on an anti-viral medication. And it's possible that the negative flu test was indeed accurate, and it was not the flu. This response is written in September after the resurgence of the flu and I believe it is has to be taken seriously. According to the CDC, 30% of the children who have died from H1N1 had no pre-exisiting health condition. It has been proven that young people and children with asthma are at particular risk. This flu has the ability to penetrate deep into the lungs and replicate there, unlike the "regular" seasonal flu. This was suspected at first (shown in animal testing) and confirmed by testing done at the CDC. This explains why it is causing pneumonia in some people who wouldn't normally get it form the flu. For most people it WILL be a relatively mild illness but no one yet truly understands this new virus - all parents of children with asthma should remain educated and vigilant.

Defensively, I have to make to comments (and yes, I know it's stupid for me to get defensive):

First: Do you remember they hype around H1N1 in June and July? At that point, the virus was affecting far fewer people than a typical seasonal flu outbreak - and with far fewer serious and fatal cases - yet the media was treating it like we were amidst an outbreak of bubonic plague.

If I seemed to have been taking things lightly, it's only because it was only because the flu we had was shockingly mild.

Secondly, my kids were WELL into the their flu by the time they started antivirals. I would say they were already "over the hump."

That said, we NEVER take the flu lightly, and I apologize if I seemed offensively flippant. We've had enough chest X-rays, Prednisone, round-the-clock nebs and hospitalizations to last a LIFETIME, believe me!

We will vaccinate (thimerosal-free, cause I'm weird like that) when possible, and we'll see the doctor at the first sign of anything. We'll keep our hand-washing up, and, like any responsible mother, I will keep my kids home if they seem sick. I hope you'll do the same.

I actually haven't been keeping up with the state of the flu so well... If you have updates on stats and symptoms, please share.

Flu, in hindsight

So, now that everyone is back at camp/daycare, I have this to say about the summer flu....

It wasn't so bad.

Oz was VERY sick for a day. Then he was kinda sick for a day. Then he was fine, but had to stay home for four more days. He had one really bad asthma flare on the tail end of it (coughed til he threw up), but we've had worse.

B ran a fever, but never got very sick.

All in all, while it sucked having the flu in July, I think this was a pretty mild strain. Certainly no worse than what they faced in November, and not nearly as bad as the strain B caught in January of 2004.

So...all the hype about H1N1. Just hype. Granted, the Tamiflu may have had a greater impact than I'm giving it credit for, but really... I don't think this is as bad a flu as the media made it out to be.

Starting Tamiflu

So...quick update...went to the pulmonologist today. (She's at the hospital, so we had to wear masks. Horrible!)

She's sure ENOUGH that Oz has flu that she prescribed Tamiflu. And if he's not better by Thursday, she wants a chest X-ray.

Sigh.

He seemed more energetic today, but still not eating much (a little Kraft macaroni and cheese at dinner, that's about it)... but still running around 102 and looking pretty poo-ey.

I'll keep ya posted.

Oz might have the flu

MIGHT have the flu.

After a mild flare yesterday, my monkey woke up with 102 - and ran that fever all day long. He didn't complain of a sore throat, but did complain that his legs hurt and his head hurt, and occasionally that his stomach hurt. He could barely keep his eyes open all day.

At daycare, of the 70 kids or so enrolled, an alleged 23 were absent. A few tested positive for strep, a few had suspected flu cases. The Board of Health called while I was there dropping Ig off.

I took Oz to the doctor, and after waiting an hour, he tested negative for strep and negative for flu...HOWEVER, the rapid flu test has a 25% false negative rate. The doctor thought his symptoms looked enough like the flu that she's not allowing him to return to daycare until Monday. (And that's the date she put on the note he needs to go back!)

She also wants me to call the PP to see if they want him to go on Tamiflu, before the final flu test comes back from the lab.

I'll one-up them on that: I'll take him to the PP. Given his history of pneumonia, I think I want him to be seen. Especially the way he's coughing right now!