New Specialist; PFT Log

So... we started seeing an asthma and allergy specialist last week for Ozzy. We love our pulmonologist, but she has two kids now, and her hours are very limited. Combine that with the fact that she's based at a hospital 20 minutes away (pay for parking, wait forever, etc.) the new local specialist is a winner.

We saw him for the first time this past week, since we were running out of our Flovent 110, and he was very thorough. I was interviewed, Oz was examined, which I expected - but he also did scratch tests and spirometry on the first visit. He also gave us a peak flow meter, and on that first day, Oz blew a 280.

Ozzy's meds were changed slightly, due to the fact that (a) he's done really well this winter and (b) this doctor doesn't like using spacers and masks - he thinks the kids don't get enough medication this way. So Oz was switched to a Flovent 100 discus (half the dose, yea!!) and a MaxAir instant inhaler. He seems to do really well with the new "delivery systems." I'm happy to not have to shell out for or clean spacers, myself!

Of course he got sick over the weekend and started flaring. The cough isn't bad, but it's a cough, and his only other symptom is fever. (B also has a fever with no other symptoms.)

On Saturday, I decided to check peak flow. It was 200. I gave him the MaxAir, and it went up to 225.

Today, with 102 fever, I checked again. He's barely hitting 200.

I guess I'll check him again later, and we'll see how he is. This meter doesn't have "zones," but he's down by a good 25 percent - assuming 280 was a good number for him. He only had the one test when he was healthy.

Probably worth a call to check in.

Perioral Dermatitis - from Comments

Got this comment from Lauren about Perioral Dermatitis:

Aimee, I found your site while looking for a possible link between discontinuing Flovent and my son's rash around his mouth appearing a day later. Your blog entry and the comments by others were the only information I could find about perioral dermatitis caused by flovent or stopping flovent. Have you had any more experiences with it since your post?

The pediatrician and the allergist both had never experienced anything like it. He got a topical antibiotic cream and I suspected it wouldn't work after reading your blog, but gave the doctor the benefit of the doubt. It actually mostly cleared up with the cream, but then rebounded quickly as soon as he stopped using it. He's now back to using the cream plus on an oral antibiotic. I'm wondering if we should be reporting this to the drug company (GSK) since it seems to be an undocumented side effect that doctors have no idea about.

So, yeah - periorial dermatitis can DEFINITELY be caused by Flovent, or any inhaled steroid. I'm surprised that more pulmonologists don't talk about it!! #1 son had it so bad, it was terrible. It made him so sad - it looked like had terrible acne. And we had to go to several doctors before received an accurate diagnosis and treatment. One doctor referred to it as "steroid acne," which I think is accurate - but didn't prescribe a strong enough treatment.

Ultimately, it required a three-week course of SERIOUS oral antibiotics and a topical antibiotic gel. It's pretty serious stuff.

Lauren - I'm in support of your approaching GSK with this one. It should be listed as a side effect.

Thanks for bringing the topic back up. I'm sure there are plenty of other moms out there who could use this info

For Erica: Yes to Flovent!

Got this via comments:

hi, I have a 2 year old that was recently diagnosed with asthma They put her on pulmicort and she does fine with it, my problem is she HATES to sit there and take the medicine. It seems to take forever!!! So my doctor said I could put her on flovent and take it through the inhaler, I am kinda scared about switching her. I hate the fact that she has to take medicine anyway, but switching makes me nervous. Have you ever used it? What do you think?? Thanks so much for your time, Erica

Flovent is essentially the same medication as Pulmicort, but it's delivered via an Metered Dose Inhaler (MDI) instead of a nubulizer. You'll need a spacer, like Vortex or an Aerochamber, but it's easy to use and takes about fifteen seconds to administer!

One tip: Flovent can cause thrush, so we always do our meds immediately before brushing our teeth. It's just become part of the AM/PM routine at my house, and compliance is not even an issue. (Talking with the mask on is....)

I'm sure you'll do really well with the switch. Good luck, Erica!

Everyday Health on Inhaled Steroids

Since posts on this topic are always catalysts for comments and lively discussion, I thought I'd share this one. Everyday Health answers this question:

"My son has been on steroids for asthma since he was 18 months old. He has been on Flovent since March 2006, one puff twice a day, 110 mg. He turned three on June 9, 2006. I have two questions: Are there any studies that show long-term effects of taking this steroid other than affecting growth? Could Flovent be causing him to be hyper? He is a very busy, active boy."

The answer, by an asthma specialist, might make you feel a little better about keeping your kids on Flovent or Pulmicort.

My take (as always): I hate the stuff as much as the rest of you, but it does tend to keep my kids out of the hospital. If helping them breathe means their a little more active and a little shorter...I'll take it!

Tracy's Question: When the Asthma Action Plan Needs Revision

Tracy posted this question to a post, and I thought it was worth adressing front and center:

"I am new, but desperate to find some advice. My 4 year old has asthma and has been on albuterol, pulmicort, singulair, and prednisone for a few years on and off. His 6 year old sister brought a cough/cold home from school last week and now he is battling it. All of the parents of asthma children know that when they get a cold/cough...it's SOO much worse for them over other children. I'm at my wits end, he is coughing and coughing for days now. The doctor told me to do the regular routine...albuterol/pulmicort in his machine. It doesn't seem to be helping, he has made himself vomit 2 times from his coughing attacks. It's now Saturday night, 6:30 pm and he's coughing nonstop. He isn't wheezing, but his breathing is fast. The cough is the worst, and I don't seem to be getting much help from his doctor.

Any advice on how to help the cough even a little bit other than his albuterol/ pulmicort/ prednisone. I feel like I'm overmedicating him today. I'm so stressed, he can't stop coughing. I'm not sure if it's time for a trip to the ER, but not sure what else they can do for him, we have all the meds right here, it just doesn't seem to be helping. "

I don't know if it's documented anywhere, but I swear some kids develop a resistance to albuterol.

So here are my questions for Tracy, right off the bat: Are you seeing a regular pediatrician, or do you see a pediatric pulmonologist or asthma/allergy specialist? If you read this blog regularly (and considering you came in via a post from 2005, I'm guessing you might!) you know how important I believe this is: Pediatric pulmonologist just "get" pediatric asthma better than pediatricians do. We have seen our pediatrician and been told our child was "moving air well," then seen the PP a few hours later - only to be promptly sent for a chest x-ray!

Question 2 for Tracy: When did you last have your action plan updated? It may be that your son has outgrown his current dosages, or needs stronger meds. Our middle guy is fine on Flovent 44 for the summer, but needs to be on Flovent 110 this time of year. Last year, we bumped him to the 220 for the winter months.

When it comes to the emergency meds, I always have albuterol and Xopenex stockpiled, but have found that when things get really dire, we need DuoNeb and Combivent, as well, which are stronger. (I don't know if they're typically prescribed for kids, as they seem to be COPD meds, but they definitely take care of those evil coughing fits.)

I've also been lucky enough to have a great PP with a great staff. They know I've learned to treat mountains as mountains and molehills as molehills (it took a few years...), so they've empowered me to take certain measures at home. If things are really bad, I'm allowed to administer three doses of albuterol 30 minutes apart. If there's no relief from that, we either go straight into the office, or straight to the emergency room. Note - DO NOT do this without the permission of your own doctor. I will only take these measures after calling the office and checking in first!

One more trick we keep up our sleeve: Dimetapp. If your doctor allows it, we find that this alleviates coughing caused by upper respiratory symptoms. It's not a cough supressant, so it's OK for asthmatic kids to take. Bonus: Helps them sleep, too!

So, Tracy, I hope this is helpful. I'm frequently in your shoes, and I know what you're going through. Of my three boys, Oz, my 4 YO, is currently the worst asthmatic. He will cough until he gags. Sometimes, he can't get through a sentence without coughing. It's awful, and I will do whatever I can to make it stop.

We've had a good winter so far, but he has started coughing today - and I'm visiting my in-laws in Canada without the nebulizer, so I hope I didn't just jinx myself.

Please feel free to respond via comments or email.

Asthma in Children and the Fear of Pulmicort

New Question - Just In:

HELP!!!!! My son is 7, was dx w/ asthma this past winter after a lifetime of treating what different ped's "thought" were simply nasal infections with antibiotics. We have recently went from zyrtec, to oral steroids, now on to pulmicort, albuterol and Singulair. I am VERY afraid as my son is already a sensitive and emotional boy. It sounds like the pulmicort is simply a BAD med??? Does anyone have any homeopathic advice on treating asthma? My mom is permanently disabled from medications that were not properly tested and monitored...I am in search of help, not more hurt!!! - Tammy

Tammy, I'm *not* a doctor, but I have a few insights I can share from experience:

First of all, many of us who have used Pulmicort and Flovent (same med essentially, delivered differently) have found that Flovent may tend to have less "roid rage"-type side effects.

Personally - and I do have sensitive boys - I haven't seen any negative behavioral effects from the steroids. (At least not that I remember!) Certainly albuterol has them bouncing off the walls, but I give Xopenex as often as I can to aovid that.

I can tell you that it works - WELL. For children with asthma acute enough to require daily inhaled steroids, there aren't many alternatives. None of us likes the fact that our kids are taking steroids every day, but it certainly beats the alternative of not being able to breathe!!

The best recommendation I can give you, though, is SEE A SPECIALIST. If you've read this blog at all, you'll know that I love my pediatricians. But when it comes to asthma-related issues, I call the pulmonologist first, then make a courtesy call to the regular peds to keep them in the loop. Pediatric pulmonologists know more about asthma than general pediatricians do, and understand the subtleties, the latest meds, and so much more than any other doctor.

If there are no pediatric pulmos in your area, look for an allergy and asthma specialist.

On the holistic side, I know many parents who have seen benefit from taking their kids off dairy. Others have seen a lot of success with sinus washes (now sold as "netti pots" at your local CVS) particularly if their kids' asthma is typically triggered by upper respiratory infections.

Again, I'm not a doctor or medical professional of any kind, but this is my best mom-to-mom advice.

I would also refer you to the Asthma-Parents group on Yahoo, which has been a great resource for me over the years. Two other sites:

• http://www.breatherville.org/ - the site of Mothers of Asthmatics, which also provides discounts on nebulizers and other equipment, among many other resources; and
• http://www.lungusa.org/ - the American Lung Association, which has great newsletters.

Hope this is helpful. Best of luck, Tammy!

Utter Madness - But We're All OK

I've been the absentee blogger lately, I know...

In a nutshell, I left the job I've loved for four years and started someplace new. That was about 7 weeks ago now.

The new job is fine -- I have a decent life/work balance, which is critical for me. Obviously.

It is taking a long time to get ramped up though, which is frustrating. I don't really have a budget for my online marketing programs, and the two guys I work with, who have complimentary positions, are very, very smart, and very, very busy. So I feel kind of stupid and lazy right now. It's a little challenging.

At home, I'm still getting used to the routine of the new job. Different commute. Different stress level...scared to be late or to ask to work from home...but I do both anyway...

The kids are doing well regardless. I'm definitely yelling at them a little less. The stress of the new job is a heck of a lot lower than the stress of the old job as it was petering out.

The old job was so wonderful...loved every minute of it until the company was acquired. Then it was something like watching a beloved grandparent succumb to Alzheimers. Everything you love, all the memories just dying away, until you don't recognize each other anymore. I'm writing in a rush right now...but you get the idea. It was painful and horrible, but I know the company I loved really doesn't exist anymore. And I don't recognize -or trust - what's grown in its place.

So those last few weeks, with a new boss and a new CEO, were VERY stressful, and I felt like I was losing patience with the boys a lot in the morning. I'm not, by nature, a yeller, so it was weird for all of us to have me screaming at them (especially Ozzy, who's just going through a PHASE right now).

Things are quieter now, but it's still challenging. And I dont' feel like I have time for anything at all these days. By the time I've gotten those three guys off to bed, I want to go lie down myself!!

Anyway...enough about me! Here's the deal with the guys:

• Ozzy: Coughing. I went to on my first business trip in a while - and my first plane ride in 8 years! - this past week, and of course he had a flare. I got called on my cell phone mid-meeting in Atlanta...he was being sent home from daycare because he was coughing so much! I called the husband and made sure he understood the action plan. Then called every two hours to check in. Sounds like it was a rough day or two, and he's still coughing at night, but he's doing OK overall. He was dropped from Flovent 110 to 44 about two weeks ago, and taken off Singular, so we'll evaluate the meds situation if he's not better in a few days.
• B: Still coughing a bit. It's been about three weeks now, and he's doing MUCH better. Oddly, he's on Augmentin right now for (of all things) a severely infected hangnail. (So gross...) I suspect the cough is from a lingering sinus infection, so the Augementin would clear that up, if I'm right.
• Ig: Bad diapers, a few sleepless nights, and digging in the right ear. Could we be en route to another ear infection? If so, we're down for new tubes AND an adenoidectomy. We'll see...

I *may* have heard a cough from Ig this morning, and he did insist on taking his blankee to daycare today. Never a good sign.

Sorry for the very long and poorly (quickly!) written post, but gosh it feels good to bring you up to speed!

Pulmicort 'Roid Rage - response to question in comments

This came in today via comments:

I'm not sure I'm typing in the correct spot... I'm new at this. I was hoping to find some answers to a question I had concerning my son. I was wondering if you have heard of any children becoming aggressive or violent from the medicine Pulmicort? My son just turned 3 and since on Pulmicort has been exhibiting some very violent behaviors. Maybe just hit at the same time???? who knows? Do you have any advice or help?

I've been fortunate to have never experienced this, but I've definitely heard about it before.

Pulmicort is a steroid, and sometimes kids will react to it the same way grownups react to, say, anabolic steroids.

While some parents are OK if their kids "occasionally kick the dog," as one mom so quaintly put it, so long as they can breathe, sometimes the behaviors are a lot more extreme and hard to live with.

I've heard, on the Asthma-Parents Yahoo group, that other parents have seen better results simply by switching steroids. So ask your doctor if Flovent or Qvar is an option for child. Ad there's an added bonus: Being a "Flovent Mom" myself, I can assure you that administering a metered-dose inhaler (or MDI) twice a day is a LOT easier than holding a three-year-old down for a nebulizer treatment every single day.

Singular is another commonly-used maintenance med for preschoolers. I've rarely heard of adverse reactions from it, but it does work differently than inhaled corticosteroids like Pulmicort and Flovent, so it may not be right for your son's needs. In fact, my kids have needed to be on both Flovent AND Singular during peak season.

So...I hope this helps. Definitely talk to your doctor about alternatives. You shouldn't have to live with a psychotic preschooler when there are other options available.

Other parents, please feel free to share your experiences and wisdom!

Jennifer's Question on RSV/Asthma

Had to post this one -- probably a lot of this, now that it's Flu/RSV season:

Hello,
I came across you blog by searching google for asthma treatments. My son 8 months tomorrow has had RSV once and now pneumonia twice. This since early December.My head is spinning thinking that this is potentially a lifetime problem. He is on Orapred now with albuterol Not to mention Amox. for an EI. He was on singulair after the first bout with pneumonia. I thought it was working, but then he came down with a cold and within a day it was in his lungs. The dr. is going to switch him to pulmicort now I just have so many questions. I was wondering if you could perhaps help me or just talk me through it

OK...so the best advice any parent of an asthmatic child can give you is find a pediatric pulmonologist or asthma/allergy specialist, if you haven't already. Pediatricians are generally wonderful, but because asthma - particularly in a child as young as yours - can be VERY subtle, a specialist (if you have access to one) is the way to go.

I've found that finding the right combination of meds is an exercise in trial and error, even with the best doctor. I admit surprise that your son wasn't put on Flovent or Pulmicort from the start, but all docs have their own preferences.

It could be that your son will be what seems like a LOT of medication for a while. My oldest was best on Flovent 220, Singular and Nasonex when he was 2-4 years old. I've never met a mom who was happy about all this maintenance medication, but the good news is, it typically is NOT a permanent situation.

B was on a ton of medication for a year or so before we were able to lower the Flovent and phase out the Nasonex. And once we took his adenoids out (sinus infections were his biggest trigger) we were able to phase out the Flovent as well.

Now he's just on Singular, and has maybe two asthma flares a year -- and they've been mild ones, too.

My other guys are still on Flovent, but comparatively low doses, and they're doing well so far.

I do think that our PP is more aggressive with medication than others, but it seems to have worked will for my boys.

One resource I highly recommend is the Allergy and Asthma Network. You can call them directly with your questions and concerns. (They also offer discounts on medical equipment - definitely a bonus!)

'Roid Rage in Your Asthmatic Child

Every now and then, I get a comment like the one I just got from Tami. She's got a son with severe asthma who needs to be on Pulmicort or Flovent, but goes a little psycho when he's on the stuff.

It's a horrible situation to be in. Unfortunately, steroids are considered the strongest weapon in our anti-asthma arsenals. And as a message board buddy once put it, she'd rather have a kids who "kicks the dog" but can breathe than one who's in the ER every other week.

I think we'd all have HAPPY kids who can breathe.

At the end of the day, when we're not happy with the results we're getting from our doctors, the first checkpoint should be other doctors. I realize that some of my friends here don't have the luxury of being in major metro areas like me, but if you can find another pediatric pulmonologist or asthma/allergy specialist, get there. If you've only been dealing with your regular peds -- take the 2 hour drive to see the specialist. You'll never regret it.

Tami, I don't know what other meds your son is on, but you sound smart and I imagine you've been asking all the right questions and tried lots of different things. We're doing well with Flovent, but I know others who've seen positive changes by switching to Qvar and other brands of similar steroids. Maybe your son can do Singulair instead of steroids? Worth asking...

We've got lots of smart moms around here -- I'm sure someone can offer grounded, sensible advice. (Ahem!)

One note on the eczema -- there's a boy in my kids' daycare who had THE WORST eczema I've ever seen. He was constantly scabbed and bleeding. So sad! Recently, I noticed a drastic improvement, and I asked his parents about it. Would you believe their miracle cure was VASELINE? That's right -- they switched dermatologists, and the new doctor recommended that they bathe him every day (seriously!) and coat him with Vaseline within 2 minutes of getting out of the tub (and barely drying him off) to seal in the moisture.

Worth a shot, right? (With your doctor's permission, natch!)

Up with Oz

I've got a feverish, wheezing little Oz at my side as I type. Poor guy. We'll be at the peds tomorrow morning for sure. :-(

Some quick updates -- if I haven't posted in a while, there are two good reasons. First, we were on vacation the last week in August. Second, B's started Kindergarten at the elementary school, and I am/we are all adjusting to the new routine.

By new routine, I'm referring to getting up at 5:45 AM, getting myself ready for work, getting B ready for school, Oz and Ig ready for daycare and getting everyone out the door by 7:40 every day. Then it's two drop-offs before work, a full day of marketing for four companies, two pickups, dinner (at the table, with everyone) baths, making lunch, and then maybe, if I'm lucky, 30 minutes on the treadmill before washing or folding laundry and going to bed.

Aren't you SO jealous of me???

As for that vacation, let's just say it was everyone ELSE'S vacation, because for me, it was just like every other day, only touger. We rented a cottage on a lake in northern Ontario. My husband found it online, and failed to notice that a) it had steps (and we had no gate) and b) the walk down to the lake was pretty steep!

Ig was a bear....I was carrying him around every second, pretty much. Between the steps everywhere and his seemingly unthwartable desire to walk into the *middle* of the lake, it didn't seem safe to put him down! He didn't sleep well, and when he finally went down for a nap every day, I took a well-needed break by running 2 miles down a secluded dirt road. Believe me, it was my only alternative to running into the woods and screaming!!! I love that baby, but MAN was he tough.

In his defense, it turned out he had Fifth Disease (Parvo virus) but honestly, I still think I had it rougher than he did!

One more thing about that cottage -- every square inch was either carpeted or upholstered. EVERYONE was coughing. B develped a phlegm-y, resonant cough before we left for vacation, and it only got worse while we were there. It didn't go away for weeks, and we finally had to put him on Singular again. :-( Anyway, at least he's still off the Flovent, right?

Anyway, enough feeling sorry for myself -- back to poor Ozzy. He needs some snuggles, and isn't that what moms are for?

Thursday Night at the Pulmonologist

So... here's the quick roundup:

• B - Doing GREAT! He actually completed the Peak Flow Test (PFT) and did great! Dr. W said she would have been happy if he'd been over 80% -- and he actually surpassed 100% (He still improved after abuterol, but whatever.) He is not going back on Flovent this fall, at least not at this point. :-)
• Oz - Doing well, but staying on Flovent 110 and Singulair. We'll keep watching him.
• Ig - With the cyanotic episodes and overall dodgy health, we're starting Flovent 44 again now.

For a change, BETTER than I'd anticipated. I'm so excited about B!! No meds!!! Whoopeee!!!
Now all I have to pay for (for B) are the $500 orthotics, which our insurance wont' cover.

Albuterol Test, part deux

I have to really scrap the last albuterol test -- Ig was running a fever on Saturday, so he may have had some virus that was keeping him up. He slept PERFECTLY with the fever, though.

Of course, he was up again the next night, so I tried the "albuterol test" again last night. He slept through til 5:00 AM. (GREAT for him.) He woke up really happy, too - despite some icky green goo around his nose.

I'm calling the PP this week to schedule a seasonal visit for all three monkeys, so I'll keep the test up for a few more nights and report the results back to her. $10 says he's back on Flovent by next week.

In other news -- I'm taking B to the podiatrist Thursday (praying he doesn't need full orthotic - NO ONE covers those things) and the developmental peds. in October. Let's here it for back-to-school!

Iggy is a NIGHTMARE on Flovent

11-month-old Ig is a demon on Flovent. Man, I thought that kid was a bad sleeper before...on Flovent, he has learned how to scream. So now, when he wakes up at 3:00AM, he doesn't just cry....he shrieks for more than an hour.

He was tenacious before, now he's downright impossible when he gets his mind set on something. (For example, he started self-feeding on Thursday...now I'm not even "allowed" to feed him.)

Good thing he's still so snuggly and cute!!

And yes, I can bitch and moan about it til the cows come home, but ultimately, I'm happy the medication exists that can help my child BREATHE.

Iggy's on Flovent

Forgot to mention this in the last post...but yes, my 11-month-old is now on Flovent 44. Not surprising considering:

• He was born in respiratory distress and spent his first 24 hours in the NICU
• He turned blue when he was about 4 months old (he was fine)
• He has had three illnesses involving serious coughs in the last 9 months, including the one last week

And to my friend who was asking about an alternative to Pulmicort, ask your doctor about Flovent and QVar, which are both in metered-dose inhalers (MDIs) rather than administered via nebulizer. Much faster, easier, and child-friendlier.