Ig is sick AGAIN

Can you even believe this? Every two weeks this kid has something!! There's roseola going around school...my boss must LOVE me. :-)

Two Off Flovent (Yea!); One on Orapred (Awwww!)

Good news: We went to the PP last Thursday and B and Ig are both of Flovent for the summer! In fact, B can even go off Singulair for the first time starting next month.

Bad news: B started developing Perioral Dermatitis again within a day of going off the steroids. Poor guy. I'm actually on hold with the dermatologist now. B is sooo bummed that the rash is back. He looks awful, and he knows it. So sad for a 5 year old to go through this!

More bad news: Not only is Oz still on the Flovent, he's on oral steroids right now, too. Saturday night, he had one of the worst attacks ever - it took two back-to-back nebs to quiet him down that afternoon. And three back-to-back to stop the coughing over night.

He's much better today, but still looking unwell and not eating. We're off the the PP in an hour.

Two on Albuterol

Quick update -- Ig has another ear infection, and I suspect he may have brochiolitis too. He's mouth-breathing and it sounds a little labored. He's happy, though. At least, he's happy til 4:00 AM.

Ozzy's just been off. Coughing since last week, lots of green goo, and yesterday, he complained that his chest hurt. That is, he said his tummy hurt, but he pointed to his chest.

Both are on albuterol. I'm tapering Oz down, since we seem to have gotten ahead of his flare. Ig's only 16 months old, though, so I'm taking him to the doctor in the AM. (Regular peds -- we see the pulmonologist on Thursday afternoon.)

Keep ya posted.

All Quiet on the Pulmonary Front

Just checking in -- it's been quiet around here, thankfully. Apart from Iggy occasionally retracting and Oz's occasional AM grunts, there's really nothing to report. Isn't that nice?

Hope all is peaceful in your worlds, too.

I have to schedule a checkup for the monkeys with the PP before summer. Here's my prediction:

B: Off everything but Singulair - and maybe even that - for the summer
Oz: Down to Flovent 44 for the summer
Ig: Stays on Flovent 44 for the summer

I'll keep you posted.

Of course, I'm not completely off the hook. We just found out that Oz has astigmatism in both eyes, Ig is spiking fevers today, and B's just been a little off lately - possibly related to the Asperger's. But at least they're all breathing well!!

Poor Ig! Another ear infection, pinkeye AND wheezing!

Post title says it all, right? The kids 15 months old and he's on his NINTH ear infection. The tubes seem to be working -- I can see all kinds of yellow goo in his ear. Blecch.

I have a feeling there's more to this. (Genius that I am.) I mean, let's see - it's his ninth ear infection and he's already GOT tubes, he's running a low-grade fever more often than not, he's got a goopy nose and he's retracting fairly regularly.

Who wants to bet a case he needs his adenoids out before...let's say...Halloween?

Really, I just want to figure out what's wrong with this kid. Between the pain he's clearly in and the amount of days I have to work from home and take care of him, we really need to get some answers.

Ear Tubes, All of a Sudden

Quickly, because there's a baby screaming down the hall --

Finally took Ig to the ENT on Wednesday. We had to wait over a month for the appointment. He's had 8 infections since October, including one that resulted in a perforated eardrum. Never mind that he's rarely slept an entire night since birth, instead waking up halfway through and screaming for up to two hours. (Sure, let him "cry it out." HAH!)

So, the ENT said that Ig's ears are so badly infected, he'd like to do the tube surgery the following morning. (This during one of the busiest, hairiest week's I've had at work in a good, long time, I might add. But, priorities...)

The surgery is done on Thursday morning. We're at the surgical center at 6:45, we're home by 9:30. The baby is seranading me over waffles by 10.

And yet, he's still not sleeping. Even as I type this, he's screaming his head off. Are his ears still hurting, or have I just spoiled him, letting him sleep with me every time I knew he was in pain? (He'd literally KEEP crying for HOURS, and the big boys and I have to sleep, too.)

Anyone with advice on this, please post a comment! I need help!

Iggy's Mystery Illness

So, by now you may have noticed (if I've kept up-to-date with my posting, that is) that Iggy gets sick every two weeks. Every other Friday, I work from home because he's running a fever, coughing, has an ear infection, a stomach virus...something exciting like that.

This week's illness is just WEIRD. He has "the cough", but I only hear it a few times a day. Per the doctor, who - by the way - now thinks I'm completely neurotic, his ears are clear, his throat's only a little red, and his chest is clear. And he's negative for Strep. He's had little or no fever in the morning for the past few days, but he's gone up to 102+ at night. His diapers have been nothing short of repulsive -- but normal in number.

During the day, he's irritable and lethargic. My normally sweet, cuddly boy is grumpy and tantrum-prone. He's not eating well, he's not playing...he'd rather snuggle than toddle aorund, but after a while, he'll start crying and writhing -- then he won't let you put him down, or continue to hold him, or put him in his crib. Not without screaming.

So...knowing that there've been cases of mono and flu in the area, I'm wondering if either of these could be a possibility.

Does anyone have any thoughts, ideas, suggestions, experiences to share? I could definitely use some advice, and I don't feel like I have my pediatrician's attention right now.

BTW, we're in the NY Metro area, if that helps.

How much time do you spend at the Peds Pulomonologist?

D asked this question in a comment, and I realize that there's enough of an answer here to be a post -- AND a full conversation.

First off, I have to admit (in response to the first part of D's question) I love Denial. I spend a great deal of time there myself! I'm there right now, in fact. Went to the pediatrician instead of the PP today. (I suspect the pediatrician is slightly deaf because she said both little ones were moving air well. That despite tight coughs and Oz complaining that his chest hurt.)

So here's the thing with PPs...the amount of time you spend there is directly proportionate to the amount of time your child is sick. BUT - if you come up with the right combo of meds right away, you may only go a few times a year.

It also depends on how quickly you can be trained as an Asthma Mom. We have a unique skill set and toolbelt. You'll see.

My oldest monkey has not a file, a BINDER at our PPs office. When he first got sick, we were there constantly, and when we weren't there I was on the phone with either the PP or her nurse practioner.

But once we got the right balance of meds (Flovent 220, Singulair, Nasonex) and the right Asthma Action Plan, we were able to manage most illnesses with a phone consultation and called-in prescriptions.

At this point, I have the office on speed dial and a closet full of supplies (nebulizer, cups, tubes and masks for said nebulizer, albuterol, Xopenex, saline, giant bottles of Dimetapp...) Oz and Ig have regular files, and the nurses like me a lot better these days.

Hope this helps. You may want to join the Asthma-Parents email list and see if someone else lives near you and can recommend a good Pediatric Pulmonologist.

Monday Fun: Your Monster Name (not asthma-related)

Yes, all my kids are coughing right now, but I thought I'd shelve that post for a bit, and bring some fun instead.

Check out my Monster Name!

Get Your Monster Name

How much fun is that?

When to switch to a Peds Pulmonologist and other questions answered!

Got a great comment today with a lot of good questions...some of which I can actually answer!

I'd love to ask you some questions since I feel like I'm kind of a
beginner in this whole thing...like at what point do I take him to a
pulmonologist vs. the regular ped? When and how does he get officially diagnosed
with asthma? What about allergy testing--when is it recommended? I never feel
confident in deciding whether or not to neb...how do you decide? Stuff like
that.

So here's answer #1 -- Take your child to the pulmonologist as soon as you suspect your child is asthmatic. Assuming you have insurance coverage and a pediatic pulmo nearby, GO. Many pediatricians -- even the fantastic ones -- miss the subtleties of peds. asthma. Go to a PP or an Asthma/Allergy specialist as soon as you every think you should.

Answer #2 -- Children often keep the "Reactive Airways" diagnosis until age 5. Asthma is a type of RAD, but doctors seem to be skittish about making the hard diagnosis. I'm not sure why. My PP diagnosed B with asthma at age 2, but other specialists still insist on referring to his condition as "Reactive Airways," even when I correct them. I mean, JEEZ, I think my pediatric pulmonologist may have been qualified to make the diagnosis.

Answer #3 -- With the allergy testing...our PP sent all three of my kids out for blood panels at their first appointments with her. Now that B is 5, he's going to an allergist for more in-depth testing. So it may be another "age 5" thing.

Answer #4 -- As far as nebbing, always call your doctor first...but we prefer to err on the side of caution. When in doubt, neb. At first sign of a cold, neb. Think you hear a wheeze? NEB.

See a pattern?

Bottom line...get a pediatric pulmonologist on your team. It all falls into place from there.

Hope this helps, Miss D!

New Site for Asthma Parents

I referenced this before, but I think I wasn't so clear --

I started a MySpace for asthma parents... check it out and let me know what you think!

Click here to join Asthma Parents!About Asthma ParentsIf "nebulizer" is part of your every day vocabulary, you know the difference between an MDI and an HFA, and you have a pediatric pulmonologist on speed dial, we're with you.
Labels: asthma, asthma news, asthma resources, pediatric asthma

Article on Flu Shots for Asthma Kids

This article just caught my eye on Yahoo! Health. It's about how children with asthma should get flu shots, but very few do.

I have a number of thoughts on this, especially since I have an egg-allergic child on the autistic spectrum (the vaccines are grown in fertilized chicken eggs).

• Thought #1: Perhaps if all flu shots were thimerosal-free, I wouldn't think twice about it. But thimerosal-free vaccines are only an option -- and not all insurance companies cover them.
• Thought #2: Flu strains mutate over the course of a single season. The vaccines are selected on the assumption that the strains covered will be effective for that season. It's not always accurate. Even if you decide to vaccinate, you're not guaranteed a flu-free season.

Given the risks the flu poses to asthmatic kids, I'm pretty well pro-vaccine if you can go Mercury-free. Just know that it's not a perfect solution.

Now here's article:

Ch

ildren with asthma should get flu shots to protect them, but only 3 in 10 do, U.S. health officials said Thursday.

We were surprised at how low the number was," said Susan Brim of the U.S. Centers for Disease Control and Prevention, lead author of a study that looked at flu shot data from 2005.

The study represents the first national estimates on flu vaccination rates for asthmatic children.

Children with asthma, a chronic lung problem marked by wheezing, coughing and labored breathing, can die from flu complications, such as pneumonia and acute respiratory disease. And they are at higher risk for those problems. Inactivated flu vaccine is recommended for asthmatic children older than six months.

The study's findings came from an analysis of a 2005 national survey of the parents of children ages 2 to 17. About 5,100 kids were represented in the data, and 557 of them had asthma.

Only 29 percent of the asthmatic children had gotten flu shots during the 2004-05 flu season. The lowest vaccination rates were among children ages 5 to 12 who had not had an asthma attack or episode in the previous year.

The survey came after a flu vaccine shortage that caused long waiting lines for shots. Brim said it's not clear what impact that had on the study results: Asthmatic children were prioritized for the scarce shots, so the shortage may not have hurt — and possibly might even have boosted — vaccination rates that year, she said.

The low rates may have to do with family's misperceptions about flu shots, said Dr. Gerald Teague, a pediatric pulmonary specialist at Emory University.

Many patients seem to mistakenly believe flu shots can trigger asthma attacks or flu symptoms, and it's important that doctors talk to families and address such concerns, Teague said.

"Influenza in a child or adult with asthma can be fatal," he said.

...Nothing like ending things on a positive note!

Asthma Parents on Ning

I started an Asthma Parents Group on Ning.

What's Ning? It's new social networking site where, essentially, you can start your own, focused version of "MySpace."

Here's the invite:

Come join me on Asthma Parents!

Click here to join Asthma Parents!

About Asthma Parents
If "nebulizer" is part of your every day vocabulary, you know the difference between an MDI and an HFA, and you have a pediatric pulmonologist on speed dial, we're with you.

Ig at the Cardiologist

I've mentioned a few times that Ig has gone cyanotic on me -- from turning fully blue to just going blue around the lips. The pulmonologist thinks is probably just reflux triggering a bronchospasm, but she wanted us to see a cardiologist -- just in case.

So we went to the pediatric cardiologist this morning, nearlhy 2 months after getting the appointment. (Guess we're lucky to even have one nearby and under our insurance, right?)

Of course, Ig is sick again, and of COURSE he pooped right through his diaper the minute we were leaving...but beside the point...

The appointment was very long and very thorough, and at times, very unnerving. During the ultrasound, for example, the tech kept zooming in and taking more and more pictures of one area, and all I could think was, "Oh, no. She's found something."

Even worse, at one point, they took his sats and he was only 83. Normally, I would question that, but the cardiologist is actually in the same clinic as our PP and shares the same nurses, so I was fairly certain the nurse how to get a correct pulse-ox on my baby.

But actually, everything was FINE. Not only were his sats perfect, there wasn't really anything wrong with his heart at all. One wall *may* be a little thick, but apparently, that's nothing to worry about, and it may be "a normal variant" for Ig. But we'll check it again next year, just in case.

What a RELIEF.

Levalbuterol (Xopenex) No Better Than Albuterol, Says Public Citizen/ WorstPills.org

Hah! Guess they've never had to deal with kids on albuterol. (For the uninitiated, you may as well give them a twelve pack of Red Bull and a couple of Hersey bars....)

Levalbuterol Is No More Effective Than Older, Cheaper Asthma Drugs and Should Not Be Used, Public Citizen Advises on WorstPills.org
“Worst Pills, Best Pills” Subscribers Receive Life-Saving Warnings About Dangerous Drugs Before They Are Removed From the Market

WASHINGTON, D.C. –Levalbuterol HFA (Xopenex HFA) inhalers are no more effective than older, less expensive drugs used to treat asthma and other diseases and should not be used by consumers, Public Citizen writes in a new February posting on its WorstPills.org Web site. The consumer advocacy organization cited information published in the March 2006 issue of Medical Letter on Drugs and Therapeutics.

In 2005, Americans filled more than 2.2 million prescriptions for levalbuterol at a cost of more than $293 million. Marketed by Sepracor Inc., levalbuterol has the same atomic components as the asthma drug albuterol, which has been on the market longer and costs less. The difference is that, while albuterol has both of the two mirror images of the molecule, levalbuterol has only one. Levalbuterol is available in two forms, Xenopex [SIC]HFA, a pocket-sized inhaler approved by the Food and Drug Administration (FDA) in March 2005, and Xenopex, a liquid drug approved in 1999 that is converted to a fine mist when passed through a device called a nebulizer. Levalbuterol is short-acting and is used to relieve symptoms experienced during an asthma attack. In 1999, Public Citizen placed levalbuterol on its “Do Not Use” list of drugs because there was – and still is not – any compelling evidence that levalbuterol is safer or more effective than albuterol.

“Creating a drug that is nearly identical in nature to a drug that is already in existence and then marketing it as a ‘new’ or ‘breakthrough’ drug is a strategy that neither helps consumers nor produces better drugs,” said Dr. Sidney Wolfe, director of Public Citizen’s Health Research Group. “In marketing levalbuterol as such, the manufacturer is manipulating patients into unnecessarily paying hefty prices.”...

Again, I say the value of Xopenex is not the effectiveness of the drug -- we know it's equal to the cheaper, generic albuterol in that way. But the side effects...where albuterol has the kids bouncing off the walls (especially lovely if they're already on oral steroids) levalbuterol yields negligible negative effects.

To be able to give your asthmatic child a neb at 2:00 AM and know that they'll actually be able to sleep after that is worth the higher copay.

Asthma - Not a disease, a collection of symptoms

Just found this article on NewsTarget, which seems to be an aggregator of highly biased, self-serving news with a decidedly non-medical bent. But this one may have some merit. Here's a pretty comprehensive excerpt:

(NewsTarget) The medical journal The Lancet is appealing to the medical
community to stop using the term "asthma" as it misleads people to believe it is
a disease rather than a group of symptoms with various origins and
characteristics.

Symptoms of asthma include wheezing, coughing and breathing difficulties,
and it is generally accepted that attacks are brought on by inflamed airways,
but the actual spark for the inflammation is not known, nor is the reason why
some people contract asthma while others do not.

"Perhaps asthma as
a symptom is really only the clinical manifestation of several distinct
diseases," said The
Lancet article. "Rather than confusing scientists, doctors and patients even
further, is it not time to step out of the straight jacket of a seemingly
unifying name that has outlived its usefulness?"

The article went on to explain that asthma can have a multitude of
triggers, symptoms and treatments, providing more evidence that it is
inappropriate to label it as a single disease.
"The Lancet article raises
some interesting points; asthma is indeed a complex ailment," said Dr. Andrew
Miller, a spokesman for the British Lung Foundation. "But whether this is a good
enough reason to abandon a useful name which encompasses a range of symptoms
treated in a similar way is not yet clear."

...Currently, experts claim that approximately 300 million people have
asthma worldwide -- a number expected to reach 400 million by 2025. One in 250
deaths is caused by it, and children with allergies are more likely to
develop the condition. The Lancet noted that there has been an increase in
childhood allergies across the globe.

"Until the 19th century fever was regarded as a disease and maybe in
20, 30 or 50 years' time we will look back at asthma in the same way," said the
editorial.

Ig has Croup - allegedly

Saw the peds today -- Ig was up last night coughing so badly, B and I were both freaking out a little. We finally woke him up at around midnight to give him a neb of Xopenex.

This morning I brought him in. It's Saturday, and we were probably among the last patients on what seemed like a very busy day, so she did seem like she was rushing a bit. And I'll confess upfront (and I've said this MANY times before on this blog) while I love my peds, I don't trust them when it comes to determining the clarity of my kids' lungs during the infant/toddler years.

Anyway, she listened to my concerns (low-grade fever, cough, ear pain, etc.), and checked the baby out. She said his ear looked better, so she thought the Omnicef was working -- but based on what I told her, she suspected croup. Now, she didn't hear him cough. And - shocker - she said his chest sounded good.

She wants me to keep up the nebs, and she gave me a box of Pulmicort. I reminded her that he was on Flovent already (fair enough, the pulmo prescribed that), and she said we might want to replace the Flovent with the Pulmicort for now.

Ummm...will one Respule be the same as his regular dose of Flovent 110? She didn't say... I'll cut her some slack. Just this once. I'm a frequent flyer, and she was in a hurry.

She did point out that he'd been in for an ear infection once monthly for the last five months, and that we should follow up with the ENT.

Great. So in the next month, Ig will be visiting the Pediatric Pulmonologist, a Pediatric Cardiologist, and a Pediatric Otolaryngologist. Thank God for health insurance.

No Flu (I don't think) and Iggy's Ear

So, I'm feeling a lot better today, and while I haven't taken my temperature since I woke up, I don't think I have a fever. So...phew.

Ig, on the other hand...not so good. I took him to the peds for his millionth ear infection on Tuesday and we started him on Omnicef. The deal was, if the Omnicef didn't work, we'd have to talk to an ENT about treatment. (read: TUBES)

So we're on the fourth day of treatment, and I've finally brought him back to daycare, and they call me less than two hours after dropoff to tell me that he's running 100.5. Yes, that's a low-grade fever, but four days into an broad-spectrum antibiotic, should there be ANY fever? I think not.

He's also had two rough nights in a row. Wednesday he was up screaming bloody murder every two hours. Last night, he was up at about 1:00 screaming. I gave him some Dimetapp (mostly because he was coughing -- and I couldn't remember when I'd given him Motrin) and a cup of water -- which he sucked back like he hadn't seen fluids in a year.

Both nights were better than Tuesday when he spiked up to 104.9.

Spoke to the peds today, and they said that the antibiotic could take another day or two to kick in (yeah, right...) but that if he had another rough night, they'd see him tomorrow morning.

Ah, nothing like the pediatrician's office on a Saturday!

(Did I mention the hideous cough, by the way? We'll be talking about that with the doc, too. I've been giving him albuterol twice a day.)

Do I have the flu?

Ugh -- Ig's just getting over his 3 millionth ear infection, Ozzy's coughing his head off in bed, and I think I've got the flu.

I've just got that achey feeling in my back and the chills right now -- along with a goopy throat and slight cough. My temp is a little over 99.

Here's how I know I'm the mother of asthmatic children: I'm relatively unphased by the fact that I'll be sick through the holiday weekend. I'm FAR more concerned that I may have already exposed my three asthmatic kids to the flu.

(Oh, for a plastic bubble!)

I'm a super-affectionate parent, so I've been all over the kids all week, just like always.

Please, please...just let this be a little cold. Or some freaky thing that only grown-ups can get!

Long overdue update - asthma attacks, RSV, cyanosis and more fun!

Wow -- I can't believe how long it's been since my last post! Rather than blather on, I'm going to cut to the chase and just bullet out what's been going on:

• B - #1 son has been doing great! He's still on Singulair and Flovent 44, but he's had a GREAT winter so far. He had one asthma attack, just last Sunday - stupidly, we let him sleep in his room the night after we'd painted. But honestly, I'd have to check the blog to see when his last flare up was prior to that.
• Oz - it hasn't been as rosy for this guy. Ozzy developed a nasty case of RSV on 12/15. When I took him to the doctor on 12/18, I asked if he was wheezing, and she said no -- because he couldn't even get a deep enough breath to wheeze. We went for a chest Xray and an RSV test, and we ended up doing nebs every three hours for TEN DAYS. It was rough -- and honestly, he didn't have his color back until about two weeks ago. And now he's coughing again. He's currently on Flovent 110.
• Ig - Also coughing again. He had mild RSV at the same time Oz had it. At around that time, he started going cyanotic. His lips go blue nearly every morning, and we're not sure why. We're going to the cardiologist next month. He's also on Flovent 110.
• Me -- Finally taking off the baby weight! Or inches, anyway. Somehow, I've found the time to join Curves (30 minutes x 3 times per week is about all I can manage with a family and full-time job!) I've lost 2 inches off my waist since December -- If I can lose 10 lb. and another 3-5 inches of Iggy weight, I'll be happy!

More soon ... I wont' have this long a lapse again!