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Wednesday, February 15, 2017

New medication for kids with uncontrolled asthma


These are a few of our "empties"......no, not THOSE kind of empties! 

No beer bottles here!

These are some of the controller inhalers/discs we have used over the years. Controller medication is what you take EVERY day for your asthma to keep the swelling down in your lungs. It's important that you take it every day - whether you feel sick or not.

There are four in my family with asthma (myself and my 3 kiddos - 2 of whom are now grown.) All of us have different struggles with trying to control our asthma over the years.

So, we have tried almost every asthma medication that is on the market. In fact, when we saw a TV commercial for an asthma medicine, I asked daughter Kitty, "Hey - you had that one once, didn't you?" She didn't even look up from her homework, but said dryly "Yep, if they make it, I've tried it."

I always like to keep my eye open for anything new, so I follow the Allergy & Asthma Network Facebook page. Last week, they posted an article from Medscape that said "FDA Ok's Symbicort for Uncontrolled Asthma in Kids 6 to 12."

Symbicort (the bright red inhaler above with the grey cap) has been around for a while, but was only used for those 12 and older. A new study has shown that it can safely be used in kids 6-12.

I love my Asthma Doc because he is willing to try different medications, different doses, etc to find one that we feel controls our asthma. 

How do you know if your asthma is in control? GSK has an Asthma Control TestTM for those 12 and older. This is the Asthma Control Test for 4-11 year olds.

If your child's asthma is not in control, talk to your doc to see if they want your child to change a dose/try a new inhaler.

Life is short! Let's keep those lungs working!

Thursday, February 9, 2017

Asthma moms! Are you taking care of yourself?


With 25 years of parenting under my belt, you would think that I would have learned by now how to take care of myself AND my kids, but nope.

This photo is me in the hospital, having some tests run.

Apparently years of chronic stress have taken a toll on my poor little body.

As mom to 3 kids with asthma, we have had a LOT of stress over the years. My two youngest kids were hospitalized 12 times for asthma (2 were ICU.)

When my kids were little, it seemed like they were ALWAYS sick! If they would come home from school with a runny nose, I would start to panic. For us, it would just be a matter of time before all the other cold symptoms would start (sneezing, coughing and wheezing). 

We knew where to find all the after hours pediatrician offices!

But wait, there's more!


And for us, that would mean a 3 day hospital stay. But we also had two other kids at home, so how do we juggle all of that? Who could pick them up from school? Take them to scouts? Dance? Drive to Target at 10:30 at night (on the way home from my turn at the hospital) because the new semester was starting and my son needed shorts for gym class? True story by the way.......

Throw in a car accident or two, black mold in my house, six family members dying and the odd assortment of every day stress of being a mom, and it's no wonder my health suffers!

As part of the pre-flight announcements, the flight attendants will always tell you that if the cabin suddenly loses pressure, an oxygen mask will drop. They tell you to put your oxygen mask on first before you help your child.

How many of us do that? Our first instinct is to put on our child's oxygen mask first, then take care of ourselves. 

That sounds like the life of a mom in so many ways. We make sure everyone else is fed, dressed and off to school. We take kids to piano lessons, swimming lesson and attend their band concerts. In between we put in a full day at the office (or a full day of taking care of kids at home.)

With kids with a chronic illness like asthma, you throw in all of the medical stuff on top of that and its no wonder we have a hard time keeping up - let alone time to take care of ourselves.   

For all of you asthma moms - what have you found to help you handle stress?

Yoga? Funny movies? A bike ride or walk? Chocolate?

Comment below - maybe you can spark an idea for another asthma mom. And together, we can take a moment for ourselves! 

 

  


Thursday, February 2, 2017

Do I disagree with the experts? Well.....yes!


I feel that there is no one-size-fits-all approach to treating asthma. You can see from the picture above a small sample of what we have around the house for allergies and asthma.

My 3 kids and I all take different medication and different doses of allergy and asthma medicine.

Son #1 swears by Allegra, but daughter Kitty likes Zyrtec. I can't take either one because it makes me feel WAY too tired. So I use an over the counter nose spray .

The same is true for our asthma medicine, we all have different inhalers that we feel work best for us.

But with asthma medicines - what works best? Inhalers or nebulizers?


Do I think they are right? 

Nope.

I get that they are researchers and they have their professional opinions and the science to back it up.....

But, I know my body, and I know what works best FOR ME. There are times when I am so sick that I am breathing really shallow (I can't take in a deep breathe). In fact, if I try to breathe deeply, I will start coughing so hard I can't seem to catch my breathe and I almost throw up.

So, when that happens, I CAN'T use my inhaler because I can't breathe in deep enough to inhale the medicine. But, I can sit on the couch and slowly breathe in the mist from the nebulizer while I try to stay calm. (Staying calm is not easy when you are desperately trying to breathe....)

Yes, I know that a nebulizer takes more time. But, if you can't breathe in deeply to use an inhaler, what choice do you have?!

I have noticed the same thing with my kids. When they were little and either headed to the hospital/or had just been discharged from the hospital, they were really weak and breathing was a BIG job. They couldn't breathe in deep enough to use an inhaler. So, we used the nebulizer.

I also liked being able to give them a breathing treatment while they were sleeping. We had an oxygen monitor, and I would check on them often during the night when they had pneumonia. If their oxygen level was low, I would plug in the nebulizer near their bed, strap the mask to their face while they slept and give them a breathing treatment.

We TRIED having them sit up during the night and breathe in deep enough to use their inhaler. Tried. No dice. Didn't work. They would start a really bad coughing spell, and sometimes they would throw up.

So, we learned to use the nebulizer when they were really sick.

We pack the nebulizer when we travel. It's been to the Grand Canyon, Disneyland, grandma's house, etc. We learned to never leave home without it.

Remember, everyone with asthma is different. Asthma flare ups (or attacks) can be different too. Some are mild and can easily be treated by an inhaler. Other times, only a nebulizer will do.

So, what works best for you? Inhaler or nebulizer? Talk to your doctor and she can help you decide what's best for you. Even if it's not what the researchers say you should be using...you can be a rebel like me and disagree! 

Monday, January 23, 2017

Learnin' the lingo

(Shutterstock image)

If there's one thing I learned being a mom to 3 kids with asthma, is to know oxygen levels. When they were little, my kids were hospitalized 12 times for asthma (2 of those were ICU.) 

In addition to watching for their skin color, fingernails, or lip color to change, I checked their peak flow meter, listened for wheezing, and gave breathing treatments. I also learned how to use an oxygen monitor.

We had a hand held monitor we borrowed from a friend, similar to the photo above. (I just did a quick search online and found that you can buy a finger tip monitor for $20-$40!) Wow! The one we used back in 2000 - 2007 was about the size of a paperback book and cost $800.

Once you have a monitor, how do you know if your oxygen level is low?


"Normal pulse oximeter readings usually range from 95 to 100 percent. Values under 90 percent are considered low."
 When my kids would get REALLY sick, I always pulled out the oxygen monitor. They usually followed a pattern. They would start a cold and their oxygen level would be 94. Then it would steadily drop over the next day or two. Once it hit 90, we would head to the ER, because I knew the hospital would admit my kids and start oxygen and steroid IV's. That would also mean 3 days on the pediatrics floor. (Which was fine - I was more than happy to let the professionals take over!)

When I would get to the ER, I would "speak the lingo" or use the medical language so the doctor would know that I know what I'm talking about. I would let them know:

  • my child had been hospitalized before for asthma
  • all of the asthma medications my child was taking
  • how much my child's peak flow meter level had dropped
  • how often I was giving breathing treatments (and when I gave the last one)
  • we had already started oral steroids, but my child was not breathing better
  • I had an oxygen monitor at home, and what the level was 
I have noticed that some doctors or nurses call it the "sat level" (short for oxygen saturation level), while others call it the "02" level (oxygen level.)

If you are want more info about  "When to go to the ER if your child has asthma." 
 Nemours Hospital has a helpful section on their website.

Recently, I was in the hospital with a family member who had an accident, and I noticed their oxygen level was  VERY low. Remember the quote from Mayo Clinic that says "values under 90 percent are considered low?" Well, this family member had an O2 of 85. And at one point, they would drop to 73.

When the nurse was in the room, I would say that I was worried about my family member's oxygen, that I had been watching it while the nurse was gone, and family member's  O2 level was bouncing between 73 and 85. He said, "It sound like you know what you're talking about." 

I said, "Well.....I am a Certified Asthma Educator (AE-C)! I have asthma, and 3 kids with asthma, and they were hospitalized 12 times when they were little. So I have learned to REALLY watch O2 levels."

Now, you don't have to be a AE-C to know about oxygen levels. You can learn more from  John Hopkins  and your doctor. Work with your doc to learn more about asthma treatment plans, and how to know how sick your child is - and if you need to go to the ER.

Meanwhile, I will keep watching O2 levels anytime a loved one is in the hospital. It makes me REALLY nervous when the levels drop.

#AsthmaSucks   
 

Thursday, January 19, 2017

A tip if you end up in the ER






Last week, a family member had an accident and we had to call the ambulance. 

While we were waiting for the ambulance, I told daughter Kitty to throw some snacks in my purse. Unfortunately, we have had LOTS of experience with the emergency room. When my kids were little, they were hospitalized 12 times for asthma. So I knew that there were a few things that would make our LONG wait in the ER a little easier.

Here are a few things I have learned:

  • It can be unexpected and scary to be in the ER
  • You are going to be there for a LONG time
  • They are busy, so all they can help you with are medical problems
  • Snacks help grab trail mix, granola bars, etc
  • Grab your favorite water bottle 
  • Don't forget a portable power bank/phone charger
  •  Humor can help - people are usually shocked and scared and may say or do things that normally wouldn’t
  • The medical staff are your friends - treat them that way!


With my kids, we first go through the triage area, then they usually put us in a holding room in the ER. Then it was 2 or 3 hours before we would go upstairs to a room in pediatrics. Every illness or injury can be different, but the staff usually has to draw blood for the lab, order MRI's, CT scans or x-rays. That  takes time because there are other people in the ER who ALSO need labs, MRI’s, CT scans and x-rays. So……we wait.

While we wait, I don't ever leave my kid’s bedside (except to use the bathroom!) There was no way I was going to go wander around and try to find a vending machine or cafeteria. So I learned to throw snacks in my purse before we left for the ER. I grab candy, fruit, granola bars, trail mix, string cheese, raisins, nuts – anything I could find to get me through a few hours in the ER. I am nicer and can focus better if my blood sugar is stable. Who needs a tired, cranky mom in the ER?!

It seems like accidents and illnesses never happen during the day. It's always seems to happen in the middle of the night. So you may want some caffeine too! 

While you wait, there is the parade of people coming into your ER room (the registrar that wants me to sign paperwork, the lab gal, the nurse, medical assistant, respiratory therapist and the doctor.) You never know who is going to pop into your room,  so….you wait. 

I would usually walk back and forth and watch the oxygen monitor. Then check to see how many liters of oxygen my kids are on, rub my kid's cheek and forehead, text an update to a family member, look at their oxygen level (again), check the clock (again) and have a snack or caffeine.

When the tests would come back, and the doctor would come and tell us the results (usually that one of the kids had pneumonia) and then they would take us up to the pediatrics floor. That was always a huge sigh of relief when I knew the professionals were taking over. I know when I'm in over my head and can't treat their asthma on my own. My kids would need oxygen, IV steroids, a respiratory therapist, doctor and nurse.

We usually stay in the hospital for 3 days when my kids have pneumonia. So Hubby and I take turns staying there. The other parent goes home to shower, change clothes, and spend time with the other kids. Being admitted to the hospital is very different from being in the ER.

You may not be admitted to the hospital if end up in the ER, but think ahead – what might you want if you are stuck in the ER for 3 or 4 hours? I always carry a big purse with the usual mom stuff - Tylenol or Advil, lip balm, gum, tissues, etc. So I just throw in a few snacks and a water bottle. 

What have you found that helps you when you are in the ER? 

Wednesday, January 11, 2017

Colds, asthma and the straw exercise



Well, I jinxed myself. Remember last week's post how I talked about not getting a bad cold yet this year? 

Yeah, well as careful as I was - I finally caught a cold. The photo shows my medicine pile for work. (By the way - I am NOT endorsing any of these things....nor do I get any money from any of the companies. I just wanted to show what I have to haul around between work and home when I get a cold.) These are a few of the things that seems to help sooth my throat, help my congestion and cough.

Daughter Kitty was sick, so I knew it was just a matter of time until I caught her cold. Even being as careful as I could be with hand washing, etc. it caught up with me.

It took a day or two, but it's now affecting my asthma. Hubby is sick too, but since he doesn't have asthma, he doesn't get as sick as I do.

In fact, he seemed surprised when I told him my chest was tight and I was having a hard time breathing.

People who don't have asthma have a VERY different experience when it comes to fighting colds. They get the scratchy throat, sneezing, runny nose and cough. 

But when you have asthma, it also affects your lungs so you have a hard time breathing. As I sit at my desk and type this, I am short of breath. It feels like I just walked up a long flight of stairs - and I am just sitting and typing! 

I used my nebulizer before work for a breathing treatment, but it's wearing off. So I'll use my rescue inhaler from my purse while I'm at work.

When we teaches classes about asthma, we do a little "this is what it feels like to have asthma" exercise.  (If anyone in the class has asthma, we do NOT have them participate!) We pass out coffee straws to each person. Then we have them jog in place for 30 seconds. Then we have them plug their nose and breathe ONLY through the straw.

I watch their faces as they desperately try to suck through the straw. 
 
Then we ask them: "How do you feel? Can you get all the air you need? Are you starting to panic a little because you can't breathe?" 

Then we have them pull out the straw.

People often say that not only can't they get enough air, but they are scared because they can't breathe. 

Welcome to my world! 
 
When you can't breathe, it is scary, and you can panic. Then that makes it harder to breathe. It's a vicious cycle. 

Then I tell them, "This is what it feels like to have asthma. Except, we can't take our straw out and breathe normally."

I see many people finally have that "Aha!" moment.

UNC_Chapel Hill has instructions of how to do this if you want to try it with a school group, scouts, etc.

Be careful if you use this activity so people don't chew on straws, poke their neighbor, etc. And you might want to pass around a trash can immediately after and collect the straws. Especially if it's a group of kids (or adults!) who might keep chewing on the straw. 

Well, its time to get back to my tissues, throat lozenges, rescue inhaler, hand sanitizer and self imposed exile in my office. (I don't want to get anyone else sick.)

Hopefully this doesn't last long and morph into pneumonia

Tuesday, January 3, 2017

Don't even think about sitting next to me if you are sick


I'm not kidding. 

If you are sick (sneezing, wiping your nose and coughing), I will get up and move.

It doesn't matter if I am at work, church or the grocery store. I have changed seats in a movie theater and church, and swung my grocery cart around in the middle of the aisle to get away from someone who was coughing (and not covering their mouth of course!)

When my kids were little, their teachers would teach them to cough and sneeze into their shoulder or elbow and NOT THEIR HAND! Why? Because you cough or sneeze into your hand, then touch doorknobs, elevator buttons, the copy machine, etc. 

And then some unsuspecting person comes along and touches the doorknob, elevator button, copy machine and then innocently scratches their nose or touches their face. And BINGO! They are sick.

Am I over - reacting? Nope.

With asthma, you can have swelling in the lungs and not know it. You can't see it or know that it's there. So, a cold or flu on top of asthma can spell disaster. 

My 3 kids and I all have asthma. So, when they get "a little cold", it always turns into pneumonia - and that means another hospitalization. When they were younger, my kids were hospitalized 12 times - almost all of those were thanks to pneumonia.

When I get "a little cold", I also get pneumonia. That means I miss a week of work and am propped up on my couch with my nebulizer, giving myself breathing treatments.

Last time I had pneumonia, I was so weak that I could barely drive myself to the doctor. I knew I needed an antibiotic and course of oral steroids to get the swelling and infection out of my lungs.

It. Was . Scary.

And to top it all off, I coughed so hard I pulled a muscle in my ribs. Every cough was a new experience in pain! 

NOVA's Gross Science says that a sneeze and cough can travel all the way across a room and even be sucked up into the ventilation system!  

So, how do you keep healthy? Well, I will get up and move if I am around someone who is sick. 

If I see someone sneezing and coughing, I actually hold my breathe on my way out of the room. I'm not kidding.

I also carry a canister of pop up antiseptic wipes in my car. Any time I leave a store, work, etc, I pull out a wipe and clean my hands. Then, as soon as I get home, I wash my hands.

It's January and so far so good. I haven't had a cold yet, although PLENTY of people around me have been sick.

Now that I've said that, I'll get sick, right?!

What do you do to keep yourself healthy?