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Wednesday, July 27, 2016

Your kids can play Pokemon Go from their hospital bed!


This falls under the category of "What a Great Idea!" and "Thank You From Tired Parents in the Hospital!"

If you haven't heard of Pokemon Go, you must be living under a rock somewhere. Seriously.

 This game has taken the world by storm! Millions of people are using their smart phones to capture Pokemon in real world locations. If you have seen a large crows gathered around at places that don't usually have crowds (the library, police station, etc) and they are all glued to their phones, chances are that they are catching Pokemon.

So, what happens when you are a kid and you are stuck in the hospital? You have someone play Pokemon Go for you!

A group of college students  from BYU (Brigham Young University) created "Go For Good"

(By the way, I am a BYU alumni and I think those students are brilliant!) 

So, what is Go For Good, and how does it work?

 1. Volunteer "trainers" connect with kids via video-conferencing software

2. The software lets kids see what's going on in the outside world

3. The kids tell the trainers where the Pokemon are, and the trainers catch 'em all  (and the child can see it happen in real time)



Fox 13 TV station had a story about a local child in the hospital, who is having volunteer trainers catch Pokemon for him. And here is another story from KSL

What a smart idea! 

Those of you who usually read my blog know that my kids were hospitalized 12 times (2 ICU) when they were younger  - thanks to asthma and pneumonia (and smoke from a forest fire.)

When Son #1 was 7, he was visited in the hospital by the costume character Pikachu. I can still remember that day! (and Son #2 is in college now.....)  Pikcachu gave Son #2 a Pokemon shirt which he wore for YEARS - until it was faded and worn out. I can't tell you how much it means to parents and children stuck in hospitals to have SOMETHING to do while they are in there.

So, now kids can still have fun with Pokemon, but you can have a brother, aunt, dad, etc "be the legs" and "catch 'em all" while your child is in the hospital.

Have fun! And I would love to hear stories if you and your hospitalized child uses this.

With all the attacks, bombing, etc on the news, it's so nice to hear a GOOD story filled with love!



Tuesday, July 19, 2016

Keepin' stuff clean


(Shutterstock image)

 
One of the things that helps our family control our asthma is cleaning. For those of you who read this regularly, you will know that Hubby and I and all 3 kids have allergies. The 3 kids and I all have asthma. 

There are so many things that can make your asthma worse, or "trigger" or cause an asthma attack.The American Academy of Allergy Asthma and Immunology has a page on their website about common asthma triggers.

Triggers can be different for everyone, and change over time. 

Dust has always been a problem for me. It's so hard to keep things clean and dust free.

We have wood floors, which really helps because you can SEE all the dust and suck it up with the vacuum. Some people hate having wood floors (because you can see dirt, crumbs, etc.) but I LOVE them.

In fact, we live in a historic AKA old house. One of the things I love about my historic house is that is has wood floors. They were covered up with carpet when we bought the house, but Hubby and I tore out the carpet and he refinished the wood floors. 

We seem to breathe easier when we have wood floors and they are kept really clean. 

Some people sweep wood floors, but it seems like it just stirs up the dust into the air. We have a vacuum that allows us to switch the settings so we can vacuum the wood floors and a few areas rugs. 

If you are having a lot of asthma symptoms and can't figure out why, take a look around your house. 

Is it the carpet? Mayo Clinic says that hard flooring (wood floors, tile floors, etc) can be better when you have asthma.  

There are other things in your home that can cause asthma attacks, but today I talked about dust. 

Tune in later for more ideas of things to check for in your home,

 

 

 

Monday, July 11, 2016

Make an anaphylaxis video today (seriously....deadline is today!)





Well......I'm VERY late in posting about this, but better late than never!

Sarah Jessica Parker has a son with severe food allergies, and he experienced anaphylaxis as a young child. Her son is now a teenager, but they learned a lot along the way.

She would like to hear about other families that deal with severe allergies (food, latex, stinging insects, and medication allergies) and anaphylaxis. 

You can make a short 5 minute video and submit it. Winners will get to premier their film in New York City!

The deadline is today, July 11th 2016!!!!

She teemed up with Anaphylaxis for REEL  - get it? Reel as in film reel?

What should you include in your video? In an email from Allergy & Asthma Network, it said:

"What are the challenges you face managing your allergies and avoiding anaphylaxis?"

"How do you overcome those challenges?"

"What do you want other patients and families to know about managing severe allergies?"

Grab your phone and start filming. Share your story.

Help other families. 


Friday, July 8, 2016

It does get better!

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Being a parent is hard. 

Having a chronically ill child (or children) is hard too. 

Some days you think, "Will it ever get better?!"  

I had friends whose kids NEVER seemed to be sick. Or, they would get a "little cold" and sniffle for a week and be done. My kids would get "a little cold", get pneumonia and end up in the hospital.

A coughing kid can wake me out of a dead sleep faster than anything. "Who's coughing?" I yell, as I run from bedroom to bedroom with my heart pounding in my chest. 

That's how it would start at our house. A little cold. A little cough. And then it would go downhill from there.

We did everything right. Washed our hands. Used paper towels to open the door handle in public bathrooms. Washed our hands again as soon as we got home. Got flu shots every year. And we even had the pneumonia vaccine!

Made our home allergy and asthma friendly by tearing out the carpet so we could have the wood floors instead. Vacuuming. Mopping. Washing bedding. Washing curtains. Dusting blinds. Washing  the couch slipcovers.  Changing the furnace filters.

I had a chart on the fridge for each kid's allergy and asthma medicine. Who needs what at what time. We didn't miss a dose. Ever. 

And still nothing helped.

Friends would come over to play with my kids and I if could see a runny nose or hear that child coughing,  I would send them home.  (This is after I already told their parents to PLEASE not send their child over if they were sick. I would tell them a cold to you is pneumonia to us and ANOTHER hospitalization). 

Other parents with healthy kids don't "get it." 

We had 12 hospitalizations for asthma (2 of those were ICU.)

We get it. We get what it's like to know where every pediatrician's office is on our network - so we know where to go for After Hours help (which for us is from 5pm to 10pm.) After that, we would head to the ER.

We get middle of the night trips to the Emergency Department.
 
We get prescriptions, doctor bills, hospital bills, x-ray bills, lack of sleep, and crying. Lots and lots of crying. (From me....not from the kids!)

It hurts when my child can't breathe, and I can't fix it. Many times, I was in over my head. That's when I let the hospital take over. That's why I have insurance!

I let other people help too. I'll never forget a friend who said, "Is there anything you need?" I told her I was craving a hot, gooey chocolate chip cookie. She brought a whole plate to the hospital - still warm!

Friends took my other kids to and from school, and let them stay and play after school. Neighbors picked up groceries when my fridge was bare after a hospital stay. 

Friends brought "goody bags" to the hospital for Hubby and I. Full of magazines, crackers, gum, juice and most of all - chocolate!

It will get better. Kids get older. They can tell you when they hurt/can't breathe/don't feel well. You fine-tune their medications and learn when to increase their controller meds/start them on an oral steroid/ head to the After Hours vs the Emergency Department.

You learn to sleep when you can.  

Son # 1 and Son #2 are in college now and rarely have problems with their asthma. Daughter Kitty is in high school and still has her days, but hasn't been in the ER or hospital for a LONG time. 

It does get better. 

Take care of yourself. Ask for help. Watch a funny movie. Read up about asthma! Allergy & Asthma Network is a great places for families to learn more.

Keep your chin up! You can do this!

Wednesday, June 29, 2016

Ooh! Aaahh! Fireworks!

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It's that time of year again....Independence Day is coming up! 

And the 4th of July means all of my neighbors will be lighting fireworks. The entire block will be full of smoke.....which is a major problem when you have asthma.

I love fireworks as much as the next person, but if I didn't have to deal with all of the smoke, it would be so much more fun!

The city displays are always fun, because the smoke is higher up in the sky. For neighborhood fireworks, the smoke is down on the ground because everyone is lighting off the cheap fireworks.

Did you know that fireworks can cause problems with asthma? I can tell you personal stories, but I also found a study from Spain about fireworks and breathing problems. 

"The different colours and effects produced in these displays are achieved by adding metals to the gunpowder. When a pyrotechnic display takes place it releases a lot of smoke, liberating minute metallic particles (of a few microns in size, or even less), which are small enough to be inhaled deeply into the lungs."

"This poses a risk to health, and the effects are probably more acute in people with a background of asthma or cardiovascular problems," Moreno explains. "The effects in healthy people are still unknown, but common sense tells us it cannot be good to inhale the high levels of metallic particles in this smoke, even if this only happens a few times a year."


Fireworks make me really nervous because we had a bad experience about 15 years ago with Son #2. Son #2 had been outside playing with friends, and when I went outside to call him in for dinner, I noticed that there was a lot of smoke in the valley. I knew that there was a fire miles away on the mountain, but we lived a LONG way away from the fire. So, I was shocked to see that much smoke on the valley floor.

I ushered Son #2 inside, and he was coughing so I gave him a breathing treatment with the nebulizer. He seemed to fine during dinner.

Later, he went out with his dad to light some fireworks, and watch the neighbor's fireworks too.

When he came back inside, he was really struggling to breathe again. Since it had been longer than 4 hours, I gave him another breathing treatment.   

But he "didn't look right". I told Hubby that I was going to take Son #2 to the Emergency Department. Once there, the nurse took him right back to a room and started oxygen. The Emergency Department Doctor was really worried about Son #2, and they were trying to help him. (We found out later that Son #2 goes from bad to worse VERY FAST.) He's in that 10% of people with asthma that have severe asthma.  

With severe asthma, medicine and treatments that work on other people don't work on them. 

Son #2 was getting worse and worse, so they admitted him to the pediatric wing of the hospital.

In fact, we didn't realize how bad he was or that they had the "crash cart" parked right outside his room (the nurses were afraid he was going to stop breathing and die.) They didn't explain this until AFTER they felt he was out of danger several days later. I learned that they had put a heart monitor on him to alert them if he stopped breathing and his heart stopped. (I swear these scary situations are what has led to my grey hair.....)

So, after 3 days in the hospital, Son #2 was able to come home. But, every year since then, I have worried about fireworks and asthma. In fact, Son #2 is older now, and his asthma is much better. But I usually watch the neighborhood fireworks from inside the house. If not, I end up with an asthma attack and have to run and grab my Albuterol inhaler. 

So, enjoy celebrating Independence Day and the freedom we have living in America. And enjoy the fireworks! I'll be watching the neighborhood fireworks from my air conditioned living room while sipping on an ice cold lemonade. Now that's how I watch fireworks!


Wednesday, June 22, 2016

Coughing at night

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Coughing is one of those things that makes me sit up and listen. When my kids were little, they were sick - ALOT! They ended up in the hospital many times for asthma and pneumonia. So, every time one of my kids starts coughing, it makes me worried.

Son #1 was just coughing before he went to bed. I asked if he had been playing Ultimate Frisbee with his buddies, but he said no. He has exercise induced asthma, so Frisbee games, running, hiking, etc will set off his asthma. Usually I have to remind him to use his inhaler if he's coughing.

He said he noticed his asthma was flaring up the last few nights (he wast telling me this as he was coughing......). I said, "Well - use your inhaler - that's what it's for!" Son #1 said,  "Oh....yeah." Sigh.

I heard him coughing before he went to bed, and then during the night. The pollen count is really high right now, and he has allergies. But he always showers before he goes to bed at night. So, that helps the allergies and should also be helping his asthma. 

Then he told me that he ran out of his daily controller medicine. Ah ha! No wonder he's coughing! I said, "Well, now you know that the medicine really helps and you should probably get it refilled!" 

  Did you know you can take a 5 question quiz and find out if your asthma is in control? Asthma.com has an Asthma Control Test you can take. 

One of the questions is:

During the past 4 weeks, how often did your asthma symptoms (wheezing, coughing, shortness of breath, chest tightness or pain) wake you up at night or earlier than usual in the morning?






Verywell.com has a chart that shows how severe your asthma is. They list their chart as coming from: National Heart, Lung, and Blood Institute. Accessed: May 20, 2010. Expert Panel Report 3 (EPR3): Guidelines for the Diagnosis and Management of Asthma 

(Trust me - the chart from the Verywell website is a LOT easier to understand!)


It's hard to read, but if you look on the 2nd box, "Nighttime Awakenings", you can see how bad your asthma is. 

If you are waking up less than 2 times per month, you have "intermittent asthma."
If you wake up 3-4 times per month, you have "mild persistent asthma". 
If you wake up more than once a week (but not nightly) you have "moderate persistent asthma." 
If you wake up every night, you have "severe persistent asthma."

Coughing at night is just one of many ways doctors can check to see if your asthma is in control. This is hard to explain in a blog post, so it is best to talk to your doctor. He can see if you need to start on an asthma medicine, or change one that you are on now.

I talk to a lot of people who think it's normal for their asthma to wake them up at night. It's not (unless you are sick with a cold). 

So if you are one of those people with asthma that coughs during the night (and your spouse, brothers, sisters, roommates or whoever tells you that you cough at night - listen to them!) Some people don't even realize they are coughing during the night. 

If you are, it could be a sign that your asthma needs a little attention. 

Call you doc, and you and your family may all sleep a little better.




Wednesday, June 15, 2016

Asthma AND Vocal Chord Dysfunction?


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So, we were back at Asthma Doc's office AGAIN. Daughter Kitty is still having a tough time with her asthma (what else is new?)

This time, we were there for a Spirometry test.   It's a lung function test that can tell how well your lungs are doing. It measures how MUCH air you breathe in and breathe out, and how FAST you breathe out.

They can use the test to diagnose asthma and COPD.   

I was surprised to see that Kitty's graph looked normal. Asthma Doc was a little surprised too. Smart man that he is, he wondered if there is something else that is causing Kitty to have problems breathing.

He asked if she feels it more in her lungs, or in her throat? I was surprised when Kitty said she felt it more in her throat. 

One of the things that can be confused with asthma is Vocal Chord Dysfunction. Vocal what??  AAAAI -  American Academy of Allergy Asthma and Immunology explains it this way:

"Vocal Cord Dysfunction (VCD) occurs when the vocal cords (voice box) do not open correctly."
And
"In asthma, the airways (bronchial tubes) tighten, making breathing difficult. With VCD, the vocal cord muscles tighten, which also makes breathing difficult."
And if you are not already confused.....
"To add to the confusion, many people with asthma also have VCD."
Hm. Well, we KNOW Kitty has asthma. In our family, it's genetic because I have asthma, as does Kitty and both of her brothers. Kitty was hospitalized 4 times with pneumonia she was younger.  And she is on a daily controller medicine for her asthma.

 AAAAI lists the following symptoms for VCD:

Symptoms
Symptoms of VCD can include:
•    Difficulty breathing
•    Coughing
•    Wheezing
•    Throat tightness
•    Hoarse voice
•    Voice changes

You can watch a short video about VCD here. 

We first learned about VCD when Son #2 had a test to see if he had VCD. It's not a fun test - they stick a tube down your throat with a camera on the end. Then they watch your vocal chords open and close. Son #2 DIDN'T have VCD, but Asthma Doc thinks Kitty does.

You treat VCD with speech therapy. Jewish National explains it here.

Asthma Doc said he hasn't been able to find a speech therapist in our area that treats VCD. He knows that I have a knack for knowing resources and being able to find things.

Challenge accepted. 

If there is one thing we moms are good at, is taking care of our kids and getting the help they need.

Excuse me while I start my list of speech therapist for our county and start making phone calls.