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Tuesday, February 2, 2016

Having Chronically Sick Children

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One thing I have learned over the years is that people don't understand that asthma is a CHRONIC disease 
(meaning it last for a LONG time)

Unlike a cold (which is an "acute" illness - meaning it lasts a short time.)

For many of us, asthma is there for life. I can't count the number of times someone has said, "My brother's next door neighbor had a friend in college who met a guy who "outgrew" their asthma, so you will too!" 

They mean well, but the fact is that asthma is a lifelong disease. I'm almost 50 and have not yet "outgrown" my asthma!

And all 3 of my kids inherited my asthma (sorry about that guys!) They have severe asthma, which means they have been hospitalized 12 times (and one son almost died twice.)

I just read this article about families dealing with kids with chronic conditions. It's called "The Connections We Make as Parents of Chronically Ill Children" 

Erin Gunn talks about 3 types of families that she sees visiting the hospital:

  1. Families who are just there for a medical test and leave
  2. Families who have had kids hospitalized, but will go back to "normal" (we sort of fit under this category)
"The second group of families knows worry. Their child has an illness that requires inpatient care or surgery. They have watched their child have painful or scary procedures. They know what it’s like to sleep in a chair at their child’s bedside. They also know their current nightmare will be over soon, and normal life will resume."

3. Families whose kids have life-threatening illnesses and will spend weeks or months in the hospital (over and over again)
Reading this article helped me remember our Family Mantra:
 
Yes, I have sped to the hospital with my emergency flashers on my car and run into the hospital carrying my lethargic, pale child. 
 
Yes, I have seen the panicked look on the face of the nurse and doctor in the emergency room. 
 
 Yes, I have watched the nurses unable to get an IV in my child's arm because their oxygen level is so low. It would take several tries (one time it took 7 tries to get an IV in son's arm.)
 
Yes, I have watched my son have a blood gas 
(they take blood from the artery instead of the vein - which is VERY painful)
 
Yes, I have watched my son hooked up to a heart monitor (so they will know if he "crashes" - or stops breathing and his heart stops beating.)
 
Yes, I have had to dig my fingernails into the palm of my hand to stop myself from crying in front of my child while they were in the hospital.
 
Yes, I have been sleep deprived, anxious, scared, and defeated during 12 hospitalizations for my kids. 
 
But none of that can compare to the families in category #3.
 
Reading this article makes me realize how lucky I am.  And how hard it is for other families with kids with medical conditions much worse than what we deal with.

Erin Gunn ends the article like this:


"Imagine if we start paying attention to everyone we meet. Imagine if we get to know their story a little, how it might impact our story. Imagine how much less alone we might feel. What if we open ourselves up to possibility, if we focus less on our busy lives and what we are doing next, and start paying attention to the moment we are in? It seems to me that we will have so much more empathy and compassion. We will learn so much about ourselves and others. We will have more support and compassion given to us when we need it."
Imagine. 

What if?
 
  
 
 
  

 

Monday, January 25, 2016

Found the cause for asthma?

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My friend saw an article in BBC news and shared it with me. I may have blogged about this already last year, but this a new article that says:

"Scientists at Cardiff University have identified the potential root cause of asthma for the first time, along with a new treatment."
Say what?? The article, titled "Cardiff University Scientists discover asthma's root cause"  is short, but says that the scientists have found the cause of asthma, a calcium recepting sensor - or CaSR.

They said they could use a drug that is already available, called calcilytics   
(those drugs are used to treat people that have bone-density problems like osteoporosis)

 And I had to listen to the video from Professor Daniela Riccardi about 3 times before I could figure out what she was saying. (Come on scientist - use regular people talk so we can figure out what you are saying!)

Anyway, check out the article and let me know what you think

Happy breathing!


Thursday, January 21, 2016

Would you share an inhaler?

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Allergy & Asthma Network shared a story on their Facebook page about a student who was disciplined for sharing their inhaler with another student

What would you do?

If your student has an inhaler at school, and they see another friend having an asthma attack and struggling to breathe,  should they share their inhaler? 

I know that legally, prescriptions are NOT allowed to be shared.

But - would this be considered a "medical emergency"? 

Should they let someone use their inhaler?

The student who did so was suspended and sent to an "alternative school." 

I know the panic of having an asthma attack and not being able to get my inhaler. 

What are your thoughts?

 


Monday, January 11, 2016

When allergy shots don't work...

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This is what it looks like when you have to be tested for allergies.This little guy doesn't look too bad. 

They can also test on your arms 





See all those red welts? That person is REALLY allergic to certain things (dogs, cats, horses, trees, flowers, etc.)

Daughter Kitty has had this done 4 times, yes - you read that right. 4 times over the years :(

Kitty also had to have allergy shots for over 5 years. AND THEY DIDN'T WORK!!!!! This is not for the faint of heart - you start out going to the doctor's office twice a week and gets a shot in each arm.(And you have to wait for 20 minutes so you don't have an allergic reaction)  Then you get shots once a week, then a couple of times a month until you reach "maintenance" - where your allergies are finally stable and you can slowly taper off the shots.

Well, that didn't happen for Kitty. We are back to the beginning. After 5 year's worth of shots, she is still struggling. That girl can sneeze 30 times in a row - easy! Then that makes her asthma flare up.

So, Asthma Doc retested Kitty (again.....) and sure enough - there were welts all over her back because she was allergic to so many different things. Sigh. (Do you mean to tell me that those 5 years were a complete waste of time??????)

This time, we may try Sublingual immunotherapy (drops under the tongue). The problem with regular allergy shots is that Kitty has HUGE lumps on each arm where she gets allergy shots (think lumps the size of half a hard boiled egg that is red and hot to the touch. The lump lasts for several hours while she holds cold packs on her arm.) Try holding a cold pack on your arm while you are trying to do homework.

This is just crazy! I haven't heard of anyone else that allergy shots didn't help. 

I have friends that have repeated allergy shots later in life - but not right after they finished their 5 year's of allergy shots.

Sigh. Just don't even know what to think right now.......   

Tuesday, December 29, 2015

Kid's asthma rates decreasing

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I just saw a story scrolling across the bottom of the TV screen while I watched Good Morning America on December 28th. It said that asthma rates are going down, after years of going up.

I can't find the story on Good Morning America, but found a LOT of other stories from many TV stations. The article was first published by AP Medical Writer Lindsey Tanner in a medical journal Pediatrics   But I can't find it there either. Sigh.

This is the best article I found on KSL TV (I like the awesome chart!) 

The article says that asthma rates were going up for years and years and now are going down. Researchers (I love smart people!) are trying to figure out why the rates would increase for so many years and then finally start to decrease.

The article from the AP website says that:

"Childhood asthma rates doubled from 1980 to 1995, partly because of more awareness and diagnosis."
Have you ever gone to the doctor with a sick kid and had them tell you, "It's just a virus."? My doctor told me that - about a week before Son #2 was hospitalized for asthma. I took my son to The Pediatrician with an article I had saved about asthma from Parents Magazine. I remember telling the doctor that I thought my son had asthma - he had a lot of the signs and symptoms of asthma. The Pediatrician said, "No. He doesn't have asthma. It's just a virus." Well, "just a virus" caused my son to have a severe cough, pale skin and dark circles under his eyes.  He seemed to get worse and worse over the next few days.

So, I marched right back to The Pediatrician and said, "something is wrong - my son just doesn't look right. " Well, something WAS wrong. The Pediatrician took one look at Son #2 and started a breathing treatment on the nebulizer and called the hospital (attached to our doctor's office) to ask them to get a bed ready for my son. He then told me to take Son #2 to the hospital and that they were admitting him to the pediatrics unit. 

Once in the Pediatrics Unit, a respiratory therapist said, "You know your son has asthma, right?" My mouth dropped open and I said, "I had him at The Pediatrician's office last week and he said my son doesn't have asthma!!"  Respiratory Therapist said, "Oh, he has asthma alright. That's why he's in the hospital." 

That was my introduction to the world of asthma - 16 years ago. Since then, all 3 of my children were diagnosed with asthma and they had 12 hospitalizations (almost all due to pneumonia.). I also figured out that is why I used to get REALLY sick every time I had a cold when I was growing up. I didn't know that I had asthma too!  That experience changed our lives forever.

But, I'm getting sidetracked! I was talking about how doctors are better at diagnosing asthma now (hopefully!), and that's why asthma rates have gone up over the last 20 years.

So, why are asthma rates going down now? Researchers aren't sure, but there are many things that make asthma worse (including obesity and bad air pollution.) Obesity rates are decreasing for kids, as are pollution levels in some areas.

I think people are more aware of asthma now and know how to treat it. Props to the CDC Asthma Program  

The CDC helps with asthma awareness at the national level, and then that helps people at the state asthma programs, which then helps people at the county and city levels. And then they can help your family!

Many states have asthma programs (Minnesota,Montana,New York, Utah, etc.)

Allergy & Asthma Network is a GREAT resource for families that have asthma. They also have a quarterly magazine, Allergy & Asthma Today that is VERY helpful. 

You can also contact American Lung Association 

Well, that ought to keep you busy for a while! Just remember that knowledge is power.

If you have asthma, use the resources above to figure out what makes your asthma worse (triggers) and learn how to avoid them. The more you know, the more if will help you take care of your asthma.

 
 




Monday, December 21, 2015

Just in case....


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Christmas is almost here and like many families, we will be traveling for the holidays. I have learned to be prepared......just in case.

I have learned to find:

  • Where did I put my Out of State insurance card?
  • Where is the nearest after hours clinic?
  • Where is the nearest emergency room?
 
I have learned to pack EVERYTHING.....just in case. I pack:
 
 
If you are staying home for the holidays, it also helps to know:
  • Phone number of the pediatrician
  • How their after-hours works (we have a network of doctors who each take a night being the after-hours doctor. We call our regular pediatrician, and they have a phone recording to let us know which doctor is available after hours and where his office is located. We then call there to make an appointment.)
  • 24 hour pharmacy (in our city there is one pharmacy that is ALWAYS open 24 hours a day. Find out which one is open in your city - it will save you stress down the road!)
Christmas is a wonderful day - but it doesn't mean medical problems stop that day. 
 
One year, we had to drive through our city of 100,000 trying to find a drugstore that was open on Christmas Day. (Son #2 had his tonsils out before Christmas and we ran out of liquid Advil and HAD to find a drugstore that was open so we could buy more.)
 
Kitty ended up in the hospital during New Year's Eve one year(stupid pneumonia!)
 
Illness doesn't take a holiday. Be prepared.....just in case. 
 
And Merry Christmas!! 


Monday, December 14, 2015

Hypoallergenic dogs as real as unicorns

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It's that time of year when many of us will be traveling to visit family during the holidays. 

The family stay with has a dog. Another family member INSISTS that there are certain dogs that are hypo allergenic 

She says there is NO WAY we can be allergic to her dog. Well, sorry, but we are. See those watery eyes and hear the sneezing? We aren't making this up you know!

There are is no such thing as a  hypoallergenic dogs!  Don't believe me? Here's a quote from an article in the Huffington Post 

"Contrary to the many marketing claims made to appeal to people with allergies to pets, there is no such thing as a hypoallergenic dog," Franklin D. McMillan, a veterinarian and director of well-being studies at Best Friends Animal Society, told The Huffington Post in an email.

All dogs have saliva and skin, which Dr. McMillan says:

"The most common cause of pet allergies is the dead, dried flakes (dander) from your pet's skin and the protein in the pet’s saliva that sticks to these flakes," McMillan said. "The pet’s hair itself isn’t a significant problem -- it’s the dander that is attached to the shed hairs. The fur and dander then stick to carpeting, furniture, and clothing."

That explains it. We are having problems with the sticky proteins on the dog's hair. 

Some dogs may shed less than other dogs.  

But everyone has different allergies and asthma triggers too. So, what may not bother one person CAN and DOES bother another.

If you are having problems, the article suggests several ideas, such as: 
  • Give the dog a bath once a week
  • Wash it's bedding once a week
  • Have hard wood floors instead of carpet (the dog hair won't stick to wood floors like it does carpet)
  • Vacuum often (especially if there are places where the dog likes to lay down)
  • Shampoo your carpets often
  • Keep the pet our of your bedroom
  • And don't let the dog lick you!
The American Kennel Club recommends some dogs that have "predictable non shedding coats" - so, in theory - they aren't supposed to shed as much.
 
However, my daughter has had severe allergic reactions to a specific dog on their list.
 
So, just remember that everyone is different. If you are allergic to a dog.......well, then you are allergic - to it no matter what anyone else says! Work with your doc to find the best treatment. Once again, that's different for everyone. He may tell you to take over the counter allergy medicine. Or you may be WAY past that and need allergy shots.

Yeah, dogs are cute. But for us, it's not worth the miserable runny eyes, sneezing, running nose and asthma attacks.
 
Here's part of one last quote from the Huffington Post article (the last part of the quote has a link to the American Kennel Club and list of "predictable and no shedding coats" - but that link is above.) It was too funny, so I had to share!
 
"So while hypoallergenic dog breeds are as real as hypoallergenic unicorns -- or, if they exist somewhere, researchers haven't found them yet......"