Monday, April 30, 2007

Monday Musings - World Asthma Day


May 1, 2007 is World Asthma Day.

Tomorrow hubby and I will be attending an event at The Credit Valley Hospital, where the Asthma Education Centre is hosting a community wide World Asthma Day. The theme for this year’s event is “You Can Control your Asthma”. We were invited by the Asthma Clinic nurse we met last year. Papoosie Girl has asthma and while we are fairly confident this is not immediately life-threatening, it is a chronic disease we live with and manage every day.


In case you are new to this here is how the Lung Association of Ontario defines asthma:

Asthma is a chronic inflammatory condition of the airways and one of the most prevalent chronic conditions in Canada. Asthma can develop at any age, but is most common in childhood. As many as 1 in 5 children and 1 in 10 adults has asthma. The airways of a person with asthma differ from someone without asthma because the airways of those with asthma become inflamed (swollen) and are extra-sensitive or twitchy (hyper responsive). The inflammation and hyper responsiveness cause airways to respond to a variety of triggers, such as cold air and cigarette smoke.

Did you know that?

  • Approximately 500 Canadians die each year as a result of asthma.
  • Asthma rates have quadrupled over the past twenty years. There are over 60,000 admissions to Canadian hospitals for the treatment of asthma.
  • Over 12,200 children under the age of 18 are hospitalized annually for asthma in Ontario. In Ontario, asthma is the leading cause of hospital admission for children.
  • In Ontario, as many as one in five children and one in ten adults has asthma.
Learning to live with asthma has been a on-going process of us, from her earliest diagnosis to hitting rock bottom one Christmas Eve. It is only in the last year and a half that we have really understood what it meant to live with a chronic disease. For many reasons we resisted this label and spent most of our time reacting to the symptoms as opposed to managing the disease and preventing them. As parents we are constantly told opposing information, "don't run to the doctor for every minor sniffle" followed by, "how could you not take care of this obvious problem." We spend our days wildly swinging between hyper-alert and benevolent neglect hoping to reach an acceptable middle ground.

Papoosie Girl was diagnosed early on at around the age of three. Prior to that she did show symptoms, but my family doctor felt it was too early for the label. It started innocent enough with colds turning nasty with lots of coughing and my doctor prescribing inhalers ("rescue" medication - the bronchodilator Ventolin and an anti-inflammatory drug - Flovent) for when she was coughing a lot. We would use these for a day or two then forget about them until the next cold. I felt very strongly that they just were not necessary for every day use. She was fine when she wasn't sick and I didn't want her (first of many misunderstandings about the disease) to become dependent on them.

Papoosie Girl actually had many other separate issues which we realized were linked to her asthma. She suffered eczema as a baby and also suffers seasonal allergies. She also had an intolerance to cow's milk when we switched from formula to milk. When we switched to soy milk, which she still drinks today she was fine. All of these seemingly unrelated problems all fall under what is considered "allergic diseases" including asthma. As she got older we started putting the pieces together and began the process of building a plan that would help her.

We were muddling along for about two years basically treating the asthma symptoms when they were severe, which was mostly when she was sick with a cold and once they subsided we more or less ignored it. It all came to a head in the fall of 2005. We had been seeing our regular family doctor for her asthma and that fall she had missed over 10 days of school. Every time she caught the slightest sniffle her asthma would flare up. For her that meant coughing non-stop all night until she often threw-up. Her "rescue" medication was not working and neither were the stronger anti-inflammatories we had started giving her. She was also at this point taking another drug daily called Singulair to help with her allergies which were triggering her asthma. She would be exhausted by morning and could not go to school. I kept waiting for it to get better and we had been to the doctors many times, in my gut I just knew this wasn't working. A child should not have to live like this I kept thinking. This was just not an acceptable way to live.

After suffering all through November and December it all came crashing down on Christmas Eve 2005. After everyone left our house and the girls were asleep we sat down in our dark living room to admire the tree lights and take in a moment of quiet. Before long Papoosie Girl was coughing and I was up in her room. Her coughing was out of control and I didn't want to take her to Emergency so I gave her another puff and we headed downstairs so we would not wake Rosebud up. We sat up all night watching the tree lights and it was like a realization hit me that I owed her so much more than this - to sit up coughing and gagging on Christmas Eve. I made her a promise that we were not going to do this anymore - we were going to get help.

I had a brochure from a pediatric walk-in clinic and we had gone there a few times on weekends with ear infections and bad colds when our family doctor was closed. They are open every Saturday and Sunday and all holidays. I started dialling Christmas morning while we opened presents and secured a spot for 1pm. Never mind the spin this put on our plans for the day, but I was determined, crazed even, to make this stop - even if it was Christmas Day. After opening gifts at our house we headed to my in-laws to visit, then we were coming back to our place to have dinner with my Mom and her husband. I left Hubby and Rosebud with my in-laws and Papoosie Girl and I headed to the clinic, it felt so strange to be driving on near empty roads to the doctors on Christmas Day, I remember driving by Tim Horton's and saw that it was open and I was shocked. I didn't have the heart to stop.

We arrived for our appointment and found the clinic busy but not crazy. When it was our turn and our doctor walked in I basically let it all pour out and dumped out a ziploc bag of medication and pleaded for his help. He quickly changed our entire plan - not that what we were doing was "wrong" it turned out to be just not nearly aggressive enough for her symptoms. He immediately switched her from the inhalers to the nebulizer and increased the dosages on everything. He set us on a strict plan for using the nebulizer up to six times a day and slowly weaning her down and closely monitoring her symptoms and triggers. I started a binder to keep track of everything and even came up with a spreadsheet to tick off her treatments and symptoms each day. This pediatrician sat with us for an hour (we turned out to be the last patient fortunately) and when we left there I felt better than I had in months. He asked to see her again and has been treating her asthma for over a year now. I remember heading straight to Shoppers Drug Mart from the clinic and the surreal feeling as I shopped on Christmas Day for a machine to help my daughter breathe and walking out with bags of medication. I was so hopeful and scared for her all at once. That night she coughed much less and by the next night she slept all night. In my mind it really was a miracle.

Shortly after that he recommended we visit an asthma education clinic (almost all hospitals have them) and we did and brought Papoosie Girl with us. The nurse spent nearly two hours with us answering all of our questions and talking to her and showing her what asthma is all about. In a few short weeks we went from being at the mercy of this disease to being able to spot a flare-up coming on and being about to prevent it or at least shorten it.
This is one of the key elements in managing her asthma, figuring out her triggers. We already knew colds were a huge trigger, but now we needed to figure out the rest, which include, changes in weather, smog, animals and even cold air. At the slightest hint of a cold now we know to increase her treatments to prevent a full-blown attack. Seems like common sense, but when we didn't really understand that we would waiting for the symptoms then treating - huge difference.


Her life is really no different from other kids. She can play sports we are just careful about too much running and we need to watch colds very carefully. We travel everywhere with her medication in case we need it and her school is well informed of her asthma. She will do her treatments on the nebulizer just about anywhere and we have an adapter so she can even do it in the van. It has become a part of her life just like anything else and she is not at all bothered by it. We have some wonderful books about asthma and the Lung Association sent us a huge package of material for me and with activities for her. They were and continue to be a wonderful resource for us, you can call them with any question and they will answer. The material they sent me was life-saving, it really helped me understand what living with asthma means.

There were days when I thought I just couldn't do this and words like, "we are managing" seemed a million miles away. It really has been a process of us not only understanding, but accepting this and only then were we able to move on. We have faith that as she gets older the symptoms will be less severe, you never really "outgrow" asthma as some say and we know she will have this her entire life. I want to make sure that the disease is managed so that there is as little damage to her lungs as possible, I do not want this to hamper her teenage and adult years in any way.

So we will go tomorrow night and learn more and better ways of coping. We owe her that much. The slogan, "if you can't breathe nothing else matters" really resonates with me. There is nothing so helpless as watching your child gasp for breath. I am confident we are on the right path now and that makes me breathe a little easier too.

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If anyone has any specific questions I would be happy to answer them. I have read several great books and researched quite a bit on childhood asthma. While I am no doctor I could certainly point you in the right direction. Email me if you want at rosebudandpapoosiegirl@yahoo.ca



8 comments:

Omaha Mama said...

I applaud your daily efforts! I am so not a routine oriented person, your daughter is so lucky that you are. I suppose you just have to be. Anyway, she's lucky to have you. Thanks for the info. Hope that World Asthma Day is symptom-free at your house!

Beck said...

Wow. Maybe I will email you - two of my kids are suspected to be asthamtic... I have it, as does my husband, but I'm currently asymotomatic. I'm not as well informed about the links between allergies and asthma as I should be!

Jenifer said...

OM-Thanks for the vote of confidence. Most days I just hope we are getting some of it right.

Beck-I am learning too! If you want to chat more you know where to find me. Hubby also has asthma here and that increases your kids risk as well. I am the only one in the house who does not have it.


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Hope this post didn't sound too much like a PSA...

Mimi said...

What a wonderful post. What strength you showed in doing so much on Christmas day. I admire that you honoured your commitment to your daughter, and that you work so hard to make her life better. This has obviously been such a liearning experience for you, and I've learned from your post.

Congratulations on stepping up so well to this particular challenge.

Pendullum said...

Such a strong woman you are...
my nephew suffers from it...and many a night in a hospital... But now as a teen, he seems able to cope...
But I remember seeing his wee body in the tents...He was in the hospital sooften... I tried to give my SIL litertature but she prefered the react to when it happened approach...
Wish she would have taken your stronger pro child approach... Hope the World Asthma Day went well...

Mad Hatter said...

Wow. Christmas will always be the day that you stood up for your daughter's health. What a legacy. Thanks for this informative post.

Sandra said...

Excellent post raising some critical awareness to asthma. You are such agood mom. My best friend has asthma and so do 2 of her kids ... it is not easy.

Alpha DogMa said...

When Dr. Know was a few days old I had to stand up to a bitch of a maternity nurse and speak my mind and put my foot down. I think of it as my first real 'mom moment.' There is something so powerful about a mom (or a dad) standing up for their child's health. Another great post!
(My mom's off to mass so I'm breaking my posting fast for you. I'm back on that illicit wireless connection. )
-N
PS - marvelous hairdo in those other photos. You good mom.