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Friday, October 31, 2014

allergic reactions


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I was at the library listening to a presentation and overheard the woman behind me telling a friend that her daughter had an allergic reaction that day and had been in the emergency room.

I turned around and told her I didn't mean to be creepy and listen in on her conversation, but that my son had also experienced anaphylaxis, and it can be really scary as a parent to watch it.

She said, "Oh, it wasn't anaphylaxis. Her throat was just closing off, she was just having an allergic reaction." I said, "that IS anaphylaxis!!! You know she can have a re-bound effect, right?" (Even after you are treated for anaphylaxis, you can experience a "re-bound" - the symptoms can come back.)

I told the woman that she better check in on her daughter! An hour later, she tapped me on the shoulder and said, my daughter just sent a text and said it feels like her airway is closing off again. I think she saw the look of shock on my face, and I told her she needed to get her daughter to the emergency room - FAST!!

She said that her daughter was older and could drive herself. I told her, "not if she stops breathing!" I knew that death can happen in as little as 30 minutes. That scary fact has always stuck with me.

The National Institutes of Health lists symptoms of anaphylaxis: 
  • Skin—itching, hives, redness, swelling
  • Nose—sneezing, stuffy nose, runny nose
  • Mouth—itching, swelling of the lips or tongue
  • Throat—itching, tightness, difficulty swallowing, swelling of the back of the throat
  • Chest—shortness of breath, cough, wheeze, chest pain, tightness
  • Heart—weak pulse, passing out, shock
  • Gastrointestinal (GI) tract—vomiting, diarrhea, cramps
  • Nervous system—dizziness or fainting 
There are lots of things that can cause anaphylaxis, you need to let your family/friends and co-workers know if you have a food allergy or are allergic to medications or bees.

I would also wear an alert bracelet. There are cute bracelets for kids.  And there are a lot of companies that make allergy alert jewelry for adults too. You can do an internet search and find a LOT of options - bracelets, necklaces, stickers, etc.

Remember, anaphylaxis is a medical emergency! Get help fast!!

 

Monday, October 27, 2014

If your child ends up in the hospital



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I had to go to the hospital last week to meet with a colleague, and as soon as I walked in - there was "that smell." There is a certain scent that I recognize from having my kids hospitalized 14 times. Not a bad scent, just a familiar one! 

My kids were usually admitted to the hospital with pneumonia or from problems breathings smoke from forest fires. For me, having a child admitted to the hospital was actually a relief. There comes a point where I have done everything I can as a parent to try to help them breathe easier. To quote a line from Mall Cop "Backup! Backup!!" 

I need someone who knows more than I do to take over! I am NOT a respiratory therapist or a nurse, so sometimes I need the professionals to take care of my child.

I have all the preventative (or daily controller) medicine at home. When they get sick, I will start giving them Albuterol breathing treatments with the nebulizer. (The nebulizer machine turns the liquid medicine into a mist so it's easier to breathe in.) If you aren't sure how to use a nebulizer, here is a video from NationalChildrens 

If they are still getting worse, Asthma Doc will either give the kids a steroid shot of Decadron or a steroid pill like prednisone. If they have the steroid shot, they MUST have a "burst" - 3 or 5 days of taking the steroid pill and slowly tapering down the dose. It's definitely one of those medicines that you can't stop suddenly. (Steroids will take the swelling down in the lungs so it's easier to breathe, but you have to take them EXACTLY as prescribed or it can cause other problems.)

If they STILL aren't getting better, I head to the emergency room. My kids can get an even stronger steroid IV, plus oxygen, and be connected to breathing monitors. That way, the professionals can monitor their oxygen level around the clock and an alarm will go off if the child's breathing gets worse. Years later, I can still hear the sound of the alarm going off in my head......

I'm not going to lie - it is VERY scary and stressful to have a child in the hospital.

Watch what the nurses do and ask questions. If they have a heart monitor on your child, it's REALLY serious!! From my experience with my son, that means they are really worried that your child might stop breathing  - which will make their heart stop - and then they can die. It's rare - but you may need to know about it just in case...



Talk to your doctor about when to take your child to the emergency room. Here's some information from emedicine's website.  Sometimes kids with asthma can go from bad to worse very quickly, so keep a close eye on their breathing. 
 
Isn't it fun raising a child (or 3 children in my case) with asthma? Sigh....it's all part of My Life as an Asthma Mom!!






Friday, October 24, 2014

Is it asthma or something else?

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This is a LONG blog, but important, so PLEASE read the whole entry!! :)

Having problems with your lungs is annoying, you really take it for granted that you can breathe! And when you can't......well, it's no fun! So how do you know what lung disease you have?

 When daughter Kitty was little, she just didn't seem to be doing well, even with all of the asthma medications she was taking. She had been hospitalized 4 times for asthma, so Asthma Doc wanted to rule out any other lung disease. He ordered a sweat chloride test to check for Cystic Fibrosis.  I have tell you - that was the LONGEST weekend of my life!!! Waiting for test results was so hard, we couldn't eat or sleep.  Luckily, her test was negative. But some people aren't so lucky. 
So what is Cystic Fibrosis?

Here's a quote from the Cystic Fibrosis foundation:

"In people with CF, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
  • Clogs the lungs and leads to life-threatening lung infections.
  • Obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients."
 Another possibility is Vocal Cord Dysfunction (VCD.) Son #2 was hospitalized 8 times (2 in ICU) and also didn't respond like he should have to asthma medications. Asthma Doc sent us to the hospital to test for VCD. VCD happens when the vocal cords don't open correctly. It can be confused with asthma because the symptoms can look the same. 

"In asthma, the airways (bronchial tubes) tighten, making breathing difficult. With VCD, the vocal cord muscles tighten, which also makes breathing difficult." 
  You can read more about VCD by clicking on the link from AAAAI above.

Another lung disease is Mesothelioma - it's actually cancer of the membrane that line the lungs and stomach. It's caused by exposure to asbestos. Asbestos was commonly used in all sorts of building materials for homes and businesses. I was contacted by Heather Von St. James, who was diagnosed with Mesothelioma shortly after her baby girl was born. Here's Heather's video about her journey. I'm helping her spread awareness about Mesothelioma!!

Last on the list is radon induced lung cancer. If you have heard of someone who has NEVER smoked, but developed lung cancer, radon might be to blame. The EPA radon site says:

"Exposure to Radon Causes Lung Cancer In Non-smokers and Smokers Alike"

What is radon? The EPA says:
"Radon is an odorless, tasteless and invisible gas produced by the decay of naturally occurring uranium in soil and water. Radon is a form of ionizing radiation and a proven carcinogen. Lung cancer is the only known effect on human health from exposure to radon in air."
 Some people confuse radon with carbon monoxide, but they are VERY different gases. So, how do you know if you have radon in your home? You can buy an inexpensive test kit (around $10) to test your home. You can check the EPA site to find the radon coordinator for your state to find help.

 So, lots of lung diseases to consider - Asthma, Cystic Fibrosis, Vocal Cord Dysfunction, Mesothelioma and Radon. If you have concerns about any symptoms and your lung health is not improving, talk to your doctor. They are MUCH smarter than I am and can run tests and rule out other causes. 

Stay healthy!!! :)


















Tuesday, October 21, 2014

Asthma and depression?

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American Lung Association has an email list where you can get updates about lung cancer, asthma, COPD, etc. Their latest "top story" (October 7, 2014) is about a link between depression and asthma.

They say that if you have any of the lung diseases listed above, it's not unusual to feel anxious, stressed, or even depressed.  They also say that 1/3 of people with chronic diseases may feel depressed. Here's a quote from the website:

"Sometimes you might notice you don’t feel like yourself but you are aren’t sure exactly what is bothering you. Undiagnosed depression can make it more difficult to manage your disease and has a large impact on your quality of life."

You can click here to find someone in your state that offers depression screenings. Of course talk to your doctor if you feel a "little off" or don't feel like yourself! :)

Most states (and also many foreign countries!) teach a 6 week workshop that helps you cope with having a chronic condition. The workshop was developed at Stanford University in California and is called Chronic Disease Self Management.  The class meets once a week for 6 weeks, and the instructors of the class MUST have a chronic condition (or a family member with a chronic condition) to be able to teach the class. That way, they "get it" - they understand what it's like to live with a chronic condition. They teach you to have the best quality of life you can! I felt so much better after I took the workshop! 

Subjects covered include: 
1) techniques to deal with problems such as frustration, fatigue, pain and isolation
 2) appropriate exercise for maintaining and improving strength, flexibility, and endurance
 3) appropriate use of medications
 4) communicating effectively with family, friends, and health professionals
 5) nutrition
 6) decision making
 7) how to evaluate new treatments


When I took the class, the book and CD were free, but you can also order a copy online if you wish.  

These workshops are taught ALL OVER THE WORDL!! If  you want to see if the free or low cost workshop is taught in your state or country, click here.

Help is out there, hopefully these ideas will be useful if you feel like you need help. :)

Thursday, October 16, 2014

Worrying about your job increases risk of developing asthma?

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I'm a little bit of a nerd, because I love research studies. I am always looking for new studies or articles about asthma. 

The latest study I read was from WebMD. The story was originally published in Healthday News. A study done in Europe showed that the worry of losing your job could increase your risk for developing asthma.

Hmmm.

The study interviewed 7,000 people in Germany in 2009-2011 and asked the employees questions "about the respiratory disorder and also on whether they thought they would lose their job within two years." During that time, there were 100 people that were diagnosed with asthma.

Here's a quote from the article:

The researchers noted that for every 25 percent jump in job-related stress, the risk for asthma also increased by 24 percent. The risk for asthma surged to 60 percent among those who thought it was highly likely they would lose their job.
The study did say that worrying about your job doesn't CAUSE asthma, but it can be a risk factor that can put you at increased risk for developing asthma. I guess they can't technically say that worrying can causes asthma, but it makes it more likely that you can develop asthma.

What to do about stress at work? Mayo Clinic has good information about dealing with stress. You can search for 'stress management' on your computer and come up with thousands of websites that offer ideas. 

Do a little research and find what it best for you. Some people use deep breathing exercise, and others use yoga. I wish I lived closer to a beach, because the sound of the waves really relax me.

I should book that trip to Hawaii now......

Monday, October 13, 2014

Teal pumpkins for Halloween? What?





Halloween can be a scary time of year - not because of scary costumes and spook alleys, but because I have a son with a tree nut allergy! There are a LOT of different kinds of candy out there with tree nuts. Every year at Halloween, I would have to carefully go through Son #2's candy and make sure his candy was safe for him to eat. (Mom bonus: if there WAS a candy bar that had tree nuts, I would have to "take it for safe keeping"........ya - I would eat it!)

The Food Allergy Research and Education website  (FARE) has a fun idea to help families of kids with food allergies. They are asking families to place teal colored pumpkins on their porch (and the sign pictured above) and hand out non-candy treats instead.

You can paint a real or plastic pumpkin teal, then print out the sign  to hang on the front door. You can also print out fliers to help spread the word.  

There are a lot of things you can hand out instead of candy, FARE suggests:


  • vampire teeth
  • spider rings
  • Halloween stickers
  • mini slinkies
  • mini bottles of bubbles
  • bouncy balls
  • glow bracelets
You can find lots of fun (and cheap) toys at your local party store or craft store. There are a few places online where you can order supplies too.

What a fun idea! :) Finally - a way to make Halloween safe for kids with food allergies!



Friday, October 10, 2014

Problems with Xolair


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I just read a story on Webmd (dated September 29th, 2014) about potential problems with omalizumab (Xolair). The makers of Xolair were conducting a safety test, and their study showed a "slightly increased but serious" risk for heart attack and mini-stroke (called TIA's or transient ischemic attacks.)

Uh oh!!

 Xolair is used for patients whose allergic asthma can't be controlled by using other asthma medications. Some doctors also use Xolair to treat chronic hives.

Son #2 has had Xolair injections for the last 7 years. He is one of the small percentage of people with asthma who has severe asthma.  Son #2 has been hospitalized 8 times, and two of those hospitalizations were ICU admissions. We did EVERYTHING the doctor would outline -what medications to take/when/how much - but he would still end up in the hospital. He would suddenly go from bad to worse.

I remember one time when Son #2 suddenly became worse in the Emergency Room - it even scared the doctor! He said, "I was right here, what happened??!!" I told him Son #2 has severe asthma and doesn't respond to asthma medication and treatments like most asthma patients. Patients with severe asthma are VERY difficult to treat.

For us, Xolair has kept our son out of the hospital. Shortly after starting Xolair injections, I noticed that when he would start to get sick, instead of thinking "Oh no! Here we go again!!", I could give him a breathing treatment - and he would actually get better!! Before he started Xolair, it didn't matter what we would do - nothing would seem to help. He would have to be hospitalized and monitored around the clock by a respiratory therapist, doctor and nurse. They would give him breathing treatments every 2-4 hours, give him an IV with powerful steroids, and monitor his breathing.

All that seemed to change once he started Xolair. BUT - every family is different. Son #2 has been slowly weaned off the Xolair injections over the last year. He seems to be doing well and his asthma doesn't seem as severe as it has been in the past.

I am VERY concerned about anything that can raise your risk of heart attack and mini stroke. 

This quote from WebMd article did catch me eye:

Because of certain "weaknesses" in the 5-year study, the FDA says it is "unable to definitively confirm or determine the exact increased level of these risks with Xolair." 

I wonder if the study was done correctly? Back in college, I took an epidemiology class, and we learned how to design a scientific study. It has to be done a certain way, or the results will be invalid. It makes me wonder what "weaknesses" they found in the study. I wonder if they will now have to repeat the study? 
 
I also noticed this quote from Webmd:

The safety study did not find that people taking omalizumab had a higher rate of death from ischemic stroke or heart disease compared to people not taking it, though. 

Hmm..... so maybe patients are having heart problems and mini strokes but recovering? The FDA report lists heart attacks and other heart problems too. It's worth taking the time to read.  It may be rare that these problems happen, but it's good to know what to watch for. 

Until then, if you are on Xolair, talk to your doctor about the risks. The FDA is adding the warning about heart problems and mini stroke to the Xolair label. In the past, the label has also had a warning about anaphylaxis and an increase in cancer.

As with any medication, it's important to weight the benefits with the risks. If you or your child is having Xolair injections, ask your doctor what they would recommend.