Raising Awareness-Eosinophilic disorders

This week, May 19th-25th, 2013 is National Eosinophil Awareness Week!  If you have followed my blog for a while, then you already know something about eosinophils.  If you are a new reader, you can learn a little about Eosinophilic Gastrointestinal Disorders (or EGID), specifically Eosinophilic Esophagitis (or EoE), by reading through some of my earlier posts about our journey with 2 of our daughters and their struggles with EoE, starting with this one.

Eosinophils (E-o-'si-n-o-"fils) are a specific type of white blood cell generally associated with allergies, parasites and cancer. Eosinophil Associated Disorders are a group of uncommon (rare) chronic illnesses. While they are still considered rare, these disorders are rapidly
emerging as a healthcare problem worldwide. Yet, many patients suffering from these disorders go
undiagnosed for years due to a lack of information or awareness of these diseases.

In eosinophilic disorders, a high numbers of eosinophils accumulate in body tissues causing inflammation and damage.  These disorders are classified by body tissue where eosinophils accumulate. For example, in eosinophilic esophagitis the eosinophils attack the esophagus.
The only way currently that these disorders can be diagnosed and monitored is by tissue biopsies. What this means is that in order to be diagnosed, my daughters had to go into the operating room and have upper endoscopies and colonoscopies during which multiple biopsies were taken of the tissue throughout the digestive system.  Cassidy, pictured here, has been scoped and biopsied at least 10 times (after a while you actually start to lose track) and Chloe, who was only diagnosed a little over a year ago, has been scoped 5 times and hospitalized twice already. In both cases, during the first set of scopes, large numbers of eosinophils were found in the esophagus tissue samples when the biopsies were sent to the lab.  The only way to monitor the progress of the disease or the effectiveness of treatments is to repeatedly go back into the O.R. and have more biopsies taken. This will go on to some extent probably for the rest of their lives.

 Eosinophilic Gastrointestinal Disorders render the patient unable to tolerate food proteins. Eating food causes damage to the GI tract, pain, and symptoms similar to those you would experience from a
stomach virus. Sometimes the pain is bad enough each and every time they swallow that they just stop eating all together. Yes, really. It gets that bad. Depending on the number of foods that trigger the eosinophilic reaction, some who live with EGID need to stop eating ALL foods just to control the damage and inflammation. In these cases, the patient is given a special amino acid formula through a feeding tube. Chloe was dependent on a feeding tube for 2 months last summer, and truthfully we felt lucky that she was able to stop using it after such a "short" time. Eosinophilic esophagitis can also be triggered by environmental allergens, causing flares that can only be controlled with the extended use of steroids.

All of these are chronic diseases requiring long term treatment, with no known cure.  They are also not something that people who suffer from them will "outgrow".
Sometimes the symptoms can be well controlled with dietary changes, sometimes they require steroids, but the disorders are now believed to be relapsing and remitting, which means that you can have some success with treatment but could then have flares or relapses. During relapses and flares, these are debilitating diseases leading to missed work, school, social outings, etc.

Also, delays in diagnosis are common. Symptoms vary from person to person and can mimic other, less serious diseases. Even now with prevalence of the diseases on the rise, many doctors and nurses have not even heard of these diseases.





Symptoms of EGID can vary depending on the part of the GI
tract affected, and may include:

• Reflux that does not respond to usual therapy
• Dysphasia (difficulty swallowing)
• Food impactions (food gets stuck in the esophagus)
• Nausea and Vomiting
• Diarrhea
• Failure to thrive (poor growth, malnutrition, or weight loss)
• Abdominal or chest pain
• Gastroparesis (delayed emptying of the stomach)
• Poor appetite
• Bloating
• Anemia


If you would like more information about eosinophilic disorders or would like to make a donation to help support research, please visit the American Partnership for Eosinophilic Disorders at www.apfed.org or the C.U.R.E.D. Foundation at www.curedfoundation.org

If you think that you or someone you love may have an eosinophilic disorder, see a doctor!

If you have been recently diagnosed, please find a support group or seek out the online EOS community. Knowing that you are not in it alone can really make a huge difference, especially on the roughest days. You can learn about some of our own experiences with EoE in some older posts and in other blogs around the internet. Most all of us are willing to discuss our experiences.

I welcome comments and messages from anyone with anyone from the EOS community or anyone at all with questions. 

Waste Free Wednesdays - Coffee Cups To Go

Photo by Chandru Ramkumar

Never thought too much about stopping for coffee while running errands?  I understand, I do the same thing.  As far as reducing waste, the problem doesn't rest with the coffee, but with the paper cup that it comes in.  Did you know that Americans alone use 16 BILLION paper coffee cups each year?  Yes, seriously. That is more than 6.5 million trees each year. Not only does that create 253 million pounds of solid waste yearly, but before those cups become waste it takes 4 billion gallons of water - enough to fill 6000 olympic size swimming pools - just to make those cups in the first place. And because they are coated with a plastic resin called polyethylene to prevent leaks, the cups cannot be recycled. Before you calmly explain that you are responsible for just one or two cups a week, remember that no one person is using 16 billion cups a year.  Like almost everything else with major impact, both positive and negative, it is a group effort.

How hard is it to just toss an empty travel mug into your car or bag?  Trust me, I've done it.  It's pretty darn easy.  And some coffee shops and vendors will even knock a little off your tab for providing your own cup. Win-win situation if you ask me. I keep a clean plastic one in my car in case I forget my favorite one on the way out the door in the morning, but I rarely have to use it simply because now I have gotten into the habit of bringing a mug when I leave the house.

Well, it's my version of a mug anyway.  I drink out of a simple mason jar.  While this is quite a trend right now in party planning and even at rustic weddings, it is also another very basic and reasonable use for one of the most reliable and useful products on my house.  I love mason jars.  They are durable, free from weird chemicals, non porous, easy to clean and in the event that one breaks the pieces are recyclable. I use them for canning, of course, but also for dry food storage, with a soap pump added to the lid for dish detergent in the kitchen, for starting fresh sprouts on the kitchen counter, for making homemade yogurt and yes, even as a coffee (or bloody mary) cup.

I do prefer it when my cup has a lid.  With 4 kids and a large dog it's only a matter of time until someone bumps my arm and sends hot coffee sloshing all over tender skin or a carefully mixed cocktail splashing into the keyboard of my new laptop (true story there, folks!)  Pinterest is full of ways to craft your own straw top from the original 2 piece canning lid or punch a hole for the straw in a cute cupcake paper for color coordinated party ware.  More power to you, crafty ladies out there!  But for my daily cup of joe, I ordered myself a nifty reusable sip top made just for mason jars (wide mouth or regular, sip top or straw top) from Cuppow.  It's BPA free and dishwasher safe.

Hot coffee in a glass jar does make it a bit tricky to grab, but I just crocheted a sleeve out of cotton for mine.  If you aren't too keen on the yarn and hook idea, just grab a sock that has lost a mate and cut the foot off of it.  The remaining cuff? Instant mason jar sleeve.  Added bonus to the sleeve is that it not only protects your hands from hot beverages, but it also prevents a condensation mess when you are enjoying an iced drink.

Now look at how green you are!  Saving the planet, one coffee cup at a time!

Peaks and Valleys

Peaks and valleys.  Ups and downs. For most of us, for better or worse, life has a series of peaks and valleys. A rhythm of struggles and triumphs that we learn to cope with or embrace. Moments that we learn to accept and others that we rejoice in and celebrate. It has been 4 months since my last post, and at that point I gave a basic recap of Chloe's situation from her diagnosis with EoE through some serious valleys and back to what seemed like a return to a little bit of a peak.  I haven't sat down to continue the updates since then not because I haven't had news or projects or recipes to offer, but because as much as I have needed to write I haven't been able to squeeze a single spare second of time out to do so.  I have 3 drafts started with patterns and tutorials and 2 with new recipes, but looming larger than any of those is Chloe.  She is getting really sick. Again.  And this time I really have no idea what we will find.

I know that many EOS kids have a tougher time fighting off routine illness and can require a little extra time to bounce back.  And Chloe has had her share of that recently.  But she has also had another extended episode of being generally unwell.  This is at least the 3rd significant episode of this kind that we have seen with her, and each seems to be worse than the last.  She was ill this way shortly before her hospitalization this summer, and it is likely a large part of what landed her in the hospital that time. People develop fungal infections all the time.  They don't spend a week hospitalized and 2 months on a feeding tube as a result.  It stands to reason that for her, that infection was the straw that broke the camel's back.  She crashed so hard because she was so depleted before the infection started.  We thought at the time that this was due to the struggle to control the eosinophilic disease, and that prior episodes of the same malaise were due to the same thing, which had not yet been diagnosed when we first saw her this way.  This time around she is worse off than before and while she has had a small EoE setback, it cannot explain whatever is going on right now.

As of Thanksgiving, Chloe was still having pain with swallowing and she was starting to get generally cranky again.  She had another set of biopsies done and an overnight test for reflux.  The biopsies were clear which was good since she has been on an altered diet as well as the steroid.  The reflux test, called an impedance probe, showed us clearly that she needs an adult dose of PPIs.  So we made that change to her medication and took her off of the erythromycin (for the gastric delay) and antihistamine (also an appetite stimulant if you recall) since she is maintaining her weight, and one was causing tummy aches which she doesn't need any help with while the other wasn't really effecting her appetite.  Fast forward a few weeks to January 1st, and she reported that she could swallow without pain!  She was starting to look pale and her temper wasn't the best, but finally no throat, chest and stomach pain!  3 weeks later, we stopped the steroid to see if the diet changes were enough.  They weren't. The throat and chest pain returned, so she is back on the steroid again for now. This I can live with.  She also managed to have a the flu not once but twice AND strep throat twice, all in the last couple of months.  This I can also live with. However, through all of these ups and down in November, December, January and February she has remained generally short tempered and very fatigued.  Her headaches, both migraine and regular, have gradually increased to the point of being a daily problem. On good days, Chloe can stay awake until 5pm before she crashes for the night.  On bad days, she takes as many as 3 naps and goes to bed at 6:30.  Some days she gets up and plays, even runs around in the yard for a little while, and other days she never gets off the couch except to use the bathroom.  The most recent symptom is a gradual development of and increase in joint pain.  First her legs hurt.  She came down with the flu which of course can make you achy, however she could barely walk some days and was asking to be carried to the bathroom.  Perhaps the flu achiness combined with her other joint pain was too much together.  Then the flu was gone and she still complained of pain in her knees and hips.  Now she also has pain in her elbows and one shoulder.  When the doctor asked how she was feeling she just said "Everything hurts."  Usually she gets around fine, but if extended walking is necessary, across a parking lot for example, she can't make it without being carried part of the way.  Every now and then she has a day when she seems a little clumsy because her knees are so sore. Those days are usually the ones that also require multiple naps. In addition she has been running a low grade temp, right around 100, off and on the entire 4 months, specifically at times when she had no other reason to be febrile.

Since all of this has been consistent before, during and after all of her routine viral illnesses, and since we can recognize it as something that we have seen before, we took a trip to the pediatricians office.  Chloe cooperated by falling asleep in the exam room and looking excessively pale, as well as having a low grade fever and reporting the body and joint pain.  He agreed that it is all cause for concern and got started by ordering blood work.  Now the results are rolling in and I am hoping to hear from him today as far as what he thinks it all means, and if he has a simple explanation for it or if he needs more testing done or to refer her to a specialist of some kind.

Until then, we will all be keeping our fingers crossed that it is nothing too serious, and I will be working on ironing the kinks out of those tutorials, patterns and recipes.  Family, friends, members of the EOS community and other readers alike, I always welcome your questions and comments!