Friday, May 18, 2012

Special Needs Spotlight: Cole




 
My name is Missy Hawkins and my husband, Paul, and I have four kids, Telise (8), Paityn (6), Cole (4), and Lincoln (10 months).  Cole is a lively 4-year-old boy who loves sports, cars, and throwing rocks.  He looks completely normal on the outside, but he has a chronic auto-immune disorder known as Eosinophilic Esophagitis/Gastroenteritis.  He cannot eat food.  His body treats food as if it were a foreign invader and attacks the stomach, esophagus and duodenum.   The eosinophils or white blood cells that attack these parts of his body cause abdominal pain, constipation, diarrhea, vomiting, weight loss, and internal damage (to the point that he can't swallow food anymore, or the lining has sores).   Cole was diagnosed at 6 months old when he was failure to thrive and he receives his nutrition in an amino-acid based formula that is very expensive.  Since the formula isn't very appetizing (it tastes like feet!--we've tried it) and Cole doesn't always care if he eats, he doesn't eat enough of it by mouth....so his formula can be put directly into his stomach.  He had a N/G tube (tube that goes down his nose into his stomach) when he was a baby/toddler and now he has a G-tube(a tube that protrudes from his abdomen which goes directly to his stomach).  He calls his G-tube button his Ironman button.

Some kids with his disease have hundreds of foods they can eat and some have none; each of them may have a different experience with this disorder.  After four years of food trials Cole has 4 "safe" foods he can eat - apples, pears, oats and potatoes.  Because his disease is new and not that common, (although it is becoming more and more common) the doctors are trying to figure out what the best treatment plans are.  It can be a struggle to find the best medical help for him.  He deals with it exceptionally well and in most ways is a normal rambunctious four-year-old boy!

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Miggy:  Can you take me back to the day Cole was diagnosed?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?   

Missy:  The day he was diagnosed, we felt overwhelmed, like a huge weight had been dropped on us.  Our first thoughts were about how harshly this would change Cole's life.  What do you do if you can't have food?  How do you STOP a kid from eating food?  You can't watch him 24/7.  So many of our social interactions revolve around food.  What about birthday parties, holidays, dates, or his wedding cake?  Your mind jumps to all the negative aspects of your new reality.  What does he do while we eat breakfast, lunch, or dinner?  How am I supposed to be able to take care of him? 

Now?  It's amazing how time and repetition make everything seem normal.  We feel as if this just our life.  It's not overwhelming or daunting or saddening.  We live a normal life, we try to make it as normal as possible.   We have been lucky in many ways and Cole seems able to deal with this (so far, he's only 4).  We wish he had more foods and sometimes we get frustrated since we feel like the doctors don't always know what to do, and we are learning along with them.  His condition is very much an "O.k., let's try that.  Why not?" kind of treatment plan, which can be hard to get used to because it's not what you expect from doctors/medicine.  We don't want the disease to be all that defines him.  He is so much more than his disease.  But day-to-day, we don't dwell on it, we just plug along!


Miggy:  Help us understand how this disease is different from having food allergies?  (Or is it different?)  Will Cole ever outgrow this disease?   

Missy:  Eosinophilic Esophagitis/Gastroenteritis has close ties with allergies, and many of the kids who have it also have allergies.  Since allergies are basically the body treating the allergen like it is an invader and attacking it, it is very similar to his illness.  The bodies of kids with Eosinophilic Esophagitis attack the GI tract.  It is almost as if he is allergic to all food.  Some of his symptoms are typical allergic reactions, wheezing, rashes, vomiting, anaphylaxis, etc.   Unlike some children's allergies, this is not something he can outgrow.  Cole will most likely have this condition his entire life.  The goal is to find enough foods for him to eat a normal diet.  We are hopeful that someday he will have a few proteins, vegetables, fruits and grains to maintain his diet without having to drink the elemental formula.  Some kids who have the disease go into remission.  Remission would be amazing, but our doctors tell us that Cole is a pretty severe case and so right now we just hope to just have some more "safe" foods.



Miggy:  Explain how your Cole's specific special needs affects your day-to-day life?   

Missy:  He is fed through the tube, which can take some time and can be messy(especially when he tries to help).  We have to replace his tube at home ourselves every couple of months.  He also picks at the skin around the tube, so it is painful for him.  Because Cole receives a lot of his nutrition through his G-tube, the tube is a prominent part of him.  Fear of ripping out his feeding tube restricts some of his movements.  He won't slide on his stomach, or down couches and even roll in the grass without protecting his stomach.  As you can imagine, this is hard for a rumblin', tumblin' 4 year old!

We have to make Cole separate food and be careful that his food doesn't come into contact with any other food.  We have to be very careful about cross-contamination.  I sometimes feel like I live on the set of Chopped, the TV show on Food Network where they are given ingredients that don't go together and they have to make something great with them.  I have four ingredients and have to find a way to make him cookies, pancakes, fruit leather, hash browns, fries, apple crisp and anything else that I can think of.   I can cook with pears, oats, apples, potatoes, oils, salt and sugar--and that's it!.  Anytime he goes anywhere, we have to bring food along for him, except for In'N'Out French fries!
He is on steroids that he must swallow, along with other medications.   Some days he has constipation or vomiting or just feels sick, so we lay low those days.  He has become a champion puker, he always hits the bowl.  He can't use normal toothpaste, soaps, or normal medicines (no children's flavored medicines!).  Many times they have food proteins in them.   He also has severe eczema and so we have to lotion his whole body regularly.

When he is in a food trial, it can be a challenge to get him to try a new food.  He isn't used to flavors or textures.  If he fails the food (meaning there are too many eosinophils), he looses that food.  Getting him to like/eat the food, go through the scope, and then taking away the food if he fails can be a little heart wrenching.  Cole understands really well that he can't eat most foods, but that easy acceptance can also amplify his disappointment when a food he's been eating for a few weeks (and in his mind is o.k. to eat) is suddenly taken away from him.   At the end of the day, he's still a 4 year old trying to understand why EVERYONE else can eat something and he can't.  It can be hard for him.   Sometimes our whole family will avoid a failed food for a while until he handles the loss of that food better.   He is usually optimistic, and sometimes it pulls on my heart-strings when he says, "Someday I'll be able to eat that."  Many kids with EoE spend a lot of time at doctor appointments, feeding therapy, and trips to the hospital.  It can be a physical, financial and emotional drain.

Cole is usually really good about not "cheating" and eating something that he is not supposed to.  Unfortunately, this has come through a few bad experiences.  We once left him alone in a car with a hotdog for a little too long.  He ate a bite of the hot dog bun and was wheezing and throwing up for days.  Since then he hasn't eaten anything he wasn't supposed to.

Many kids with EoE have sleepless nights from pain.  Cole just sits there at night.  Sometimes I'll walk into his room and he is just sitting there.   Because of this he is tired a lot and takes naps when he can get them.

For Holidays (Halloween, Easter, Valentines Day), Cole will exchange the treats he gets for a toy that he really wants.  He seems excited to give the treats to me and to have a new toy.  We try to make traditions that revolve around activities and not around food, so that he can play a part in family traditions.

                                                                                                          
Miggy:  What are the biggest worries you face for your Cole?     

Missy:  Strangely, our biggest fears regarding Cole don't center around food.  We know that he will receive the necessary nutrition to stay healthy (either by formula or hopefully someday solely by food!).  Our strongest concerns center around his social and emotional well-being.  We often worry that Cole will grow to be angry, resentful or depressed.   Being different can be hard!  Especially as he gets older.  We hope and pray that he has many foods someday....but even if he were to only have 5 foods, we want him to cheerfully adapt and be happy.  We feel like we need to be the examples of how to do that.  If we as his parents cannot find a way to be happy and at peace with the things we can't control, how can he?  I'm sure there will be periods when he is angry and unhappy, but overall we want to help him develop the coping mechanisms he'll need to happily navigate this world that revolves around food.  Whenever it gets hard or we start to get frustrated, we try to remind ourselves that we need to cheerfully adapt, we really hope he can do the same.



Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?   

Missy:  "Do you want some ice in your water soup?"  For the first two years of Cole's life he didn't have any foods to eat, so he ate "water soup" for dinner every night (water and ice in a bowl).  I think many people at restaurants and parties were very confused when we fed our kid "water soup".

Many times when we see Cole chewing on something and don't know what it is, our hearts skip a beat and we have this conversation:
Me: "What's he eating?!"
My husband: "Don't worry, it's just a rock (or plastic or grass or dirt, etc.)"
Me: "Oh good...as long as it's not food."

The other night while we had guests at dinner I said to my 8 yr old, "If that salt touches your food, you will permanently lose your condiment privileges!"  The guests laughed and were surprised that at our house to use condiments is a privilege.  It is a privilege and we need to be careful about keeping the salt that Cole can eat from touching other foods.   


Miggy:  How can people best approach or respond to your child?  Is there something you wish other people knew so as to avoid awkward or hurtful situations?   

Missy:  I would say, just ask!  For a while Cole had an N/G tube that went through his nose to his stomach.  One day at the movies this little girl was staring and had questions for her mom.  I heard her say, "let's ask them." She came over and asked about it; it was not only a great opportunity for her daughter to learn how to deal with her curiosity, but for Cole to learn about being brave enough to answer the questions.

Another time, some elementary kids where calling Cole gross because he had the tube in his nose and one little girl with them came over to him, gave him a high five and said hello.  To this day, I wish I had gotten her name and told her mom how impressed I was at how she handled herself with someone who looked different.  I guess we can all do more to teach our kids to be loving and accepting to those around us. 

Also, don't be offended if you go out of your way to help someone and it isn't exactly the help they need.   Be aware that sometimes the thought IS what counts.  I have had wonderful people try to buy special snacks or treats for Cole.  They are trying so hard to be accommodating and I always feel a little embarrassed to tell them that Cole cannot have what they have bought him (it takes a while to get good at reading all the ingredients in everything and to understand what the ingredients mean).  My heart is always touched by those who put forth the effort to go out of their way and bring something for our little man.  I hope they realize that and aren't hurt when they find out he can't have it.



Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?     

Missy:  We can do hard things and we can smile while we do them.  Our capacity to deal with whatever trial/affliction/disease we are faced with is constantly evolving.  Things that we were afraid of or things that we thought we could never do (like replacing a tube into his body) can become commonplace and easy.   People always tell me how they don't know how we do it, and I think, it's really no different than your life.  Everyone has things that they have to deal with and they can do it.  I do feel like our Creator hasn't left us alone, He has given us the tools we need and will help us through anything we are facing.  We can be uplifted and our burden made light, no matter what that burden is.  We are truly blessed in so many ways.   So, I guess our faith has been strengthened and has helped us.

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I want to thank Missy for sharing her lovely family and especially her wonderful son Cole with us.  I have to say sometimes when I receive emails I'm completely surprised at some of the various diseases/conditions in the world.  I never would have thought that there are people who can't eat food--or at least very little of it!  I'm grateful to Missy for opening my eyes and educating me on this rare condition.  Additionally, I really agree with her idea that you need to model for your children how to be happy and at peace with the things in life we can't control.  Oh I get this, I really get this.  A blessing and a curse I tell ya.  Thanks again Missy!

As always if you or anyone you know would like to be featured in my special needs spotlight please email me at thislittlemiggy at gmail dot com.  

Have a great weekend!


8 comments:

  1. Just wanted to say again that I love these spotlights. There are so many amazing people in the world.

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  2. Did you know that it's Eosinophil Awareness Week? My 2 year old nephew has eosinophilic gastroenteritis. This post made me cry thinking about him. My sister-in-law has been teaching us lots about eosinophilic disorders (http://thepursers.blogspot.com/2012/05/its-national-eosinophil-awareness-week.html), but I learned several new things from this post. Thanks Missy for your positive outlook!

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  3. My daughter has EE as well and I am always interested in hearing other people's experiences. Thanks for sharing!

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  4. Anonymous12:37 PM

    We are so proud of you guys and the grace with which you live your lives. You are a great blessing and example to our family! Love, julie

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  5. Anonymous3:58 PM

    Thank you so much for your great posts! I teach in schools and my eyes have been open to how parents cope with things. I am an adult that was recently diagnosed with EE! Mine is a minor case and when I avoid some foods I am ok. My family does not understand though and I realize I need to do a better job making them understand what is going on!!Jen in NC

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  6. "If we as his parents cannot find a way to be happy and at peace with the things we can't control, how can he?" - I needed to hear that!

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  7. Anonymous11:02 PM

    Missy, I am amazed by all you do. You are truly a woman of faith courage and inspiration. Thank you.
    Mel B

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  8. My 1 year old was recently diagnosed with EE as well. We have been dealing with medical bills, allergists, feeding therapists, and overall craziness. Because he is only allergic to 5 major foods, the doctor's are optimistic that he may outgrow his food allergies rendering the EE dormant. Reading Missy's story makes me grateful for my son's situation, and gives me perspective to help me cope with the difficulties of feeding a traumatized, picky, allergic toddler. Thanks so much!

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