Inhaled Corticosteroids Linked to Diabetes Risks - What About Our EE Kids?

There are few treatment options for our EE children.  They can either be treated through diet, inhaled or swallowed corticosteroids, or both.  In some cases, these inhaled steroids are the only thing that keeps our children in remission.  They have tried food elimination or elemental diets, but have failed until the inhaled steroids that our children swallow were added to the mix.  Although it doesn't cure them, it may allow them to start trialing foods, or eating foods they were unable to before.  Even though we know there may be side effects, they were not supposed to be as harmful as systemic steroids.  The lesser of two evils, and we want our children to feel better and heal.

So when I stumbled across the article Inhalers Linked to Higher Odds of Diabetes in Asthma, COPD Patients I was less than enthused.  It has long been known that oral systemic corticosteroids such as prednisone can cause diabetes, but this is the first time there has been a link to inhaled steroids, said Samy Suissa, director of the Centre for Clinical Epidemiology at the Lady Davis Institute for Medical Research of the Jewish General Hospital. 


In a study of nearly 400,000 people in Quebec, the researchers found that inhaler use was associated with a 34% increase of new diabetes diagnosis and diabetes progression.  The study observed that 30,000 of their patients developed diabetes over 5 and 1/2 years of treatment, and patients that already had diabetes experienced a worsening of their disease. Samy Suissa reports their findings in the most recent issue of the American Journal of Preventive Medicine.  Based on their results, researchers from McGill University and the Lady Davis Research Institute at Jewish General Hospital in Montreal suggest patients should only be treated when there is a clear benefit.  What other choice do our children have?  Does the risk outweigh the benefit?  It seems that we are running the risk of adding just another diagnosis to our already multiple diagnosed children.  But again, I ask, what are the options?

At least in the report Dr. Weiss, who is also a clinical assistant professor at the NYU School of Medicine in New York City suggests that the concern should also be directed at the person's lifestyle, eating habits and other underlying causes of diabetes.  He concedes,  "Yes, we do know that steroids increase insulin resistance and that people treated with steroids require more aggressive diabetes management.  But if we don't generally take an approach that deals with the poor quality of food that people are routinely consuming, the incidence of both these diseases will continue to go up at a dramatic rate."

Does that make me feel better?  Not so sure.  My wish, as I'm sure is yours, is for one of these doctors/scientists to come up with a cure for our children so they don't have to take all this medication everyday, and they would enjoy a life WITH food and WITHOUT pain.

Food Trials

This has proven to be a complicated process, just as I know it is for most families with EE.  Andrew failed his trial with bison based on symptoms.  He was having stomach pain, chest pain and increased regurgitation.  The GI took him off the bison and had him back on elemental only for about a week before he was able to trial his next food.  He noticed a difference in the way he felt almost immediately.  We knew we were taking a chance with bison.  On the food introduction list that we are following, most meats are in the "C" list category, where as "A" and "B" list foods are less allergenic.  However, months ago, Andrew had been told he could eat a meat first, so the doctors wanted to grant him his wish, and he started with one of the least allergenic meats.

After he failed bison, he chose to start over again with sweet potato, a vegetable on the "A" list.  He has truly enjoyed eating sweet potatoes, a food that he did not like before the elemental diet.  It's amazing what 9 months on EOSplash will do for the taste buds.  I mash them with a little of the water I boil them with and slice them very thin and bake them in the oven.  He has also had a baked sweet potato.  He never complains and will eat them any way they are fixed, but prefers the "french fries" best.

Believe it or not, we had 2 weeks symptom free so we began peaches.  I'm not completely sure how they are going.  He says that he is fine, but I know that his stomach bothers at times.   It is hard to say if it is an "EE" hurt or just from the constant constipation.  We just keep trucking along and hoping for the best. 

Our doctor recommends scoping after 5 foods,  which would be 10 weeks.  We are hoping to get a scope done over Christmas Vacation.  I never like to get my hopes up.  There have been so many times he has been symptom free, but has had 75 or more eos per hpf....even on the elemental only diet.  But wouldn't it be a wonderful Christmas present if he was able to eat 5 foods safely and scoped clear for Christmas!!

***I feel as though I need to apologize for not posting in such a long time.  I accepted a 2 week substitute position at my children's school (that was 6 weeks ago), and there is no end in sight.  Between that and my children I have been extremely busy and seem to have neglected my blog.  Although I never had any intentions of accepting long term substitute positions, I am completely enjoying teaching again....it has reminded me why I went into the profession so many years ago.  

Eosinophilic Esophagitis is in Remission (FINALLY) on Elemental Diet and Flovent - Now Bring on Food Trials!

Finally...Andrew is in remission!  The scope he had on Thursday September, 29 confirmed it.   The elemental diet of EO28 Splash plus swallowed flovent has done the trick.  It's taken a while to figure out the right combinitation, but thankfully we have. 

Andrew had been anticipating this scope for quite a while.  He knew that if it was clear he would be able to begin food trials.  As we waited for his procedure to begin he chatted with the nurse about normal 8 year old boy stuff, as at ease as if he was talking to a friend's mom.  It still amazes me how unconcerned and comfortable he is while he is at the hospital.  I, on the other hand, feel sick to my stomach each time he has a scheduled procedure.  Then the conversation turned to food and what food he wants to be able to eat if he has a clear scope - a reminder of the reason we were there, although to Andrew it was still a matter of fact conversation.  Although I am glad that he does not get nervous or upset about going to the hospital, there is still something unsettling about knowing that your child has had so many procedures that he is actually comfortable, at ease, and the staff knows him by name.

After the prep time was over and I signed all the papers, basically signing my baby's life away, he was rolled back to the OR where we met the anesthesiologist, the GI and the rest of the team.  They answered any questions Andrew, my husband or I had and then they put the mask on his face and he started to fall asleep.  I absolutely hate that feeling-watching my baby go under.  I gave him one last kiss, told him I love him, and my husband and I went to the waiting room until Andrew was brought into recovery.

About  half an hour later a receptionist came for us and brought us to recovery.  Andrew was still partially asleep, in that drugged state.  Dr. Caicedo walked in shortly after.  I could tell by the look on his face that he had good news for us.  It was the best looking scope to date.  He said there were no visible white spots.  The only other time that has happened was when Andrew was in remission on systemic steroids.  After he said that, there was this little drugged voice from the bed, "Does that mean I get to have food?!"  My heart almost broke.  Even though he was still drugged, he knew enough to understand what was being said.  Dr. Caicedo was optimistic, as were we, but we had to wait for the biopsy results.

Fast forward 5 days:  A nurse calls to let us know that Andrew is definitely in remission, which meant that Andrew could begin his first food trial.  I needed to speak with the doctor about the particular food that Andrew wanted to eat (bison) before allowing him begin, which took another 2 days.  After waiting so long to eat, I was not going to do anything to jeopardize it by not speaking with the doctor before we began.  So a week after the scope we got the green light from the doctor.  On Friday we purchased some ground bison and on Saturday, 282 days since the last time he had food, Andrew was able to eat a bison burger.

What a wonderful lunch we had.  We were all able to sit down and actually eat food as a family for the first time in over 9 months.  Watching Andrew eat his bison burger brought so much joy to our family.  He ate it so slowly, savoring each bite.  He enjoyed his meal thoroughly.  Madison was so happy for him.  She grabbed her camera before lunch started and continued to take pictures of him throughout lunch. 

When Andrew started his elemental diet he was told it would be for 6 weeks.  It has been 282 days.  Can you imagine not being able to chew food for 9 months? How would you feel knowing your family is eating meals and you can't each day for 282 days?   Watching your friends at school eat lunch, celebrate birthdays with cupcakes, use candy for lessons for 38 weeks and not participating?  The list goes on and on.  But my Andrew did this with maturity, grace, and so little complaints.  I know the challenges have just begun, introducing foods can bring on issues of their own, but I am so grateful that God has given Andrew the strength to deal with curve balls that are thrown his way.  I know that as a family we will be able to handle the challenges of food trials if we follow Andrew's lead.

The next step?  Andrew will continue eating bison for 2 weeks.  If he has no symptoms, he will reintroduce a food every 2 weeks.  If symptoms occur we will stop that food and he will be scoped.  If no symptoms occur, then he will be scoped after every 5 foods , or every 10 weeks.  There is a systematic way to introduce foods based on a scale of the least allergenic foods.  It usually starts with vegetables, fruits, and moves on from there.  We are deviating some from the protocol by allowing Andrew to start with bison, however, it is on the bottom of allergenic scale for meats.  Now it is just wait and see....Wish us luck!

Back to School

Wow, it's hard to believe that the children will be going back to school tomorrow.  The summer has flown by as it always does, leaving me feeling rushed as the last day of vacation has arrived.  Although we always look forward to the "lazy" days of summer vacation, somehow, they are always filled with appointments and activities that somehow leave us little time for that "laziness" that I crave in June.

This week has been filled with last minute shopping, Back-to-School Night to meet the teachers and my personal meetings with my children's teachers to discuss their various special needs.  Of course Madison loves the shopping part, whereas Andrew would rather be home doing anything else.  They both enjoyed meeting their teachers, discovering the other students who will be in their class and exploring their new classrooms.  And then there are the first teacher conferences that I set up before school starts each year.

Because both of my children have special needs, I feel it is important to schedule a meeting with their new teachers before they ever step foot into their new classroom.  For Madison, this gives me an opportunity to go review her IEP with her new teacher so that she will be familiar with the accommodations that Madison is supposed to receive during the year.  This year when I contacted Madison's teacher, I asked to meet with her, stating that I knew she would be changing classes for subjects.  Her email reply asked if I would like to meet with the entire 5th grade team, as Madison would probably be working with each of them at one time or another.  That immediately gave me positive feelings about the year.  The meeting went well.  The entire team listened to me discuss Madison's background, her strengths and weaknesses.  They also asked questions and gave suggestions as to how they could make modifications in the classroom to better accommodate her.  It was a truly productive and positive meeting.  I am a true believer that when the student, teachers and parents work together, the education process works at its best.

Andrew's meeting was less involved, but yet just as important.  I needed to explain to his teacher what eosinophilic esophagitis is and what impact it has on Andrew.  She needs to be aware that he is on an elemental diet and will need to drink his "juice boxes" at various times during the day.  Andrew also asks that I go into his class the first day of school and help him explain to the class why he can only drink.  So I needed to set up a time with the teacher for me to do this.  The meeting went well and I will meet with the class tomorrow. 

Here's to a great year!  First conference....done!

Elemental (Amino Acid-Based) Formula Coverage

For some children with Eosinophilic Disorders, an amino acid-based elemental formula is a large part, if not the only form of nutrition that enters their body each day.  Due to allergies and reactions to so many foods, they are unable to consume a regular diet of everyday foods.  These formulas are life-sustaining to these children.  Without them they are sick each day, some to the point of vomiting constantly or having recurrent diarrhea. 

With this in mind, one would think that the insurance world would see it as a necessary medical need, therefor providing coverage for this extremely expensive and unpalatable medical food.  In most states, this is not the case.  There are only 14 states that provide coverage for elemental formulas at this time, and some of those with minimal coverage at best.  Here is that list with links to their coverage:

• Arizona
• Connecticut
• Illinois
• Maine
• Maryland
• Massachusetts
• Minnesota
• New Hampshire
• New Jersey
• New York
• Oregon
• Rhode Island
• Texas
• South Dakota

Read more »

Andrew Update: Biopsy and Ph Probe Results

We received Andrew's results from his endoscopy/biopsy and ph probe  a couple of weeks ago, but  things have been crazy so I haven't had a chance to post the results.  Let me start by giving a brief review of his treatment history to this point.  When he was diagnosed at age 3 he was put on a high dose of systemic steroids which did not help.  Over the next few years he was on and off swallowed steroids with no success as well.  At that time we changed GI's and he had him patch tested.  He started an elimination diet of 5 foods and his Eos count went up.  He was then patch tested again at a different clinic, was taken off 13 foods, and again his Eos count went up.  At that point we put him on an elemental only diet (Neocate Splash) for 8 weeks.  When he was scoped after those 8 weeks there were so many eos phf they couldn't count them.  So then we decided to try a round of high dose steroids while he was also on the elemental diet.  So now for the results....

The endoscopy showed that there is still furrowing and irritation, but no visible "white patches".  The biopsy results showed that he is in histologic remission (5 eos/phf, the first time he has ever been in remission).  The Ph probe showed that he has excessive reflux which is all acidic, apparently the cause of irritation in the esophagus.  So what about the treatment?  Our doctor explained to us the importance of getting Andrew's reflux under control first.  So he will be going from 20 mg of prilosec 1x/day to 40mg 2x/day.  Pretty big jump.  Next we need to taper him off the high dose steroids.  This process takes 4 weeks.  After he is weaned off the steroids, we will see if he can maintain remission off the steroids, but still on the elemental only diet for at least 3 weeks.  The doctor that our GI is consulting with suggests that we have Andrew scoped again after this period to see if he has maintained remission.  Our GI feels that we could go on symptoms, and if he doesn't have any symptoms after the 3 weeks, we could then begin to trial a food.  So that is the treatment plan.

Read more »

In the Hospital: National Eosinophil Awareness Week - Days 5 and 6

Well, it seems fitting that we have celebrated days 5 and the beginning of day 6 of National Eos Awareness Week in the hospital.  It is a scheduled visit.  Yesterday, Andrew had his 8th endoscopy, as well as his first ph probe, which is still in as I type this entry.  Six of those 8 endoscopies have been done in the last year and a half.  That means six trips to the hospital, six days of missed school, six days of anxiety (at least for Mommy, if not for Andrew), six times under anesthesia, six scopes being put down my baby's esophagus...none of this without risk, but all of this to find answers, put my child into remission and help him live a healthy more normal life. 

As I sit here and watch him play the hospital video games with  the probe in his nose, he seems so content.  I know, that seems odd, doesn't it?  I am so lucky, because my son is really such a trooper.  I truly hate this disease, but when I look at Andrew, I am reminded that I have so much to be thankful for.  He is such a brave, strong kid.  He rarely complains, even though he has not had a single bite of food since January 2 of this year.  He drinks eight of his Neocate Splash juice boxes each day and never complains.  Even while on those, he regurgitates after drinking them more than I realized.  With this probe, he has to push a button each time "junk comes up his throat" (when he regurgitates), which has been at least 30 times a day...I've lost count.  But still, he never complains.  He wakes up from a scope and is happy.  He had to stay in a hospital bed all day with a computer attached to him because of the probe, but he didn't complain.  His IV hurt, he told me, I told him it had to be there and would feel better when he was sleeping and he went to sleep.  Some children may not be so calm and cooperative. 

So if we have to fight this disease, I'm glad I have Andrew to show me how to be brave and patient.  He is an amazing child that has to deal with more than a child (or an adult for that matter) should, but he does so with such grace and courage.  I learn so much from him.  Andrew, you and Madison are my heroes, and I love you dearly!

Eos Awareness Week May 16 - May 22

Our son, Andrew suffers from an Eosinophilic Gastrointestinal Disorder. May 16-22 is National Eosinophilic Awareness Week, and we would like for you to join us in raising awareness.

Take a minute and imagine a life without food. Think about a life with no pancakes, no cheeseburgers, no birthday cake, no cookies, no morning coffee, or no sweet tea, nothing to chew on for breakfast, lunch, or dinner. Your nourishment comes from an elemental formula (which tastes like it sounds) made up of amino acids and no food proteins. Can you imagine how a holiday meal would be? Could you imagine a life without food? What if one of the things (food) that is supposed to sustain your life makes you severely ill?

That is how many children with Eosinophilic Disorders live every day - without food.

May 16 through May 22 is National Eosinophilic Awareness Week. Eosinophilic Disorders are somewhat rare white blood cell disorders where the body misinterprets food as if it were a parasite and sends eosinophils, a type of white blood cell, to attack parts of the body.

Our son, Andrew suffers from Eosinophilic Esophagitis, the most common of these rare diseases. When he eats certain foods or is exposed to environmental allergens, his body sends eosinophils to his esophagus where they attack and damage the tissue. This disease causes chronic chest and tummy pain, vomiting, gagging, and other symptoms for him. There is no cure for eosinophilic disorders and no good treatment. The current treatments are steroids and/or the elimination of foods (in his case all foods) from the patient’s diet. Andrew is currently on an elemental only diet.   He gets all of his nourishment from elemental
formula. He has not had a scope free of eosinophils or damage to the esophagus, therefor he has not
been able to add back, or trial, any foods.  Very few doctors are even aware of the disease or how to
manage it. Andrew regularly goes to Levine Children's Hospital  for endoscopies with biopsies, tests, and
doctor appointments.

At this time, the National Institutes of Health designates $0 in annual funding for research for Eos Disorders. Fortunately, some Congressmen have stepped forward and are trying to help change that. However, we need much more congressional support to fund the research that is needed to advance the management of the disease and ultimately find a cure.

You can learn more about Andrew's story and EE at my blog

eeldkids.blogspot.com


If you would like to learn more or make a donation for research in Andrew's
name, go to:

http://www.apfed.org/


If you would like to participate in National Eos Awareness Week, here are some things you can do:

Sunday, May 16: Send out mass emails to your friends and/or post on Facebook linking the above sites. Feel free to share any information from above.

Monday, May 17: Wear hot pink or purple (the color of eosinophils in biopsy slides)

Tuesday, May 18: Hand out dum dum suckers to your friends and coworkers. Many kids who have Eos disorders cannot eat anything with food proteins. However, dum dum suckers are safe because they only contain sugar and artificial ingredients. For many kids, this is their only safe food other than elemental formula.

Wednesday, May 19: Please send emails to your Congressmen reminding them that this is National Eos Awareness Week.

Thursday, May 20: Contact me if you would like to sample the elemental formula that Andrew has to drink each day.

Friday, May 21: “Eat like Andrew for a Day Challenge”. Even though Andrew can only have elemental formula, for today, we will pretend he has a few safe foods.  Following is an example of a diet for a child with Eosinophilic Esophagitis, so on this day, do not eat anything but grapes, potatoes, pears, pork, rice, and carrots. Do not drink anything other than regular koolaid or water. Make sure you read every word of all labels, and there’s no way you can eat out in any restaurant due to cross contamination. The slightest trace could make Andrew very ill, so don’t take any chances.

Saturday, May 22: Take a few minutes to let Andrew know, through a comment on my blog (eeldkids.blogspot.com), how the “Eat Like Andrew for a Day” challenge went for you.



Thank you for your time,
Ginny and Greg Barton

DisneyWorld with EE

Spring break was going to be a celebration of the end of Andrew's elemental only diet.  He was supposed to have a food added back to his diet by now and we were going to "celebrate" his success of staying on the an all liquid diet for 8 weeks (which has now been more than 3 months) by going to Disney.

Well, as you know, he didn't pass his scope, so he didn't get to add a food...but we still decided to keep our reservations and go to Disney anyway.  We discussed this decision with Andrew because we would be eating at least 1 meal a day in a restaurant, and he would have to go with us and sit at the table and drink his Splash juice box.  This is something we have not done with him since he has been on this elemental diet.  He assured us that it was okay, that he just really wanted to ride the rides anyway--"isn't that what Disney is really about?"

So off we went.  Well of course things can never be easy.  Andrew ended up sick our first day there.  I knew he either had a sinus or ear infection.  I tried calling our pediatrician, but our primary pediatrician was out for the week and the one that was available would not listen and told me we had to be seen in Disney.  Because Andrew is getting ready to start the high dose of steroids and has chronic sinus issues, I felt confident his primary would have called in a prescription, but the doctor in the office would hear nothing of it.  So then I had to find out the dose of the antibiotic pill that Andrew takes because he can not take the liquid or chewable because he becomes symptomatic while on them.  After that we had to find an Urgent Care in Disney.  Believe it or not, Disney does not employ their own physicians.  So to make a long story shorter, we spent 2 hours the next morning (the waiting time alone that evening was 3-4 hours) at Urgent Care for the doctor to tell me that my son had an ear infection, and then for me to tell him the exact medicine and dosage my son needed due to his EE.  But, since we happened to be there, I had them give him a shot of Rocefin to speed up the process so our whole trip wouldn't be miserable.  I do have to say it was interesting because while we were waiting for the shot, the doctor came back in to ask me questions about EE.  He said he had never had a patient with the disease before and wanted to learn more.  Anyway, it would have to be the child with EE to get sick!  He has not been sick once this winter since he began the elemental diet, and boom, go to Disney and right off the bat!

Read more »

Allergy Testing For EE--including Patch Testing

Eosinophilic Esophagitis is a rare disease that causes an allergic reaction in the esophagus.  The allergic reaction is caused by white blood cells called eosinophils, whereas food allergic reactions are brought on by immunoglobulin E (IgE).  The eosinophils can cause a delayed allergic reaction, while an IgE response is more immediate.  Some children with EE can have both delayed reactions or IgE responses to an allergen.  Food is usually the main culprit for kids with EE, however, environmental allergies can play a role as well.

There are four different ways to test a child for food allergies.  The most common two are the skin prick tests and the blood tests (or RAST tests).  There is also patch testing and fresh food testing.  Below is a description of each:

Read more »

Biospy Results After Elemental Diet for Eosinophilic Esophagitis

Thursday morning we woke up and took Andrew to the hospital for an endoscopy and biopsy after 8 weeks of an elemental diet.  My husband, Andrew and I all felt fairly confident going into this procedure, as 90-95% of children that are treated with the elemental diet go into remission.  Between those statistics, the fact that his symptoms had nearly diminished and he finally began to gain weight (5 pounds in 2 months) we were cautiously optimistic that his scope would be clear.

Before I go on, let me explain an elemental diet and why it is used for children with EE.  An elemental diet removes all sources of whole or partial proteins.  This is done by having the child (or adult) either drink, as in Andrew's case, or ingest by feeding tube an amino acid-based formula, such as Neocate or Elecare.  An elemental diet may be considered after a complete elimination diet of positive foods and medications have failed.  The goal of the elemental diet is remission, having symptoms resolve and eosinophils clear (at least below 10).  At that point, the child would begin food trials, systematically adding back one food/ingredient at a time to determine which foods are causing a reaction.

Read more »

Elimination Diets for Kids with Eosinophilic Esophagitis

Our world revolves around food.  Most events-- family and friend gatherings, holiday get togethers, birthday parties, class parties at school, after game celebrations, special treats for positive reinforcement, and just having a nice meal, all include food.  Food is something we all have in common.  We use food as a way a to socialize with family, friends, even co-workers and acquaintances.

What do you think you would do if one day you were told you could no longer eat your favorite foods.  Let's say you really enjoy that bowl of Corn Flakes with a nice cold glass of milk each morning.  Or you look forward to that steaming cup of coffee with cream.  Perhaps you really enjoy eating yogurt and a bowl of fruit, say strawberries or grapes for lunch.  And how about that grilled chicken or salmon for dinner with a nice roll.  And if you feel like it during the day and don't want to snack, you might grab a piece of chewing gum or suck on a mint.  Now imagine that you can't eat any of these items among many, many more.  How do you think you would react?

So many children with EE are on either elimination or elemental diets.  This can be such a scary, frustrating and overwhelming time for these children and their families.  When we found out what foods Andrew was first going to be taken off, (wheat, chicken, milk, fish, and treenuts) I remember feeling devastated, overwhelmed and so sad for my son.  However, at the same time, I was hopeful that this diet was going to put us on the path to remission.  But my feelings were not the feelings that were most important...there was this 6 year old boy that was being told he was not going to be able to eat his favorite foods anymore.  No more milk, ice cream, cheese, bread, and so many more things that you would never imagine that have these ingredients hidden in them.  Going to restaurants would have to be limited, birthday cake at friends parties was a no-no, he would have to bring his own snack to his basketball games, and on and on and on.  So I asked Andrew how he felt about having to go on this new diet and his reply amazed me. "I'm a little bit sad and a little bit happy.  I'm little sad because I wont be able to eat some of the food I like, but I'm a little happy because I will get to try new foods."  He about brought me to tears.  What  a mature response for a little guy, and how blessed we are to have such a wonderful son.  So then it was my job to do research, buy cookbooks and learn how to change his diet and make his food, as well as our entire family's dinners "Andrew safe".

Read more »

Andrew's Food Free 8th Birthday

Wow! My baby is 8. Birthdays are always such a big deal for kids. They anticipate their party for months...the cake, who they will invite, what the theme will be, the cake, the treat bags, the games, oh, and did I mention the cake?

Well, cake means food, and this posed a challenge for Andrew's party this year due to his Eosinophilic Esophagitis (EE) and elemental diet. Did no food have to mean no cake? It is our tradition to have birthday parties at our house. The kids choose their theme, I frantically come up with activities and snacks that go along with said theme and of course bake and decorate the cake myself. Add kids, and voila...birthday party.

But what happens when you are celebrating a birthday for an 8 year old boy who has been taken off all food (except pure sugar). I have to say my husband and I were not entirely thrilled with the prospect of planning Andrew's birthday party this year. As we thought about what he could do, we mentioned having a bowling party to him. We thought this may be a venue that would be less focused on food with all the excitement and activity going on. Andrew was excited by the idea, especially when we mentioned that they would also be able to play laser tag. Okay, party planned for me...the bowling alley takes care of everything. Boy is that strange for me.

Now that the party was planned, I just couldn't stand the idea that Andrew wouldn't have a cake. So I decided that he would have a cardboard cake made out of individual boxes. I then painted the boxes the best I could to look like a cake. I found "Happy Birthday" candles attached to toothpicks that I inserted into the boxes so that he would have candles to blow out. Inside each box was a sandwich bag of home spun, plain sugar cotton candy. As I mentioned before, the only thing that he can eat is pure sugar. So he is lucky enough to have a cotton candy machine so that I can make him "safe" cotton candy.  (An alternative to using cotton candy if you truly want a "food free cake" would be to use the boxes as the "goodie bags" and fill them with fun treats for the kids.)

I did not tell Andrew I was going to do this. He knew he couldn't have a cake, and being the trooper that he is, he was okay with that. Andrew was excited when we finally revealed the cake to him, and he realized that he would have candles to blow out. I'm not sure all of his friends were thrilled with my creation and the contents of their boxes, although they were all polite and understand Andrew's diet. However, making my son happy and feel somewhat "normal" on his birthday was my main goal. If I accomplished that, then nothing else matters.

Happy Birthday (really tomorrow) Andrew! I love you!


Just another aspect of living with EE.

A Life With Eosinophilic Esophagitis -- Andrew's Story

Andrew is a gifted, sweet, all boy 8 year old. The day he was born was another one of the most precious days of our lives. Besides the fact that he was huge, 10 lbs. 9oz. he was perfect. Madison fell in love with her "Ohjew" immediately.


Andrew was an extremely fussy baby. That may actually be an understatement. He cried most of time and spit up constantly. Madison had never spit up, so I didn't realize that this might not be normal. Finally when he was about 4 months a friend told me she thought he may have reflux. So I spoke to the pediatrician a couple of months later and she sent us to a pediatric Gastrointerologist (GI). He agreed that Andrew may have reflux, said babies usually outgrow it by 9 months and put Andrew on some meds. By 9 months he still had not outgrown the spitting up and was still quite a fussy baby. We went back to the the GI, who encouraged us to continue the medication, but now informed us that most babies outgrow reflux by age 12 months.


By 12 months Andrew would still spit up and could still be fussy. I would (and still do at times) call him lovingly, my temper tantrum baby. After he turned a year, we stopped giving him medication. The spitting up eventually began to subside around 18 months. However, during this time he would have chronic sinus infections and seemed to stay sick most of the time. He was (and is) prone to getting croup as well. I remember many nights sitting in the bathroom with the hot water running to produce steam, then either taking him outside in the freezing night air, or putting his head in the freezer if the temperature outside was not cold enough.


At one point the ENT told us to take him off all milk products to see if a milk allergy was causing his sinus issues. We did this for a month with no results. He spent a good portion of his first 4 years on anti-biotics.

Read more »