The elevator to success is out of order. You'll have to use the step at a time. ~Joe Girard

Spreading Awareness

My purpose in writing this blog is to spread awareness and provide support to parents of children with and without special needs. I have one child with a Learning Disability, more specifically, a Visual Processing Disorder including Dysgraphia and another child with a disease called Eosinophilic Esophagitis, an allergic white blood cell disease that attacks the esophagus.

Tuesday, October 12, 2010

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!