Initial Plan of Treatment

WALKING TALKING PHARMACY

Pulmicort.  Prednisone.  Budesonide.  Budesonide Slurry.  Prevacid.  Kids Essentials 1.5 Cal Boost.  Pediasure.  Duocal.  Periacton.  Cypraheptadine.  Miralax.  Words that were so foreign before, quickly became a part of our everyday vocabulary for Brady's initial plan of treatment.

Our in-home pharmacy



We got to be on a first-name basis with our local pharmacist as we became frequent flyers of Walgreens.  After diagnosis, it was determined that Brady would go on an acid-reducer (Prevacid) and would also be given Prednisone to help with the swelling in his esophagus.  We were warned about Prednisone in the fact that Brady would gain weight (which was a great side effect for us since Brady was so underweight), but also that Brady’s mood swings and temper may flare.  That was the not so fun side effect.  Brady was all over the place during the 5 weeks he was on Prednisone and melt downs and temper flares became the norm, in addition to the infamous “terrible twos”.   But he also gained 3 much needed pounds and became puffy and developed what is commonly known as “moon face” due to the puffiness caused by the drug.  The downside of Prednisone is that it can start affecting other organs and so it was decided he would only be on it for a limited time. 

Before Prednisone

After five weeks on Prednisone



After five weeks, we then moved on to Pulmicort (Budesonide).  This drug was to be a swallowed steroid and mixed with 5 packets of Splenda aka the “Budesonide Slurry”.  Brady hated it.  We tried every which way to get him to swallow it.  Every time we got the drug down him or partially down him, Brady would either spit it out or vomit it up (along with the rest of the contents of his stomach).  It was so depressing to see the hard-fought calories that we tried to get down him during his meal come right back up as a reaction to taking meds.  It became the “Battle of the Budesonide” and my husband and I lost that battle every single time.  We had to attempt giving him the Budesonide Slurry two times a day.  This lasted for months and eventually we decided to give up on the battle.  The stress just wasn’t worth it. 

We also had to fight the “Battle of the Boost” on a daily basis.  Brady received much of his calories through a liquid diet, mostly consisting of Kids Essentials Boost 1.5 Cal.  Boost doesn’t smell that great and the taste is even worse.  Yet, we had to convince a 2 ½ year-old that Boost was “yummy!” and that he needed to drink 3 bottles of it every day.  Boost was also extremely expensive and not covered by our insurance (boo!).  After opening a can of Boost, we had 24 hours to get Brady to drink it.  Otherwise we had to pour the liquid gold down the sink (so sad). 

FEEDING THERAPY

During this time period, Brady was also in feeding therapy with a wonderful occupational therapist (Allison) through a program called Help Me Grow.  Allison was amazing with our son.  She also gave me hope that maybe someday Brady would get over his fear of food and texture issues.  She got down to his level and tried to make our meal times less stressful.  On average, it would take my husband and myself anywhere from 45 minutes to 75 minutes to get Brady to eat 10-15 bites of food. 

Brady had a diet that consisted of 5 preferred foods:  toast, crackers, chips, yogurt and the occasional chicken nugget.  That’s it.  And we had to try to get him to eat bites of his preferred foods along with the non-preferred foods which consisted of every other food known to man.  Cookies, ice cream, hamburgers, grilled cheese… pretty much anything that had some fat in it to help him gain weight.  Brady hated every last food he tried.  Again, with the spitting and vomiting at almost every meal time.  He would sometimes hold out for 20 minutes on taking one bite.  Twenty very long, agonizing, want to pull my hair out minutes. 

Due to Brady’s limited diet and lack of intake, I am the opposite of most moms when it comes to grocery shopping.  Instead of shopping for healthy choices like yogurt, veggies, fruits, etc., I am often scouring the back of labels looking for the highest fat content and calories.  I hit the jackpot when I discovered Land O Lakes butter that had a whopping 100 calories (100 calories of fat!) per tablespoon.  Score!  I tried melting the butter and hiding it in anything.  I did the same with oils and corn syrup, along with adding a product called Duocal to his preferred foods like yogurt and juice.  This was all with the recommendation from Brady’s dietician. 

It was and still is such a frustrating process to help him gain trust in food and to want to try new things.  Even to this day, at the age of four, Brady will still ask what the names of various foods are.  Food is such a foreign concept to him.  It's times like these when I have to tell him, "that's spaghetti" or "that's a sub sandwich" or "that's lasagna" that it hits me how different his life is.    

Brady has seen 3 occupational therapists and 1 speech therapist over the past two years that have all had their successes at times, but is often hard to sustain for our family.  I know the techniques and theories of feeding therapy, but Brady is a very strong-willed little boy (don’t have any idea where he gets that glorious trait from)  J,  that something simple like trying to take a bite of a cookie turns into, well… something much more.  And let me tell you, it isn’t pretty some days. 

We are currently taking a break from therapy.  Our last therapist said she needed a break and that she felt “stuck”.  Welcome to my world, honey.  I’ll be honest that the break is as much for Brady as it is for me and my husband.  It takes so much will-power, strength and discipline to follow through the therapy techniques at each meal. 

For now, we take each meal, day by day.  Some days are good, some days are bad, and we have to be okay with that -- otherwise we’d go crazy.