Thursday, April 8, 2010

Yesterday's Visit to Duke

It’s spring break for the kids and we’re spending a couple of days at the beach.  On our way here we stopped by the Duke Clinical Research Unit for our final appointment before our food challenge scheduled for early June.  It was a short appointment consisting of a quick vital check for Abigail, getting a new bottle of drops, discussing the details of the challenge, and most importantly, talking about Abigail’s stomach issues.

I feel good about the food challenge.  I really think that Abigail is getting the real stuff and not the placebo.  I’m going to feel incredible foolish if she’s not.  Her symptoms/complaints after receiving each dose increase are classic side effects of sublingual immunotherapy (SLIT).  I just recently learned this when I started researching the side effects in hopes of finding an answer to her belly issues.

A study by the American Academy of Otolaryngology – Head & Neck Surgery Foundation explored data from selected clinical studies and concluded that “sublingual immunotherapy may be well suited to fill the gap posed by the undertreatment of allergic syndromes in the U.S.”  I’ll touch on some of the details of this study in another post but the biggest take-away for me was that they found that the majority of adverse effects are minor and include mostly itching and oral discomfort.  In one study with 36 children only 2 children experienced adverse effects, Surprisingly for me, it was mild abdominal pain.  In a study with 354 children minor adverse affects occurred in less than 10% of patients.  Oral/throat itching, abdominal pain, urticaria and rhinoconjunctivitis all occurred in less than 1%.  No anaphylactic or other serious reactions occurred.  Similar findings were noted in 9 other trials. So, there is a possibility that Abigail’s stomach could be a result of our participation in the study.  After all, she also experiences the tingling in her mouth, throat and ears.

A side note to parents with kids in the study.  Please don’t assume your child is on the placebo if they’re not experiencing anything.  There’s a 50/50 chance that they aren’t.  My daughter is the exception here not the norm.

Here’s what we’re going to do about Abigail’s stomach.  Her dad and I decided to start her back on Prilosec.  We have to rule out acid reflux.  Also, more disturbingly is Eosinophilic Esophagitis (EE).  There have been 2 instances where children have left the study because they were diagnosed with EE.   In talking with our doctor at Duke they don’t know if taking part in the study was a direct cause or if it just unlocked a dormant condition.  However, until they know more, it’s now something that they discuss with patients at the start of the study.  Like food allergies, EE is a condition with more unknowns than knowns.  In both cases, the child was removed from the study, given oral steroids and symptoms subsided.  It’s a huge concern for me.

If Prilosec works, we can rule out EE and avoid an endoscopy.  It might take up to 8 weeks to see if it will work which puts us right about the time we have our food challenge.  If it doesn’t work, and we unveil to find she’s on the placebo, we have to start looking at other culprits.  If it doesn’t work, and we find that Abigail is on the peanut drops, we’ll have some hard decisions to make.  After the food challenge, there’s still 18 months left in the trial.  I asked our doctor if it was possible that when she builds up complete tolerance to her food allergy her stomach pains will go away.  It’s possible.  I also asked if her stomach could take weeks, even months, to heal after continuous exposure, and found that might also be the case.  There’s just no way of knowing.

So, for now, it’s Prilosec which is not without risks.  Prilosec reduces the levels of acid in the stomach making it easier for bacteria, viruses and fungi to flourish.  Low acid also prevents nutrients from properly assimilating through the body causing nutrient deficiencies.  The article, “Why You Should Never Take Prilosec OTC to Remain Heartburn Free,” identifies the main cause of excess acid is eating foods that your body is intolerant to or allergic to.  We know Abigail’s being exposed to peanuts (or at least very sure she is), and it’s not as easy as just eliminating that food.

One last thing we’re doing is giving Abigail her drops in the morning rather than before dinner.  Her stomach hurts most around bedtime which is about 2 to 3 hours after getting the drops.  Maybe we’ll see a difference if we don’t add something that has the potential to hurt her stomach around the same time she eats the heaviest meal of the day.

All this, and I never got to discuss the food challenge details.  I’ll have to save that for another day.

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