Clinical Trials and Emotional Tribulations

For the past two weeks, I have been living, breathing, eating, sleeping, and existing in all things food allergies.

I don't know quite where to start.

I guess the beginning.

A little over a year ago I wrote a post about how my son, Casey had been diagnosed with a peanut allergy.  (He has a RAST score of over 100 - the highest you can get.)  I haven't really mentioned it since.  In part because it's not always on the forefront of my mind, and in part because I didn't think it's the kind of thing that people want to read about.

But it has become part of our daily lives and then some.

We've had meetings with his teachers and his camp counselors about how and when to use the epi-pen.  Every time he goes for a playdate, I have to have a discussion with the parents first.  Same goes for birthday parties, soccer classes, babysitters, and pretty much any time there is food and kids around.  I have written a detailed plan for all family members whose homes we visit, which includes where they need to place their nuts, what they need to do at a restaurant, and what the initial signs of an allergic reaction may be.  I have more epi-pens than I can count, stored in all sorts of places - both cars, the kitchen, the school, and in various baby sitters' purses.

Notwithstanding all this, Casey, had an allergic reaction to macaroni and cheese from the Cheesecake Factory back in July.  (There had been cross contamination with peanuts).  We had to use the epi-pen for the first time, right in the thigh.  Then we sat at the ER for four hours to be monitored.

It was at that point that I decided enough was enough.

Last year when Casey was diagnosed with the allergy, I did a bit of internet research.  I learned that there was a doctor at Johns Hopkins, Dr. Wood, who is at the forefront of allergy research.  His hypothesis is that food avoidance actually exacerbates allergies, and that if people are continually exposed to their allergen over a long period of time, their allergy can actually go away.  And guess what - studies have shown it works.

I made an appointment, that we had to wait six months for.  The appointment itself was anti-climactic, but Dr. Wood did mention that there was a peanut allergy clinical trial that Casey was eligible for.  It was one of those desensitization studies that I had read about - whereby the patient ingests small amounts of peanuts over some years until they are desensitized to the allergy.  It all sounded well and good, until I found out it would entail 20+ visits to Johns Hopkins over a year, Casey would be poked and prodded, be put at risk by being exposed to the allergen that I had tirelessly sought to avoid, and after all that, he could be put in the PLACEBO group (Aka, he would get oats.  Not peanuts.  And we wouldn't know until the end of the study, three years later).

I had decided against the study, until that day in July.  I called the next day.  And after a lot of back and forth and releases and signatures, Casey started the trial two weeks ago.  And it has been intense.  We have been to Baltimore five times so far, in the past two weeks.  Each appointment is about 4 hours.

It has been incredibly emotional.  My God, it is hard to watch your child scream as multiple vials of blood are taken from their arm, and cling to you as their back is pricked with 20+ needles.  And even worse is watching the nurse give your child peanuts, and anticipate the reaction that is to come. And then scream in pain as they are stabbed with an epi-pen.  And then shake uncontrollably as the adrenaline flows through their body.

But even through all that we feel SO grateful.  SO lucky.  In SUCH good hands.

I am about to make some generalizations about allergies and the medical profession.  I have no medical degree.  I'm a mere mom in this sense.  So for what it's worth, here are my thoughts.

Most doctors don't know shit about allergies.

It isn't their fault, and they don't necessarily pretend to.  But if you go to a regular allergist, what they will do is do a skin test, take blood, give you a prescription for an epi-pen if necessary, and then send you on your merry way telling you to avoid the allergen and have a nice life.

You may ask questions like:  Could my child outgrow the allergy?  Just how allergic is he/she? What happens if he/she accidentally ingests it?  Will it be a major or minor reaction?  What caused this allergy?  What could help to cure it?

The universal answer - We don't know.

The only way to begin to answer these questions is to delve deeper, and to do things that you may not feel all that comfortable with.  Want to know how your child will react?  Give them the allergen. What happens if you don't use the epi-pen right away?  Wait and see.  Just how much of the allergen would it take to yield a reaction?  Give the allergen gradually, and figure it out.

Regular doctors don't do this, unless a child's RAST score is so low that their chances of a reaction are slim to none.  [Which is unfortunate, because you should NOT try this at home!].

But Dr. Wood does.  On highly allergic kids.  Like my Casey.

I now know just how much peanut Casey can ingest before he starts gagging and coughing.  The answer is crumbs - mere crumbs.  Crumbs you can barely see.

I now know the exact signs to look for to assess if Casey is having a reaction.  First he gags.  Then he coughs.  Then he starts rubbing his nose.  Then he gets nauseous, and if left untreated, he throws up.

I now know that once the epi-pen is administered, all his symptoms go away almost immediately.  I now know that the epi-pen is not something to fear.

I learned all of these things from screenings that were mandatory to get into the Johns Hopkins study.  Casey "passed" all of them.  Blood test, check.  Skin test, check.  Food challenge test, check. Yes, he is allergic.  Yes, he is eligible.

Yesterday was his first "real" day in the study, when he was to get his first dose - either of peanut of placebo (oats).  I found myself in the odd position of praying he would have some kind of reaction, as it would confirm that he was in the "peanut" group.

AND HE DID!

Yes, I cheered as he coughed and gagged.  Because how much would it suck to go through all of this FOR NOTHING?  For no chance at being "cured"?  (I get that it's in the name of science and all, but come on.  Lets do this).

So my baby, Casey, who is as allergic to peanuts as one can be, will be eating peanuts EVERY day for the next 18 months.

He is a trooper.  And the bravest kid I know. 

There are no guarantees, of course.  This is a study.  But it's the best chance he's got.  And it is WORTH it.

So this is Casey.

Now lets talk about my other children.

In the midst of all of this, life has to continue on.  Colin, my 10 month old, started solids a few months ago.  And whenever I would feed him yogurt, cottage cheese, egg salad, or anything with eggs/dairy, this would happen to him:

Red splotches all over his face - generally where the yogurt/cheese/egg/whatever touched his face.

My reaction?  YOU'VE GOT TO BE FUCKING KIDDING ME.

So we made an appointment with our run of the mill allergist.  They did a skin prick test on his poor little back, and my angel baby did not even cry.  The results revealed a sensitivity to egg and milk. To confirm the allergy, they needed to do a blood test, but after several pokes, they couldn't find a vein in his fat little arms.  (My husband subsequently took him to a different lab this morning, where they poked him multiple times yet again and still couldn't find a vein.  Sigh.).

I am adjusting to the reality that I may not be able to give Colin milk when he turns 1, and I may be breastfeeding this kid indefinitely.  I made an appointment for him to see Dr. Wood at Johns Hopkins, the same doctor Casey sees.  We can't get in until April.

You think I'm done?  No, I'm not done!  Because I have one other child, and far be it for me to expect him to be allergy free.  Now on to my six year old, Braden.

Braden has been having stomach issues for the past few months.  As such, his GI doctor ordered a series of labs and had his blood checked for various things - parasites, celiac, etc.  When we went in for an appointment to go over the results, his doctor said to me:  You never mentioned that Braden had a peanut allergy.  

My reaction?  YOU'VE GOT TO BE FUCKING KIDDING ME.

Yes, the blood work showed that Braden has a peanut allergy as well, although he had a much lower RAST score than Casey (a 6).  This was incredibly shocking to me, because Braden has had peanuts before (although not for a long time, since our house is nut free), and he has never had a reaction.

If it hadn't been for my experience with Dr. Wood at Johns Hopkins, I probably would have just filled our prescription for an epi-pen and gone on my merry way.

But no.  Not this time.  I will not give in to peanuts again!

Here's another fun fact - many people who test positive for a peanut allergy on skin and blood tests AREN'T ACTUALLY ALLERGIC!  The only way to know if you are truly allergic is to eat the food (see above).  And see what happens.

Back to our run of the mill allergist.  I argued, pleaded, and lobbied hard for a food challenge for Braden.  They did a more detailed peanut panel (called a component test), and he was still borderline.  They resisted, and I think were somewhat shocked at my perseverence.  After all, why would a mother push for something "risky"?  But I am seasoned.  I am in the know.  And I refuse to have Braden live his life as if he has a peanut allergy if he doesn't actually have one at all.

He has his peanut challenge on Monday morning at 7:30am.

I never thought in a million years that I would be living in a world of food allergies.  I have NO allergies myself.  Not to food, pollen, pets, etc.  My husband has the run of the mill seasonal allergies and some nuts make his mouth itch.  But that's it.

As a mother, you can't help but wonder - What did I do wrong?  Should I have eaten more peanuts during pregnancy?  Less?  Should I have breastfed longer?  Introduced formula earlier?  Used less hand sanitizer?  More hand sanitizer?  Resisted antibiotic for their first ear infections?

The fact is, food allergies are part of a wave of conditions that are increasingly on the rise.  AND NO ONE KNOWS WHY.  What about autism?  And early puberty?

WHAT IS GOING ON????

What I do know is that I am going to tackle these allergies head on.  And someday, in a few years, my kids and I will all sit around our kitchen table and eat peanut butter and jelly sandwiches.  With a glass of milk and a slice of swiss cheese.

And we will celebrate.

Until then, we charge on.

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