Phenol Sensitivity and Our Family

4

April 29, 2013 by malaikakerr

I’ve been thinking a lot about how share this new food sensitivity our family is dealing with. Understandably, I’ve had many questions about it and I’d like to address them here.  I am aware that it may sound a little ridiculous at first,  but I trust that my blog readers (particularly my mama-friends) can respect that this is a real struggle for us and a real issue for Abel. As Abel’s parents we desire to do what’s best for him regardless of questions of legitimacy from others, but of course it’s reassuring to have the support and understanding of those around you.

When I took Abel for his 3 year checkup  our pediatrician noticed that his cheeks and ears were very red. She asked me if that happened often, and asked me about a list of additional symptoms (which I’ll address in a second). I confirmed that his cheeks flamed so frequently and often so intensely red that I’d had others comment on it many times, and that he also had all of the other symptoms she asked about. Our pediatrician told me that she suspected Abel had a phenol sensitivity, and explained that phenols were a compound found in all growing things (all fruits and veggies among other things) in varying intensities. I left with instructions to eliminate high-phenol food from his diet for a few days, observe him, give him several phenolic foods, and observe him again.

After following her directions, it was extremely obvious that Dr. Mumper was exactly right: many of the foods we were giving Abel on a daily basis were making him one sick and wild little dude.

While we are still working with this list to see which foods affect Abel personally, in the past few months we have needed to nearly eliminate the following foods from his diet:

  • tomatoes (saucy pizza, spaghetti sauce, ketchup, salsa, etc)
  • raisins (including his beloved yogurt raisins)
  • apples (harder to avoid then you think!)
  • bananas (another Abel-favorite)
  • cocoa (this has been a tough one)
  • strawberries
  • blueberries
  • blackberries
  • raspberries
  • cinnamon
  • grapes
  • vinegar (both from grapes and apples)
  • artificial food colorings and flavorings (The hardest to avoid is vanillin, we’d cut out most already)
  • craisins

 

When Abel has these foods, there are several symptoms he has to deal with. In addition to the red cheeks/ears, Abel personally experiences:

  • terrible diarrhea
  • extreme mood swings
  • hyperactivity
  • inappropriate laughing
  •  becoming weepy and on the verge of tears for hours at a time
  • being super clingy when others are around
  • skin rashes
  • becoming extremely irrational

 

310860_10100835744723228_2001022749_n

Can you see the red rash under the corner of his mouth? We’ve been fighting it, along with other dry patches, for months.

However, night waking, self injury, headaches, and  self stimulatory behavior are also very common side effects that we’re hoping don’t develop as well. Abel does complain of headaches from time to time, but I’m thinking it’s just because he hears me talk about my headaches and that he’s not truly experiencing his own.

The following are questions that I’ve heard the most frequently. If you have a question I missed, please feel free to comment and ask!

1. If Abel’s symptoms are so severe, why didn’t you notice it until his doctor said something?

Of course we noticed that he experienced these things. He had diarrhea off and on for months and months! Reed and I just assumed that it was because of his high fiber diet. It was normal for Abel, so it didn’t strike us as something abnormal enough to look into.  The emotional side effects he experiences are also very extreme, and I had been struggling with him quite a bit over them. We’d have days where I felt like Abel was out of control, and I’d cry to Reed about not knowing how to discipline him well when he called on his lunch break. It was so frustrating since Abel’s typical temperament was nothing like the wild, irrational, moody, weepy Abel that came to visit a few times a week. It truly seemed like I was dealing with two different children. But wouldn’t any parent of a toddler just assume it was a discipline issue and not dream up some crazy food sensitivity that no one’s ever heard of? How would we have had any idea all these strange symptoms were related?

2. Mood swings? Being irrational? Inappropriate laughter? Hyperactivity? Sounds like you have a toddler… not a kid with food allergies.  Either that, or my kid has this phenol thing, too.

*Sigh*

Please stop saying this to me.

I think, as moms, we can all respect that we each know our kid best. We know their norms and we know what abnormal behavior looks like. I am under no illusions, Abel is NOT a perfect kid. BUT, hour after endless hour of him holding back tears with every sentence, crying or flying off the handle whenever something changes in his day, begging to take a nap, inappropriate and hysterical laughing.. these things are not our normal Abel! Then of course, the red face, rashes, and diarrhea aren’t up for debate, he obviously has them. All of these symptoms together on the same day, all day, occurring after he eats foods high in phenols make it pretty obvious to Reed and I that he has this sensitivity. When someone hears me explain this and then casually  says, “My toddler is emotional! Maybe they have it too!” makes me feel like they truly don’t understand how devastating the effects can be on Abel and our family, and how drastically different it makes his little personality. I’ve actually read that many times, phenol sensitivities are misdiagnosed as ADD or ADHD. One adult who had it described feeling like he was extremely overwhelmed with sensation after eating phenols, like what he imagined an autistic individual felt like.

3. All of that being said, does Abel experience some of these emotional side effects other times? How do you know if it’s the phenols or just his behavior that day?

Like I said, OF COURSE Abel has isolated temper tantrums, emotional days, etc. He is a toddler! But you have to look at the big picture and ask yourself: what is normal behavior for this child? When he acts inappropriately, no matter the cause, we address him, discipline him, and move on. On phenol days, we fight this battle all day long (which again, is NOT his normal personality, for other toddlers it is!), and he truly will cry off and on the majority of the day. He also becomes completely irrational about bizarre things, which is a huge red flag for me, as Abel was capable of rationalizing with me from a very young age. He will also have an upset tummy, his rash flairs, and he’ll often put himself down for a nap. All of this together, including watching his diet, points me to the obvious conclusion that he had too many phenols the day or meal before. We obviously want to do what’s best for Abel, and setting him up to be emotional, irrational, agitated, frustrated, and moody is not in his best interest when we know what is causing it.

4. Is it lifelong? Can he not have any off these foods at all? Do you cheat?

As far as we know, it’s lifelong. He won’t outgrow this. A far as how much of each food he can have, we’re still in the experimentation process. We have a list of foods (the ones above) that he really can’t have any of, or we will experiences the consequences. Because phenols are in all fruits and veggies, the goal is to stay away from high phenol foods so that his system isn’t overwhelmed when he eats the unavoidable phenols.  We’ve discovered that we can occasionally give him foods with moderate levels as long as he just has a taste, and he has no other phenolic foods in the same day or so.  It’s a balancing act that we’re still trying to figure out. It’s taking constant vigilance, and constant evaluation.

5. If his symptoms are so severe, why have I never noticed them?

We are obviously aware of our own children much more so than others. Just like you don’t truly know Abel’s “normal”, you also aren’t aware of how often his symptoms are occurring, or how dramatically different his symptomatic self is.   You may think the outburst you saw was just a normal toddler one. And maybe it was! But maybe it was one of 50 he’s had that day, and you just aren’t aware. Also, I’ve learned that when others are around, Abel is generally much more clingy and shy than usual, and more wild, crazy, and defiant around Reed and I.  If you’ve known us for any length of time then I am positive that you have seen the phenol-induced extreme shyness Abel exhibits. And as he matures, I am sure you’ll see the wild,crazy, defiant phenol Abel, too.  But only if you’re paying attention. If not, you’ll just think he’s having a normal toddler day! I also want to add that you may not have seen his symptoms because we generally avoid taking Abel out when he’s having a wild day, even before we had an actual diagnosis. Reed and I don’t want to set him up to disobey, and we find his constant outbursts easier to manage at home away from others.

If you remember, Abel isn’t the only one in our family with food allergies.  It is a huge undertaking to keep these boys fed with foods that don’t make them sick! Honestly, Micah’s dairy allergy is easier to manage, since it’s cut and dry. You butter his toast, he throws up. End of discussion. But I am very, very thankful that neither boy’s food issue is life threatening, like their Daddy’s kiwi allergy. (And kiwi, by the way, are one of the only fruits Abel can have!)

Please feel free to contact me with any more questions. Thank you for taking the time to learn about our family!

Advertisements

4 thoughts on “Phenol Sensitivity and Our Family

  1. Tara says:

    Wow, geez that is a very intense list of foods to have to avoid! It doubly stinks because I know that as a great momma you want to feed Abel all his healthy fruits and veggies and now it is so much harder. That being said though, as annoying as the “helpful” or flippant comments about his diet are, you can only do you and worry about you – don’t let other mommas phase you one bit. You know your kidlet best, and you live it everyday.

    • malaikakerr says:

      Thanks, Tara 🙂 I’m sure the comments you have to deal with are much more annoying. I’m trying to focus on what’s best for him, but it’s hard not to seek the approval of other people! Hopefully taking the time to explain it a bit will be helpful.

  2. Jackie Waters says:

    Wow, Toni. I had no idea you, Reed, and Abel were dealing with this. It sounds like a very difficult allergy to have – for you and for him! Do you feel relieved to know what’s going on to produce such strong emotions, or is the diagnosis overwhelming? I’m praying you and Reed will have wisdom and know how to handle each meal and each day.

    • malaikakerr says:

      We are very thankful that now we know what was causing his strange behavior. It is overwhelming, particularly since our family was already restricted concerning food because of Micah’s dairy allergy! But just like parents do their best to make sure their kid’s needs are met in other areas, we see this as a new, unique need that we have been challenged to meet. As tempting as it can be to “cheat”, it is terrible to watch him struggle with his irrational, out of control behavior just because of a slice of chocolate cake at a birthday party. 😦

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: