A Journey of a Thousand Foods Begins With a Single Bite

OK, I wrote this post with the plan to post it today, but over the weekend some things popped up on our radar that complicates the issues. I didn’t have time to re-write it to include the new stuff, so, here’s the originally planned post, with the weekend revelations at the end.  Sorry for the length…
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Lately I’ve been writing a lot about Mr. Charm and his Fructose Malabsorption.  That’s simply because it is so new, so challenging, and I’m in the midst of learning as much as I can about it.

Meanwhile, Mr. Happy has been rolling along, happily nursing his way into “chunky monkey” status, and we’ve been relaxed and happy with his wonderful, safe, baseline.

But we know we can’t stay like this forever.

Now that there is a diagnosis for Mr. Charm and we have a game plan in place for discovering his safe foods, our attention is being drawn back to Mr. Happy and what we must do next for our FPIES baby.

The conventional wisdom of doctors is that children should receive their first solid foods between 4-6 months of age.  FPIES Mama’s, on the other hand, contend that you should put off solid foods for as long as you possibly can.

We’re starting to think that ‘as long as we possibly can’ is soon.  Like, maybe, now.

See, I’m a Flight Attendant.  When my maternity leave is over at the end of May, I will be back at work.  I may not (almost certainly will not) be awarded a jobshare at that time, which means I will be working somewhere between part and full-time.  That translates to at least 10, and maybe as high as 15 days of work per month.

Since I do not live in my domicile and must commute by plane to get to work, I often lose a day at home at the beginning or end of each work assignment (trip).  So come June, I will be gone from my family anywhere from 12-20 days a month.

A food trial for Mr. Happy will take anywhere from 2-4 weeks, and he must be carefully watched during that time.  Much as I love my Mom and much as I love the Geek, Grandma is not as familiar with my kiddos and may easily miss certain ‘early’ fail signs, and the Geek works an 8-5 job, so only gets about 2 or 3 hours a day with the kids.  Easy to miss things when you’re not with them 24/7.

So I will be doing my best to cram my work in to big chunks so I can be home and attentive during food trials for Mr. Happy next summer, but that means that we may only be able to trial a new food every 6-8 weeks.  That’s not counting any ‘gut rest’ time after fails.

So it would be in all of our best interests to get a tidy little menu built for Mr. Happy before I return to work, because after that time, his menu growth will seriously be slowed.

Also, and this is going to sound horrible, but the Geek and I must look at our family’s financial health as well as our family’s physical health.  For 2012, we have reached our maximum out of pocket expenses for medical costs.  Come January 1st, we’ll have to fork out the many thousands of dollars necessary to reach that out of pocket maximum again…which we truly cannot afford until after I’ve gone back to work and started receiving paychecks.

So IF we start trialing Mr. Happy on foods in the next two months and IF he reacts and we end up in the ER, it will only cost us $150.  If we wait until January or later, his first ER visit will cost upwards of 4K.

It’s a horrible position to be in; I want to first and foremost do what is best for my son.  Except, I’m not quite sure what that is!  I hate the idea of him being two years old and only having 7 safe foods, not because he can’t pass them, but because I can’t be there to observe him during trials.  It seems awful that not only will he be deprived of his Mama, but he’ll be deprived of food that he may have no FPIES reactions to, as well.

But I hate the thought of starting him on trials so early, when my FPIES Mama’s all say to wait as long as you can.  They’re right; kids with FPIES tend to have fewer reactions the older they get.  He’s more likely to fail foods now than he will be in 6 months.

I really don’t know what to do.

One thing we have decided, though, is how we will start trialing foods when the time comes.

Since Mr. Happy is a breastmilk reactor, we were originally planning to start him on foods that are already in my diet.  He can handle them through the milk, so they should be safe to eat, right?

Wrong.

Some kids will be fine with foods in their mothers’ milk, but they’ll react when said food is ingested directly.  Worse, though, is that after they react through direct ingestion, they often begin reacting to it through the breastmilk.

I’m down to only eating beef, potatos, carrots, salt, pepper, decaf tea, and stevia (the other foods on my diet were sacrificed to the fructose malabsorption altar!).  If he reacts to potatos, then there goes a MAJOR part of what is keeping me alive and producing safe breastmilk for him!  Not only that, but then ALL the milk (over 220 ounces currently) I have pumped for him would no longer be safe…and then what would we feed him?

So while I would prefer, in some ways, to trial him on foods through my breastmilk, I can’t take the chance that it may reduce foods in my already limited diet, and I can’t mess up my ‘safe’ milk by trialing a food he then fails because that pumped and saved milk will be most of what sustains him for those 10-20 days a month that I am away from home.

Besides, he went all the way to shock and hospitalization through my breastmilk; it’s not like I would be preventing another shock/hospitalization experience by trialing via breastmilk.

So instead, we’re looking at the spreadsheet of food reactions for FPIES kids and cross-referencing it with the low FODMAP’s diet foods to find the first foods we’re going to try Mr. Happy on when food trials begin.

We don’t know if he’ll have a problem with fructose malabsorption, but because his brother has MPI and FM, we’re going to be cautious and avoid high fructose foods at first in order to prevent confusing data from his food trials.  If he isn’t a FM kiddo, we’ll figure that out eventually.  No need to rush things on both fronts.

I really don’t want to rock this boat.  I wish I could just keep nursing Mr. Happy forever.  But I can’t.  Since I can’t do it forever, it makes sense to start his transition to solid foods in a way and in a time frame that means he may be able to avoid oral aversions and ‘issues’ with eating that can be commonplace if a child is not exposed to foods early enough.

I still don’t want to do it.  I still don’t know when we’ll do it.  But we’re talking about it, weighing our pros and cons, and trying to find the best solution for an impossible problem.
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OK, so this weekend we were talking about our kids current reactions. On Thursday, Mr. Charm managed to get two or three samples of chocolate at the grocery store before I could stop him.  I managed to dig one and a half pieces of chocolate out of his mouth, but I know he swallowed some first – at least half a piece.  Maybe more.  Sure enough, nasty diapers, bad attitude and sleep disturbances followed.

In two weeks that’s TWO instances of surreptitious fructose consumption by the little stinker.  Thank GOD this fructose malabsorption, while bad, won’t put him in the hospital!

Then I was commenting how Mr. Happy’s diaper rash (it was bad; it got to blisters and would NOT heal up) had finally cleared up almost overnight…and suddenly made a food connection.

I had been eating a lot of melon because it was about to be completely out of season, and realized that *I* may have a little fructose malabsorption going on.  The day after I would eat a lot of honeydew, I would wake up feeling fuzzy headed, with a headache, a bad nights sleep, and just feel lethargic and out of sorts all day.  Hmm.

With Mr. Happy’s diaper, it suddenly occurred to me that his diaper rash had come on just when I started eating a lot of melon, and would not clear up until about two days after I stopped eating melon.  (Took me a while to make the connection – did I mention I was fuzzy headed for a week?)

I don’t know if this is fructose malabsorption or FPIES (or something altogether new), but it’s clear that he has a problem with melon.  

Also, Mr. Happy is teething.  Has been for two weeks now!  This week, for three nights in a row, he was up every 1.5-2 hours ALL. NIGHT. LONG. and would lay there, wide awake, moaning at me!

I had gotten medications compounded for the boys, but was holding off on using them until I absolutely had to because of fear that they would react to them anyway.  Well, this seemed like an ‘absolutely had to’ situation, so I went looking for Mr. Happy’s acetaminophen.   

It has vanished.  I don’t know if we accidentally returned it to the pharmacy (they had to remake two of our medicines with different fillers and we exchanged the old for the new) or if Mr. Charm climbed up to the fridge and started playing with the bottle and left it somewhere strange or threw it away.  In any event, I can’t find it.

So on Friday, I called the pharmacy and asked them to make him a new batch at the appropriate dose for his new (heftier) weight.

Andrew commented to me that the ibuprofen they had made for Mr. Charm was of a strength and compound that would be safe for Mr. Happy, but to only give him 3 mL instead of 5 mL.

Yippee!  So, Friday night I gave him a dose at bedtime, and another dose at his midnight feeding, and for the first time in almost a week, we all slept well.  

Saturday, I gave him another dose around noon because he was moaning in pain again.

Later in the evening, we noticed that he had light eczema all over his body, and he had a nasty, gnarly poop that was very mucousy and stinky.

Breastfed babies don’t usually have stinky poop.

That got us debating on how long his poop has stunk; we both admit that his poop has had an odor to it for a while, but I think it’s a relatively recent thing (last 2-3 weeks) and the Geek thinks it has been stinky since he came off the formula.

This is important, because two weeks ago I let the doctor give him ONE vaccination.

So…is he reacting to the vaccination?  To the melon?  To the ibuprofen?  Or has he been slow-building to a reaction to my diet for the last two months?

Because my Mama’s on the message boards all seem to concur: the sour-smelling, stinky poop is a sign of a reaction.

So now what?  I can’t start food trials on him now, not with him reacting to something.  I’m even more scared to start food trials than I already was.

I wish to God that I could find competent, knowledgeable medical care for my kids! It would be SO GOOD to have someone to help me formulate a game plan for what we should do, instead of trying to figure it all out on my own and feeling rotten if it fails.

I really don’t know what to do…except, I’ve gotten recommendations from fellow FPIES Mama’s that there is a GI, an allergist, and nutritionist in Atlanta that all work together out of a single hospital as a team and are knowledgeable about FPIES.  So I need to try to get us an appointment there and fly the kiddos out to maybe, MAYBE get some good help.

I don’t know what to do in the meantime, though.

What would you do if you were in our shoes?