Our New Team – The Dietician

Tuesday this week we met with the dietician.  I honestly didn’t have high hopes, as – aside from one friend who is a knowledgeable dietician (and fellow FPIES Mama) – our experiences with dieticians has been lackluster.

In this case, I was pleasantly thrilled!  This lady knew about my kids issues, and how best to handle the dietary restrictions for the boys!

She matter of factly started with Mr. Happy, discussing his FPIES and how to introduce solid foods into his diet.  Our plan of introducing quinoa, then banana and broccoli was deemed a good start in her mind.  When we suggested eggs as an early food (based on the fact that we will hopefully be starting egg trials on Mr. Charm) she suggested we hold off for now, as eggs are such a highly allergenic food.  (Though, he did test negative for IgE’s to egg, so…we may proceed with eggs, anyway.)

I asked about Vitamin D deficiencies, as we haven’t been able to give Mr. Happy any vitamin D drops for most of his life, and she said that would have to be a specifically ordered blood test to determine his levels.

In the meantime, she suggested a brand of vitamin D that I know I’ve heard about from the other FPIES Mamas, as a just in case supplement.

She also recommended paying close attention to his iron levels in the current CBC’s that are being run.  If necessary, we’ll need to supplement his iron and again, recommended a ‘safe’ brand for us to try.  (Safe meaning aware of cross-contamination and relatively conscientious in practices, not that he’ll be fine on them no matter what.)

Then she gave us a sample of Neocate Nutra, an amino-acid based cereal-type food, suggesting we may want to use it for Mr. Happy.  I’m nervous about that, though, as Neocate formula is going to have to be a ‘trial’ for us at some point.  Just because it is amino-acid based doesn’t mean my son will not react to it.  Still, something to consider.

The Mama’s have often mentioned that many of them have their babies on probiotics.  They say it helps them to pass trials and keep the gut healthy.  Our dietician said that Mr. Happy is getting all kinds of good stuff from my breastmilk, so he probably doesn’t need a probiotic at this point.

I know breastfeeding is great for babies, but I also don’t want to discount the collective wisdom of the FPIES Mama’s.  So, the probiotic is still on as a possibility for us.  We may just wait and see how food trials go, first.

She strongly urged us to enter the wide world of Hemp for Mr. Happy; hemp milk, flour, well, hemp anything!  It’s up there with quinoa as a powerhouse food, and is the least allergenic of the dairy substitutes.

Coconut also came up; we were madly in love with coconut before Mr. Charm’s fructose malabsorption diagnosis, as coconut is one of the most versatile foods I’ve ever encountered!  She recommended coconut yogurt for Mr. Happy as a good food to trial, too.

Since discovering Mr. Charm (and myself) had a fructose intolerance, I’ve been concerned that Mr. Happy might have it, too.  Since the only way to know for certain is to scope him, and that’s off the table right now, I asked her if I should cross-reference the FPIES Food Survey one of the brilliant FPIES Mama’s put together (an incredibly helpful resource) with the Mayo Clinic diet we’ve put Mr. Charm on to find the ‘safest’ foods possible to start food trialing.

Her response?  No.  

Basically, dealing with FPIES is enough to deal with right now, and trying to limit an already limited diet is insanity.  Fructose malabsorption is about what quantity of fructose your body can tolerate, and the small amounts of food we would be trialing Mr. Happy on will be unlikely to cause any intolerance/malabsorption issues in him at this time.

So pass the apples and pears!

I was relieved by this suggestion at first, honestly, but after consideration I think I’m still going to at least start  the food trials with foods that are safe for both boys.  Mr. Charm can eat quite a lot of foods, and it will take 2-4 weeks for every new food we add to Mr. Happy’s diet.  That gives us a lot of time to run through foods that both kiddos can eat, and while that is happening, it will make meal preparation a lot easier on me (allowing, of course, that Mr. Happy actually passes those foods!).

That means it might be a year or more before I’m having to prepare separate meals for the boys, or maybe – hopefully – never having to do so.

But at least now I will not worry if Mr. Happy does not handle foods that are safe for Mr. Charm and we must trial foods that are UNsafe for Mr. Charm!  

All in all, for Mr. Happy she knew her stuff, had lots of good suggestions, and while most of our “game plan” hasn’t changed too much from this visit, I now feel a LOT more confident that we’re making the right dietary decisions for our sweet baby.

After running through Mr. Happy’s needs, we turned to Mr. Charm.  

Strangely enough, I felt more confident about how to handle FPIES than I did about fructose malabsorption, so I was eager to hear what she had to say.

She started by evaluating my “homework” assignment: a three-day food journal of everything Mr. Charm had eaten.  As a meticulous data person, I had added the calorie count for each thing, as well.

Much to my happiness, she said his diet looked very well-rounded to her, and that I didn’t need to ‘push’ anything in particular his direction.  Whew!  Good to know I’m feeding a balanced diet to my son, especially with the restrictions I work under!

However, she agreed that giving him a vitamin would be a good idea.  I asked her if she could recommend any, as every children’s vitamin I have found has fructose added, and sure enough, she could!  Even better, she happened to have a sample can to give us.  It’s a powdered vitamin to be added to his food, and based on his diet she recommended we give him a half a serving per day.

Unlike his brother, Mr. Charm is no longer breastfed, so she recommended putting him on a probiotic. 

My friend, the dietician, had mailed me a copy of the Mayo Clinic Fructose Malabsorption diet, and that is what we currently use to plan Mr. Charm’s menu.  Our new dietician read the Mayo Clinic diet, liked it, and said we should continue to use it as a guide.

(As an aside, another thing I liked about her was her willingness to read and learn more.  When I showed her the FPIES food survey, she found it very interesting and asked to make a copy.  She also asked to copy the Mayo Clinic Fructose diet.  I’m impressed by people who want to learn more in order to help their patients.)

The most important thing we took out of the discussion about Mr. Charm was something that we had forgotten in our struggle for an elusive baseline: he is intolerant to fructose, but an intolerance is not the same thing as an allergy (whether IgE or not).  Intolerance is about a level – how much can he tolerate?

So putting him on a completely no fructose diet is far too restrictive; his body needs to get some fructose in order to create the enzymes necessary to process fructose, otherwise, it will stop making the enzymes, and therefore make him MORE intolerant.

So she told us to start a food journal for him, trialing him on fructose foods.  Basically, keep feeding him like we are, but add ONE food that is ‘unsafe’ for him at least once per day.  Start at about half the portion we would normally use, and make note of how he reacts (if at all).

This will give us an idea of WHAT foods he can handle, and in what quantities.  And that will open up his diet exponentially!

For example, the Mayo Clinic diet says that evaporated cane sugars are on the ‘safe’ sweetener list.  However, we’ve noticed that whenever Mr. Charm gets any, he does not do well.  (Bad diapers, bad behavior, just…bad.)

This is exactly why she recommended the food journal; every body functions differently, and what might be safe for one person is unsafe for another.  So it’s time to get down to the nitty gritty challenge of winnowing out an expanded diet for Mr. Charm.

If I could pick anything, I’d pick coconut to be safe for him.  Like I said, I can do a LOT with coconut!  We’ll see…

I really liked this lady.  She’s a mother with children close to my sons ages, which created a sense of camaraderie, and she is very comfortable talking about complicated food issues.  She never made me feel like I asked anything ridiculous, and understood things that – so far – only the other Mama’s on the FPIES boards have understood.

I told her about Mr. Happy’s reaction to my hand cream, and when I said the word “Aveeno”, she interrupted with a knowing head nod and said “Oh, yeah, Oats – that’s an FPIES biggie.”

See?  No one else has gotten that!  Just like with the GI and the Allergist, it was SUCH a relief to talk to someone who “gets” it.

I wasn’t starting from square one with these folks.  We were starting from where we are, and that made the trip to Atlanta the best thing I’ve done for my kids so far.  

We have a support team now.  We have good plans in place.  We have a Team.

We have hope.

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10 Responses to Our New Team – The Dietician

  1. Rebecca says:

    Yay! I am so glad you found people who “get it”!

  2. Lesley says:

    Thank goodness for finding someone who can help and knows what she’s doing!

  3. Amity says:

    Been following your Atlanta journey and am so happy for you. It’s such a miracle/relief when the right team falls into place.

  4. Jeshyr says:

    I am so envious that you have an actual TEAM now. I have a great Dysautonomia guy at the moment and a great MCAD guy and even though they both work in the same hospital they’ve never even met and refuse to actually communicate for my benefit! They’ve spent most of last year both telling me that my low blood pressure is caused by things which are the other person’s problem … every single appointment all year they both told me they couldn’t help it was the other one’s problem, that’s 20+ appointments in total. It’s enough to make me crazy!

    And I don’t even /have/ an EDS doctor at the moment – the idea of having to find one that’s decent and then to try to convince them to actually communicate with my other two specialists is so overwhelming that I just can’t face it!

    • Mama says:

      That does sound awful! I hope you can find some decent help someday. I just read that something like 50% of people don’t follow doctors orders…think they could maybe figure out that this is why?? LOL Sorry you’re dealing with this, though. 🙁

  5. More comments I know! Sorry :/
    I just had a question about your fructose issues, were you and your son diagnosed with malabsorption or intolerance? As they’re two different things, the hereditary fructose intolerance is similar but quite serious as it affects the liver etc whereas malabsorption is horrible and annoying but not quite so bad. I just wonder whether it could be the HFI rather than the malabsorption considering how early it has popped up with Mr Charm.

    • Carrie says:

      No problem about the comments! I love them!

      We were actually never officially diagnosed with anything. The doctors didn’t want to do the test on Jed, because he is so small the breath test is often ineffective. I can’t take the test right now, because I can’t eat/drink anything that might wreck my safe milk for Zac. We’re simply going off of evidence at this point; Jed eats something with a lot of fructose – he gets BAD behavior, cloudy thinking, horrible diapers and feels icky. Jed doesn’t eat fructose – he’s charming and sweet and has healthy BM’s. As he gets older, we’ll need to investigate whether this is HFI or simply malabsorption. For now we’re just choosing to believe it is malabsorption (less scary) and either way, the treatment is essentially the same: limit or avoid fructose!

      So yes, that is something we’ve considered. But thank you for reminding me!

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