Fi update

My daughter Fiala is now 19 months, and we’re going backwards…  I started decreasing her already super-simple diet, because she’s still having
problems, both digestive and skin.  I keep hearing my friend-the-doctor say, “No one is allergic to potatoes,” but I took her off of potatoes about 5 days ago, and her skin is the clearest it’s looked in months.  (She doesn’t just get eczema, she gets lesion patches on her face — it’s awful, because then we
have to fight so hard to keep them from getting infected, or dealing with
rounds of antibiotics when they do get infected.)

The bummer about potatoes is that it was the ONE “normal” carb that she
was — I thought — able to tolerate.  Potatoes are very portable, too, in all their various forms, which is very handy to be able to bring chips or french fries on the road, in a pinch.  AND, the bread I had been making 3-4 times a week for the last… three months or so has potato starch in it, so I stopped making bread, and have returned to farinata.

She can have buckwheat, quinoa, and oats.  She can have lamb and turkey.  She can have quite a variety of veggies (almost all in the mustard family — includes broccoli & cauli).  The only fruits I’m confident she can have are dates, blueberries, and cranberries.  She does alright with most beans, especially garbanzos and black beans.  That’s about it.  She can have a few herbs, but I’m hesitant to try ANYTHING new, no matter how seemingly insignificant it might be.  Making dinner is like, “I wonder if she can tolerate sage??”  It seems like everything, no matter how tiny, can set her off into tummy upset (she even tells us now, “Ouchy poop!” ) or super-itchy, bloody skin lesions.

I keep trialling things that I think are simple — like apples, pears, chicken… sometimes, it seems she tolerates stuff, and sometimes not.  Like right now, I’ve been trying apples for the last couple of weeks — diluted plain apple juice in the morning, unsweetened apple sauce, fresh apple chunks.  It appears that she might be all right with apples, because her skin continues to clear… so it seems that potatoes are the culprit, not the fairly new-to-her-diet apples.  It is very confusing at times, because even though her diet is so simple, our thoughts are, “Is she reacting to the pear she had this morning?  Or the chicken she had yesterday?  Or is it something different altogether??”

No corn (which would be SO helpful!), no wheat/rye/barley, no rice…

We’re actually rather without a doctor, because our family doctor dropped us when I decided to stop vaccinating, and I’m hesitant to call my friend
who is a doctor (in another state) because she said so decisively, “NO ONE is allergic to potatoes!”  She has asked me many times to “just” feed her more food, but if we do, we pay the price!!!  I’m not trying to rebel against her advice, but it’s simple to command, “Try this food!  Feed her some more!  She just needs a more well-rounded diet!” yet it’s not easy — at all — for us to carry out those simple instructions.  Tears, “sad skin,” “ouchy poop,” sadness, confusion, and frustration all the way around…  I’m not TRYING to “go it alone” — I would so relish insightful, caring, directive, helpful advice from a doctor, but I really feel alone in her care right now.

My husband has been encouraging me to scale back Fiala’s diet, down to the simplest few things that we know are safe.  I prioritize his wisdom and and advice, but at the back of my mind, I know it’s in conflict with the medical advice I’ve been given regarding our sweet daughter, and that’s hard.

I do feel, on one hand, VERY encouraged about her positive response to removing potatoes, but removing them has some pretty serious ramifications, and makes her even more difficult to feed, and that is discouraging.

~sigh~

On the other hand, she is such an absolutely delightful little girl.  She’s a joy.  Overall, she has a very happy, peaceful personality, and she loves to giggle and play.  She is a blessing to everyone in our family.  She is sweet.  Her eyes are so big and round and grey and beautiful.  She can be very determined, but she’s not stubbornly willful like three of my four other children, which is a blessing to The Mom.  She learns quickly.  She is so cute!  Even the way she runs is cute.  She’s solid — not quite chunky, but definitely thicker than Audrey ever was.  She’s ever hopeful.  She’ll ask about something, nodding her head emphatically as she speaks her word or two, willing the other person to say, “Yes, sweet Fiala.”  She is quite brave and daring.  She loves slides and swings.  Everyone in our family adores her, no one ever tires of her company… she is absolutely refreshing.  Precious girl.

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About Karen Joy

I'm a partially-homeschooling mother of six -- 3 boys ages 19, 17 and 15 years old, and three girls: 11, 8, and 3. I like birding, reading, writing, organic gardening, singing, playing guitar, hiking, the outdoors, and books. I very casually lead a very large group of homeschooling families in the Phoenix area. I have a dear hubby who designs homes for a local home builder and who is the worship pastor of our church. I live in the desert, which I used to hate, but now appreciate.

Posted on May 25, 2010, in Allergies, Medical Stuff, Sad Things, The Kids. Bookmark the permalink. 17 Comments.

  1. I am just so sad. That precious little girl and her caring mother need someone to come along side of them and bless them with some sound counsel and advice for where to go from here. This is my prayer for you!

  2. I am so sorry you’re dealing with the increasingly more common medical advice vs. real life conflict issue. 😦 People, even medical professionals (even other people with food issues!!), simply do not fully understand the nature of food sensitivity, whether it’s an allergy (or group of allergies) or intolerance, what causes it, and how different things effect different people.

    I am also sorry that your doctor was small minded about the immunization issue. I understand the stress of being seen as non-compliant, but at this point, the proof is in the pudding as far as the food issues. Martin probably has a saner, more realistic perspective than you, your former doctor and your doctor friend; he sees all that you’ve done and are doing with Fiala to get and keep her healthy, not to mention all that you do for the other kids. When Fiala has a reaction, he sees what you are seeing but without being worn out from it – and he sees what a heavy load you’re carrying. Doctors who only hear about it and see pictures might have an idea that things are uncomfortable for her, but you’re living with it and working your tail off to reverse certain food induced trends. It’s so easy for doctors (even doctors who are friends) to say, “Give ____ a try.” But they aren’t the ones who deal with the aftermath of trying A, B, or C.

    I read an ignorance based article biased against people with food intolerances the other day. The conclusion was basically that the only way to know if someone has a true food allergy is to do double blind food trials to see if they react. Whose going to volunteer for that?? I know I wouldn’t. Most people have too much going on in life to take the hours, days or weeks it might take to get over a reaction like that, just for the medical professionals in their lives to see for themselves that you’re not making this stuff up as you go.

    Imveryho, you are safe resting in God’s providence in the husband He gave you. I know that it’s hard to go against what “experts” tell you, but poor Fiala’s situation has been so hit or miss and so difficult for you to get under control that I’d listen to Martin and forget about the opinions of others who don’t live with you.

    Hugs,

    Esther

  3. I’m intolerant to nightshades -potatoes, peppers, tomatoes, eggplant -so I think it’s very likely that Fiala has a problem with potatoes, if not the rest of the nightshades. I’ll be praying!

    • I’ve wondered that myself, Tahlia, if she might have trouble with all nightshades. I already know that she can’t have tomatoes, and knew that both are nightshades… And, oddly enough, I’m mildly allergic to eggplant (OAS) myself. Would you mind telling me what your intolerance symptoms are?? I know some food-related symptoms can be… unpleasant dinner-time conversation, so if you’d rather, shoot me an e-mail! mailto:karenjoy@onlysometimesclever.com

  4. Karen,
    I’m so sorry to hear about the struggle. I was just talking to someone this weekend about a friend that had to rotate the diet because if the child had something too frequently there would be a problem…but if it was ie every three days…the child’s body seemed to do ok. Have you read or tried anything like that?
    Blessings!

  5. Laura Kidman

    I was coming to write almost exactly what Esther wrote… thanks for doing the work for me, and so succinctly, Esther. I concur with all of it. No matter what the “experts” say (I know they mean well), but the truth is, they don’t directly/firsthand SEE the ramifications of trying new foods. And, really, is it worth it to you and Fi.. .really?? It doesn’t sound like it. Stick with your instincts. You clearly have a good grasp of her reactions (apparently, she does, too!!), and already question certain foods. I KNOW how difficult it is to have family members on an extremely limited diet.. and what a royal pain in the keister it can be.. not to mention the time AND energy consumption it takes to stay on top of it… but in the long run… it’s less than dealing with all of the reactions and frustration. True?? Trust yourself!!

    Sending up a prayer for patience for you, and healing energy for sweet, little Fi.

  6. Every night when I pray for Abigail’s digestion, I also pray for Fiala’s– That the entire system would be healthy and robust and that it would work together in harmony with every other system in her body, nourishing her and causing her to flourish. So sad to hear that we aren’t there yet! Abi and I will keep at it.

  7. oh mama I feel your pain! I’m still on my funky diet (as is my son) and I swear he seems worse more than better! the onyl difference is that he is almost ALWAYS fussy, whining or crying. he never sleeps and so forth. I feel SO bad for him. I feel bad for us! he’s so hard to deal with b/c I gott admit sometimes it’s hard to muster up sympathy for someone who seems so angry all of the time! but i know it’s not his fault. I’m just glad he isn’t in one of those families that think hes needs round the clock spankings to keep him in line *eyeroll*

    anyhow we’re thinking of trying “threelac” have you given it a go? Candida overgrowth seems to be very much in line with your daughter’s issues. could it be worth a try? I’m looking into it myself right now.

  8. newbeginnings09

    I agree with the others. I’m so very sad for you and sweet Fi. Frustrated with your dr for dropping you due to lack of vaccinations (here in NC, if you cite religious reasons, they can neither deny you nor question you — worth looking into for a new ped!).
    I think your instinct as a mommy and your dh’s as a daddy are more important than a well meaning but obviously not there doctor friend. If the dr isn’t willing to hold Fi all night when she can’t sleep because she’s in pain, she’s not totally vested in this.
    Btw, my son is not just allergic to tomatos, but HIGHLY allergic to them. He literally blisters — red raw welts on his bottom — if I feed him anything with tomatos or tomato sauce.
    We’ll continue to keep you all in our prayers, that an answer will manifest itself soon.
    Ade

  9. One other thought, for a little perspective the doctors may not have: most children througout the world today and throughout history have grown up on fairly limited diets. Food variety is one of the benefits of our vast wealth. And while it is nice, it is certainly not necessary for raising a healthy child.

    • Yes, Erin, I have read analyses of studies (though it’s been a while, and now I can’t find what I’m looking for) that show that people have the best digestive health, and the fewest food-related health problems when they eat food that is indigenous to the land of their genetic ancestry. Food for thought, that!! The US is a melting pot, for which I am immensely grateful, and I wouldn’t be alive if it weren’t for immigrants of various ancestries! However, the whole “melting pot” thing, combined with our abundance of wealth and variety of food, is wreaking havoc on American health in many ways.

  10. Just so you know *I* am allergic to potatoes, that’s confirmed with allergy tests. White potatoes especially, red potatoes I can tolerate if I don’t eat to many of them, and blue potatoes I can eat almost all the time. You may want to try different varieties of potatoes. I have problems with many things in the nightshade family including tomatoes and eggplants. Though oddly, I can eat the green peppers and tomatilla’s. Often if you are allergic to something that strongly, the whole family should be avoided. Here’s a page that tells you what foods are in the nightshade family.
    http://www.whfoods.com/genpage.php?tname=george&dbid=62
    You may also think about finding out what particular families the foods that Fiala particularly reacts too, and the ones she can tolerate. Then sticking to the ‘good’ families and see if that helps.
    I’m so sorry that Fiala’s on such a limited diet, but having a healthy happy child is a blessing! At least her problems are fixable and she can talk enough to let you know when there is a problem! Good luck on finding a new doctor that doesn’t think they know everything and insist you agree!

  11. Two of my sons were very allergic to potatoes–even the tiniest bit of starch would send them into terrible rashes–until God healed them! They were sensitive to all nightshades which can include some homeopathic remedies (such as belladonna), too.

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