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alb


Marc Jacobs

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This sucks!
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Hi everyone.  I just wanted to update you guys on what's been going on lately here.  I feel like ever since we moved a black cloud has been following us.  Tons of stressful events have happened that have just kept me from feeling settled here.  For now I'll just focus on the most important one, which is my five-year-old son's health.  It all started this summer when we noticed he looked unusually thin in his swimsuit.  During that time period, we all had a cough as well for a couple of weeks but thought it was just the old pipes in the temporary apt. we were staying in.  I took him to the doctor, and found out that he was only in the 2nd percentile for weight and 19th for height.  This is called "failure to thrive."  The doc ordered tests for celiac disease and other bloodwork and also diagnosed him with pneumonia.  Then he got strep throat.  When he had strep, his body was so weak that he complained all the time about walking and climbing stairs.  Now he has a sinus infection.  He keeps getting sick and has repeatedly been placed on antibiotics.  Between all of the illnesses, we finally managed to get his blood drawn and they couldn't find anything to explain the failure to grow/weight loss (although the idiots at the lab didn't do all the tests requested).  So the pediatrician sent us to a gastroenterologist and an allergist, both of whom ordered more blood tests.  Meanwhile, he is not gaining weight despite my constant attempts to give him more fattening foods.  The brand new size 3T pants from Gymboree have to be returned b/c they fall off his waist.  To make everything 1,000 times worse, the skin prick allergy tests at the allergist revealed additional food allergies such as chicken, beef, and oats.  Chicken nuggets and oatmeal are one of the very few things he will eat, so this is a major life change for us.  I had to tell him today that he couldn't have his favorite instant oatmeal for breakfast and he started sobbing uncontrollably.  We have an appt. with a nutritionist but not for 2 more weeks and I seriously don't know what I will do until then.  My heart is breaking for my child, and I'm torn apart by worry every day.  Any help or advice from anyone who has experienced something similar would be great, thanks. 



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Chanel

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Poor guy. Poor you. The not knowing has to be awful.

Would he know the difference between chicken nuggets and veggie chicken nuggets? Some of the veg stuff is so freakishly convincing, even I don't want to eat it, and I'm vegan. Gardein is one brand available in a lot of stores now.

How does he feel about nuts, seeds, avocados? Those are high-calorie foods that are easy to digest. (Assuming no nut allergies...)

What kind of oatmeal does he like? What about a muffin recipe with similar flavors? (I'm thinking apple-cinnamon, maple, etc.)

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ayo


Coach

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Alb- I am really so sorry. I started to tear up a bit while reading your post. Poor Ben! :(
As a mother I know how you must feel. I pray the dr's can nail down the source of the rapid weight loss soon.

In terms of alternatives have you ever tried quinoa? You can prepare it like oatmeal and add the same flavoring you would to oatmeal. I like it in a crockpot - it makes the texture a lot softer- you can find a couple of recipes online. Can he eat wheat? Or rice? If so cream of wheat and cream of rice are pretty tasty too.

Su is right about some of the veggie chicken alternatives. I would say try those, I personally liked the morningstar brand ones.

Maybe those are some possibilities in the interim prior to you seeing the nutrionist.

By way of encouragement, I have a cousin that went through something similar but he was a bit younger than Ben. Turns out that because he was allergic to so many things it was actually making him sick. Once my aunt changed up his diet he started to do a lot better. He is now 14 and understands very well what his dietary restrictions are. The poor kid has never had a birthday cake because he is allergic to pretty much everything used to make the cake. He has learned to accept it though and doesn't really feel like he is missing much.
I am confident the nurtrionist will help you guys find alternatives that will work. There are definitely options. Big hugs to you guys!!!

-- Edited by ayo on Saturday 12th of November 2011 05:53:23 AM

-- Edited by ayo on Saturday 12th of November 2011 05:54:57 AM

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Marc Jacobs

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You're totally right...it does suck. Anytime something comes along and hurts our child/ren in some way that we can't just up and defend them...yup, major suckage.
We spent the summer and early fall in and out of testing centers as well, and I know all to well those feelings of heart break.
I know right now all you want is answers and a plan and the solution...and I've no doubt in time you'll begin to get those, but the waiting period can be insanity-provoking. The gals above me gave some great advice. Definitely look into alternative diets and find foods that have a similiar taste or texture. I suggest allowing him some choice as well...purchasing several varieties of a new food item and setting up a taste test (make it fun if you can with score cards or something) so he can choose some new favorites.
Just another suggestions...kind of offbeat...have you considered having a professional team come in and really clean your new home? I wonder if there's something (mold/mildew/etc) hidden away that could be contributing to his frequent illnesses.

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Marc Jacobs

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Alb, I'm so sorry to hear you and your family are going through this. I hope the waiting goes quickly and that you start getting some answers. 



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Kate Spade

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Keeping your family in my thoughts and prayers!! I'm a vegetarian but my bf is a meat eater and he'll eat the Morningstar nuggets and says they even taste better than chicken nuggets so I think that's definitely worth a try.

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alb


Marc Jacobs

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Thanks everyone for your responses, advice, and offers of prayer. They are all reassuring and helpful. I'm looking into each of the food suggestions - I've already tried the Morningstar Farms veggie nuggets (finally found them) and he liked them! Thanks again, everyone! I'll update you guys when I have more info. In the meantime, I am trying to learn everything I can about food allergies.

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Dooney & Bourke

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Alb, I'm so sorry to read that...Poor guy & you, as a mom, can't imagine how worrysome it must be! I know many people with children who have allergies of this kind: like chicken meat...(they give her turkey only) . So the girl is now 11, she knew from the very very young age what she should or should not eat, it's not a problem for her today, only for mom to watch eerywhere she goes: reminds teachers ( for trips), camps, bday parties...at a particular time it's just part of your life & this is how you do it....tough, I can't even imagine what goes through your mind these days.

I hope the docs will plan it out for you & find out the exact diagnosis - it'll be easier to deal with something concrete. I wish you & your boy much much health, energy & strength!



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Chanel

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Hugs , it broke my heart when ben cried b/c he could not have his oatmeal. My boys have food allgergies as well to dust/mold, but its not so bad where it life threating. When we started they had to cut out the foods they were alleric to for three months and than slowly bring bring  them back in (roation diet) they both have allgery drops weekly and on singular. Oh and I understand the picky eater my oldest  son is the same way and finding food he liked and could have is not so easy.

 

Keep strong and we are here if you need to talk



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Dooney & Bourke

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Hey Alb! I really hate to hear this. I can't imagine what you are going through, but send you warm wishes that things improve soon. Does your son have any issues with dairy? I've read a lot about the negatives of dairy, especially leading to sinus problems or other GI issues. On the other hand, if he tolerates dairy ok, then it is a great high fat food - cream cheese, shakes, etc.

Does he like peanut butter? Hummus? Do you have him on a probiotic?

This is a crazy thought, but I knew a lady who had apparently picked up some parasite from the water in a stream/river in Colorado that basically lived off of her and made her lose weight and stay sick all of the time. Since you have been abroad, maybe the water wasn't as safe? Has he been in any lakes, rivers or streams? Even here in the states? It took 6 years for this lady to figure it out...i guess it isn't very common, so none of her previous docs thought to check or treat that possibility. It took some rare, hard core antibiotic. Not your typical antibiotics. Of course, it is crazy to think of the rare things first, but they don't always factor into the doc's differential diagnosis until way on down the road.

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Gucci

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Maybe some cool dipping sauces will help make the chicken-less nuggets more exciting for him too? You might get him to then transition to turkey and other poultry that he is allowed to eat easier of the sauces are something he's familiar with.

And if you find some recipes that you like, have Ben help you make them. My SIL is a chef and used to teach children's cooking classes. She could get those kids to try all sorts of new food just by letting them help prepare the meal (and they were only 4 & 5 year olds.) Good luck with the nutritionist. I hope that he/she can help with options that your son will enjoy eating.



-- Edited by Boots on Tuesday 15th of November 2011 01:22:13 PM

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ayo


Coach

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alb wrote:

 I'm looking into each of the food suggestions - I've already tried the Morningstar Farms veggie nuggets (finally found them) and he liked them! .


 yay!! I'm glad he liked them. By the way, I keep thinking Ben is 3 LOL and Lucy is 5...gosh these kids are growing up FAST!!



-- Edited by ayo on Friday 18th of November 2011 01:23:35 PM

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