PID related Allergy Mama

ABColeslaw

Hi All!  I haven't been on TB lately and I just saw this board.  My son has an Acute life threatening Multiple Protein Allergy, that is actually a form of Primary Immuno Deficiency.  Right now Asher has life threatening Allergies to Milk, Soy, Nuts, and Casein.  He is also allergic to Wheat and eggs, and tested positive for Shell Fish. 

Right now we're struggling with solid foods.  He isn't getting enough nutrients from his diet with mainly consists of Rice, Turkey, and Veggies.  We were told to hold off on food challenges for many fruits because they are worried about triggering oral allergy syndrome if we expose him to too much before his immune system in more mature.  For the most part Asher gets Neocate Nutra medical food and Neocate junior.  

I feel so limited in the food arena.  I feel like milk was a blow, but Soy is even harder.  Seems like there is soy in almost everything.  He is at an age where he wants to eat what we are eating and its causing temper tantrums.  

 Any advice or can anyone relate?

twoasone1

I am so sorry you and your son have to deal with that.  It is so hard.  My son has a disorder called Eosinophilic Esophagitis.  He is allergic to about 95% (or more, we aren't sure yet) of food.  He has a feeding tube, and his formula is also Neocate Jr. 

One of DS 'regular' allergies is soy, so I know what a pain that can be.  It is in everything and before DS I never realized that. 

DS wants to eat off of our plates right now too.  I try distracting him, and give him toys to play with at dinner time etc.  I won't lie though, we have ended dinner time in tears on multiple occassions.  Sometimes I think that when he is a little order and we can discuss things, maybe it will get a little easier.  Right now, he just doesn't understand. 

Anyway, welcome to this board and I look forward to getting to know you in the future.  Good luck with everything with your son!

ABColeslaw

Its really difficult right now.  I feel so bad.  He looks sad when other kids are eating stuff.  Like you, I'm hoping when he gets older we can talk to him about his allergies and some of that will get better.  

When you say your son has a feeding tube, do you mean into his stomach or the tube that goes down the nasal passage and into the stomach?  When Asher was younger and wasn't gaining weight the way they wanted, he fell of his growth curve, they talked about a nasal feeding tube...but we never ended up needing it.  

Also with your son's allergies are they life threatening?  I thought we had a tough list going, I can't imagine almost everything causing allergies.   

twoasone1

He has a Mic-Key button that goes directly into his stomach.  EoE isn't life threatening as far as we know.  It is more of a quality of life thing.  Food makes him VERY sick.  There isn't a lot of research right now, so from what I have read and been told they are unsure if there is a link between EoE and other causes.  Like could having EoE give someone a higher chance of certain cancers and other things like that. 

He does have a severe peanut allergy as well that is unrealted to his EoE.  His soy and egg allergy, also unrelated to EoE are moderate. 

I am so sorry that your sons are life threatening.  That has got to be so hard for you all. 

julandjo

I can relate as an adult going through an "extreme diet".  I was diagnosed with Celiac 15 months ago, and once I got gluten out of my diet, I started reacting to allll kinds of food.  Even in trace amounts, like if I inhaled cocoa powder or corn starch, or if a spoon that scooped rice touched my food.  I once bought a bottle of olive oil that was processed in the same facility as peanuts, and even that got me.  It's not life threatening, but it's extremely painful and lasts for 4-5 days.  For the past 6 months, I've only been able to eat 7 foods (chicken, beef, sweet potato, carrots, apples, blueberries, and olives/olive oil.  And sea salt/black pepper).  IT SUCKS.    

What has been the most helpful to me is to have my family eat what I eat, or very similar to it.  It's very alienating to eat completely different from everyone else.  What you'll also have to think about as your son gets more mobile, is the possibility of him swiping some food from the adults' plates.  He has no idea that that stuff can kill him, and kids are curious and QUICK.  You and your DH are going to have to have a heart to heart and see if you can eat what your son eats when you have meals together.

Yes, soy is in almost everything.  But not in unprocessed foods.  A big hit with our kids has always been homemade carrot fries and sweet potato fries - can he have either of those?  You can also use safflower oil and make crunchy sweet potato chips at home (the only kind I've found in stores is made on shared equipment with wheat).  I also found a recipe for skillet bread that can be made with just rice flour and oil (of course I can't find it right now).  My big treat right now is a smoothie made from frozen blueberries, cooked sweet potato, and a splash of ascorbic acid-free apple juice.  Sounds nasty, but it's the most special thing I get and it rocks my world!  This is a hard lifestyle, to be sure, but you WILL find a way!

ABColeslaw

julandjo:

I can relate as an adult going through an "extreme diet".  I was diagnosed with Celiac 15 months ago, and once I got gluten out of my diet, I started reacting to allll kinds of food.  Even in trace amounts, like if I inhaled cocoa powder or corn starch, or if a spoon that scooped rice touched my food.  I once bought a bottle of olive oil that was processed in the same facility as peanuts, and even that got me.  It's not life threatening, but it's extremely painful and lasts for 4-5 days.  For the past 6 months, I've only been able to eat 7 foods (chicken, beef, sweet potato, carrots, apples, blueberries, and olives/olive oil.  And sea salt/black pepper).  IT SUCKS.    

What has been the most helpful to me is to have my family eat what I eat, or very similar to it.  It's very alienating to eat completely different from everyone else.  What you'll also have to think about as your son gets more mobile, is the possibility of him swiping some food from the adults' plates.  He has no idea that that stuff can kill him, and kids are curious and QUICK.  You and your DH are going to have to have a heart to heart and see if you can eat what your son eats when you have meals together.

Yes, soy is in almost everything.  But not in unprocessed foods.  A big hit with our kids has always been homemade carrot fries and sweet potato fries - can he have either of those?  You can also use safflower oil and make crunchy sweet potato chips at home (the only kind I've found in stores is made on shared equipment with wheat).  I also found a recipe for skillet bread that can be made with just rice flour and oil (of course I can't find it right now).  My big treat right now is a smoothie made from frozen blueberries, cooked sweet potato, and a splash of ascorbic acid-free apple juice.  Sounds nasty, but it's the most special thing I get and it rocks my world!  This is a hard lifestyle, to be sure, but you WILL find a way!

The type of PID Asher has is hereditary and my husband has it to a lesser degree.  He pretty much eats stuff that Asher can have.  For now I am eating my regular diet, since Asher sits in his high chair while he eats.  I haven't quite squared with eating that restrictive of a diet when I don't have to.  I'm a very picky eater anyway, so its tough.  

magdusia

hi! how old is your son?  We had a huge struggle with solids from 12 months to 16 months.  At about 16/17 months old he started eating so much more (or perhaps i realized what i can give him and how to make it).  I did go to a nutritionist who helped me a lot! 

I couldn't agree with you more. the soy allergy is so much harder.  You can buy vegan food that does not have milk in it everywhere, but almost everything has soybean. sucks.

If you are interested, here are some tips i found work for my son and some are from the nutritionist...

* when making minute rice, use fortified rice milk (not water) for more nutrition. (and it tastes better -sweeter)

* make it fun with almond butter (you can use sunflower butter) so i started dipping almond butter into rice crisps and making little balls out of them or putting it between two chex cereals (this has been his lunch for months now)

* try avocados.  My son hated avocados when an infant so i didn't attempt it but she suggested doing a guacamole mix.. so i chopped up tomatos, onions, added lime juice and salt and he hated it. So i put it in a guacamole dish and put it on a chip and he eats 1/2 an avocado every single day like this. Good fats. 

* add "butter" or olive oil to EVERYTHING to fatten him up.  I use the red container butter that has no milk or soy. 

* add flaxseed meal to his oat meal in the morning

* i make pizza dough once a month and divide them into small balls and freeze them so from time to time i make him pizza using tomato sauce and Dayia cheese (and hide some veggies under the cheese)

 

those are just few that have helped me and that i can remember.  He's still eating earths best oatmeal for breakfast and my doc said keep giving it to him until he doesn't want any.  it really is hard.