So, as most of you know Jonathan has been tested for and declared allergic to dairy, eggs, and peanuts. This allergy road is not exactly fun and can be lonely at times. After recent email chats with Head Lima Bean and her son's latest symptoms, I thought I'd give a little back ground on how we ended up here and what is next...
How did we know Jon had food allergies?
Jon had eczema from the beginning (or at least after a week or two of age). I knew it was possible that he would have some kind of intolerance to diary due to the degree that his eczema persisted. At the age of 4 months, I tried cereal with a touch of milk based formula mixed in. Jon's entire mouth was covered in red splotches and bumps. I knew then that I had to cut out all dairy from my diet and we switched him over to soy formula if we supplemented. His eczema lessened greatly and we moved forward with eliminating all dairy from his diet. At the age of 10 months he accidently ate egg off the floor (don't ask!) and he was covered in hives within minutes. So we added eggs to the list, but were advised by my pediatrician to wait until one year of age to do any testing. At one, Jon was skin tested and we added peanuts to the list. We are armed with an epi-pen and benadryl at all times. However, Jon does not seem to have a deathly reaction to any of the above items. He does not break out if he touches the products, nor has he ever had an episode where he stopped breathing.
What does he eat?
Jon is basically a vegan. He won't eat meat by choice, he can't eat eggs, dairy, or peanuts, therefore we feed him what we can... his daily diet consists of:
wheatberries & honey
cheerios
soy milk
any fruit... he loves fruit!
couscous with added veggies
organic spaghetti with added veggies
applesauce
toast with honey
vegan pancakes
tortillas
yeah... not a great diet.
So we add supplements:
whole food vitamins (2x's a day)
rice protein to his soy milk
flaxseed to his couscous and spaghetti
Does this help Jon and is he completely "allergy free"?
Well, honestly I thought he was... but skin tests are not conclusive so I am afraid we might be adding more to the list of allergens. Jon has been suffering from chronic diarrhea off and on for many months. Yes, his diet is high in fiber, but I cut out a lot of the fiber for weeks at a time, including limiting his sugar even more so and it doesn't subside. I've been told it is everything from simple toddler diarrhea to needing to see a specialist in Charleston. Also, his eczema is starting to flare again. I've done enough research to know that he doesn't take in any probiotics from his diet. We add those in as well with special "non-diary" probiotic supplements. However, they don't seem to be working. We cloth diaper at home to help with the rashes that accompany the diarrhea but I know it is an internal problem, not an external one.
So what is next?
Soy. We are going to see if switching to almond and/or rice milk and eliminating as much soy as possible from his diet will work. I've been doing a lot of research on soy and you can read one great article here. I've found I have to be careful as the internet is full of "articles" that contradict one another. So, we are trying new things and hoping one will work!
I welcome advice or suggestions if any of my readers have children with allergies. I would love recipes that your allergic children enjoy. The hardest part now is that he is a hungry toddler who is picky... that and I MISS cheese desperately :)!!!
9 comments:
Danielle!! I feel your pain friend! Griffin has the exact same allergies. We started him on soy milk when he was younger but eventually switched to Rice Milk after researching more about the soy. The annoying and confusing thing about food allergies is every time you think you've got it figured out it seems like something changes. The types of reactions change, triggers, etc. I probably wouldn't give him the almond milk just because our allergist recommends if they are allergic to peanuts to avoid all tree nuts as well because there is a very high likelihood that he will probably become allergic to the tree nuts down the road. That is what happened with Griffin. When he was first tested he was only allergic to peanuts. Two years later he is now testing allergic to the tree nuts too. I was very frustrated about the lack of variety in Griffin's diet for several years. I think it was just all compounded with the age and how picky they already are and then the lack of choices. On a positive note Griffin has finally (just recently) started trying other foods that he can actually eat and it has made it much easier. Before he was just too picky to even try things he could eat. Cheerios are a staple in his diet and the only thing I can get him to eat for breakfast. I've tried making him special pancakes and waffles and he wouldn't even try them. Maybe I'll try again now that he's getting less picky. Anyway, I'll try to type up a list of some of his favorites and email it to you and maybe that will give you some other ideas. Please don't hesitate to email or call if you ever need to vent or brainstorm! I know it's so frustrating for you! Now that I've written a book on your blog comments I gotta run! :)
Wow, you must be so frustrated and upset about his allergies!
Hey Dani,
I hate to hear Jon is having so much trouble!! I thought I would mention that a friend of mine from church had similar problems with chronic diarrhea with her son and determined it was a problem with glutens in his diet. He has ciliacs disease and all his symptoms were gone almost immediately after going to a gluten free and Kasin (sp?) free diet. Just a thought?? Hope things get better soon!!!
Well, I have no great words of advice but I do have some words of encouragement. At least you know that with his snacks he likes beach sand:)...I honestly have no clue who he could have gotten that from;) Love that kid!!!
Aunt B
Well, I have no great words of advice but I do have some words of encouragement. At least you know that with his snacks he likes beach sand:)...I honestly have no clue who he could have gotten that from;) Love that kid!!!
Aunt B
dani: it was great to meet you and jon last night! i'm thankful to have found you as a 'been there' resources and fellow allergy mama friend! g
Dani, I'm sure that figuring out Jon's diet is tough! I saw that someone else mentioned a gluten allergy (Celiac). I have done a little research on that and it came to my mind as well. I don't know nearly as much you do, though!
OH girl...I hardly know where to begin. Obviously, first and foremost I will be thinking about and praying for your sweet boy and as usual...praying for a cure for the crazy food allergies that seem to be growing among our children's population!
Please also know that I KNOW the LONELY feeling you mentioned...the feeling of absolute SADNESS knowing that you child cannot eat things that other children can eat, the sadness that occurs when we as moms realize that our babies are going to have to grow up faster than we want and deal with something that can at times be VERY TOUGH...all at a very young age...and the feeling of wanting to just "fix it".
Please know that I am a fellow mom with all of those feeling...and that I will be praying for you and for a source of support and encouragement!
To give you some hope...it does get easier in ways...and yet like Kelli said...there are always "new findings" that cause you to constantly be "on guard".
Know that I am just a phone call or email away...SERIOUSLY...and that I UNDERSTAND!!!
Love and miss ya!
Hello Danielle its Laura Leigh. I am so sorry to hear that Jon has food allergies. Paxton also has terrible food allergies. He is allergic to soy, dairy, peanut,peas and peaches. Whe he has a reaction his lips and tongue start to swell. Super scary! And he will also get the red spots on his face and his eyes will get real red and itchy. But, he does like ham, turkey, and hot dogs. He has to drink rice milk and they do make rice milk ice cream found in the organic section of the grocerey store. We also feed him grits, fruits and certain cerels and jelly sandwhiches. These are some suggestions. If I think of more I will let you know. GOOD LUCK!
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