January 31, 2013

Trust Your Instincts

Have you ever gotten a positive diagnosis to something you didn't want and wonder why they can't call it a negative when clearly that's what it is.  Well yesterday Tagg tested positive to several things at the allergist including dairy, egg, and peanuts.
The positive?
We have an explanation and a plan.  I do well with that.

It explains that my gut feelings were right and there is something wrong with my baby.
Underneath it all he is still my laid back sweet little man.  The crankiness, clingy-ness, fussiness, and sleeplessness were the symptoms winning.  He couldn't tell me what was wrong with him but the scratch test could.  My intuition told me to search every avenue at my disposal to find an answer to what has been plaguing him and thus our whole house.  And I'm so glad that I did.

So yes, it seems we'll be joining the ranks of thousands of y'all that have to ask, "what's in that?" when we go out to eat and I'll become the mean mom that says no to sharing snacks at the playground.  Just in case.  No more milk, cheese or yogurt.  Ice cream treats, cupcakes, and chocolate?  Nope.  And let's not even talk about the elimination of half and half, sour cream, mayonnaise, and butter from cooking.  To be honest, I'm most nervous about cutting him off cold turkey from his beloved milk bots.  But his formula is milk based and has to go.  We're doing total elimination.

I feel like we've been inducted into some sort of secret society.  And those unfortunate enough to be included all share a burden of needing to monitor their kids or themselves that much closer.  Like having two kids so close in age wasn't already challenging enough.  Like doctors visits and physical therapy didn't already eat enough of my time.  But I'm going to be an expert at this.  I already grocery shop out of three different stores and will happily add a fourth to my regime if it means keeping alternatives in our house.

Are you in the club too?  Tell me about it.


On the flip side, sometimes you get a negative answer that is oh so positive.  
We got just that at our appointment on Tuesday at Children's Hospital.  The specialist confirmed that there is no apparent underlying cause for Tagg's delays and that continued therapy and encouragement really are our best avenue for improvement.  I'm okay with that.  I'm okay with helping him for as long as it takes and fielding the "how old is he, is he walking yet?" questions.  Answer:  No, he's not standing and can't even pull himself up yet.  How old are you, are you working out yet?  
Because those come at every turn, but I'm ready for them.  And I will be his voice until he has his own.  I know there are many worse things that could have hit our household and many thousands of children are suffering far worse than mine. There are mothers that will continue therapies of all kinds with their children for years with little results.  But it's not a contest.  This is just our story.


45 comments:

  1. Beautiful Julia what a heartfelt beautiful post. And what a great attitude about the allergies. At least now you know some of the under laying causes. Stay strong. You are a good Mama, trust in God he has a pan.

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  2. WOW. I'm inspired by your vulnerability and your positivity. I just whispered a prayer that God will continue to give you guys the strength that you need. Hope your day is a good one!

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  3. Avid reader, don't comment often... I have two boys with peanut allergies. They are 10 and 12 now, so in one sense it has gotten easier, but they are now out and about without me more! (I want to make them wear signs that say please don't feed me, but they don't like that idea!) there is a great egg free dairy free cupcake recipe on the Martha Stewart site. Really really good :) And sun butter is our friend. Please email me (and I'm happy to give you my phone number) if you want to chat! Gabi (dot) Rogers (at) me (dot) com.

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  4. My oldest son has a peanut and shellfish allergy. I feel like these might be a little easier to deal with then dairy. But, you will quickly adapt and it will become second nature to substitute.

    I am also taking my 14-month old for the scratch test on monday for the same reasons as you mentioned...I just feel like the fussiness and the bad sleep habits are coming from something. I am almost hoping we figure out an allergy so that we can help her feel better!

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  5. Love this my friend! You are such a wonderful strong mama, and that makes me love you even more!

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  6. I switch my son (almost 18 now) from regular milk at bedtime to rice milk and he never balked once. Maybe worth a try. Dietary changes are so hard in our prepacked world. I know from my own frustrations with a limited diet but once you get in a groove it will be as easy as before you had to read every label.
    So nice you know how to make the little guy feel better now.

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  7. Bless his heart, and yours. I love your response to the walking question. Hang in there!

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  8. You have a wonderful attitude. I am with you on the knowing and making a plan, that makes everything better! Soon it will be second nature.

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  9. While I am sorry that you have "join the club" I am happy that you know what is bother Tagg. My daughter B has celiac disease (so no gluten at all) and she also has food allergies (fish and shellfish). She did out grow allergies to dairy and eggs. My youngest son is allergic to eggs, tree nut and peanuts. There is a lot that is on our do not eat list, but I am getting better a tweeting recipes to meet our needs. You have a great attitude and I am sure you will master this challenge in no time!

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  10. We are ALL pulling for you! Team Julia - you CAN do it!!!

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  11. Oh my sweet girl, you have written one of the most beautiful and open messages about the difficulties of "issues". So well said, gotta stay positive. You know I'm always here for your texts :)

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  12. In the club. Noticed something off with one of our twins and finally had him diagnosed with allergies via scratch test at 9 months. More allergies diagnosed with blood test at age 3. Twin brother - nothing, no issues. Our 3rd child has food allergies also, but not the 4th. You learn quickly and we're lucky that while the wrong food will affect our two boys, it will not kill them - so we consider ourselves fortunate. The good news for long term, is that sometimes they grow out of allergies. Our allergic twin was at one time not permitted to eat: milk, nuts, soy, wheat, seafood, and eggs. Around age 5, we (carefully) tried and have been able to add more back and at this point (age 10) he eats everything except nuts and shellfish - the kid actually enjoys other seafood that he couldn't touch for year. There's hope!

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  13. Hi! Totall stalker here but I'm ready to chime in!! Our little girl Lucy is not walking yet either. I felt like I was reliving our story when you talked about sweet Tagg. By her first bday, she was not pulling up or crawling. Not even sitting herself up. Started crawling around 13m and cruising at 17m. Now we are going into 19m and she cruises and take about 4 steps unassisted, if provoked. Our pt ordered sure step Aop's for her to strengthen the ankles. No rhyme or reason on why this is happening. She does have a very very small foot.
    Also, the hubs is deathly allergic to all diary.
    Email me if you have any questions! ajstadiem@gmail

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  14. Sorry to hear it, but maybe, just maybe, these dietary changes will also help with some of the developmental delays? These things can be mysterious. My daughter has an allergy to tree nuts, and sesame seeds also popped up on the report, but I didn't give that much thought beyond making sure we never had sesame covered buns or bread, etc. One night over at my Mom's I was hell-bent on getting my kids to try new things and insisted they both have some of the pita chips and hummus that were out. One trip the the emergency room later, and we know very well that hummus contains ground up sesame - an ingredient called "tahini", to be specific. Talk about wanting to slap yourself!

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  15. I was so hoping and praying this would not be the case. No one wants their child's life to be more difficult in any way and food allergies can certainly present their challenges both safety wise and socially. That being said, we live a very normal life dealing with all of the above allergies. My almost 5-year-old is a sweet, normal boy. We are just extremely careful about what he eats (pretty much nothing we don't cook or buy with very few exceptions). It is our normal now and it will be yours too before you know it. You know that I'm here for you to be a resource for anything and of course, just to vent (b/c trust me, you'll need to do that occasionally too!). Also, per mama dean's comments - kids do grow out of allergies! We are growing out of Milk. 80% of kids grow out of milk/eggs and 20% grow out of nuts! I, of course, pray regularly that my son will outgrow his allergies and will add Tagg to my prayer!

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  16. Hi-- I wanted to reach out to you and tell you about my son -- very very similar situation! Ironically, I just did a post about him and a fundraiser for FoodAllergy.org. Please read his story linked at the bottom of my fundraiser post. You'll find a link to his college essay. I hope it inspires you.
    http://lekaliainteriors.blogspot.com/2013/01/a-pillow-for-peanuts.html

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  17. Your positivity is inspiring! How lucky Tagg is that his mother is such a fighter and has such an incredible attitude!

    If you don't mind, I'd like to ask about the specialist you saw. Was it a developmental pediatrician? We are looking in to making an appointment for my daughter due to her speech delay. We've already seen the state funded therapist who is great and told us to continue therapy and there will be improvement but I think I'd like to get another opinion, just to make sure this is not something to be more concerned about.

    Thank you for being so open about your situation. It helps us mamas who are going through something similar feel so less alone!!

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  18. Oh, and on a brighter note, gharadelli (totally spelled wrong but I'm sure you know what I mean) makes a non dairy, to die for chocolate chip. In the baking section of stores, semi sweet, and we eat them out of the bag like m&ms. Good chocolate does not have dairy. Cocoa butter is not dairy...it's cocoa beans that have been mashed or "buttered" :)

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  19. Just reaching out to give some virtual support. Sorry to hear about your son's challenges. I have three kids and the youngest has a plethora of food allergies (dairy, eggs, all nuts and more). If I have any advice to share, it's to keep in mind your daughter's meals. Sounds strange but I've gotten so good at deconstructing meals to accommodate my FA (food allergic) child that one of my non-FA allergic kids has become a picky eater as a result. Food has become simple (no sauces, no smothering with cheese, etc) and now she won't eat what she used to gobble up.
    Good luck!!

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  20. Your strength and vulnerability is inspiring. What a wonderful role model for your children. Thank you for sharing. I am a first time mama who has been struggling with some serious sleep regression. I first noticed it when solids were introduced and am certain that my sweet girl is allergic to something. It has been frustrating finding answers, but mamas like you remind me to trust my gut. Thank you for all your fabulous style and mama tips!!

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  21. Julia
    I am so glad that you found the help you needed with we one
    and understand how difficult it will be.

    You are so right about trusting our inner voice, that intuition we have.

    Love and hugs,
    Karena

    Art by Karena

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  22. my first born did NOT walk until she was almost 17 months.. my second child had excema so bad we did the elimination as well and it got better..you have got to buy this product and you can thank me later when his skin is soft and smooth Dermamud by AHAVA.. Ulta, Sephora and some DEPT Stores carry it.. a little goes a long way..as for the 3rd same thing as number 2..the baby still has flare ups in the winter and pool season..Ahava to the rescue!! As for the "slow" first one 11th grade top 10% of her class in the Internanional Bacc Program and a Varsity Tennis player..how is that for progress.. just let him grow in his own way..like my doctor said..what's the rush mom??

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  23. I've been following your blog for a while and love it. I appreciate you sharing your struggles. Glad to hear there is nothing serious regarding his development delays. I get so tired of the way mom's feel the need to compare our children to others, and if they don't keep up, then there must be something wrong. Or they need a "label". Let kids be kids. Every child (barring a serious issue) does things when they are ready, my mom always reminds me that her mom didn't talk until she was 3. Guess what, she turned out perfectly normal. God bless you!

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  24. Not to sound too promotional, but if it helps, I'll be glad I said something!
    I have a business called The HopeFULL Company and our mission is to help people who have difficulties with eating whether it is due to allergies, picky eaters or a health condition (or even morning sickness!). We have a couple of kits that we offer that come with the recipes and tools to make whole-food frozen pops. Your "no more ice cream treats" comment made me think of one of my favorites ~ Tropic Treat. It is a blended combo of avocados and bananas frozen into a pop and tastes just like ice cream. :-) All of our recipes can be made dairy and gluten free.
    If you're interested you can google BellyFULL Kit.
    Good luck!
    Stephanie

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  25. Julia, so sorry to hear all this. I had really bad allergies as a child. Was allergic to peanuts, chocolate, corn, milk, etc. and that was in 1980. There was only ONE candybar I could eat. Wish my mom was still on earth so I could ask her for some tips to pass along to you, but you have so many more resources & options. Also, I outgrew almost all the allergies by 9 yrs old. Allergy shots do work! feel free to email if I can help. Ashley

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  26. Julia -

    Love your blog...specifically the open-ness and honesty in which you write. I don't blog and don't often comment, but felt compelled to do so today. I also have a number of food allergies...avocado, barley, eggs, lemons, oranges, peanuts, rye and more. Reading EVERY label and asking high-maintenance questions at restaurants is part of my daily life. I won’t lie…it's a pain (for sure), but you'll soon find that in reading labels, you will become more aware (and selective) of the foods that you purchase. And, Tagg will feel SO MUCH better! Kudos to you for taking him to the allergist. You are an absolutely fantastic Mom. This is a new challenge, but I promise you can do it!

    Kristi

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  27. I'm so happy for you that you have answers now, and a clear plan of action-I bet that in itself is a big relief! We did several months of speech therapy with our 2.5 year old and eventually after tons of work at home and weekly appointments, it paid off and he never stops running his mouth now! It was hard being around other moms who's kids were talking up a storm and mine was still grunting and pointing, but we got through it! Gosh, between your and Natalie's posts this week (don't you love how I'm on first name basis with you all and have never met you? Daily reading into someone's life makes you feel like you can call them by their first name I guess!), I feel so much better, just nice to relate to other normal girls!!

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  28. Oh goodness! Well, at least you have knowledge and in that knowledge comes confidence and assurance going forward. I, too, have been trying to cut out dairy and my saving grace has been almond milk. Just a little something, but hope it helps!

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  29. This is a great way to learn about different options. I have been
    drinking soy milk for years. I had a friend that had a baby very late
    in life, while our families were on vacation, her new born was having
    trouble keeping his formula down. She tried giving him my soy milk (one
    of the doctors suggestions). She never looked back. There is a sweetened
    version and a non sweetened. I just switched to coconut milk for fun. Like
    it. In Martins or Giant, you can find it in the organic section and in the dairy!
    Also in the organic section you can find Vegan cheese and mayo, no dairy, no
    egg.

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  30. Praying for you and you learn to navigate this new path and for your sweet Tagg that he would quickly feel better and that he would continue to make strides. Your attitude and outlook is wonderful!

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  31. Beautiful post. Your babies are so blessed to have you for their momma. You are so fabulous having such a positive attitude. They say that is half the battle. I guess I know what you will be pinning ;)))))

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  32. I am lucky that my children do not have allergies but my niece does. The sweet little girl is lactose intolerant, allergic to red food dye, wheat and more. She also is allergic to polyester and feathers! She had to be potty trained at 14 months because she broke out in a rash from disposable diapers. My sister in law had to give away her down feather sofa and pillows because whenever my niece sat on or near she would start to wheeze.
    She takes a lot of medication but is a wonderful little 5 year old and believe me she adapted to everything fine. Now that she is reading she reads the labels to see if its okay for her to eat

    Good luck. Having an answer brings some peace. Glad to hear that Tagg will be fine with therapy.

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  33. It took us 15 months to fully diagnose the issues with our little man. No beef and no milk products for us as well. It's tough but very doable. I feel like we eat better as a family because of it. hang in there.Its overwhelming at first but it becomes your norm.

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  34. hey pretty lady! I miss ya! Are you on instagram? If you are let me know where to find you or you can find me at @asweetsoutherndrawl xoxo

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  35. Oh dear, thinking of you and your family and especially little Tagg. I hope you're able to resolve everything and have peace in your heart during the process.

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  36. I have a very good friend who's had food allergies his whole life and at 30 he's out grown a lot of them. I'm talking all of them as a kid nuts, soy, dairy, gluten, eggs, fish etc. To be honest I never even knew about his allergies for the first few years I knew him because he just never made a big deal out of it and he will tell you he doesn't miss anything because he has no idea what it tastes like anymore. For instance he no longer has a dairy allergy but doesn't like any dairy because he hasn't eaten it his whole life so he doens't feel like he's missing out on anything. I hope that makes you feel better! His mom basically just learned to cook the meals she always had for the rest of her family but would make him a special dish and it was never a problem.

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  37. I commented on your last post about the allergy testing. We never had allergy testing but dairy allergies run in my family and my son had ear infections, eczema, and MAJOR spit up. And fussy! I could kind of tell his underlying personality was happy, but at some point the fussy would just take over. I eliminated dairy from my diet when he was 6 months old and it was like magic! Now that's the only one we had, but I found that it was not bad after a while. I loved coconut milk and almond milk SO MUCH better than rice or soy milk. Also had been told soy milk has a lot of hormones (my uncle had prostate cancer and was under medical advice to avoid it). There is coconut milk ice cream, which we did for a treat. Soy yogurt is gross but he didn't know any different :). I used to cook a lot of dishes with lots of mixed ingredients and I got down to simple basics -- well cooked and seasoned milk, veggies, and fruit. Less "filler" foods (ie biscuits, cornbread, and cheesy casseroles). Apparently there is even soy cheese out there? which we never tried. The good news is, these things are readily available now (unlike 20 years ago) and most kids outgrow dairy allergies by age 2. C. was 2 1/2. If we gave him dairy before then, he'd vomit. Poor kid licked a dairy queen container he'd dug out of the garbage, he wanted ice cream so badly. But now he can eat any dairy! :) It will get easier to work around and hopefully will be gone altogether before too long.

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  38. Julia- I'm sending you a big virtual hug today! I have just scrolled through these comments and WOW! what a support group you have! It looks like you have been great info. I would just like to add that my daughter (who is 10) has a peanut and cashew allergy along with eczema and asthma that often goes along with allergies(oh goody- right?)I know it all seems like a lot to take in especially with a dairy allergy.I think someone said it already, but it does become manageable as you go along. You and Tagg are in my thoughts and prayers! Feel free to email me if you have any questions. I would be happy to share any info you might need! xoxo tippimace@gmail.com

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  39. I'm a long-time reader, never commented, but I love your blog. And I've been there on exactly the same combination -- dairy, egg, and peanut -- with my first son. He's now 7, and he completely outgrew dairy after 3 and egg by around 4. He's still allergic to peanuts, but that's actually a fairly manageable allergy (although can be scary if he is exposed) because they're not in everything the way dairy and eggs are.

    Anyway, I'm sure you don't need a bunch of unsolicited advice, but since I was so overwhelmed by the first shopping trip, I'll shell out a couple of random kid-friendly food ideas. Whole Foods would have most/all of these, but I can find many at my local (slightly nicer-than-usual) grocery store or even at Target.

    Vans waffles -- several varieties are egg/dairy/nut free and pretty tasty

    Bell & Evans chicken nuggets -- yum! Taste like a healthy Chic-Fil-A nugget (but not cooked in peanut oil, as CFA nuggets are). We ALL eat these and like them.

    I.M. Soy butter as a peanut butter alternative -- if you can find the honey-flavored with the yellow lid, it's especially good, but even the plain creamy version (blue lid) is what we use most of the time.

    Pillsbury Crescent Rolls -- can also make into cinnamon rolls with some brown sugar and cinnamon for a treat when others are having donuts! I know they pop from a can so are kind of yuck, but they taste good and my kiddo liked them!

    Margarine -- Smart Balance has a no-dairy variety if you read labels carefully, as does Fleischman's (theirs is corn oil based). Whole Foods would have some other choices.

    Yogurt (soy) -- the "O'Soy" brand was the only kind I found that I really liked the taste of -- tasted like normal to me.

    Soy Milk -- We liked Soy Dream -- used the regular in cooking, but I let him drink the Vanilla (or half-half). It's actually pretty yummy, and he loved it. When we first started, he liked drinking from the milk BOXES -- that might be a solution for Tagg transitioning from formula to a new formula -- putting it in some other kind of bottle (like it's a whole new kind of drink?) I've heard a lot of people who loved almond milk but we never wanted to mess with tree nuts at that point (just nervous, I think, even though peanuts are a whole different food).

    You are right that it is going to be a pain, but you will see a MAJOR improvement in temperament, skin (these are the key culprits for eczema), etc., so it will be worth it very quickly. And you are right to keep your chin up about the physical developments. He'll get moving in time.

    Anyway, sorry to be such a stalker here and ramble on and on, but wanted to lend some online support. :)

    Erin
    erin dot bronchetti @ gmail

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  40. You are one good Mom! Your two little preppy cuties are lucky to have you!

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  41. Amelia had horrific eczema for the first 14 months of her life, that we just thought was 'sensitive skin'. Turns out she had a really severe daily allergy. Off the charts bad. I felt horrible and relieved all at once. It took a while for the hubs and to get used to the no dairy thing but it turned out to be a good change for all of us. And the good news is that as she got older (now 5 1/2) she's growing out of it to some extent. You are a good mamma and you guys will be able to tackle this challenge head on. Keep your head up, you are doing a great job. :)

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  42. My five year old is allergic to peanuts, tree nuts and avocados. We use the Fooducate app when we go grocery shopping--it will let you scan the bar code on grocery products and it will tell you if it has your particular allergen in the product. You can pick up to three allergens at a time.

    Its tough at first but eventually it gets easier and becomes just the way you live. We carry Epi-Pens and Benadryl with us at all times, and I also try to carry snacks that Henry can eat.

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  43. You have a tough road ahead, but at least you now have some answers! You are such a good mommy! Good luck!

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  44. I just saw this post. You are such a good mom to have listened to your instincts. My daughter has an egg allergy that we didn't diagnose until she was in 3rd grade. Crazy, right? I felt like the worst mom on earth. But honestly, she threw up a cookie when she was about 2 and then never would eat baked goods after that - aversion. She never broke out in a rash or anything I would have associated with an allergy. My father's a pediatrician and never even thought she might have a food allergy. Egg is in a lot of baked goods, but can be avoided fairly easily. I don't have experience with the other allergies, but know others who do. After some adjusting, you'll get to be a pro at sorting through it all. Good luck!

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