Good Things DO Happen in This Allergic Life!!

Present day posting.

Okay, so yesterday was kind of a big deal for us and I have ....... skin testing RESULTS!!!

So I will skip the details for now and get to the nitty gritty:

Dogs - Negative (really though, we knew this)
Cats - Barely allergic (YAAAAAY! This has gone down!)
Horses -EXTREMELY allergic (awwww *pouts*)
All grasses - Negative
Juniper Pine Trees - EXTREMELY allergic (Boooo...those things are all OVER CO :( )

Now on to the biggies; foods.

Fish - Negative (we've always been told to avoid til she is older, yaaaay)
Shrimp - Negative (Also been avoiding)
Crab - Negative (Yaaaaay! Same as above, also been avoiding)
Wheat - Negative (Oh. My. Goodness! YES!)
Soy - Negative (WHAT?! YES!)
Peanuts - Positive, but not extremely allergic (Um...WHAT does this mean for us???!!!)

Now for the details. What does all of this mean for us? Well, the trees...those are an issue, but one for now that we can avoid at least somewhat. Wheat and Soy we can now move on to food challenges for! This in of itself is just huge for us. After the challenges prove she is not allergic to either wheat or soy....my girl can have her very first ham/turkey or whatever and cheese HOLD the mayo sandwich! No, my almost 5 year old daughter has never in her life had a sandwich....this is huge! This can open up a door to so many exciting new foods for Liv and our household! You see, whatever she is allergic to, we rarely or never eat.

Now, that peanut result is bigger news than I was prepared for. Olivia is STILL severely allergic to it if ingested or inhaled, but now if I were to eat a peanut and forgot to wash my hands (okay, so that is unlikely but you get what I'm saying), she will probably just get hives. We can also probably start the process of doing food challenges on PEANUTS!! While I keep my hopes to a minimum, her Dr tells me with a smirk (he is so awesome...seriously), "by the end of summer she may only be avoiding eggs and tree nuts....screw the school wanting to hold out on her for having too many allergies now." I loved that. For those that don't know, I'm currently entangled with the district about her going to school and what they HAVE to do for Liv vs what they WANT to do for her. This has been huge and I will write about that too. The Office of Civil Rights has even had to be contacted about all of this.

So, you might be wondering why I'm so excited, or if you have a FA child, you KNOW why I am so excited. Making any steps toward progress is a God send and in my life....a miracle. I feel so vindicated right now! Over the past years I've struggled with finding my voice in all of this. I've realized that Dr.'s don't know everything and it's absolutely okay for me to question them on everything. They hate me, I'm sure. Well maybe all but her current team of doc's that is. I've found that fighting for my daughter has finally paid off! You see, the allergist Liv is seeing now, she's only been seeing him for maybe two months and in two months he has turned my little girls world into one she can truly LIVE in!

**Due to the high numbers in her tree nut and egg blood work, plus her having anaphylactic reactions to eggs; Olivia was NOT skin tested for tree nuts or eggs...for safety reasons**

***I am proud to say Liv handled the testing with nothing but a positive attitude! She knew to not scratch and she didn't even try! We played the Lady Bug game the whole time and the nurses said they are going to buy a few sets of that game for kids in future testings. We CAN make change....even with the experts!***


She would pick this as her game piece ;)


This was after her skin test and they were awesome enough to numb her arms for blood work (that didn't end up getting drawn...)
I'm working on re-sizing these pics -- sorry about the size!

That Wacky Mother's Intuition Strikes Again

Who knew re-visiting the past could break you, emotionally? Just for a bit, but yeesh!

So...we were in the fall of 2007 when I last wrote (about the past anyway).

The remainder of 2007 was pretty uneventful. Well, uneventful by MY terms and the terms of a lot of other FA families. By uneventful, I mean ER trips were about once maybe twice a month and nothing extraordinary, just typical hives, breathing issues (not serious ones though) and colds attacking Liv's respiratory system. The first half of 2008 was similar to the last half of 2007. Usual ER trips, missed work, lost job due to missing work for Liv (No matter, I didn't want that job anyway *sticks out tongue* and quickly found another *THANKFULLY* :) ). Something stood out though during all this "normalcy", I kept hearing the doctors remark about her tonsils. At first, I thought nothing of this, but after about the billionth time hearing it (that's a lie, it was more like the 6th time), I couldn't shake it from my brain.

Late summer 2008, I took Liv to see the pediatrician. Once again, in hopes of getting that "ever elusive referral, but this time to an ENT. After all the comments about Liv's tonsils and looking at them myself (hello HUGE!), I decided an expert needed to see these suckers. Once again (gosh, I wish this wasn't such a repetitive scenario), I was told I was wrong. The pediatrician took a look and said they were large, yes, but nothing should really be done about them. He told me that while Tonsils were at one time removed at the drop of the hat, they really try to avoid that now. I was also advised that unless her tonsils were touching, they wouldn't see them as a threat to Liv's health. I was not about to go through this nonsense yet again. Remember the whole "do NOT underestimate a mother's intuition?" Yeah, file this situation under THAT. I'm pretty sure I sighed...loudly; I do this right before a confrontation that is going to be uncomfortable for me. At this point I recall standing up and saying, "my child has DEADLY food allergies...allergies that cause her to swell and stop BREATHING, you're going to tell me that her enlarged tonsils don't even remotely concern you?!" What I got in return to this out of character behavior (for me), was a hesitant smirk then...,"Alright. I will write the referral, but when they say nothing is wrong...be sure to come and see me." Uh, seriously?! Did he JUST say that to me? He is giving in and writing it?! Who cares about his sarcasm, he gave us the referral after round ONE! NICE! I called and put Liv on the 3 month waiting list and made the appointment with an ENT at The Children's Hospital here in Denver.

Fall 2008...It's GO TIME, or....ENT time! We sat in the waiting room for what seemed like an eternity. Really, we waited for an overbearingly long time. Once we were seen though, it all happened so quickly. We did the usual weight, height and temp check, went through her list of medicines. The nurse responded to her medicine list like they all do, "Really? That many medicines for one tiny little girl?" Yep, that many...it's true. Anyway, eventually we're greeted by a warm and super friendly Dr. I could have hugged her she was so people friendly. She asked a set of questions: Does Olivia snore? Yes. Does Olivia wake in the middle of the night and if so....is it often? Yes...and it is every night. Does she need long naps still? Yes. Does she perspire in her sleep? She wakes up soaking wet in sweat. Q&A ends and the Dr takes a quick look inside Liv's little mouth. She quickly pulls away and says, "We rank tonsils on a scale of 1-4, 1 being barely there and 4 being touching. Olivia is a 3 almost a 4. In my opinion, they need to go, even if she didn't have food allergies I would say this." Now, let me preface this next sentence by saying, I do not love seeking out illnesses for my child. Okay, VALIDATION, don't underestimate what a mother knows about her child. Nobody knows your child and their health/symptoms like their momma.

I think this is a good point to sum this post up. Liv's father and myself quickly discussed whether or not to do the surgery. I say quickly because well...it was a no brainer. Surgery set for Dec of 2008 and that is where I shall resume in this catch up process.

PS, for those wondering, I DID in fact go and visit the referral giving Dr as agreed upon ;).

The Unknown and Uneventful

I believe that I last left off with throwing foods across my kitchen...

It was at this point in time that I began to regroup and head into the unknown. Yes, I knew what I had to avoid and thought I knew how. I had NO earthly idea just how HARD this task was going to be. I mean when you think about it...a one year old that can't have cheerios, any cereal other than rice and corn chex were out, any fast food (because at the time there was really no such a thing as places posting allergy info...that is still hard to come by), pasta, mac & cheese, Gerber snacks and meals....the list goes on...I mean really...WHAT do you feed a one year old that is so restricted? A lot of home cooking is what you will feed them! I began making Sunday a cooking day. I'd cook chicken and rice with veggies, chicken, cheese and again..rice. I'd feed her lots of meats, cheeses, fruits and veggies...I made this all in bulk and would freeze small containers of her meals to make life easier on me. You know those days when you just pop a frozen meal in the microwave? I made our own...I felt so...so INVENTIVE, ha! In reality, I think I just felt like I was gaining control on this disease. I was going to live with it as if it were second nature or a second skin.

I was blessed to have such great friends around in a time that I had no family around. They got to know Liv's allergies as if she were their own. In a life where spontaneous barbecues were a way of life; they were amazing. They would stop making foods like Deviled Eggs or anything else that would cause severe danger for Liv, they would explain to others about her allergies and to please refrain from bringing certain foods. I couldn't have been luckier in what could have been a sad/lonely situation.

And so passes a pretty uneventful year. No further signs of reactions, the eczema was still just as bad as ever, but that was "normal", sadly.

Next blog will begin in the Fall of 2007......

Doing more, so much more...

Okay, so I'm working on keeping up my blogging promises and so here I am...doing my "present-day posting" for your reading and viewing pleasure.

At this point in our lives I'm ready for so much more. I feel as though I've been to battle with these crazy FA's and am over fighting them. I am on to accepting them for all that they are. That COULD be because we're rounding the corner to Liv's 5th Birthday and there is little hope for outgrowing some of these FA's. I've spent so much time anticipating her 5th birthday being this huge turning point and like magic, she would be without food allergies and with FOOD. Okay, that's kind of stretching the truth...for about the last year I'd lost hope of age five being magic. That doesn't mean that her turning five isn't a pivotal time in our life. We are looking at hopefully eliminating wheat & soy from her not safe list. As a matter of fact, if all goes well...by this time next week Liv will have had her first ever SKIN testing done for wheat, soy and maybe (HUUUGE maybe here) peanut! If we can add wheat and soy back into her diet....or heck, even just SOY (if you've never read food labels...Soy. Is. In. EVERYTHING...ok...almost everything.), life sure would be a lot easier.

What do I mean by "if all goes well"? Well, Liv takes antihistamines every single day (along with a plethora of other daily meds). She's been on them 3 times a day for as long as I can recall, we've gotten her down to once a day and tomorrow will be her last day of taking any until next Weds. IF she should for some reason break out, or need an antihistamine before next Wednesday...the test is off. I would then have to work on keeping her off of the antihistamines for another 5 consecutive days and let the testing commence...whenever we get to that.

At the point of testing we will have immediate results and numbers, but this won't mean that we can just jump in and add these foods into her diet. After doing the testing and (hopefully) getting negative reactions, we move on to the food challenges. These will take place at the Main campus for National Jewish (if you don't know who they are, they are angels on Earth to some of us...check them out, they really are amazing!). The food challenges are lengthy and sound pretty boring at best. At least, I HOPE Liv's are boring...boring means nothing exciting happens...other than new foods being added to her diet, of course.

So much for organized writing skills, I wanted to convey how I am ready for more. I've found myself becoming quite the advocate for kids with food allergies. I've had to break down several personal barriers to learn to speak up for Liv and fear that not all parents will be able to jump those personal hurdles themselves. I find that I'm more and more involved in so many food allergy awareness organizations, discussions and support groups; all of this makes me happy. It makes the past almost four years worth all the while. The reason for this blog even happening is to share, share and share some more. I have hope that other parents will find solace in knowing we're not alone in this fight. I do promise to be as forthcoming as possible, through the good times, the bad times an the really REALLY bad times. Please hold me to that and ask anything you like.

I leave you with this and I now embark on the newest journey in my life...SEWING, yay!

Rationality, sanity and me? Are you KIDDING?!

So where are we....oh yes, somewhere in the fall of 2006 and recently diagnosed with an egg allergy...an anaphylaxis allergy at that.

I start the process of scouring the internet for as much information as I can get my hands on. I don't advise using google as a means to a diagnosis, or to help find your sanity in any of this, it definitely is not good for either. I find out that egg is one of the top allergens for children under five. These top allergens are referred to as the "Top Eight". This "Top Eight" would soon become a vital part of life for us. It is also widely published that most children outgrow these allergens by age 5. Hallelujah, there is light at the end of the tunnel!

After reading for hours on end about an egg food allergy, I decide Liv needs to see an allergist ASAP. Well, ASAP in the military world turned into a 2 almost 3 month wait. I took her to three Dr appointments, my only mission was to get the ever elusive referral for the allergist. I was told by the first Dr that there was no need to worry, just avoid egg at all costs. The second two were no better than the first; I was told that at just over a year old, Liv was not old enough to have allergy testing done. That last Dr, must have seen something in my eyes change because before I was able to blurt out the train of profanities I had running through my mind....he caved. He was CERTAIN that the allergist would tell me the same as him and we'd move forward; him being right and me being wrong. Never EVER underestimate a woman's intuition...right? Well, I would suggest that you also file "mother's intuition" under the "do not dis-regard" and "do not under any circumstances....question" files. I'm just giving advice that is best for all involved here.

I get Liv on the waiting list for an allergist in Topeka, about an hour drive away. I quickly realize that living in nowhere KS stinks when it comes to specialty care.

A month or so passes and it's GO time! Time for testing! I have no idea what I'm in for here, but we make the trip to the allergist. The allergist is pretty aloof and not so people friendly, but she does an adequate job of explaining what the test is and what it can mean. She promptly sends us back to Ft Riley after a quick blood draw. It takes one to two weeks to get blood results back. The blood test is called a RAST test and typically given only if a child has had an anaphylaxis reaction. It's just too deadly to even touch them with any possible allergen, much less the one that put them in such a deadly situation to begin with.

I let about a week and a half go by and I just can't take the anticipation anymore...I need answers! I call the allergist and get her results...the nurse reading the results explains to me that any reaction level over 0.50 means she is allergic.
*DRUUUUUM ROLL PLEASE*

Wheat - 0.62 (not so bad, but not really expected)
Soy - 2.00 (not great, not deadly...even less expected than the wheat)
Peanuts - 26.50 (WHAT?!! Oh holy heck...what are we getting into here?!)
Eggs - 28.75 (Well slap me in the face, Shocker *drippppping with sarcasm*)
Dogs - .75 (minimal and again, not entirely expected)
Cats - 10.5 (Really?! Crap, we just got a kitten that Liv loves! Booo)
Other than cats and dogs, no environmental (PRAISE the LORD for the little things!)

Now, I wish I could say that I took this news in stride and was strong about it. I wasn't. I was anything BUT okay. My first mission: Call ALL THREE Dr's that blew us off at the clinic and give them her results. I don't know why I needed to do this, but I did...and I even felt just the slightest bit better after those calls. I can't pretend that I am a rational creature, and when it comes to my children...what little rationality I have is quickly lost.

I then email all of this to my husband (now ex) who was at the time doing a tour in Kuwait. Finding out all of this alone was not easy, but it prepared me for what was to come in the next few years. Emailing this to her father made me feel no better as there was no comforting involved (only because we couldn't talk about it and he'd not yet been able to call/respond to this). I called my mom and dad aka my ROCKS. My parents have never been very comforting people, but between this diagnosis and the news of my separation from my husband....they were everything and then some at this time. My parents were exactly what I needed. They quickly related and assured me things would be okay. They COULD relate because of how bad of an Asthmatic I was as a child (SEVERE Asthmatic even going to National Jewish myself). The phone calls to the Dr's, email to my husband and phone call to my parents happened over a time span of maybe an hour. This was nowhere near the time I needed to really accept this and move on. I cried. I cried a LOT. I then proceeded down to Liv's snack cupboard and starting throwing things across the kitchen that had any of her allergens. Yep, cleaned out her cupboard entirely and ended up sweeping ... a lot. Again, I stress that I'm not a rational person and I felt okay with physically throwing these across the kitchen. In fact, I felt better after that. I felt comfort in hurting the foods that were hurting my baby. Do I sound like a total nut case yet? Oh, it gets better...just you wait. Oh, almost a week later we found a new home for the kitten :(.

*These posts get away from me and get longer than I originally intend....my apologies for that*
**You will hear as time goes on about me and how I dealt with these trials/triumphs...mostly about me because I cannot speak for my ex husband. I do not want any bashing on him, or bad thoughts for not being around either....he is active duty Army and cannot be around. Please respect the balance he, his wife and myself have found over time (as our goal is to give Liv and her brother the best outlook on life and family as we possibly can). Thank you**

Can't wait to pick up from here soon! (I'm finding this to be quite therapeutic, btw)