Wednesday, June 27

Such is life

Today was a big day. A big, long, emotional day.

It was our biannual Allergy Testing for 'J'. It's a path we have been on since he was a newborn. I knew immediately that something was just not 'right', but was often dismissed as a "new mom". While nursing, his little face would get tiny little pinpoint dots on it- its just sensitive newborn skin, then came the spitting up/vomiting- babies always spit up, & the crying- babies ALWAYS cry, the odd type of diaper rash- it's probably from those cloth diapers. The list kept getting longer but everything seemed to have a "normal" reason/answer. Finally when he was 5 weeks old my sister (who has several severe food allergies herself) happen to talk to an old friend whom had children that had recently been diagnosed with an allergy to corn. It went untreated for YEARS. The more she described the early symptoms the more it sounded like 'J'. She called me immediately & mentioned that it could be food related. As I scoured the internet the picture seemed to get more in focus & a wave of emotions came over me, Yes! Finally, an answer! Followed by a long list of questions. 

What if it's severe?!
I'm breast feeding, what do I do?!
What is causing this?!
What can I safely eat?!
How could I be making my baby sick all this time?!?
What's the next step?!

My niece (also with a laundry list of food/environmental allergies, do you see a trend here? yeah...) steered us in the direction of the top pediatric allergist in the state. When I initially called for an appointment I was told he was booked up for 3 months. My heart sank & tears filled my eyes. I was speechless. 
But in my head I was screaming!
3 MONTHS?!? 
I broke down. The woman on the other end was very apologetic, not yet understanding why the crazy woman on the phone started to silently sob. I explained that my baby was only 5 weeks old & that I didn't know what else to do. I was at a loss & asked if she could recommend someone else to see.
"How's thursday work?"
"Absolutely, I know the doctor would not want a child that young to wait. He would want to see him as soon as possible."

And with that our journey began. At the time I had tried to cut all allergens out of my diet, supplement with formula & pump at the same time as a bottle feed to try & keep my body in tune with his feeding schedule until my milk was "clean". As you can imagine it was a lot to add to the already full plate of a new mother. Looking back I probably wasn't the most pleasant person to be around. Hey, I was starving for crying out loud! All I could eat was some veggies & meat. And I was not a "diet" kind of girl.

We were a little sadden to learn at our first appointment that we couldn't do an actual test until he was 6 months old. But thankfully he had enough info (I had done my homework & went in armed with a stack of highlighted paperwork & a lot of detailed info) to put everything back into my diet except Dairy & Soy. It wasn't exactly what this cheese loving, ice cream addict, general 'foodie' wanted to hear, but it was better than nothing...which is what I had currently been eating....

A lot has happened since that first meeting. And a lot has changed too.
*At 6 months old he tested at the top of the charts for Dairy allergy. 
*We got our first (of several) prescriptions for an Epi-pen
*At his 12 month check he tested positive for Tree-Nuts.
*At his 18 month check the Tree Nut had gone down, so we did a Food Challenge (basically sat in the office for 4 hours while they slowly gave him tiny amounts of almond & waited for any reaction) & he PASSED!
*We discussed the possibility that he may have a more uncommon type of allergy, where when ingested it doesn't cause a reaction until several hours later when the food is broken down & the proteins released/absorbed into the body (I do not remember the clinical name for 2 reasons, 1-it is ridiculously LONG & 2-I don't want to deal with it unless we find ourselves face to face with it.) If so it gets a little more complicated.

Which brings us to today.
His 24 month re-check.
Here are the boys, enjoying some new shows we haven't seen before
He did great, considering that fact that he
didn't want anyone to touch him...
Tears were shed. 
Some by 'J', who is at the age of understanding more of what is happening around him. And has been in enough doctors offices to have a tiny fear brewing inside. Who is now at the age to say "no", & mean it.
And some by me, when our amazing doctor said 3 words I never imagined to hear, "It went down". 
3 little words that immediately brought tears to my eyes. Flashes of future birthday parties attended without fear. Flashes of lunch dates with friends, without me hovering over ready to grab anything that is 'shared' with the best of intentions. Flashes of a life not lived in fear.

From that first meeting I purposefully never imagined this day, so that I would not be disappointed every time we tested. And every time the outcome was just as I told myself it would be. No change. 
To hear those 3 little words come out of his mouth (which was grinning ear to ear by the way) was a moment I had silently wished & prayed & hoped for since my son was 5 weeks old. 
I know we are not out of the woods yet. Next is another agonizing Food Challenge. Only this time the stakes are a little higher. Because of the delayed IG reaction he will have to be monitored longer & we will have to keep a close eye on him at home the rest of the day/night. 

We quickly made phone calls, sent messages & updated Facebook posts to share the good news. There is indeed a little light at the end of the tunnel. 

And then this happened...
That is not 'J's back full of teeny tiny's little 'A's.
I had dairy last night while out on a date with the Hubs, partially because I really wanted some cheese & ice cream because it had been SO long & partially to see what would happen....
...and now we know.
It popped up 18 hrs after I ate that dinner, followed by spitting up/vomiting after every feeding & some general irritability. 
When people comment that "he looks just like his big brother", they have no idea how similar they really are, inside & out. 

So back on the beaten path we go, but at least this time we've seen where the road leads & we are ready for it.

1 comment:

  1. oh god :( that is so hard to read i can't even imagine how hard it is to deal with. poor little guys. it's so good that you're on top of this. your boys are so lucky that you're willing to go to great lengths for their wellness! and you'll figure it out. but it is very rough. big hug to you. and someday you'll have ice cream again!


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