Maybe I should back up a few years? Not everyone reading may know Killian's story.I apologize, I told you I'm new to this.
Alright, early 2008 after our fair share of waiting to finally becoming parents we were truly blessed with Killian. A healthy 8.6 pounds awesome baby. Chunked up so fast and earned the name "Moose". At 5 weeks old Killian had his 1st bottle of formula to hold him over because I was held up late with a medical procedure. (C-section complications - that could be another blog. But it won't) My husband said he drank it fine, went to sleep. Well, he didn't wake up so we thought maybe he was starting to sleep through the night? I kept checking - still breathing, we're good! Around 7 hours I just didn't feel right about it and checked again, but felt the crib sheet - soaked, all around his head! Picked him up...imagine a broken doll. His limbs just fell, he seemed lifeless, words really can't explain it. I undressed him, as I was told to do so to wake him if he fell asleep while nursing. This did nothing. We gave him a quick sponge bath to clean the spit up and try to wake him. His eyes rolled back in his head. This sounds like we took our time, but I promise it was so fast. I dressed him and we rushed to the ER, for the 1st time. Since he was under 6 weeks old they legally had to admit him and check for meningitis.
Cue not 1, but 2 spinal taps (and a 3 day stay). Dr. after Dr. approached us to give us comfort and hope. I was convinced he wasn't coming home. They had no answers, just gave him some IV fluids (after several attempts at his tiny veins). "We're doing our best", "we'll take good care of him", "must be something viral". We heard it all and yet knew nothing. I was pulled away for more of my own medical needs while my husband fought to stay by his side through every test. We spent the nights with him and finally he started to come back to us. They had no answer and thought it was a virus and he "probably would've worked it out on his own had we not gone to the hospital". Mmmm, sure. Fast forward a few months, not knowing about food allergies, we gave him formula for the 2nd time. Perhaps because Killan was a little bigger, his body was able to fight better. Projectile vomit, hives and his cute, chubby face doubled in size before my eyes. "I think he's allergic to something!" I yelled to Tony (my husband). We called the Dr. who informed us to give him Benadryl. How many new parents, that know nearly nothing about allergies have Benadryl? Not us - can you believe Tony went to the store and got home in time for it to work on Killian?! I still can't. Especially after learning today that this reaction is considered "VERY SEVERE" for an infant. I can't even count how many times we've been given a second chance with Killian. Here he was at 4 months old and his 2nd run in with a deadly allergy.
Since then, we obviously learned to stay away from dairy. At the time I was working for a former Doctor, and kosher Jew, who gave me SO much helpful information on the right formula and baby foods and label reading....and - we switched our pediatrician because she didn't help at all other than the Benadryl call.
Around 9 months we noticed eczema, pretty severe eczema. Of course, we thought it was dry skin from the winter months. Poor baby was scratching so hard he was bleeding. New Dr. told us eczema is almost always related to food allergies. WHAT NOW?! UGHHH, we haven't given him anything dairy, but I had noticed mild hives from time to time. So I narrowed it down to either salmon or eggs. Eggs won. So did peanuts! These 2 were confirmed at the allergist's, just after Killian's first birthday. I made some baby foods, I had no idea what to feed him as I was supposed to be introducing him to foods! Let me just add the fact that I ate LOTS of eggs, dairy and peanuts througout my pregancy left me with some guilt. When others pointed it out to me, it made me feel horrible. Could I have caused this?! Did my diet ruin him!? Thankfully I can say "NO!". While shopping for baby food I just couldn't help but notice another mom (10 month old in the cart) was reading the labels. INSTANT CONNECTION! "Does your baby have food alleriges?" I asked. "No, well, I don't know for sure but I have 5 year old twins. One is allergic to (insert nearly every food here) and the other nothing, so I'm waiting to have my baby tested when he turns one..." Thank you God for sending this woman to me!! She had TWO babies at the SAME time, so they BOTH ate what she ate, and ONLY ONE HAS ALLERGIES! "Eat that" everyone who tried to blame me! I couldn't wait to tell that story. Ahhhh, still feels good!
Allow me to bring this back - there is NO cure for food allergies and no known cause either. Lots of speculation but no concrete evidence. And neither Tony or myself have any allergies. We're slowly learning of distant relatives who do/did though. There's a lot to be said for genetics.
Today we met with a Registered Dietician from Mount Sinai Hospital. Killian's allergist (miraculously) joined Albany Med from Mount Sinai and urged us to visit her team there. This allergist has been amazing, I truly cannot sing enough praise and I don't think my breakdown in her office really conveyed my feelings to her either. I'll get into that at another time, what triggered (haha! Allergy term, get it?) me today was the end of the appointment. The dietician asked Killian if there were any foods he wishes he could eat. She was trying to help us with expanding his menu, as we try our best to substitute dairy wherever we can. Killian gently nodded "yes" to her, I admit I was a bit shocked. She asked what he'd like to eat. He looked at me, almost as if to say "Permission to speak?" and I encouraged him. His answer was "Dairy". Hearing him say that hurt so much. I know he just wants to be "normal", to eat with his friends, not worry about anyone touching him, touching his toys, touching anything. We've done, I think, a pretty good job of teaching him to be aware and to not be afraid but we can't change his perception, his feelings.
Whenever Killian has days like this, where his allergy upsets him, I try my best to explain how lucky he is to be able to run and play, how there are some children who can't do these things and how they are truly sick. I try to explain that he's so healthy because dairy really isn't good for us (you know it's true! But I LOVE pizza!) and I tell him to be thankful what he can have and can do. Does this register with him? I hope so, I think it does for a few minutes at least. Until he goes back to Pre K and gets separated at snack time...thankfully he has some amazing friends that bring safe snacks, in hopes to eat with him that day! Children are such beautiful blessings. They understand more than we give them credit for. They are not yet tainted with ignorance or prejudices. These little people do their best to keep him safe and included and, at the end of the day, what more can I ask for my son to have. One by one, he is teaching others about deadly food allergies. He has taught us so much in (almost!) 5 short years.
I could go on forever, but this feels like a good breaking point. Thanks for listening!
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