Hope everyone had a great weekend!
So, I haven’t done an update on Bea’s overall health in a few weeks so wanted to share the recent developments. Overall, she is doing great. She is happy, growing, working towards walking, and a great sleeper.
Although all seems good on the outside, we still have a couple things we are battling. Her EBV number doubled last week so we are just so confused why this pesky thing won’t leave her alone. Again, she is showing no symptoms (which is great) but if the number gets too high and she starts becoming symptomatic, then we have a big issue. We are checking her blood again next week to see what this EBV is doing and hopefully it will have gone down by then.
In other news….
As of Saturday, we are a proud owner of an EpiPen. Yes, Bea may have food allergies.
We became suspicious of Bea’s food allergy around her 1st birthday when she became splotchy after giving her birthday cake. She got a little red around her face and after getting her numbers tested we found out she was positive for egg allergy. The thing with egg allergies, though, is that there are 2 kinds.. The first kind means you’re allergic to anything baked with egg in it (which you will likely grow out of), and the second kind is a straight scrambled or hardboiled egg. Bea’s test indicated she was developing an allergy towards baked goods.
We were avoiding eggs altogether for awhile and then Bea ate some chunky peanut butter and had the same type of reaction. At that point, our liver doctor referred us to an allergist to make sure she didn’t have a peanut allergy.
Side bar: Jordan and I are not allergic to anything. Nothing at all. Food allergies in general just blow my mind and I purposefully ate a TON of peanut butter when I was pregnant out of pure fear that Bea would have a peanut allergy. Needless to say that the thought of this coming true was frightening to me.
On Thursday we met with the allergist (who we LOVE) and he administered a scratch test where they test her back for potential allergies. She had a SLIGHT reaction to the peanut and a definite reaction to the egg.
We found ourselves back at the allergist on Saturday morning for a 4 hour “peanut challenge” where every 20 minutes they would give Bea peanut butter in the hopes she wouldn’t react.
She didn’t. And to no one’s surprise (she doesn’t miss a meal)…she loved it.
Phew. Peanut crisis averted.
After the “peanut challenge” our allergist invited Jordan & I to his conference room where he went on to explain that since our appointment Thursday he had been doing a ton of research of immunosuppressed children & food allergies.
He said that 25% of children who have had transplants are likely to develop multiple food allergies. SO, although Bea isn’t allergic to peanuts TODAY…she could develop an allergy to foods in the future. At any time. Our conversation went aTON more in depth and technicality but that was one of the main points.
SO – we are taking Bea in next week for her regular blood draw. At that time they are also going to check her egg allergy and depending on the results we MAY do an “egg challenge” with baked goods and maybe even scrambled…again, depending on the blood results.
In the meantime, according to the allergist, Bea could develop an allergy to anything at anytime so he recommended that we start carrying around an EpiPen.
The EpiPen would be used if Bea eats something, breaks out in hives and starts coughing and wheezing. We use the EpiPen to help her body deal with the allergic reaction and call 911.
We hope and pray that this will never happen.
This is all VERY new information and is something we have yet to review with our liver doctor. I feel like we are slowly assembling a team of VERY strong physicians around us and Dr Campbell (our liver doctor) is the captain. I am anxious to hear what she thinks, what she sees in other patients, etc. I know Bea is our allergists 1st immunosuppressed child so he might just be being extremely cautious.
[The smile-y noodle]
[Last week I participated in the Cincinnati Children’s radiothon. I was on Warm98 in the morning talking about our experience at the hospital.]
[At the allergist for the scratch test!]
[St Patty’s day!]
[I was so thrilled to be the keynote speaker at St Ursula’s Leadership Conference over the weekend. It was so exciting to be back at school and over 180 girls attended which was great!]