Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. (Source: Rare Disease Day)
So on behalf of Rare Disease Day Im sharing our sweet Aubries story. To advocate to all that give me stares when she drinks the only safe thing for her out of a bottle, to all the moms that speak under their breath making smart remarks about how lazy of a mother I am. Enjoy and please share.
Living with fpies was a new allergy to our family
There are differences that set FPIES apart from a typical food allergy. Most food allergy reactions happen within minutes or shortly after coming in contact with a food allergen. FPIES allergic reactions are delayed, occurring within hours after eating the trigger food. In most allergies, the immune system overreacts to the allergen by producing Immunoglobulin E (IgE) antibodies. FPIES reactions are thought to involve cells of the immune system rather than IgE antibodies.
Even though we were lost and had many questions when our 1 month old baby was admitted to the hospital for FTT (failure to thrive) we didn't have to endure what most families do to find/ get a diagnosis. Most families deal with the misdiagnosing,"it's a bug going around", going from doctor to doctor searching for an answer, test after test, multiple emergency room visits and hospitalizations. Don't get me wrong she was sick, she looked sick, when we left the hospital she lost some weight which is normal, but she wasn't gaining her weight back. We went in for our 1 week check up and she was down 1 pounds from when she was released from the hospital, our pediatrician assured us that it could be that my milk supply wasn't completely in yet so he didn't seem to alarmed, but asked me to go top 8 free to see if that solved the problem. We were scheduled to come into the doctors daily to weight Aubrie and the scale kept dropping. Aubrie was down 2 lbs, I was already on such a limited diet there wasn't any other option than to admit her into the hospital. Her pediatrician called in a bed and little did we know that we would be staying there close to 2 weeks.
Test after test, day after day and still no answers. A lactation specialist was assigned to me. Was it my milk she couldn't have? But they say no one is allergic to breast milk. Doctors tried all different types of formulas and nothing was making her gain weight. She was pale/ yellow, she wasn't happy, she threw up and pooped blood every feeding, she wasn't sleeping, she was crying all the time. What was going on, no one was giving us answers. The only thing being said to us is, "If this doesn't work she might need a feeding tube." What?! What was going on with our sweet baby. Finally a new GI as assigned to her and she nailed it in the head by saying, "I think she might have FPIES, so we are going to put her on Neocate Infant and she how she does." This was our last resort, we waited, not vomit, no crying, no poop. She was weighed the next day and she had gained a couple ounces. I know that might not seem like a lot to you but it was to us. It meant progress, her body was accepting something. We were forever grateful and will always be. We got up every 2 hours for 3 years at night to feed her, i'm tired all the time, but it's all worth it.
3 years later and many food trials, hospital stays and still no safe foods, we are all still thankful for Neocate Infant, the only thing keeping her going, helping her grow, thrive and meeting all her milestones. I don't wish for anything other than a CURE, a cure for all who suffer from a Rare Disease. Please be compassionate and loving to all moms, we never know what they are dealing with behind closed doors.
Just a month ago she started sleeping through the night with no feedings until about 6 A.M in her big girl bed! She will be starting pre-school in the fall and I have already reached out if they could accommodate her feedings on demand during school and they said yes. I will be sharing that experience with you then, so stay tuned.