- 5 years ago
- Wedding: October 2014 - Disney
I’m a mama I have celiac, my daughter has EoE. Well long story short she’s been on a PPI for sometime and things started slipping a few months back. This is her 2nd PPI 4th dosage failure. They had to put her on a clinical trial of steroids to get this one to take several years ago.
I took her to the gastro today and things arent pretty. I was expecting an endoscope, celiac testing, and more PPI drugs. What I got was slammed with big six elimination diet, or possibly elemental diet. They wont know until they scope her.
Our best hope right now is her condition is being driven by celiac at this point. If they dont find that I’m facing not just cutting gluten but all the major allergens out of her diet, or all food entirely. My heart is in pieces on the floor. Could you walk this path with your child? If you had to make them every bite they ate, or feed them a formula of sugar and amino acids. Could you do it?
Celiac I can handle but this is tearing me in half. I wont know for another 4-6 weeks what we’re up against. What I do know is she’s not growing and has a lot of little symptoms which are apparently not as small as I wanted to think. I feel so guilty right now. My child has dropped from the 25th-30th percentile in less than a year to the 3rd. She’s developed issues again physical and behavoir. I feel like a horrible parent.
I watched them pull 6 full tubes of blood out of her. She almost passed out. They had to use smelling salts.
Soon they’ll knock her out to biopsy her digestive tract. Another hard upsetting thing for a mama to go through. I’ve been down this road before.
I always wanted to think she’d grow out of the EoE and GERD. Her doctor told me no they’re realising these kids dont do that it progresses.
The big 6 diet would give her a really good chance but it also limits her so so much. I am so sad for her. Celiac is a big enough burden, but all of the major allergens? ALL of them? REALLY? How do we face this? What do you feed a child who is sugar restricted and cant eat 6 extremely common food products?
I feel like such a bad mama. I feel so upset. Should I have seen this sooner? Last year she was small but atleast on the track she’d been on for a while.
So scared and sad. I should be happy and focused on a wedding and making a family together. Instead I’m worrying about what my groceries will look like in 6 weeks, or if she’ll even need groceries at that point.
Could you walk this road? Could you hold your child’s hand and say honestly we’ll get through this whatever we have to do? How do I hide my tears?