When you trial a new food with your FPIES child you know that there is the chance they will react to that food. And that reaction could be any where from a mild chronic reaction, a strong chronic reaction, an acute reaction, or an acute vomit to shock reaction that will land you in the ER. None of those are fun. OR they might be just fine with the food and earn themselves a new safe food or "safe" as it is called by many FPIES parents- sort of like a super awesome scout badge (that you can eat)!
Trialing a food takes time. Usually you try a food for several days in a row, then stop for 2 or 3 days, then add it back. Slowly but surely you are adding a bit more of that food each day of the trial. Some children, if they are going to react, will react right away and others will take 10 to 20 exposures before they react. That is why some parents don't know their child has FPIES because the food they react to isn't a "new food".
We have long suspected that spinach might be a chronic trigger for Little Cub. However, we took it out of her diet (and mine) at the same time that we took out a bunch of other suspected foods. We have slowly re-added each of those foods with success except for mangos. Mangos also seem to cause chronic symptoms- loose mucus stools, sleep disturbances, irritability.
So last night we decided to start re-trialing spinach. We started with a chicken, red pepper, spinach sausage that is one of Papa Bear and my favorite kinds of sausage- and a quick and easy meal!
Little Cub loved them just like her mama and papa. I felt like I was feeding my child poison with every bite she ate. I had to swallow my feelings, and smile and say "yummy" and "Nice job eating that." I checked the time 9:02 (yes, it was a late dinner night) and hoped that in 2 to 6 hours I wouldn't be woken up by throw up. I even had a towel ready and waiting, just in case. Thankfully, she slept, ok...she did toss and turn some but not as badly as she did with mangos (the most recent re-trial). Then this afternoon, she pooped, it was fairly loose, certainly not her baseline kind of stool, but not too horrible and with only a little bit of mucus. So we will keep adding a bit more spinach to her diet over the next few days and see if she really is reacting, which I think she is, or if her stomach is re-getting used to spinach and she will be fine with it in a few days. My gut is telling me this trial isn't going to get too much farther, but I am hoping that I am wrong.
I think the main problem before was that Little Cub's favorite puree pouch snack was a Mango, Apple, Spinach mix. Between the mangoes and spinach together, the "mild" symptoms (sleep deprivation for Mama Bear doesn't seem mild after a few days!) combined and became a lot more severe.
I guess we will see how she continues to do on the spinach. I will be headed to the store tomorrow to buy some fresh spinach add to our morning omelets...
Some days are good days and others, well, if little one didn't react to grapes I would be reacting for the wine.
A basket full of toys I had put away for a few months. That is what did it to us this time. At the bottom of that basket, a white rice teething biscuit. I thought I had checked all of her toy bins, boxes, and baskets for any left over food. I guess I missed one.
From across the room I heard the tell-tale sound of her bitting into a teething biscuit, I knew that sound anywhere, I looked up and flung myself across the room to grab it away from her little hands. She cried and said "MINE" loudly at me, to which I replied "NO, you cannot have this, it will make you sick." A tiny, tiny bit mark was in the biscuit, she had eaten some. Ok, sigh, I checked the time 11:32. I wondered if we would be dealing just with the meanies this time or if there would be vomit and diarrhea too. Within two hours she was a screaming, crying, biting, punching mess. She didn't take a nap and I was left wondering how long I could last without going crazy. Then she started to act happier and by dinner she was her precocious 1.5 year old self.
She didn't sleep well, but she didn't sleep badly either so I figured we were in the clear. Then came her diaper this afternoon. Visible blood streaking and a little bit of mucus. Dang!
We knew she was somewhat reactive to white rice, a chronic trigger, but it hadn't ever caused blood in her diapers before. Now, I know, white rice=bad news and that we really do need to stay away from it for at least another 6 to 18 months before we retrial it.
So lesson learned, white rice bad and check boxes, bins, and baskets twice (or three times) just to be sure!
I am the mother two wonderful and Rare children and am honored to be the step mama to two awesome teenagers.