I just had 11 days off from work in a row, and in that time I never once plugged in my computer or other electronics, only turned on the computer once (for my last post), and made almost no progress on straightening out the house from the last few months of crazy work schedules.
With the men in the family bouncing back from stomach bugs, and me being flat out exhausted from work, there just wasn’t much energy leftover for very much else.
However, Darrel and I did teach Jed how to play “Go Fish”, which he loves, and I got some good playing and reading time in with the boys, so it was actually a pretty enjoyable week.
Meanwhile, Darrel and Zac bounced back 100% from their latest stomach bugs. (My Mom got better, too, though now Dad has the same stomach bug. Ick.)
By mid-week, Zac had improved so much we decided to call goat milk safe again! If he had been having an FPIES issue with the milk, he would not have shown constant improvements, even from a stomach bug. Thank goodness!
So we decided to begin a beef re-trial.
The first few days were concerning; no typical FPIES symptoms, but he kept showing up with an allergy ring, and one day had a small diaper rash. Those are usually signs the food is bothering him.
Saturday morning, though, his heinie was as lily-white as the rest of him, and he started talking more. He regresses in his speech every time he’s sick, whether stomach bug or FPIES, so him using more words is a fabulous sign that he’s doing well.
Darrel and I are pretty confident that beef is going to continue to be safe for him, and that all the weirdness that happened over the last 5 weeks is attributed to stomach bugs and viruses.
Enjoying a hamburger with quinoa pizza crust as the bun.
I hate that we “wasted” so much time, but it was vitally important to be 100% sure before moving on. Having to fall back like this is frustrating, but not nearly as frustrating as it would be if we had to pull 5 or 6 foods and re-trial them all because of confusing signs.
As a friend of mine says, “FPIES is a marathon, not a sprint”. Hard to remember sometimes, but it’s very true.
Now we can – finally – pick out a new food to trial for him!
Zac wasn’t the only one going through food trials last week, either.
I don’t know if I wrote about it, but a few weeks ago, while I was at work, Jed nagged my Mom to insanity for a bit of the chocolate she was using in a recipe for my Dad.
She caved just to shut him up, and gave him a tiny bit of the regular, plain, Ghiradelli chocolate.
You know, the kind with sugar and DAIRY in it.
I was NOT happy.
Even though she assured me it was a minute amount of chocolate, Jed was always very sensitive to dairy. We were not quite ready to start a dairy trial on Jed yet; it hasn’t been 24 months since his last exposure to dairy, and I wanted to give him the full 24 months before trying again.
However, it turned out to be one of those occasions that makes FPIES and MSPI Moms crazy: that little bit of chocolate caused ZERO reactions in Jed.
I was glad for it, and also exasperated – people won’t take me seriously if he doesn’t react to things I say not to give him!
In any event, Darrel and I decided to go ahead with a full-fledged dairy trial.
This time, we gave Jed cheese.
Oh, cheese, how do I love thee? How do I MISS thee? There aren’t enough words. I LOVE cheese.
It was a little tricky for us because Jed is now old enough to understand that some foods hurt his body, and that he has to eat them on occasion to see if his body can tolerate them now. We wanted to make him a little excited to try the cheese, but not talk it up so much that he would be devastated if it turns out he can’t actually tolerate it yet.
I think we did a pretty good job of making cheese out to be a yummy treat without making it sound like life is hardly worth living without it.
He was very excited to try it! I bought several different kinds of cheese for him to try, and he wasn’t thrilled with Swiss, mild cheddar, or the Babybel cheese rounds (though he really enjoyed unwrapping those!).
Eating a few bites of a turkey and swiss sandwich with quinoa pizza crust as the bread.
The mozzarella was a bigger hit, as evidenced by the night I made Jed’s first ever dairy-laden pizza, but after one and a half slices he wanted to scrape the toppings off and just eat the crust.
A gluten-free pizza for Jed!
Unfortunately, unlike his brother, Jed didn’t seem to do as well on his food trials. Two days after we started the cheese trial, he lost his appetite. For four days he hardly ate at all. He kept saying his tummy hurt.
When he did eat, it was things like crackers, rice cereal, and plain potatos.
He also had some diarrhea, and asked to sit and cuddle on the couch with me. While an affectionate child, he’s usually far too busy bouncing, running and playing to voluntarily sit with me on the couch, so that’s not a good sign for how he is feeling.
We pulled the cheese.
On the off chance he’s just having a very mild stomach bug issue, we’ll re-try it again in a few weeks.
The good news is that it took at least four cheese exposures before he had any disturbing signs, and even those were incredibly mild compared to what he used to experience when exposed to dairy.
He may not have outgrown his MSPI yet, but it looks like he’s outgrowing it.
Finally.
One thing happened this week that made me incredibly sad.
Thursday night I served up some fresh spaghetti for dinner, since that’s an ideal way to trial Parmesan cheese.
Jed had been telling us he was hungry. When he saw the spaghetti, though, he suddenly announced he wasn’t hungry and didn’t take a single bite.
He didn’t even want anything else to eat.
We attributed it to the cheese, and decided to pull the cheese based on that experience. (The diarrhea came the next day, confirming our decision.)
The next night, however, he made a little comment that led me to question him a little further.
Turns out, Jed didn’t want to eat the spaghetti because the last time he ate spaghetti he got the Meanies. He didn’t understand that the last spaghetti we fed him had been frozen and reheated, and that the spaghetti I served the night before was fresh made and safe for him.
The child would rather go hungry than risk getting the Meanies.
Darrel and I have been very careful to present our food issues in a very matter-of-fact manner to the boys. Other than the IgE allergies, which we’re understandably a little more anxious about, we strive to make reactions and the Meanies not a scary thing in any way. We don’t want the kids to develop “issues” on top of their food issues.
Jed even confirmed that we haven’t made him feel afraid of food. The Meanies are just so scary for him to experience, he will choose to go hungry rather than eat anything that might give him the Meanies.
If that doesn’t break a Mama’s heart, I just don’t know what will.
Overall, though, things are actually doing pretty well right now for the boys. Fingers crossed we stay stomach bug free from now on, so we can get going on food trials again!
Have your kids ever shown such determination to stay reaction free?
Hi Carrie, I was going to suggest something with the cheese. If FPIES is a nonIGE type of intolerance, have you looked at histamine intolerance and mast cell issues or CVID – common variable immune defiency or Primary immune deficiency? The reason why I bring this up, is maybe you should only try fresh mozzerla with your son and only softer cheeses. The soft cheeses are not aged as long in the making of them. The harder and sharper a cheese is directly relates to how long the cheese ferments. AND, aged cheeses are higher in histamines. We are only giving my dd mozzerala cheese right now and she is tolerating it. But, after only a couple small slices of cheddar and monteray jack she had a big eczema flare on her arm. I also can not tolerate many different aged cheeses. I can feel it right away. Also, not sure how you make your spaghetti, but neither of my kids tolerate spaghetti sauce with tomatoes. The pureed tomatoes are just too acidic and higher in histamines. Many can tolerate a couple slices of whole tomato’s, but not the sauces. Here is a post from another site I am on, this may not relate to either of your kids, but I feel like this lady got a good explanation from her Immunologist about Immune deficency and overactive immune system: “I just want to share this with anyone here who may be experiencing HIT (Histamine Intolerance) with SIBO or who may have a history of difficulty fighting infections. Yesterday, I was diagnosed with primary immunodeficiency, and non clonal IgE mediated mast cell activation disorder. Plan is immune globulin therapy and genetic testing to see which meds I can metabolize properly if I ever need them to save my life (antibiotics) and which can be toxic due to undermetabolizing them. She told me that even though I fight infections mostly very well and don’t get sick hardly ever with colds or flu and stuff like that, with PID, your mast cells activate to fight infections when your Ig subclasses are not adequate. So you fight the infection, but you have all these very alert and reactive mast cells that can end up overly ambitious and reactive to everything. Among other bad stuff, when this happens, it causes inflammation, most notably in the gut, which is very well populated with mast cells. Immunologist said it’s like you have two immune police forces, and one is missing a few players, so the other one sends in extra troops to fill in the gap.” Hope the information is helpful, even if it doesn’t fit your boys.
Hey, Deb! Yes, I’ve actually been leaning more towards mast cell issues for all three of us. It’s going to be a whole lot more to take in, I’m sure. 🙁
I appreciate the suggestion about the mozzerella; right now we are just holding off on dairy entirely. I’ll keep that in mind when we try cheese again.
I’m learning that Jed can tolerate fresh tomatos just fine, but cooked is a problem. So usually I just make a sauce with chopped, fresh tomatos, and heat it just enough to make it not cold. That’s great, but I can’t make it in advance and freeze it because after thawing and warming, it’s too much for him (either histamine or fructose…not sure which).
Thanks for all the input. We have a lot more to consider with our health, I think.