Mary had a little lamb... and it was delicious! FPIES update

Ty is 9 months old this week so I thought it was a good time to post a FPIES update. That and the fact that we have recently added a meat to his menu!

Yup that's right, Lamb has been added to the menu. I'm pretty happy and relieved that our first meat was a safe one, I am hesitant to trial the chicken and turkey like the specialist wants. As I mentioned recently we saw the specialist in July and were given a list of suggestions that included lamb, chicken, turkey and carrots. In addition to the foods we also discussed trying a soy based formula to give us a fall back not only in the event of emergencies, but also just to be able to get out of the house say for a date with the hubby. Ty nurses so often I have not had any luck with pumping. My supply is most definitely not the same as it was with Mav.

So we started with the soy formula and things were looking great. That is until I realized that he had developed a rash. It was mostly on his torso, little pink and flesh tone bumps that were raised and could be felt with your hand.

They almost looked like little zits. I kept an eye on them and watched for other symptoms but there was nothing else. Eventually on day 9 of the trial (four days on, 2 day break and 3 more days on) I called the doctor and he suggested I stop until it cleared just to be safe. Total downer. I was so upset at the idea of losing the formula that was looking so promising. Ty has only had acute reactions so far, I was a bit naïve about the possibility of a chronic reaction. Our doctor also had said he didn't fully believe chronic reactions were really FPIES but obviously he believes enough that he had us stop.

After waiting over a week for the rash to clear without any improvements hubby revealed he had been washing Ty's clothes with the regular detergent.  My spirits were lifted and after rewashing all his clothes we are now rash free. I'm very nervous to bring back the soy but also feeling very optimistic that the rash was not FPIES related. Fingers crossed!

Because of the rash we lost some valuable trial days, but went ahead and started lamb even though the rash was still present. At first Ty did not seem able to tolerate the texture of the meat and I instantly began trying to come up with a back up protein plan that did not include meat. However I discovered after the lamb cubes thaw they will turn into a pate like paste so long as I add water when heating it up. Once I realized this the rest of the trial was smooth sailing. We mix it with squash, sweet potatoes or peaches to hide the gamey taste. 

so good he's licking the plate clean lol

The one downside of the lamb I have noticed is that it makes the poor guy constipated. We have had to start giving him prune juice on occasion (luckily he had prune juice prior to his reactions so I felt ok without doing a trial).

Today we started quinoa. I had a bag of it in the pantry that was still good and figured out how to grind it into a flour and make my own baby cereal. I am a little extra nervous since Mav is on holidays from daycare this week but I don't feel like we can afford to not trial this week so here we go. Quinoa seems to have a high pass rate in the fpies community, and if we pass it then it will offer us a lot of versatility as well as the high nutritional value of it.

I am thinking of changing up how we do our trials, we never were given an outline of what we should be doing and I sort of just decided the time frame and break period based on what others were doing in the support groups I am in. I recently noticed someone mention they did 5 days of one food followed by a 5 day break where they introduced another and then went back to the first food for another 5. It got me thinking and I am going to try doing it but in 4 day groupings. If we find Ty has a chronic reaction to something we obviously will have to go back to the other way of doing it but this way should allow us to conquer more foods in the limited weeks I have left before returning to work.

So in summary we are on day 1 of quinoa and will trial that for the next four days; during our four day break I am going to introduce pears. After pears we will try carrots and retry the soy formula. Depending how the timing works out we may get a chance to try one of the other meats before our next appointment, but I am also not worried about rushing into them. Avocado is also near the top of the list for upcoming trials.

Our current safes include:
Lamb, Sweet potato, Butternut squash, peaches and black plums

Current triggers:
Dairy, Oats, Rice

Unknowns:
Soy, and Quinoa

It feels good to see that written out and have a reminder that our safe list is almost doubled our amount of triggers. It gives me hope, we can do this.