First off, happy new year, everybody! May 2017 bring you lots of happiness, joy and health. For us, 2016 was not a good year for anybody. So we are focusing on the positive now and hoping for more passes, less stress, less anxiety, and more fun all around.
Now, yesterday we got the OK to start food trials again after a 3month break. We started with what we thought would be an easy pass… white potatoes. Yeah, that didn’t happen quite as we planned it. I boiled the potatoes in just water (no salt), until very soft and mashable. I cubed them for him to hold and try to do BLW (baby led weaning) with him like we had done with my now 4yr old. He wanted none of it, even as I tried to offer him a bite from my finger. So I decided to mash it up with a bit of his milk to get a good consistency. It wasn’t too goopy or anything. He took 1 bite, made a face, tried to remove said bite of food from his mouth with his hands, eyed went wide, he swallowed. He coughed. Then choked… and went blueish. Yep, I had to remove him from the highchair and hold him bent over my arm, face looking down and kind of help him “throw up” the food. He got so scared and cried. So did mama, inside. This was not going well… And guess what? It got worse. After this whole ordeal, he had his milk bottle (4oz of Puramino) to calm him down. And I thought we were through with all this. Nope. 45mins later, he had the grossest diaper ever. It smelled so bad, and he also got this random pimply rash on his cheek and bum. Hmm… MCAS symptom (talk about that later)??
My boy was definitely not doing well at this point. But I figured that the one bite had been eliminated fast enough through that one diaper. I was wrong yet again. about 2hrs later, he was napping with daddy in our bed and I heard screams and crying in pain for a good few mins, which he never does unless he is reacting to something and in major pain. Now that got me worried. He barely even took any potato and most of it came back up anyway… how is this happening? Poor baby!
He did have a mostly unevenful (for him… still waking every few hours for milkies) night and I thought we were out of the woods. Nope, here comes poo down the leg, and all over his pants (through the cloth diaper) after waking up this morning. Ugh! Now I’m just praying for no more… his skin is so raw and he’s in pain when I’m just trying to wipe him.
Now I have left a message to our GI doc and waiting for her call back before our appointment with her next Monday. I will not be continuing trials like this. Something is definitely up that is more than just FPIES. He reacts to literally EVERYTHING! I will be demanding testing for immune and metabolic conditions as well as every other thing they can think of. I’ve done many research and am quite fairly certain it is related to Mast Cell Activation Syndrome (MCAS). He has all (and I mean ALL) the symptoms listed. So that will be tested too.Which basically means his body cannot handle the world out there.
Most well known triggers are:
– High histamine foods (CHECK, yep seems to be our case)
– Temperature extremes (CHECK, yep he reacts to the wind and cold… and in the summer time, I couldnt take him into the sun for long without getting some sort of reactions
– Airborne smells like perfumes and smoke (haven’t really tested that one yet… but it’s possible… I am starting to use my essential oils in the diffuser today and will keep an eye on him)
– Exercise (too young for this.. he is just starting to get mobile)
– Emotional stress (again, too young)
– Hormonal changes (uhh, not yet…)
His symptoms of MCAS seem to be mostly flushing of the face, pale skin (although as a newborn he was red like a tomato for weeks), itchy skin/face, red pimple rash, cardio issues, GI issues (diarrhea/vomiting/cramps), congestion/coughing/wheezing, conjunctivitis (3 times I’ve noticed already where he gets the goopy red eye), fatigue, muscle spasms/pain.
If you’d like to know more about MCAS/mastocytosis, visit wiki…
I will keep y’all posted about future updates on this situation, when they call me back. And after blood tests Friday.
Have a great evening!