Yogurt starter and a glimpse into reaction symptoms...

A few months back, I was always in search for ways to help heal my little man's gut. Even before coming to his FPIES diagnosis, I knew something was just not healthy with his gut mucosa.

I looked into many things that could help gut healing and inflammation in the body. I tried some Fish oil (Omega 3) supplements....unfortunately they were made from fish and he reacted to those with what looked like an IgE type reaction- spots around his mouth. I bought probiotics (http://www.giprohealth.com/giprostart.aspx) I bought the probiotic and the probiotic starter. I gave him a few days of the probiotic but he was getting tummy aches with this- we thought likely from the inulin (we were already suspecting a fructose intolerance). So, that was stopped as well. I didn't have any safe "milk" to make the yogurt with, with the probiotic starter but I gave it a try (to see if I could do it) with some coconut milk (in the hopes that one day he could tolerate coconut milk as many dairy intolerant kids can). I did not succeed and it never "set" and it tasted a bit like...well, vomit. So, in the trash it went. And in the fridge the probiotic starter stayed. Now with hemp milk safely in his diet, I remembered that I could probably use this to make him some yogurt from.

I successfully made Hemp milk yogurt last night! I gave it a chance to cool this morning and gave it to him with lunch today. It is fun to be finding "new" things from his safe ingredients to put in a bowl at the table so he can be sitting at the table with his brothers when they eat. It makes meal time much less stressful (although I still don't sit down).

I put some hemp milk yogurt in a bowl for him (he has his own bowls and spoons so when he sees me getting these out- he gets excited!). He took a lick and wasn't interested. I put his millet puffs (that we have been giving him for "fun" in a low-dose kind of trial way) on top of them in the bowl- he proceeded to pick off the millet puffs and eat them, while only taking tiny licks off his fingertips of the yogurt. Soon enough he was "all done".

Within 2 hrs, the hyperactivity started- he couldn't settle down for a nap, he wasn't eating very well and just kept fussing off and on. He has been teething this week (1yr. molars) so we have that wrapped up in things throughout the week- but that is usually a bit of fussiness while he grabs his cheeks and it is consolable and short-lived. I gave him some of his compounded ibuprofen. This seemed to help because within 20min he finally went to sleep. His nap was short and he woke up screaming- clinging to a stuffed lamb toy from his crib (not a good sign). He remained fussy and refused to eat. We took a short van ride (ok, ok- the other boys talked me into a McDonald's dinner because they were "starving" and knew my hands were going to be too full to prepare much). The van rides almost always calm him down, and he was better. He has been having mouth itching and his skin is mottled (again, more of his signs of his body reacting). He is starting to play well, so hoping it is working it's way through without much more increase in symptoms.

This picture is, of course- before the yogurt....happy Little Man that we've begun to see more and more of every day.....a "normal" 14mo. old little boy- playing, exploring, running, chasing brothers, playing jokes on brothers, giggles, hugs, kisses....we are establishing a baseline and it is a beautiful thing (what today's post was supposed to be about, maybe tomorrow)....

So quiet....

at home. Hubby takes the night shift with little man. After many months of having a sick child, while still caring for our other 3 boys; we have become a well-oiled (although admittedly sometimes squeaky) machine. And right now, I take the day shift with little man at the hospital so I can be there to talk with the doctors; and he takes the night shift so he can be there for Little Man. This allows all our boys to get time with each of us as well. Cuddle time, bedtime stories and bedtime prayers with mom right before bed are critical for the 3 big brothers. Playtime and cuddle time with daddy before bed are essential for little man. But we miss Little Man at home. He is anxious to get home too...hopefully tomorrow afternoon...

Little man has not had good weight gain yet. I already could have told you he wasn't going to. He drinks in adequate calories but his body isn't absorbing them all because of his gut inflammation, so this will continue to be a cyclic affect until we can rid his body of the inflammation. He started to have a rash on his back today- just another sign of the inflammatory triggers in his body. He also looks more pale today.

Our allergist at CHOP has been calling to check on him, this makes us feel very supported and is helping with a lot of the questions we/the doctors here have about FPIES. We have learned so much on this journey so far, I continue to look to learn more- not only to help our son (who still needs so much help right now) but to help learn and raise awareness of this roller coaster ride.