Hemp Milk Trial!

We are exploring the waters of Hemp Milk and are now on day two, with two tablespoons this AM. So far it seems ok, but there is some questionable stuff going on that we are hoping is simply adjusting. A blackish green explosive diaper 30 minutes after her afternoon nap and a HORRIBLE night last night for sleep. But she went to sleep in less time tonight then she has in weeks and she has been in a great mood, plus no reflux flaring up, so I am hopeful that this is simply an adjustment. To be on the safe side, we are switching from the unsweetened vanilla hemp milk to regular unsweetened tomorrow. I think tomorrow we will have enough to make arrowroot pudding (B is refusing to drink the hemp milk but I have been successful in sneaking it in her foods). Keep posted for some hemp milk recipes to come-- I plan on having fun with this food trial if it is a pass! So much versatility-- cross your fingers for us! I hope everyone out there that is in the midst of their own food trials is doing well!

Back to her vegetarian ways once more. . .

Well, pork was a semi-bust. . . after hearing back from the allergist and much discussion and mulling over between my DH and I, we decided to pull pork for now on the basis that we and the allergist think it is either (a) a minor reaction building up to something bigger potentially or (b) her body is not yet ready to tolerate the fattiness/greasiness of the pork. So we are not writing it off entirely-- we are just going to give her body a few days off and start with a new food trial of something else. Either hemp milk or mango, maybe pineapple. We shall see. Decision will be by Monday!

Since stopping the pork on Thursday (she last had it on Wednesday), B has been sleeping so much better-- no crying out in her sleep, not up and down all night long. Also, the AM reflux is completely gone and the majority of ANY reflux symptoms during the day are gone. She only got the hiccups once today and it lasted all of a minute or so. AWESOME. I am a happy mama that she is feeling better but still really discouraged about the pork. It is good that it wasn't really a reaction like how we are used to dealing with, but I am still disappointed that we can't add it into her diet yet. She really liked it!!! It just didn't like her. :( Maybe the next trial will be a go! There are still a lot of foods out there to try and she is bound to be successful with at least some of them, right?!

Also, we got the news today that our patch testing is tentatively scheduled for the 6th of September, so I am super excited about this. I know they are doing a bunch of grains and milk but I am not sure what else will be tested. I really am interested to see about dairy, but I think we will still end up with a hospital trial for that one as well as wheat, based on what the doc told us. I will keep this updated as to our results. Hopefully it will be a good guide to help us build up B's very corny diet!!

UGH! Toddler sleep-- or lack there of. . .

So still trialling pork and sakes alive, this child will not sleep! B is very verbal and yes, I am super proud of her for this, but she is like a crazy encyclopedia audio book of her life when it is time for bed. She WILL NOT stop talking for up to 2 hours! With intermittent episodes of screaming and arching her back, mind you. So here is my question, normal toddler woes or significant sign of upcoming reaction? She is very restless and cannot get comfortable-- the excessive talking feels like she is actually trying to distract herself. I know she is tired-- we are very busy!-- and I have been considering cutting out her nap (1-1.5hr nap, once on most days) which I hate to do because we have only had 5 short blissful months of nap-taking EVER, but this kid has GOT to sleep at night. ARGH! Insight or ideas? Also, it is significant to note that we are STILL living in the hotel and still do not have a completely established routine (I try but hotel life and dealing with all of the stuff leading up to closing disrupts it) so I am sure that could be contributing. . . the behavior has been almost every night though since beginning the pork trial. I find it odd. I hope that is all it is. Odd. One day I'll sleep. . .

Moving through the pork trial. . .

Still going with the pork trial and today is day 4! Three more days to go! Today we increased her serving to 2 tbsp and so far we are about 1.5 hours in. It seemed to be smooth sailing until last night, about 6.5 hrs after she at 1 tbsp of pork. When I was walking/rocking her to sleep, she got those weird, heaving hiccups that she hasn't had in awhile. They were different from how they were with the spinach and the quinoa, very wet and I could feel her whole body heaving with them. They went on for about 15-20 minutes and then stopped as abruptly as they started. So hopefully, they mean nothing.

I really do hate these stupid food trials and all of the waiting and not knowing. I want her to catch up to her peers and I want her to ENJOY eating and I want to not have to read everything (and I hate that I have to typically punctuate that reading with "Nope, sorry sweetie, you can't have it") but I really hate these trials. It is hard not to read into everything and yet it is hard to know when you ARE reading into something or if you really SHOULD be concerned. And then when you think you are reading into it to much and you tell yourself to relax and then they have a full blown reaction the next day. . . BLAH. Sorry to vent but I really wish one of these food trials would just be NORMAL. Our corn trial and our arrowroot trials were the last ones that we had no symptoms of anything (other than the typical texture issues when we started the Kix) and those were in December and January. Enough venting!

So if the pork ends up turning out as a pass, I am thinking of trying mango next week. I CRAVED mango, banana and pineapple when I was pregnant so it will be funny to see if she really likes the mango. I would love to add more variety to think bland little diet and certainly some more color!!!!!

My Baby is no longer a Vegetarian!!!

Not that I ever intended for her to be a vegetarian or that I even assumed she would be, but starting the pork trial today made me a little sad, selfishly so. I loved that my little one shared my vegetarianism! I knew it wouldn't last though-- even if meat is a complete fail initially with FPIES-- she used to bounce all around when I would cook bacon for DH when I was pregnant with her!

Anyways, day 1 went off without a hitch. She was pretty fussy in the afternoon and evening, but our lives have been so chaotic lately, it was probably just that. She has 2/3tsp that she actually ingested once I started putting it on the back of her tongue and about 1/3 tsp ended up permanently on the floor/walls/table/where ever she spit it out. (Initially just gagged everything out. So lovely!) SO not bad! What I did to prepare it: I found a nice organic pork chop, thinly sliced, and I rubbed it down with canola and a little bit of salt. I then placed it in a little foil packet and baked it (in the toaster oven) at 350 degrees for 45 minutes. It was tender and moist. I cut it in little 1cm by 1cm pieces (approximate) and shredded about 1tsp of it for her to try. Tomorrow we double the amount and so on. I put the little pieces in groups of three and made mini foil packets, threw them in a freezer bag and froze them for the rest of the week's trial. Here is hoping it is a success! As my DH noted, this is the first trial she has had in like forever that hasn't at least produced a questionable diaper or reflux symptoms within the first 24 hours, so this really could be a great sign of things to come.

So I am sad to be the only veggie in our house again but happy that B seems to be off to a good start, even if it is with a meat! Keep your fingers crossed for us!

Our First Appointment!

Well, the day finally came and went! Yesterday was B's first appointment with specialists (GI and allergist). We saw the EGID team at Children's Hospital of Boston. We have waited 11 long LONG months for B to finally be seen by specialists! And here is the scoop:

First off, we were very impressed with the team of docs and other staff. They were great with my fiesty B (GI had to examine her while she was mid-tantrum. NICE). I really liked that once they called us back, we stayed in the same room and the various docs and nurses came in to see us, rather than B having to be shuffled around from room to room. After seeing the various docs and nurses (we even saw a social worker who gave us info on support resources online and talked with us about the day to day stressors of having a child with food allergies), they confer with one another and produce a typed report giving you a summary of the visit and what the plan is for moving forward.

So here is what we were told. The allergist gave us the go-ahead to shorten food trials from three weeks to one week trails (yikes!) I am super nervous, but we are going to try it. He said that if she starts having more reactions, we will back off, but because of her age she needs to start increasing the amounts of foods to try. He gave us an interesting list of foods to avoid due to their relation to other foods she has failed. For instance, they are considering soy a tentative fail and we are to continue to avoid it like the plague, even though she has never ingested it directly, just reacted with skin contact and through my breast milk. He wants us to avoid all common FPIES triggers, plus wheat (which will be a hospital trial potentially along with dairy), tomatoes, white potatoes, and all meats except for lamb and pork. And of course we are avoiding anything she has reacted to, major or minor. He seemed hopeful since she recently passed quinoa and spinach that she will continue to have more passes than fails. He also said to watch the reflux and rashes, but unless they seem to be worsening, we should be ok. He will be calling us to do our patch testing and they ran full bloodwork on B and did blood tests for screening for different disorders and allergies.

The GI was great too-- very friendly and excellent with B. He was going to do a rectal examine but I guess that freaked out B because when he left the room for his equipment, she made quite a messy diaper. Since he had a fresh sample, there was no need for the rectal examine! I was quite happy for this!!! That would have been ugly! Good girl for cooperating! He said that since she has started gaining weight again (yay B! Holding strong at 23lbs!!!) he thought we could postpone thinking about a scope for now unless she shows more fails in the food trials and we see her starting to lose weight again or simply not growing as she should. He also ordered a few tests to be done on her blood draw and we should find out those results along with the ones the allergist ordered tomorrow or the next day at the latest. The plan is still to go directly to the ER anytime a vomiting reaction occurs and to inform our docs (after the reaction occurs) of any minor or major food fails. Both the allergist and the GI said to pull a food if we see worsening reflux, diarrhea and behavioral changes-- we don't have to wait for vomiting. And as we had already been doing, they said to wait a few days once B returns to baseline following a reaction and then start trialling a new food.

So all in all, I think it was pretty productive. We will meet with the dietitian next time as well and hopefully B will have a little more variety in her diet at that time. It wasn't even a terrible drive-- a little over two hours, mostly due to traffic. Very direct, however. The hospital itself was great and B loved all of the artwork and the large fish tanks ("Nemo swimming! Ponyo swimming! Hi, fishies!!!!!!") Definitely worth our time and I feel more confident moving forward with some food trials now that we have some seemingly knowledgeable docs on our side and I have their personal contact info for any and all questions. They advised trying pork or lamb to start (I choose pork! I still cringe at the idea of my baby eating other babies! Guess it is the vegetarian in me. . .) and then trying to stick to foods in the same families as foods we have passed. And on that note, I think we will be doing pork, then beetroot, then amaranth, then sunflower seeds (in the form of homemade sun butter-- the commercial sunbutter is made on the same equipment as soy nut butter so we are avoiding that). I am still looking around and think mango may also be in our future. 

More to come, but for now, I am spent. Life outside of FPIES has been so crazy too. We are still in the hotel and we close on our house at the end of the month. Then this moving adventure that started in May can finally end!! We got word that our household goods have FINALLY arrived stateside and should get those shortly after getting into our house. Once we are settled, I have some serious recipe experiments to conduct. I will have my kitchen back! Keep posted! More recipes will come this way!

On the Eve of our Appointment

Just posting to say that our day is here! Tomorrow AM we drive to Boston for our big appointment at Children's Hospital. We will meet with the members of the EGID team and hopefully start our journey to some clarity and getting a better handle on dealing with FPIES day to day. I am currently finalizing my questions list before heading off to bed. I will post later on this week the details of our appointment!!! Wish us luck!