What reactions look like…

I thought while we are trialing a new food now (pears) that I would post a bit about what our chronic reactions look like… Acute is more easy to spot with the vomiting right after ingestion or diarrhea 5hrs later, but with chronic it starts off not so bad, until you give more and more of the offending food and then eventually get full blown crappy (pun intended) reactions. For us, that means Micah will scream in pain for hours, sweat profusely, get a very bad acid burn rash on his little tush, diarrhea for days on end, reflux flare ups, and bad sleep habits. But this, this is what I see when I know the reaction is here:

This is a 1 minute video of a scream fest that can last up to 45-60 minutes. And during this whole time, he does not let us comfort/pick him up. It is so heartbreaking! I hate this for =him. I want to cuddle him, tell him it’s okay, tell him mommy will protect him from the bad guys (food) out there, but how? When even SNOW and WATER can make him sick?? If you’ve seen our growing list of fails, you know what I’m talking about a little bit, but did you know he is so sensitive, he needs a special kind of water (reverse osmosis or 1 hard to find very specific brand of bottled water) to make his formula with? He has also reacted to a puzzle piece, a board book page, a dust bunny he found under the rocking chair, etc. This is a constant battle for him. Micah VS The World, and right now, unfortunately, the world is winning 😦

If you want to help find a cure for FPIES, because as horrible as it is, there is also no found cure yet either. So any little amount donation can help end this horror for so many kids. Visit The FPIES Foundation and please consider giving even 1$ if possible. It would mean the world to me/Micah.

 

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September already??

Well, we are fastly approaching Micah’s FIRST birthday. Whoa! How is he 9 months old already? That went too fast. On sept 1st, we saw our awesome GI, Dr Sant’Anna, and explained to her what had gone on since we last saw her the previous month (on Aug 1st). It was decided with her and her nutritionist that with all the symptoms Micah had been getting with carrots that they were now also added to his fail list. They gave him a rash, reflux, congestion, diarrhea and more. The more I fed them to him, the more he reacted. Nutritionist said to stop them or I risked having him go into another acute reaction. So those were now crossed off our list.  He was still gaining but because we thought he was CONSTANTLY demanding to feed during the night, the nutritionist said we could trial increasing his feeds to 24cal/oz. Yeah, what a nightmare that was. He got soooo constipated, he screamed in pain for 2days. So back down to 20cal/oz we went (this is normal dilution). Now, ever since then, he has been constipated every time he tries to have a bowel movement, every 2-3days. I don’t know what it did to him, but it was not good.

And then on the morning of the 3rd, he woke up with a fever of 101 (from teething and a cold). I gave him tylenol and it sent us to the ER. He went pale and lethargic and just wouldnt feed. They took his temp again and it was up to 103.8 (eek!)… turns out he reacted to the tylenol. Another thing added to our growing list of fails…

On sept 6th, we also got to see our cardiologist for our twice yearly appt. It went very well. He has been gaining well and his heart is still in the same condition as back in March. If you want to read up on that, go visit his CHD website. On the 16th, the day of his 9mo, I took his weight and he now weighs a whoppin’ 14lbs 12oz and measures 26.5in tall. What a tiny little sprout. But he is strong and mighty. He is now trying to stand and cruise along furniture and let go of 1 hand to stand unassisted. Wow! I’ll be running after this one soon…

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Hospital stay (part deux)

Yeah, uhm, I’m about a month late on this post. Oops, totally forgot!
But anyway, here’s the rest… Once calm and all set up in our 9th floor room at MCH, they came in the room, weighed him, took some bloods, and sent them off to lab for testing. While we waited on results, they put the famous NG tube in and my boy was a champ. Not too bothered by it, but he was def trying to pull it out knowing it wasnt supposed to be there

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They started giving him 30ml through the tube every 3hrs (6am-9am-12pm-3pm-6pm-9pm-12am-3am… literally all day), on top of letting him breastfeed as much as he wanted. The plan was to get him to take half bm feeds, half formula… He pulled out the tube in the morning, but they managed to put it back in quite fast. After 24hrs of 30ml feeds, we increased to 50ml, and he did great. But then he decided he had had enough and pulled out the NG tube. So the on call doctor team decided to go talk to allergist and GI and agreed to do a few feeds by mouth and see if he can handle the bottle feeds. We then increased to 75ml when he was chugging down the whole 50ml bottles (this is 4 days later). That went great! He was a champ at this and gaining at least an ounce a day if not 2oz. They were poking and prodding him 3-4 times a day to check for refeeding syndrome (where your electrolytes go all out of whack after a long period of not feeding well) and also to make sure his glucose levels were good. He hated those but still managed to stay the happy little baby they knew and saw for the past few days.

And guess what? Through all this feeding and gaining fast weight, he was trying to sit up, pull to stand, wave, and crawl. The boy was on a roll! He had so much more energy!

By August 6th (we’d been there since the 1st), they wanted us to increase to 100ml… but he always only really took about 80-90ml of it, so we left it at that. The problem was, now he was gaining too much with 100ml every 3hrs. So they tried just giving once overnight. That helped. He was back to normal gains. They did not want to overfeed him because that could cause more issues also if done too fast.

On August 8th, they came to talk to us and said he was doing very well with 100ml feeds, but since he was able to gain so fast, that once we were home the next day (YAY!), that we could just do BF feeds and do formula top ups only, and go by his demands. They did one last blood test (at this point he had had WAY enough of the constant foot and arm pokes), and let us finish off the last night on our own and I would just ring the bell when he wanted a bottle.

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On that same day, all 4 different teams (GI, nutrition, allergy and on call docs) came to see us one by one to explain their follow up and what we were to trial. Around 3pm, they brought us a tray with carrots. I mashed them up and gave him a few bites. This was to be our first food trial in hospital. If it went well for 24hrs, we would go home the next afternoon. He ate the carrots fine but then I realized that on the order on the tray it said they were canned carrots. Darn, now who knows what the can contained apart from carrots. This wasn’t the way it should’ve gone. But anyway, night went well and no vomiting or diarrhea.

August 9th finally came and we got the green light to go home and continue our carrot challenge. GI would call us soon and discuss when we’d see her again.

A new fail… and a hospital stay

So, we saw the pediatrician on the 28th of July (Thursday) in the morning. My mother came with me so I could get a ride back home afterwards. But home we did not go. She sent us straight to the ER to get some serious answers once and for all, as she thought he really did not look good and was scared he was in heart failure or something of the sort. He was very pale, hadn’t gained weight in what seemed like forever, and with all his vomiting reactions, she didn’t want to take any chances.

I literally spent 7hrs at the hospital, in the ER, just for blood tests. They did not want to test anything else until they had those results. And they all came back normal… What??? But they promised they’d send a request to cardiology so he could be seen before his scheduled follow up in September, and also to see a GI.

Spent Friday relaxing at home, and getting some much needed sleep. It felt good! Saturday morning we thought we’d go downtown and get some fresh produce at Atwater Market, or go to Eaton’s Center. So we had breakfast, and Micah was still hungry after his breastfeed. I had some homemade hemp milk prepared, so I decided to give him 1oz to top him up. BAAAD idea! 2hrs later on the dot, while we were on the bus on our way downtown, he started vomiting nonstop. And every time more would come out, he would pass out in my husband’s arms. Couldn’t wake him up. Change of plans, off to the ER we went! He was pale, lethargic and vomiting up everything… to the point when we got to the ER at Childrens, it was just bile and blood. If this is what vomit to shock looks like, I never want to see a repeat of this ever again! Super scary… we almost lost him. He was in such bad shape, they rushed him into a RED room (there are 3 ER levels, green, yellow and red), and about 8 doctors rushed to his side trying to get BP reading and all those other vital stats, an IV line in him and some meds to stop the vomiting. Thank god for Zofran!

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When they rushed him into the RED room

 

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A few hours after IV fluids

It took a few hours of cuddles with mama and getting the good stuff through an IV, before he perked up and started moving around and smiling. We eventually got moved to a Yellow room and he kept getting better and better. Husband and kids went home for lunch and I stayed with the baby. It was a very long day of keeping an eye on him and nothing to do in that hospital ER room. But we eventually got discharged after many blood tests were done to test for IgE allergies and a complete blood count was done. They gave us a new plan and said we’d come in that Monday (1st of August) morning at 8:00am and see the GI, Dr. Sant’Anna asap for a meet the baby appointment and she would then decide what the plan is from there, if we’d get admitted on Tuesday or Wednesday, as inpatient treatment for severe FTT and FPIES. The thing is, she was taking that morning from her vacation time to come see us because of how urgent it was. I loved this doc already!

Fast forward to 8:00am Monday, where I thought this would just be a 30min appointment to discuss a plan with the GI. Turns out she thought he looked so bad and malnourished that she said we weren’t gonna go back home that day. She was sending us straight up to a room asap. So I called my husband, and figured out a plan for him to bring me some clothes for baby and I, and everything I’d need for a stay of about a week. And we waited for a bed to open up. Around 3:30pm, we finally got to go up to 9th floor where we’d be staying the next 8 days…

(Part 2 coming soon!)

 

Hi, it’s me, Micah!

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Well, hello there! My name is Sarah, and I am the mother of 3 adorable little guys, Sam (7.5), Eli (3.5) and Micah (7mo). We are a household of known food allergies, including gluten, dairy, soy, and eggs. But nothing prepared me for what I was about to go through after Micah’s birth. You see, the littlest guy here, was born on a rainy morning in mid-December 2015. I had been in prodromal labor for about a week at that point. In and out of the hospital thinking things were moving along, it was finally on that grey Wednesday morning, as I was getting Sam ready to go to school, waiting at the bus stop, that the contractions progressed to every 3mins and I couldn’t talk through them, so off Sam went to school and we made plans for my parents to pick him up in the afternoon, and take care of Eli while we were gone to get this little guy out into this world. Got to the hospital around 9:30am, set up on contraction monitor for about an hour before getting admitted and then everything else is sort of a blur. All I remember is major pain all over my back and hip (bath did not help, epi did not help)… but after enduring hours of horrible pain, my 7lb 9.5oz little guy, came out into the world at 3:07pm. Finally! He was here! And he did great that first day while in the hospital. He fed well, he slept well, things were so good, I was allowed an early discharge after only 24hrs. I was in heaven, the older 2 boys were in love with their baby brother and everything was great…. or so we thought. Fast forward about 2wks and everything started going downhill. He hadn’t gained back his birth weight yet (well, almost), and he was starting to get very cranky, refluxy (I was used to it by then though after Eli went through horrid reflux for 6mo), and crying in pain for hours at a time every night. We were told he had colic and it would get better as time went on. I slept with him on my chest every time he needed to sleep, I held him upwards during his awake times, I rocked him during cranky moments, I tried calming baths, nothing helped. By 2months old, he hadn’t gained much, but was told he was growing on a smaller curve and he was fine. But I knew something was wrong. Mama knows! Anyway, his reflux had gotten so bad too, that he was arching his back with every swallow, and slept with his body contorted sideways, head looking upwards. He was so uncomfortable, that they finally decided to put him on Zantac. We started giving it to him that night, and oh my, what a difference it made. He slept!! We had done it… or so we thought… again. After a few weeks, he just didn’t get any better even when we upped the dose. Actually, it made things worse. I started thinking about what was in there and it was principally made of alcohol and peppermint (EWW!). At his 4mo check up, he hadn’t gained anything for weeks and doctor decided it was time to supplement his breastmilk with some formula. Only thing he would be remotely okay with was Neocate. So we started that in hopes of helping him grow. After 2 wks he had gained a full pound! Yay! But then the 3rd week started and he was worse than ever. Bloody diarrhea diapers 8 times a day, and spitting up more than his usual. Something was up with this Neocate. Looking into ingredients and forums online, I realized it could only be 1 thing causing him issues now. CORN! We got rid of Neocate and within 2 days he was back to normal. And then looking even further into this corn intolerance/allergy, I found out his Zantac was full of corn too. Stopped that too and he was like a whole new baby. No spit ups, no bloody diapers, nothing. He was okay. So I checked on cornallergens.com and removed EVERYTHING corn-y from my diet. He started getting better and better. With only one exception. He wasn’t gaining. Actually at this point (around 5mo old), he was starting to lose weight. He went from 13.3lbs to 12.9lbs in a month…. We were instructed to start feeding him solids asap at his 5mo check up. We needed to fatten him up. I started with rice cereal, and bloody diapers happened again. Hmm… Next was broccoli. He wouldn’t have none of it. So I gave up. Tried bananas next. And omg, my child was vomiting for HOURS during that night, until he was dry heaving and passed out in my arms. I did not know at the time what this was (shock), but it happened again and again after trying a chicken, apples and sweet potatoes mix. Something was up. I did some online research and every time, FPIES would pop up in my google searches. I had already heard of this from 2 friends who had FPIES kids a few yrs ago, so hey, I looked at it. And BAM! It clicked. My child had FPIES (Pronounced F-pies). I joined an FPIES facebook support group and started our looong journey into the world of this severe food allergy…. wait a min, what is FPIES anyway? Well, it stands for Food Protein Induced Enterocolitis Syndrome. Unlike, an IgE allergy that gives you rashes, hives, anaphylaxis and itchyness, this type of allergy is in the gut. It happens between 2-10hrs AFTER ingestion (instead of straight away), and it causes profuse vomiting, diarrhea, reflux and other symptoms. It can even lead to shock, which requires an ER trip asap, with IV fluids and Zofran… and possibly lead to a long hospital stay. The bad thing about FPIES? It is not something that can be tested for? So, how do you find out what your child reacts to? By food trials. And just hoping, hoping for a pass. And praying that you don’t see your child suffer through such horrible symptoms ever again.

With Micah, this means that whatever I want to feed him, instead of going at it like I wanted to before starting solids (I did BLW with Eli and LOVED it, wanted to do it again), I have to schedule his food trials around the times that will make sure I am around in case of a reaction, and it takes up to 2wks to see a 100% food pass. For now, he has NOTHING he can eat, other than breastmilk. He has failed so many foods, it will be a miracle if we see him with ONE safe by his first birthday. And this makes me very sad. My boy won’t get to enjoy food. My boy won’t get to go to playdates or parties, and partake in the great foods like his little cousins and friends will. We will have to watch him like a hawk and make sure not even the tiniest little crumb comes anywhere near his mouth and hands.

We are now waiting on a GI appointment, so s/he can help us decide on a plan of action for my little guy. For now, we have removed all his triggers from my diet, and are trying to give him even more calories by me pumping after each feed and making sure he gets all the good stuff. He has no formula he can take. They all contain corn, except Alimentum Ready-To-Feed, but he can’t take that one either as he reacts to the dairy in it. He is 7mo old now and weighs a whoppin’ 12lbs5oz (has lost a full pound in 7wks). We see the pediatrician again on Thursday for his “late” 6mo appointment. We shall discuss things with her and hope for a referral. But in the meantime, I am waiting a bit to trial more foods as his gut is too inflamed and needs a rest.

I will be posting our updates, FPIES info, and safe recipes/foods as we go along this journey. Ohh I almost forgot to mention this good part. Guess what? Most FPIES kids will outgrow it by age 3-4. Yay!! That gives me some kind of hope for the future 🙂