New year, new food, new fail

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.

Potatoes=NO!!

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!

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Birthday Update

Well, the time has come to wish my littlest dude a HAPPY BIRTHDAY! I can’t believe a year ago, I was in the hospital looking at your sweet face for the first time. You were perfect. You’ve grown into such a happy handsome little guy. We love you!

He is now walking a few steps at a time, can say DADA, and something that sounds like MUM-MUM when he cries (but I’m not sure he associates it with mama yet), and he has 5 teeth. Number 6 coming out as I type this…

As for food, we have extended the break til January 1st. But then we get to trial chickpeas or white potatoes. Yay! Which do you think is the easiest trial for the most varied meal options?

Time for a break

Nutritionist just called me back after I left her a message about a week ago. Because of all the previous many many reactions we’ve had for Micah, she wants us to take a much needed long break with food for him. His body needs to rest and heal. I asked how long is long enough, and we’re looking at possibly until his first birthday (mid-December), if not longer. Which is what I wanted back in August before trialing carrots, lamb and pears. He was already so reactive, this all just made him much worse. But we now have a good plan that I can get on board with. Yay! Take a 2 month break, and then we shall see about future trials if we need to do in hospital or not. I explained he seems to be a day 3-4 reactor if its not an acute reaction, so she doesn’t see the point in doing every single trial there for 8-10 hrs at a time. I know the plan, I know to go to ER if he needs it, etc. So I guess in December we will discuss what to trial next and I will update then.

As for recent update, he is now almost 10 months old and doing well. I have managed to start a re-lactation process to increase my milk supply enough that he sleeps better and doesn’t get so constipated and such. I plan to keep doing so and see if we can completely get rid of the formula by 1 yr old. Exclusively breastfed only would be great. Pur Amino has been a great find to fatten him up but we see many issues still with it and he is still not at baseline (not reacting) because of it.

I weighed him this morning and he is now at 15 lbs 13 oz, which means we have reached the 2%ile curve this week. Yay! He is not gaining fast, but slow and steady is our thing. 3 oz a week seems like a good thing for a boy who used to be on a downward slope for so long.

Now to prepare him for all the upcoming birthdays and holidays, without food. He is starting to get so much more aware of meals and the fact he’s hungry and doesn’t get anything. We have all 3 kids birthdays and my husbands coming in the next few weeks, plus Christmas. That will be challenging with family get togethers and such. But I’m looking at creating our safe plan with my husband and making everybody aware of it. If anybody has any tips about this, lemme know…

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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.

 

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!)