allergic to everything

This time I'm talking about me.

I've already mentioned my poor boys each have their own food issues, well it seems they come by it honestly from their mama.

Growing up I wasn't allergic to anything. My brother was the one who couldn't have chocolate and dairy and my mom had her own list of things to avoid. But not me, nope I could have anything.

Flash forward to 2005/2006 and I react to something I ate at a restaurant. Turns out I developed a spinach allergy. What? Ya, spinach. Strange but whatever it was totally manageable.

A few years go by and Ty is born Nov 2013, shortly later I eat a chocolate with nuts and my tongue goes numb and has what appears to be hives.... And then it happens again a couple months later. So finally in June I have testing and guess who has developed a postpartum nut allergy.

Yup, this girl right here.

Tree nuts and questionably peanuts. But the spinach test looks clear this time. So I traded one for two? Not only traded but upgraded in the levels of nuisance and item popularity. Nuts are everywhere! For days I was starving because I was afraid to eat. Then I learned that Canadian law is that all foods must contain allergens in bold including anything that may have potentially been cross contained. Ok that makes it a bit easier and I start to get more comfortable.

Until last week when I took the boys to my moms. First day there we stopped at a farm and grabbed fresh strawberries, raspberries and snap peas and ate those along with hotdogs for lunch. And then we called an ambulance because I started reacting and this time in addition to my usual tongue welts I felt like my heart was racing, my stomach turning and like I was going to pass out. Luckily it resolved and no hospital trip was needed.

More testing will occur in 5 weeks to give whatever it was time to leave my system.

Tonight I'm covered in hives, they are on my left leg and knew and behind my elbow. A few are showing up on my right leg as well. They burn and itch like crazy.

What the hell is going on with me???

Seriously. How am I developing all these allergies. I'm getting more and more anxious by the day, being home all day with the kids is nerve wracking. What if I eat something and it's so bad I pass out. I'm terrified.

I took some reactine tonight and took some pictures. Aside from some candies I haven't eaten since dinner, there must be something I came in contact with that's causing this. Something in my own home....

 This is ridiculous.

Mav allergy update

So on the topic of allergies I am pleased to say that Mav apparently does not have any.

Any IgE allergies that is; now knowing what I know about FPIES I am certain Mav's past reactions to banana's were FPIES reactions. But that will be something we explore on a different day.

As for the reactions he has been having since last summer, apparently he is not allergic to anything. He has recently been tested for seasonal environmental allergens and passed all those, he also passed two rounds of skin prick testing to check for common allergens as well as check some of the things we felt he was reacting to.

They all came back clear.

Now I should be jumping for joy with news like that, and believe me I am happy but that epi pen will not be leaving his bag any time soon. He has been participating in an allergy study since birth and one of the researchers commented on his reactions basically thinking that he may not be actually reacting but instead may just be overly sensitive. So for instance when I give him food that has ketchup on it, or ketchup to dip into his lips will start to look a little funny after a few bites. Same thing happened with chips he was given, and olives, and hotdogs.... It is the only pattern that seems to make sense. We were thinking his was having allergic reactions when that may not have been the case after all. Actually we know he's not allergic to those foods because of the testing.

So it makes it a little easier to go ahead and let him eat things, but I would be lieing if I said I wasn't nervous each time it happens. I try to limit those foods just in case.

The allergy study recently contacted us to actually do some blood work and use him as the non allergic control half of the next portion of the study. So we will be signing up for that. I really wish I had of signed Ty up for all of this, he would have made for a more interesting subject.

FPIES update

Just over a month ago we found out that Ty has FPIES; a type of allergy that results in delayed reactions primarily affecting the GI system. For Ty that meant 2 hours after eating the trigger food he gets violently ill, his last reaction was to oats and he ended up at the hospital with shock symptoms.

We still haven't been to see the specialist in his actual clinic, there was hope that they would be scheduling something in the month of June but the doctor said it would be most likely be July. After our little mini crash course with him I took it upon myself to find out everything I could to help prepare myself for what lies ahead. A lot of what I have found is terrifying. Some of these poor kids have very few safe foods. These parents monitor every little symptom their child shows and relate it to being FPIES related. Things like stomach cramps, FPIES. Reflux, FPIES. Poor sleep, mood changes, constipation and diarrhea, FPIES. Apparently There are kids with Chronic FPIES reactions (most of the above symptoms) that last longer periods of time from what I can tell, and then there are Acute reactions which is what Ty has.

My poor little brain has so much to learn.

So armed with my new knowledge and my starter list from the doctor we began our food trials. I found a dairy and soy free rice cereal which Ty hated. He hated it so much that I am not really comfortable saying it was a pass, after two days of force feeding it to him I moved on to sweet potatoes. Not only did he love those but they were a definite pass. Things were looking great, he was back to pooping regularly and overall doing great. Next up was squash. The doctor did not specify which kind so I asked the  "expert" moms on one of the facebook groups I have joined and it sounds like I will need to trial all different kinds. So far we have tried butternut, and although he has not vomited from it I am hesitant to call it a pass right yet. Some external factors like my left nipple cracking and him ingesting lots of blood have made for some funny stools and make it difficult to know what exactly is happening.

Since those were the only three foods the doctor listed us to start with I decided to go ahead and make the decision of what food we were trying next. I figure we will need to try most things anyways so I picked plums. I wanted something that will hopefully help him to become more regular, I think my next choice will be another fruit for the same reason. So far we are on day three of plums and everything is looking great. They are a little bitter tasting (I chose black) but if I mix it with breast milk he gobbles it right up and is yelling for more. This kid just can not get enough food.

I have a small calendar book that I have now dedicated to tracking child related things like illness and food trials. I probably should have started something like that when Mav was younger, poor kid has been sick so many times it would have been useful when talking to doctors. Anyways I like that I can plan ahead using the monthly calendar and I've created a symbol legend for poops and illness etc. I log the info in more detail on the daily pages, each day being sure to include what it was Ty ate and how much. Part of me wants to just be carefree with all of this and wonders if it is a bit much at times but then I remember feeding Ty will not be carefree for a few years* (hopefully he will outgrow it by age 3 with the majority). When planning the food trials its also helpful to see the calendar when planning since I do not want to risk a hospital trip on a day when I am alone with two kids.

So as of right now our food stats stand as follows:

Safe Foods
- sweet potato

Trigger Foods
- Oats
- Dairy (assumed)
- Soy (assumed)

Uncertains
- Butternut squash
- black plums

"What do you mean it's all gone!?!?"

What the F....PIES

FPIES.

Or better yet, Food Protein Induced Enterocolitis. 

It's looking like Ty has it, and we have been referred to a specialist we will see either June or July. 

So let's back it up a little and I'll explain how we got to this assumption. 

Ty is a very eager eater, I've mentioned before how breastfeeding has been not so pleasant this time around so about a month ago I decided to try to introduce formula as an alternative on days when either he was extra hungry or I needed a break. Unfortunately for everyone involved after two types of formula I gave up. We tried enfamil and similac and both types caused him to have very violent projectile vomit approximately 2-3 hours later. I wasn't overly concerned but had planned on talking to our doctor about it when we go next week. Don't get me wrong, I was concerned with his reaction but he is a breastfed baby and aside from my own physical discomfort there is no real reason not to nurse. He is always hungry so approximately a week ago I decided to grind up some oats and make him oatmeal. Once again approximately 2 hours afterwards he got sick. This time was frightening it was so bad. It was extremely forceful, projecting out of him and he was choking on it when trying to breathe. This "episode" as well as the previous ones all last approximately an hour.  This time he also turned a greyish colour, appeared very lethargic and almost unresponsive to stimuli around him. So off we went to the hospital. I probably should have called an ambulance so we could get there sooner but instead I waited the worst of it out at home and took him down once I felt comfortable having him in a car seat. Of course being that the worst was over the doctor decided he must have a virus. 

That brings us to our clinic visit yesterday. I took Ty down with a sample of his poop from the evening before. This poor guy is constipated a lot. And he gets very uncomfortable, it's so different than Mav who poops multiple times daily. Anyways the sample I brought in had a bunch of black stuff in it, my main worry was he was bleeding inside for some horrible reason. Well talk about right place at the right time because the medical resident we saw works with the specialist we are being referred to. Once she got all the background info she decided we needed a referral (I should mention the doctor she was actually working with that day felt there was nothing wrong) and luck struck once again because once she left the room to call the specialist she discovered he happened to be in the building. So we met with him and were given some basic intro to FPIES and we will move ahead with his clinic. Apparently this type of allergy is rare and most doctors are unfamiliar with it.

Obviously being that it is a rare type of allergy I needed to go do some more research once I got home. This is what I have discovered.

"Food Protein-Induced Enterocolitis Syndrome (F-PIES) is a type of food allergy affecting the gastrointestinal (GI) tract."

- symptoms include but are not limited to extreme vomiting approximately 2 hours or more after eating, diarrhea, and subsequently dehydration.
- symptoms can lead to lethargy, decreased body temperature, and lowered blood pressure. Reactions can have serious consequenes such as shock and need to be treated.
- unlike common (IgE allergies) , FPIES is a non IgE allergy and therefore can not be tested the same way. foods can test negative with a skin prick or blood test but still cause a FPIES reaction.
- Proteins in breast milk may or may not cause reactions in infants.
- children can have one or multiple trigger foods (trigger foods are the foods that cause the reaction)
- children are most likely to outgrow FPIES by the age of three.

I still have a lot of reading to do and am on the hunt for blogs, support groups, and basically any information I can find. From our initial meeting with the doctor we have been given the direction to go ahead and try rice cereal followed by squash, and sweet potatoes. All three of these foods are listed as being common FPIES triggers so that scares me a bit. It is suspected that diary and obviously oats have been the cause so far and I really would like to have a positive experience with the next food we try.  So fingers crossed. I may try the rice cereal this weekend while my mother is staying with us. There's something comforting about having your mother around, even as an almost 30 year old. I really cant be trying new things on days when its just me and the two kids, if we needed to go to hospital I do not want to try to bring Mav.

So wish me luck I have lots of reading and planning to do!


Here are a few of the resources I've been reading so far:
FPIES Foundation
Kids with Food Allergies
Allergy UK









 

Co Parenting

Webster's defines co parenting as the "shared duties of bringing up a child". It is often made in reference to a divorced couple raising their children while living separately. When really co parenting also describes two parents who are still living under the same roof. It is something my husband and I are failing at miserably. 

And because we are failing so miserably everyone's lives (hubby, Mav and mine) are in turn miserable. No one is happy here these days, no matter how promising the day starts. 

No this is not a post looking for encouragement and people to say we are doing great. This is the truth, the ugly truth and I am being honest. 

So why is this happening? Why is everyone so miserable? What could we possibly be doing that's so wrong. I will start by stating the obvious differences in our upbringings. 

Hubby grew up with parents who attempted to be married while making each other miserable. Discipline was forced and coincided with raised voices and negative exchanges of words. 

I grew up with a mother who had multiple failed relationships and pushed strongly for independence and feelings of self worth in her children. Discipline was more positive and involved talking about cause and effect of our behaviours. No force, no raised voices. Never were we ever made to feel bad about ourselves when being disciplined. 

Flash forward to these two people dealing with a toddler prematurely entering the "terrible two" phase. We disagree on how to deal with temper tantrums and everything else. If voices are raised Mav's behaviours get worse. And I am not innocent with this one, my voice raises. I do my best to balance it with positive reinforcement and take the time to explain to him why he can not behave in certain ways. 

A typical day looks like this. Mav pushes the boundaries and gets himself worked up which in turn increases the stress level of said parents. One of the parents then takes it upon themselves to manage the situation in a way opposite of what the other feels is right. Said parents then start fighting. Fighting parents then trigger Mav to increase behaviours to the next level. Parents fight more, one gives up while saying relationship damaging words to the other. Remaining parent gets Mav under control and finishes parenting duties. Parents continue to fight after Mav is in bed, go to bed with issues unresolved. The threat of divorce is thrown out there, sometimes a productive conversation occurs attempting to find resolution. However nothing ever changes and it all repeats the next day.

Now I realize I am much more shall we say hormonal this pregnancy, but I sadly do not think this is the cause of these issues. I search the Internet wide and far looking for insight on how to better manage these things. But things will only get better if everyone involved actually tries. One person can simply not sit back nod wait for the other to change before they try, it has to happen together. And you can't make someone change, or want to change. Especially when that someone blames the other as the main cause of everything wrong in their life.

I have suggested counseling, everything imaginable but only one person going does not work. 

I feel like I am standing in a small dark room and I am very worried about the upbringing of my children. I love my husband more than anything in the world, we have always been slightly dis functional when it came to how we deal with things. But now with children involved I worry about what our relationship will do to them. I do not want my children to grow up feeling the way my husband has expressed being made felt by his parents. But I have no clue how to make sure this does not happen. I can't control or change the way my husband parents, and let me say that from what I know despite the similarities he is not as harsh a parent as his. 

At this point I don't see a resolution. And that worries me, makes me scared for my marriage.