Tuesday 19 July 2011

Food allergies in the hospital

Wow, I have been really neglectful of this blog!  A busy life, I suppose, and no developments with Dylan's allergies left me with little to write about. However, now I am sitting in a hospital room watching my little guy sleeping peacefully at last, and I have both the time and the  topic.

Fortunately, Dylan is not in the hospital because of his allergies.  Hand, foot and mouth disease has been going around his daycare, with eight of the ten toddlers in his room coming down with this nasty viral infection.  We thought Dylan was in the clear, but unfortunately on Friday night he started complaining about pain in his mouth and wouldn't drink his bedtime milk.  He went to bed okay, but woke frequently through the evening hours.  I ended up sleeping in his room to be there to help him resettle if need be.  After all the resettling he slept through from midnight to about 730am.  When we got up in the morning I asked to see his mouth, and when he opened it and stuck out his tongue I saw a huge lesion on the side.  With a sigh I realized that Dylan was number nine.

Saturday was a bit of a rough day.  He still had a bit of energy, had a little bit of soft food to eat and some ice cream and water, but was definitely not himself.  He went down for his nap at the usual time, but I had to resettle him twice and he woke up fully quite early.  After this short nap he wanted nothing by mouth.  We gave him some Tylenol by suppository to help with the pain, and tried unsuccessfully to convince him to let us put some orajel in his mouth to help his "owies".  Fortunately, the Tylenol did help some, and he ate some ice cream and drank some apple juice.  We put him to bed Saturday night happy that he had had some fluids and were naively hoping that the worst was over.

Boy, were we wrong.

Saturday night was awful. AWFUL.  It was like going back to when Dylan was three months old, at the height of his eczema and sleep troubles.  I was up resettling every 30-45 minutes.  The longest stretch of sleep we got was from 2:45-5:30am.  I stayed in his room again, but really just dozed in between fixing his blankets and rubbing his back.  He woke Sunday morning in a relatively good mood, but that changed with his first sip of diluted apple juice - one small sip, and he covered his mouth and tears welled up in his eyes.  He covered his mouth and shook his head every time we offered him anything from that point on.  I changed a moderately wet diaper at 8am and gave more Tylenol, hoping that it would have the same effect it did yesterday.  No such luck.  Soy milk, water, apple juice, gatorade, freezies, ice cream; by cup, straw, bottle, spoon - everything was summarily rejected.  His mouth hurt him so badly that he wasn't even speaking; he was pointing and nodding or shaking his head to communicate. We were quite worried at this point, and called Telehealth (our provincial health service allowing you to speak with a registered nurse) to get advice.  After going into detail and answering numerous questions we were told that he should be seen by a doctor within 4 hours.  It was right at naptime and he desperately needed sleep after the previous night, so we decided to have him nap and then take him to be seen.

He had a great nap:  I only had to resettle him once, and I actually had to go in and wake him at the 3 hour mark.  When he woke up I offered diluted apple juice and water again, both of which were rejected.  Mike started getting our bag ready for the hospital when Dylan noticed  a plastic water bottle that I had left out on the side table; I had been drinking it during his nap.  He pointed to it, and Mike asked if he wanted some.  Dylan nodded, and he proceeded to drink about one third of the 500mL bottle.  Mike and I were so excited, thinking disaster was averted and we could deal with this at home.

Then poor Dylan threw it all up. 

So, to the hospital we went.  Thinking that maybe we had just allowed him to drink too much water too quickly, we allowed him smaller sips from the water bottle.  That was thrown up in the car on the way to the hospital, and then again in the hospital waiting room.  We arrived at the hospital ER right around 5pm, and we were taken to a bay by about 6:30.  Because of his dehydration and refusal to drink an IV was ordered and we were admitted to the paediatric ward at 8:30pm.  Blood work, a throat culture, more vomiting, and three attempts to get an IV into him left him with a panicked look in his eyes that I hope never to have to see again.  I fell apart during the IV process, sobbing when I was supposed to be comforting him.  Fortunately Mike was there and held it together when I could not, rubbing Dylan's head and whispering comforting words when I was too much of a mess to do anything but hold his hand.  We got back to the room and got settled, and after picking up some needed items for us Mike went home to get some sleep before having to work today.  After watching several episodes of Go Diego Go on my laptop Dylan finally fell asleep around 11pm.  To say it was a restless night would not even come close - between the IV, the strange bed and room, and the nurse having to check his vitals twice through the night, I spent the night comforting and resettling.  He fell into a good sleep in the wee hours of the morning, only to be awoken by a team needing another blood draw at 6:30am.  After that rude awakening, being held down in tears yet again, Dylan was certainly not going back to sleep.  He pointed to the laptop, so we watched more Diego and Dora.  He certainly looked much better, and according to the paediatrician his lab results looked great.  We can go home as long as Dylan can drink some fluids and keep them down.

The problem being that he won't even open his mouth.  Water, apple juice, pedialyte, freezies, jello are all being rejected again, shaking his head and pointing to his mouth.  During this process I have discovered that reasoning with a confused, scared, and sleep deprived toddler is about as effective as reasoning with an inanimate object, except that the toddler keeps crying to go home.  So here I sit, finally having gotten this exhausted little guy to sleep, just hoping that after a good rest I can get some fluids into him so that we can get out of here.  I don't even have wireless access at the hospital (not willing to pay for it when I am praying that this is a short stay) so I'm just typing away while he sleeps.  I've already had to resettle once, but he's been sleeping for a little over an hour now so I'm hopeful.

Shockingly, this already long entry really is supposed to be about Dylan's allergies.  I started typing thinking that I would just make our journey to the hospital a quick paragraph but out everything came.  I think I needed to do it though - I've been typing through tears and I feel like the weight on my shoulders has lifted slightly, though I still close my eyes and see his begging eyes staring back at me.  My only hope is that he forgets all of this, though I never will.  My heart goes out to every parent who has had to go through this and worse with their child.  We are fortunate in that this is our first hospitalization; some children have had to go through this in spades and I cannot even imagine...  Children should not have to be this strong.

Given Dylan's refusal to drink anything at this point, I got a visit from a very nice woman in charge of food services at the hospital.  She came in to discuss Dylan's allergies with me and what food options would be available to him.  Although he is on a clear fluid diet now, she wanted to take the opportunity to get things sorted should he be offered food at some point.  She was very pleasant, knowledgable, and helpful (as one would expect) but I was a bit stunned after our exchange.  She had his intake form which listed his multiple allergies and the seriousness of his reactions and wanted to discuss options with me.  I explained that he could not have food that even listed "may contain traces" of milk, egg, or peanut.  She asked if soy milk was ok, and I confirmed it was, and she went on to say that all of the bread available is MCT of milk, all pasta is MCT of egg, and that they make nothing in house so our options were going to be limited and bland - she couldn't even confirm if any "spices" could contain mustard.  Dylan's options should he get to a solid food diet will include plain rice, plain chicken, plain fish, plain veg/fruits, and puffed rice breakfast cereal.

I absolutely DO NOT plan on being here long enough to get to that point, but our discussion left me with many questions.  What if, God forbid, we were hospitalized more long term?  I know that Dylan's mustard allergy is uncommon, and given that mustard can be hidden in ingredient lists I absolutely understand that it is safer and easier to give him plain food and allow me to season it with salt/pepper and anything I bring from home.  I have no issues with that at all - one cannot expect a large food service operation to be able to cater to every single possible food allergy.  However, his other allergies (specifically the dairy and egg) are top 10 allergens.  Given the shocking increase in food allergies among children, I am stunned that there are not safe options available for breads, pasta, breakfasts, etc.  I don't expect Dylan to get a specially modified version of whatever meal is being served, but the unavailability of a basic food item like bread is upsetting to me.  More and more children have diagnosed food allergies, and dairy and egg are among the most common.  At what point will large food service operations take that into consideration?  At what point does it become cost effective to have a dedicated production line that is top 10 allergen free?  The problem is that there's no pressure for them to take it into consideration.

Allergen free foods are stocking the supermarket shelves of even discount stores because there is a market for it.  Allergies are on the increase, so it is in companies' best interests to produce food to cater to individuals with food allergies.  We will spend our money on products that are safe for ourselves and our children.  The pressure is there for those companies - our dollars.  The pressure isn't there for large food service operations.  They have their contracts with hospitals or retirement homes or airlines, and there is little for the food allergic consumer to do but settle for the plain chicken and rice because we have no other option.  Why should the food service operations go to the trouble and expense of a dedicated line when there is no pressure, financial or otherwise, to do so?

So, Mike brought in some bread from home, and some margarine too, because there are no dairy-free spreads available either.  And as I stare at my little man I can only be hopeful that our stay here is a short one.


Edited to add:  We ended up being in the hospital another night - the little monkey just wouldn't drink anything so they couldn't allow us to go.  Fortunately this morning, after some Tylenol and coaxing, he was able to eat some puffs and drink some water.  He started talking and asking for more, and his demeanor perked right up.  Off came the IV and here we are! :)

Tuesday 3 May 2011

Dairy, egg and nut free stroganoff

Eek!  Long time no blog...  Things have been crazy at work lately and I feel like I hardly have time to eat, let alone get on the computer!  But I had some time tonight, so thought I would post another recipe.  This is another one where the credit goes to another though:  my friend Heather was trying some paleo adaptations on favourite recipes and this one was perfect for us.  A delicious meal, whether you're dealing with food allergies or not!

Beef Stroganoff

1 onion, sliced
1-2 pounds of lean beef roast, thinly sliced
3 tbsp tomato paste
1/2 can of coconut milk
200g mushrooms, sliced (or a can of sliced mushrooms)
1/4 cup red or white wine
1-2 tbsp canola oil

Brown beef in a skillet using 1 tbsp oil. Remove and transfer to slowcooker. In the skillet, brown mushrooms. Transfer to slowcooker. Add 1 tbsp oil to skillet to deglaze and cook onions until just softening. Deglaze the skillet with the wine.  As the wine begins to reduce, transfer onions and sauce to slowcooker. Add tomato paste and about 1/2cup water to slowcooker. Cook on high for about 4 hours (or low for 6-8).
After 4 hours, add coconut milk and keep on high, with the lid removed for approximately 1/2 hour. 

Serve over mashed potatoes, pasta, or rice.

Tuesday 26 April 2011

Dairy, egg and nut free chocolate banana cake

This was the cake I made for Dylan's second birthday.  I made an allergen-free cake for his first birthday too, but it was a bit of a flop - this one was pretty much universally loved, and everyone was stunned that it was dairy and egg free!  I have to give credit where credit is due - my friend Martina (Life on the Bay) gave me the link to the original recipe.  I modified it a bit and it turned out really well!  See the original at Vegan Chocolate Banana Cake and here's my slightly modified version:

2 cups flour
1 cup sugar
2/3 cup cocoa powder
1 1/2 tsp baking soda
1/4 cup dairy free margarine (I use Becel Vegan)
1 1/2 cup hot water
1 tsp vanilla extract
1 cup mashed/pureed bananas (you can use more, I used about 2 large bananas with a bit of water)

Preheat the oven to 350.  Mix together dry ingredients in a large bowl.  Add margarine, hot water, and vanilla extract and mix well.  Add pureed bananas and blend thoroughly.  Pour batter into a greased 9x13 cake pan and bake for 45-50m or until a toothpick inserted in the centre comes out clean.  Let cake cool in the pan for 10-15m, then carefully transfer to a cooling rack to cool completely.


I frosted it with a simple white icing made with dairy free margarine, icing sugar, and vanilla extract (just add cocoa if you want a chocolate icing).  The only challenge is that this icing really isn't good for decorating as it softens considerably at room temperature - if you want a decorated cake you would do better to use coconut oil as it's more solid at room temperature.

Enjoy! 

Friday 22 April 2011

Happy Easter!

I love, love, LOVE long weekends.  Who doesn't?  A paid day off work, extra time to spend with friends and family, and a special holiday to boot!  But for parents dealing with food allergies, there's always extra things to consider.  Extended family dinners - what foods are going to be safe?  Do we truly trust the people preparing the meal with our child's life?  And for holidays like Easter (which is synonymous with decorating eggs and eating chocolate), how do we find fun and safe ways to celebrate?  The last thing that any parent wants is to see their child missing out for any reason.

The Easter long weekend has several traditions for us.  One is our Good Friday fish & chips dinner at our local independently owned seafood restaurant.  We go out to eat with Mike's parents and sister, my parents and sister, and my grandmother around 3:30pm (any later and the place is an utter madhouse!).  Mike's family goes to this restaurant nearly every Friday and they are well liked by the small staff.  This is fortunate for us, as everyone knows about Dylan's allergies and make special accommodations for us.  I bring some food from home (home made french fries, bread and our margarine, fruit or another dessert) and they poach us a fish fillet for him to eat.  He absolutely loved it last year, as it looked like he was eating the same food as everyone else!  I truly believe that going to independent restaurants (especially as a regular customer) is key.  At chains like Red Lobster, or Montana's or the like, so much food comes in mixes or is completely prepared ahead of time - I've even asked for ingredient lists and had the chef not be able to properly answer!  At independently owned restaurants I've found that the kitchen staff is much more knowledgeable, and much more flexible to safely deal with allergies.

What Easter weekend would be complete without an Easter egg hunt Sunday morning?  The Easter bunny has to be a bit more creative in our house, and tends to leave more toys, books, and art supplies than food.  Last year I bought a bunch of plastic eggs to fill myself, and I put stickers, fruit loops, Gerber puffs, and safe gummies inside.  While Mike was feeding Dylan breakfast, I went outside and 'hid' them all over the front lawn and by the house.  Dylan had a blast outside collecting all of the eggs into the basket, and then had even more fun when he discovered there were treats inside!  This year it's supposed to rain, so we are going to have to do our egg hunt inside.  We got him a Mega Blocks workbench (on sale for an amazing price I might add!) and a Mr. Potato Head (a current favourite) Easter bunny along with a couple of books.  I'm going to fill the plastic eggs with safe treats and hide them throughout the living and dining rooms and put the empty basket on his workbench.  Then we'll let the egg hunt begin!  I'm so excited this year because he absolutely loves surprises and presents, so I think it's going to be even more fun than the last. 




Our Easter breakfast is dollar pancakes, one of the things that I actually don't make right from scratch.  I discovered that Bisquick is completely safe for Dylan (the only allergen listed on the label is wheat) so I cut that corner with no qualms at all!  I don't really measure anything, but if I had to guess I use about:

1 1/2 cups Bisquick
1/3 cup applesauce or mashed banana (an egg substitute and adds flavour!)
enough soy milk to make a runny batter

I preheat my griddle to 350 and voila!  I enjoy real maple syrup, but the flavour is a bit too strong for Dylan.  We use President's Choice light table syrup for him; it has no butter flavouring and is plenty sweet.

We go to Mike's parents for Easter dinner and Mike's mom goes out of her way to cook safely for Dylan.  Turkey, potatoes, vegetables, gravy, all completely safe.  She makes popovers for the adults (not safe) but Dylan is just as happy with a slice of bread and his margarine.  Dylan sits at the table with all of us and often asks to share our food - it's so nice that we can say yes!!

I hope everyone has a safe and happy holiday and that you get to enjoy all of your traditions with the ones you love.

Wednesday 20 April 2011

Easy-peasy fish "sticks"

I don't even know if this qualifies as a recipe since it's so easy, but it's become a favourite over here so I thought I'd post it anyway!  This started because I wanted to have some more quick options for supper - I get off work at 4pm, drive across town to Dylan's daycare to pick him up, then back across to be home around 5pm.  Sometimes I plan ahead and have dinner in the slowcooker or a roast in the oven, but more often I'm scrambling to find something safe, healthy, and quick to feed the little man for supper.  Unfortunately, most things that are quick are neither safe for him, nor are they particularly healthy!

Take fish sticks, for example.  Fish are super healthy, processed fish sticks are most certainly not.  In addition to the milk and egg ingredients in every single brand, they often contain ingredients that I cannot even pronounce.  So I make my own, super easy, 3 ingredient fish sticks.  You need:

1 boneless fish fillet per person, your choice, fresh or frozen (I've used sole, halibut, and perch so far; and tend to use frozen so I always have it on hand and it's easier to manipulate)
1/4 cup flour per fillet (approximately, I rarely bother to measure anymore)
Seasoned salt or other seasoning of your choice, to taste

Place a couple tablespoons of oil in a skillet (I use olive, but anything would work) over medium heat. Cut the fillet(s) into fish-stick or bite size pieces.  In a bowl, mix flour and seasoned salt or other seasoning until blended.  Dampen the pieces of fish with water and roll in the flour mixture (use a fork rather than your fingers!) and placed in the heated frypan.  Cook until done (and it doesn't take long!).  Fish is done when the flesh is opaque and flakes easily with a fork.

That's it!  Super easy, no preservatives, as much or as little seasoning as you want, and you could even make it gluten free by using rice or coconut flour.  Enjoy!

The results are in...

... And they aren't pretty.

We got the blood test results on March 3rd.  They showed clinically significant allergies to milk, egg whites, peanuts, and mustard.  The threshold that they use to consider an allergy "clinically significant" is a result greater than 0.35.  Dylan's results were 0.8 for milk, 1.6 for egg white, 2.4 for mustard, and a whopping 12.8 for peanut. 

The allergist tried to present the results as good news, saying that it is likely that he will grow out of the milk, egg, and mustard allergies - not definite, and he made that clear, but probable given the relatively low IgE reaction.  The peanut is a whole different ball game of course.  He said that the much stronger IgE reaction, combined with the strong positive skin test result we got weeks before, makes it much less likely that he will grow out of that one.

He said that wants to redo the blood tests at age 3.  If the milk, egg, and mustard IgE levels are similar or lower then he wants to do a food challenge at that point.  He said that he doesn't ever do food challenges under age 3 as younger children can't communicate that they're having a reaction - you can see hives, swelling, and the like, but you can't see "my tongue feels funny" or "my throat is itchy".  Ultimately, the results just meant that we had to keep doing what we were doing, eliminate peanuts from the house, and play the waiting game until October 2011.

At the time, I truly was hopeful that Dylan would outgrow some of his allergies.  Unfortunately, with each passing day, and with each incident of hives (random or explained), that seems less and less likely.  Anything is possible, and we are still going to repeat the blood work, but I would be amazed if he outgrew anything at this point.  Which is why I decided to write this blog - to share our story, to share recipes, and to share our struggles.  If my posts can help even one family going through the same challenges we are, then I consider this time well spent.

Tuesday 19 April 2011

The allergist

Thanks to a cancellation we had our appointment with the allergist on January 29, 2010.  He was very nice, took a very detailed history, and asked if I wanted the scratch test done that day.  Although I wasn't expecting it (given that the receptionist specifically called the appointment a "consultation"), I figured we might as well since we were there anyway. They were booking appointments into March so it would have been a while before we could get in again.  We did milk, egg yolk, egg white, peanut, dust mites (apparently a very common cause of eczema, which I didn't know) and orange.

We got a strong positive result for milk, as expected.  Got a weak positive for egg white (likely the cause of our Christmas morning reaction).  And finally, got a very strong positive for peanut, which was NOT expected.  He'd never had peanut before, but had likely been exposed to it as Mike and I were not very careful with it (for example, I would eat peanut butter toast while feeding Dylan breakfast - he wasn't eating the pb, but likely came into contact with it).  They even redid the peanut scratch, and got another positive result, though weaker the second time.  I absolutely hated the scratch test.  Dylan was just so upset, and the poor little monkey didn't even understand what was going on.  I hated putting him through that.

The results prompted the allergist to recommend blood tests.  He said that he normally didn't like doing blood tests on children as young as Dylan, but given that he was in a daycare setting he felt it necessary.  In addition, children with eczema can react to scratch tests due to their sensitive skin, so a false positive result was possible.  (As an aside, that frustrated me a bit - if you knew that children with eczema can get false positives from scratch tests, why do them?  Why not just skip to the blood tests?)  So we decided to do blood tests for the 3 positive results, and also for mustard, which they didn't have available for the scratch test.  We also got prescribed epi-pens due to the severity of his reaction Christmas morning.

We got the blood tests done February 3, and they went better than I had expected.  He freaked out as soon as I laid him on the bed (of course) but the nurse doing the procedure was slick. He was crying, but his cry didn't change in pitch or intensity when she stuck the needle in, so she didn't seem to hurt him.  In fact, I was singing twinkle twinkle to try and distract him, but stopped when we were done. I picked him up and hugged him and kissed him and told him he was brave, then he touched my lips and signed 'more'. I thought he wanted more kisses but realized that he wanted more singing! Probably the only person in the world who would!  Now we were just waiting for the results, which we were told would take up to a couple of weeks.