Baby Heartburn and Toddler Blood Tests

Ben is 11 weeks old now and I feel like we've had about a thousand doctor's appointments since my last post. You're probably thinking Beth, but alas, our little guy has digestive issues too!

Ben started crying whenever he ate and waking up every one or two hours through the night. I kept hoping he would start to sleep through the night at around 7 weeks, but that's when the real fun began. We discovered that he has infant reflux. Basically, he has bad heartburn. Acid comes back up his esophagus and burns his throat so it hurts when he eats. He also coughs like an old man and gags until he dry heaves. We can't put him on his back after he eats so we bought him a cradle that is on an incline so he can sleep and he now takes Zantac twice a day for the heartburn.

He should be greatly improved by around 4 months of age. We're lucky really since a lot of babies with reflux puke so much they have trouble gaining but Ben has the opposite issue. He is so fat he is almost the same size as his 10 month old cousin!

He is very happy now and sleeps for as long as 5 consecutive hours at night right now, which is heavenly.

And now an update on Beth.

We took Beth to a naturopath who sent her for blood tests. Have you ever taken a 2 year old for blood tests? I don't recommend it.

I held her down while they poked that needle in and out of her arm over and over and then again in the other arm. They couldn't find a vein because she is so little. So they told me to go to the biomedical lab down the street and try again. A week later I took her there. I had to wrap my legs around her and it took two nurses and me to hold her down. Once again they went in and out of her arm over and over with no luck. We had to give her a break and then do it again and praise the lord they found a vein!

Now when we play doctor Beth stabs me in the arm over and over and pretends to put bandaids on me. It definitely made an impression on her.

The outcome of the test was a long list of food that her body reacts to. Some foods she reacts to violently, and others we don't see any outward reaction. It confirmed all the grains, except it said rice was safe. If you recall, rice put her in the hospital vomiting blood last time we tried it. It also confirmed almonds and peanuts but the other nuts were safe.

The naturopath wants us to put her on an extremely strict diet for 3 months. We tried it for about 3 days and then gave up. She couldn't have dairy. I mean, what do you give a kid who can't eat dairy, almond milk, soy milk, or rice milk? the alternatives were flax milk and hemp milk. I tried both. no dice.

So we have decided to keep her on her current diet and wait until she is older and then give her some grains and see what happens. She should outgrown her issues at age 3. She is almost 2.5 now so not much longer!

Our miracle baby

Just felt like writing about Ben's birth as it's an amazing story and i am still so overwhelmed by how blessed we have been.

Ben was breach early in pregnancy but flipped around at the end. However, he tied his umbilical cord in a knot when he did this. Cord knots only occur in 1% of pregnancies and of those only 1 in 2000 will tighten. Well guess what happened? It tightened.

Labour was smooth and quick, only five hours total. I had taken measures to have him born early as i was tired of being pregnant and anemic. I was planning a totally natural birth so i could go straight home after. With midwives you can leave the hospital right away if you want but an epidural would mean staying the night to get my legs to work again.

The last hour though i got overwhelmed and asked for the epidural. I felt pretty disappointed in myself until i learned that this act was one of the reasons ben survived. By the time they gave me the meds it was time to push so i still got to feel the full fury of everything. However after two pushes the nurse and midwife grabbed me and started urgently saying to push my hardest and not to stop. He had to come out that minute they said. I didnt question it, i just pushed till i nearly fainted. He came out in 8 minutes, arm up and cord wrapped around.

Now here's the crazy thing. He was only a few seconds from being still born. There would have been no time to use other means to get him out or save him. It had to be me pushing him out. The knot tightened and cut off his oxygen and his heart rate plummeted suddenely. If i hadnt asked for the epidural, i wouldnt have had a heart rate monitor on which is how they knew as soon as his heart rate fell. It would have also been harder to push him out.

He had his arm up and the cord wrapped around him too, making it seem impossible that i could push him out so quickly. The midwife and nurses thought he was going to die. And if he hadnt come early he would have been bigger and harder to get out.

So basically my son should not be here but he was saved. If he ever doubts his purpose i can tell him that God spared him for a reason. That all the little details surrounding his birth fell into place because of God's goodness and for a set purpose. And we just marvel at him every day because we know how close tragedy came to our family and we are so grateful for him.

Happy Birthday Beth!

So, as promised, a blog on how to do an FPIES birthday cake that everyone will like.


We planned a sesame street themed birthday party for beth. I believe there were 15 adults and 7 kids there! Don't worry, it wasn't in my house. I rented our clubhouse for that. We had a kids snack table with cucumber, cantelope, strawberries and cheese, beth's favourite snacks, and we ordered pizza for everyone except beth.


I'm not horribly anal about unsafe food in the area if I'm there and everyone in the room is aware of her issues. I just reminded the adults not to leave plates laying around. Beth isn't too curious about that stuff though. I tell her it's not for her and she says "Make Beth sick". So smart!


The cake, however, had to be all Beth friendly. Did you know that icing sugar has cornstarch in it? Corn is an evil food, it is in everything and Beth cannot eat it. Baking powder also has cornstarch. So does store bough icing or scribblers, light sour cream and many yogurts (her cake recipe called for sour cream)


So I found icing sugar and baking powder at Healthway Market in Abbotsford which uses tapioca starch instead of corn, thank you Jesus.


I used a natural, plain yogurt from Save on foods. The flour was entirely Quinoa flour and I had to use real butter because margarine has soy in it, and sometimes corn. Lame.


Here is the recipe courtesy of Bob's Red Mill (one day I will meet this Bob and kiss him).

• 1/4 cup unsalted butter
• 1/2 cup boiling water
• 1/4 cup cocoa powder
• 1 cup sugar
• 1 1/4 cups organic quinoa flour
• 1/2 tsp baking powder
• 1/2 tsp baking soda
• 1/2 tsp salt
• 2 eggs
• 1/2 tsp vanilla
• 1/4 cup sour cream

Preheat oven to 375 degrees. Place the butter in a small heat resistant bowl. Pour boiling water over the butter and stir until completely melted. Whisk in the cocoa powder. In a large bowl, sift together the sugar, quinoa flour, baking powder, baking soda and salt. Add the cooled cocoa mixture, egg yolks, vanilla and sour cream and blend well. Beat the egg whites until stiff but not dry. Fold into batter.

Spoon into a muffin tin lined with paper cupcake liners. Bake for 20 minutes, or until a cake tester inserted in center comes out clean. Makes 12 gorgeous cupcakes.

I did not make cupcakes, I just did a double batch and poured it into two round cake pans. I used butter cream frosting and royal icing to decorate it. I've never decorated a birthday cake like this before. It definitely wasn't anything professional but the focus wasn't on appearance, it was on making something edible that Beth would not throw up two hours later.

The funny thing is, she had one bite and then wanted to go play. She does not know junk food. She only ever has cake on her birthday and she's only had two of those so it's not that exciting for her. She loved to look at the cake though and blow out the candles and I had the peace of mind knowing that everyone was eating Beth friendly food. And everyone else really liked the cake so that was satisfying. I couldn't have it because of the dairy in it, you can't win 'em all.

The big appointment/disappointment

So we had our visit to Children's Hospital to see the 6th doctor for Beth. He was a pediatric gastroenterologist. I had to demand a referral to him at a walk in clinic just to get this appointment so I was very excited. I have been asking for a referral to an allergist since she was 4 months old but the doctors just kept saying "they don't allergy test on babies" which is complete crap because I know babies who have been allergy tested.

Advice: If you think your kid has an allergy issue, you tell them what they need to do, do NOT let them give you some BS response like "oh he's fine, he's just sensitive, he'll outgrow it". You are not an idiot, you know your kid better than they do.

Anyways, I told the doctor about FPIES and big surprise, he'd never heard of it. But I came prepared with an article and he was surprised that it was from a reputable source. Not sure if I should have been offended by that. But basically he said it sounded like a fancy name for a protein allergy. He explained what that meant, that her gut was too permeable and certain proteins would pass through the lining and her body would have a reaction. This is the exact description of FPIES so he wasn't giving me any information I didn't already have.

He then said "well what do you want me to do?". I told him I needed to know what our next step was, that we didn't want to start trying her trigger foods unless we had good reason to believe she had outgrown her intolerances. He said her gut should be corrected by age 2 and we should try again and if there was a reaction, see an allergist.

This was where I nearly lost it. How am I supposed to see an allergist when nobody will refer me!!! He then changed his story and said he would refer us and we should wait to see the allergist before trying any new foods.

Anyways, we got a referral to the allergy centre at Children's. Guess what? 10 month waiting list! So for the time being we will continue with our daily grain free, nut free, soy free diet for Beth and later in the year, probably between 2.5 and 3 years, we will either muster the courage to test her on something like wheat, OR we will wait for the allergy appointment, which may or may not be helpful. Either way, I think we are going to just have to take care of business ourselves, which we have been prepared to do since seeing the first doctor when she was 4 months.

In other news, Beth now loves raisins, cucumber and baked apple chips which I make at home and she graduated to big kid sunday school early as it provided a safer environment for her, cookie free!

FPIES and Playdough

Beth is now at the age where playdough is very popular. Unfortunately, the play dough that I am accustomed to is unsafe for her as it's made from wheat. All the recipes I see online for home made play dough use wheat or cornstarch, both of which are big problems for us. I tried finding a grain free recipe but it wasn't looking good. The best I found was gluten free, which used rice flour (which is of course a BIG problem for us) so I decided to try it with arrowroot and tapioca flour instead. The result was weird but awesome! I have a big blue mass of squishy stuff that you can stretch and smush all you want. It doesn't mold as well as play dough but it's still fun. We used some of the mr. potato-head pieces to make faces and we made snowmen. I just wrapped it up tight in plastic wrap after we were finished and it's just fine to sit on the counter. The recipe is below. It was very odd to make but I think I'll start making some other colours now.

Grain Free PlayDough

1/2 cup arrowroot starch
1/2 cup tapioca flour
1/2 cup salt (that is not a typo, it really asks for this much)
2 tbls baking soda
1 tsp oil
1 cup water

put all ingredients in a pot and whisk together. turn on medium heat and stir constantly with a rubber spatula. You can add in some food colouring at this point if you want. Clumps start the form and stick to the bottom so keep scraping the bottom and stirring. Eventually it all becomes this big, gummy mass of sludge. Once it's a ball, turn it onto some parchment paper and let it cool. Then you can knead it a bit which helps it get a smoother consistency. It's kinda like play dough meets gak (remember gak?)

**Stayed tuned for how to make a grain free/nut free/soy free sesame street birthday cake

What the heck is FPIES?

FPIES is not a disease. It's a form of food allergy but it's a delayed hypersensitivity. They don't react for at least 2 hours after eating the trigger food.

The reaction comes out of nowhere. Beth will literally be running and laughing and then heaving her little guts out. The vomiting is extremely strong. She empties her stomach entirely for 2 hours at least. By the end it's stomach fluid and it burns her mouth and lips so she gets sores.

The risk is dehydration and shock. Beth is usually very weak and often falls asleep during the ordeal. So we hold her while she sleeps and then she wakes up, heaves, cries, and falls back asleep right away. When she's done she just sleeps it off. She usually has about 2-3 days of diarrhea after that and a very small appetite.

The good news is that almost all FPIES babies outgrow it by 5. Most start outgrowing intolerances by 3. Unfortunately,  they don't outgrow it all at once. She'll outgrow rice at one point and wheat at another so we have to test her over and over to see if each food is safe.

My hope is that by the time she's in school I won't have to come guard her from over generous children who want to share their food.

The biggest frustration I deal with is people not having a clue what's in their food. If I say no grains, they still think rice is fine and corn is fine or 'here beth, have a cookie'.

Jon and I decided after her last reaction that nobody was allowed to feed her except us (meaning others can give her food but only if it's food we provided). It's hard, because people really want to make food for her, but we just can't risk it. Nobody else is as motivated as we are to protect her.

Please stop offering my kid cookies!

I've decided to start a blog to track our battle with food issues. I think a lot of people get confused and overwhelmed by me and beth's issues and it can be confusing. And this allows me to vent too!

To set the record straight, Beth did NOT inherit food issues from me. She doesn't have the same intolerance as me nor does she react the same way. I was not like her as a baby.

Beth has FPIES (Food Protein Induced Enterocolitis Syndrome). At least we are almost positive she does. We're hoping for an official diagnosis in February. We've had to find answers ourselves because the medical profession has been less than helpful thus far.

Beth is NOT celiac. She does not have issues with gluten. I am also not celiac to be clear.

I hope this blog will be informative and also encourage any parents of children with "mystery" health problems to hang in there and fight for answers.

So, a little background on Beth's FPIES. Here's the breakdown of her reactions

4 months old: First taste of rice cereal = violent vomiting for 2.5 hours. We thought it was a reaction to dairy.

4.5 months: Second taste of rice cereal with soy= 2.5 hours of violent vomiting. No more solid foods for a while. This was the point when I first googled intolerance to rice and found an article on FPIES.
- We took beth to the doctor and was told she was fine, to wait 15 days and try again.....I'm not an idiot, we did not do this and I found a new doctor.

6 months old- spoke to a dietician and was told to try oats = 2.5 hours of violent vomiting
- spoke with an allergy specialist, was told that a reaction to rice and oats was common and to try other grains
- finally success with Quinoa!! (for the record, quinoa is NOT a grain, which is why it worked)

8 months old- first taste of wheat (booo!) = 2.5 hours of violent vomiting
- we made the decision to put beth on a grain free diet, read a lot about FPIES and decided we would have to wait for answers
- took beth to a new doctor in Abbotsford, he said she was just sensitive and didn't need a pediatrican, she's fine (haven't been back since)

I found a lot of recipes using Quinoa, Buckwheat, arrowroot, tapioca and potato flour. Beth started eating bread, muffins and cookies and I managed a respectable chocolate cake for her first Birthday. All other foods were going fine including meat, eggs, dairy, veggies and fruit.

16 months - SOY. We were at the dog park when she started choking on her vomit. Had to drive home while she projectile vomited all over the car. Once again, 2.5 hours of awful (my towels are all ruined by now)

- I found a new doctor for me at a drop in clinic and told him about Beth. He was amazing and actually said "I don't know anything about this so I will refer you". Shouldn't that be the attitude of all doctors? If they don't know, find someone who does!

We went to the pediatrican and Beth was allergy tested which I was not optimistic about as I knew that FPIES does not show up in regular allergy tests. The results were what I expected. The doctor said she has no allergies so try rice again since it's been so long, she's probably outgrown it.

You'd think by now we would have learned, by no, we listened to him because we wanted so bad for him to be right.

18 months- Rice= 4 hours of vomiting and a trip to the hospital after she vomited blood.
- pediatrician at the hospital said she was just sensitive and she was fine

18.5 months- ate cousin Hannah's grain free birthday cake made with almond flour= 2.5 hours of violent vomiting. We did NOT see that coming. No more nuts for Beth!

We were finally referred to children's hospital when Beth had an ear infection. I took the opportunity to rather forcefully tell the walk in clinic doctor that we WERE getting referred to Children's. I wanted a pediatric gastrointestinal specialist. He just looked at me and said "OK". I could have kissed the man.

The big day is February 7, 2012. One week before her second birthday.