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
Tuesday, 3 January 2012
Friday, 16 December 2011
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.
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.
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.
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