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June 25, 2012
It's been forever, so we hold on, because this is going to be a long one!
First, Matthew has three new foods, which brings him up to a total of nine foods now! He passed corn, egg, and quinoa (pronounced keen-wa). He loves eggs, which is awesome since it's the only source of traditional protein available to him at this point. Fish and poultry are common FPIES triggers, and Matthew's venison fail knocked out all mammalian meat, so we're thrilled that Matthew passed egg! Quinoa is a pseudocereal that is closely related to beets and spinach. You may have never heard of quinoa...neither had I until FPIES came along. It's super-nutritious, packed with protein, fiber, calcium, phosphorus, magnesium, and iron...so quinoa has been a great addition to Matthew's diet. And corn...CORN!!!!! Until you watch labels, you don't realize exactly how essential corn is to cooking. With his corn pass, Matthew can now have baking powder, white vinegar, corn syrup, corn starch, powdered sugar, corn oil, popcorn, grits, corn chex, corn flour, masa, polenta, plain old corn (on or off the cob), and even fritos! And corn is the best complex carbohydrate out there to keep Matthew's ketones down, so we're extremely thankful that it was a pass :)
Also, with the corn pass we'll be able to have actual cake at Matthew's 2nd birthday! With only one substitution (for flour) and omitting the icing, he'll be able to have carrot cake :) I know, it's still six months away, but you don't realize how much our culture centers every event around food until your child can't share in the fun. My mom and sister were awesome about keeping Matthew safe during Easter. They taped over 400 eggs shut to make sure Matthew couldn't get to the chocolate or jelly beans inside. We skipped a parade recently, even though both Matthew and Abby would have loved to see the band and the floats...because a big part of parades involves throwing candy to the kids. We didn't have cake at his first birthday, and I am totally at peace with that...but I literally jumped up and down when I realized that carrot cake is in Matthew's future :)
One disappointment is that Matthew failed dairy in May. We were really hoping he'd pass since he's never reacted to the dairy protein through my breastmilk, but it was a huge fail. He failed it on his second ingestion, even though it was baked at 350 for over 30 minutes to break the protein down as much as possible. The vomiting pushed his ketones higher than we've ever seen, but once he was able to hold down solids, we saw how powerful corn really is. He went from 1.8 mmol/L ("contact your doctor immediately" range) down to 0.5 mmol/L (the "normal" range) in an hour. And we're more thankful than ever that I am able to nurse Matthew. Since he is definitely FPIES to dairy, starting off with formula would have meant hospitalization as a newborn, when reactions are much more dangerous and severe.
We've also had two appointments with a dietitian, and it's been an awesome experience. Even though his weight gain has been great, we've still been worried about what such a restricted diet is doing to his brain, bones, etc. She said that Matthew's diet actually looks really great. Just adding quinoa helped a lot, and adding swiss chard (for vitamin K) will get him pretty much to where he needs to be. She also said Matthew's nutritional profile looks better than most kids his age, so we're not so worried anymore. I have to continue to breastfeed him at least until he's two, and we'll have to see where we are then since dairy is out. But for now, we're in a good place, and are just navigating foods as safely as possible. We're currently trialing onion to add a little flavor before diving into swiss chard.
With all the additions to his diet, we've tried baking for Matthew. It's kind of hit or miss right now...baked goods aren't his favorite at the moment, but he's definitely a fan of foods that are fried. He didn't like either corn bread or quinoa muffins, but corn fritters, quinoa tots, and hash browns were all a hit. I'll keep pushing the baked goods, because this boy only has six months to get as excited about cake as we will be :)
The results of Matthew's genetic test for SCOT deficiency came in a month ago, and they were negative. So he does not have SCOT deficiency, but he does seem to have some type of metabolic disorder that mimics SCOT deficiency. When the nurse called with the results, she told Nick that our geneticist felt that he was at the end of what he could do for us, and referred us back to our pediatrician. We were kind of shocked....there's definitely something going on with Matthew's ketones, and no one has been able to give us any real information on what's going on, so being referred back to our pediatrician was something that we (and our pediatrician) were not comfortable with. We had a family trip planned up to see Nick's parents in Rochester, MN...which just happens to be the home of Mayo Clinic. So our pediatrician thought it would be a great idea to see if Mayo could figure out what's going on with Matthew. So far he's seen a pediatric endocrinologist, allergist, and GI at Mayo. They ordered a lot of tests, which we're waiting on the results of now. He has an appointment with one of the pediatric geneticists at Mayo in two weeks, so hopefully we're getting a little closer to identifying exactly what's going on with his ketones! We'll keep you posted as to what they find out :)
And the very last thing...there was a FPIES get together at the new Green Play Yard at the Arboretum in the twin cities while we were up visiting Nick's parents, so we got to hang out with six other FPIES families! The parents and kids were all so wonderful, and it was nice to have real conversations with other parents who are living through the same ups and downs that we are :) I'm so thankful for all of the families in the FPIES community. Everyone is so helpful, thoughtful, and dedicated to making sure that every kid (not just their own) makes it through FPIES safely, as well as making sure that every parent survives FPIES with their sanity intact :)
First, Matthew has three new foods, which brings him up to a total of nine foods now! He passed corn, egg, and quinoa (pronounced keen-wa). He loves eggs, which is awesome since it's the only source of traditional protein available to him at this point. Fish and poultry are common FPIES triggers, and Matthew's venison fail knocked out all mammalian meat, so we're thrilled that Matthew passed egg! Quinoa is a pseudocereal that is closely related to beets and spinach. You may have never heard of quinoa...neither had I until FPIES came along. It's super-nutritious, packed with protein, fiber, calcium, phosphorus, magnesium, and iron...so quinoa has been a great addition to Matthew's diet. And corn...CORN!!!!! Until you watch labels, you don't realize exactly how essential corn is to cooking. With his corn pass, Matthew can now have baking powder, white vinegar, corn syrup, corn starch, powdered sugar, corn oil, popcorn, grits, corn chex, corn flour, masa, polenta, plain old corn (on or off the cob), and even fritos! And corn is the best complex carbohydrate out there to keep Matthew's ketones down, so we're extremely thankful that it was a pass :)
Also, with the corn pass we'll be able to have actual cake at Matthew's 2nd birthday! With only one substitution (for flour) and omitting the icing, he'll be able to have carrot cake :) I know, it's still six months away, but you don't realize how much our culture centers every event around food until your child can't share in the fun. My mom and sister were awesome about keeping Matthew safe during Easter. They taped over 400 eggs shut to make sure Matthew couldn't get to the chocolate or jelly beans inside. We skipped a parade recently, even though both Matthew and Abby would have loved to see the band and the floats...because a big part of parades involves throwing candy to the kids. We didn't have cake at his first birthday, and I am totally at peace with that...but I literally jumped up and down when I realized that carrot cake is in Matthew's future :)
One disappointment is that Matthew failed dairy in May. We were really hoping he'd pass since he's never reacted to the dairy protein through my breastmilk, but it was a huge fail. He failed it on his second ingestion, even though it was baked at 350 for over 30 minutes to break the protein down as much as possible. The vomiting pushed his ketones higher than we've ever seen, but once he was able to hold down solids, we saw how powerful corn really is. He went from 1.8 mmol/L ("contact your doctor immediately" range) down to 0.5 mmol/L (the "normal" range) in an hour. And we're more thankful than ever that I am able to nurse Matthew. Since he is definitely FPIES to dairy, starting off with formula would have meant hospitalization as a newborn, when reactions are much more dangerous and severe.
We've also had two appointments with a dietitian, and it's been an awesome experience. Even though his weight gain has been great, we've still been worried about what such a restricted diet is doing to his brain, bones, etc. She said that Matthew's diet actually looks really great. Just adding quinoa helped a lot, and adding swiss chard (for vitamin K) will get him pretty much to where he needs to be. She also said Matthew's nutritional profile looks better than most kids his age, so we're not so worried anymore. I have to continue to breastfeed him at least until he's two, and we'll have to see where we are then since dairy is out. But for now, we're in a good place, and are just navigating foods as safely as possible. We're currently trialing onion to add a little flavor before diving into swiss chard.
With all the additions to his diet, we've tried baking for Matthew. It's kind of hit or miss right now...baked goods aren't his favorite at the moment, but he's definitely a fan of foods that are fried. He didn't like either corn bread or quinoa muffins, but corn fritters, quinoa tots, and hash browns were all a hit. I'll keep pushing the baked goods, because this boy only has six months to get as excited about cake as we will be :)
The results of Matthew's genetic test for SCOT deficiency came in a month ago, and they were negative. So he does not have SCOT deficiency, but he does seem to have some type of metabolic disorder that mimics SCOT deficiency. When the nurse called with the results, she told Nick that our geneticist felt that he was at the end of what he could do for us, and referred us back to our pediatrician. We were kind of shocked....there's definitely something going on with Matthew's ketones, and no one has been able to give us any real information on what's going on, so being referred back to our pediatrician was something that we (and our pediatrician) were not comfortable with. We had a family trip planned up to see Nick's parents in Rochester, MN...which just happens to be the home of Mayo Clinic. So our pediatrician thought it would be a great idea to see if Mayo could figure out what's going on with Matthew. So far he's seen a pediatric endocrinologist, allergist, and GI at Mayo. They ordered a lot of tests, which we're waiting on the results of now. He has an appointment with one of the pediatric geneticists at Mayo in two weeks, so hopefully we're getting a little closer to identifying exactly what's going on with his ketones! We'll keep you posted as to what they find out :)
And the very last thing...there was a FPIES get together at the new Green Play Yard at the Arboretum in the twin cities while we were up visiting Nick's parents, so we got to hang out with six other FPIES families! The parents and kids were all so wonderful, and it was nice to have real conversations with other parents who are living through the same ups and downs that we are :) I'm so thankful for all of the families in the FPIES community. Everyone is so helpful, thoughtful, and dedicated to making sure that every kid (not just their own) makes it through FPIES safely, as well as making sure that every parent survives FPIES with their sanity intact :)
Having fun with all the kids at the FPIES get together!
