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March 15, 2012
It's been so long since our last update! There have been little things going on, but for the most part we've been in limbo, so we put off updating until we had some news on the medical front. This is a LONG one...so I'm apologizing in advance ;)
Matthew is such an awesome eater now! He eats about one avocado, 1/4 of a potato, 2 oz of spinach, and 1/2 a pear a day. He's not such a fan of broccoli right now, and carrots we work in every three days, but they just aren't his favorite. We've found a few fun things to add some variability to the same foods day in and day out. One was a tip from another FPIES parent here in Austin. She recently moved to town, and has two kids who are exactly the ages of Abby and Matthew! We had a play date, and it was SO awesome to hang out with a parent who totally knows what we're going through, with no explanations needed. The other cool thing is that her son's safe foods are almost identical to Matthew's...so when she pulled out a package of Brothers All Natural pear crisps for her son to snack on, you'd have thought I had just won the lottery! As soon as she left I popped online and bought a case through their website. They're pretty yummy, so between Abby and Matthew we go through a package a day. Another food that has made it into our daily rotation is noodles! That's right...through another FPIES parent we found out that there are Gefen potato noodles available during Passover. I feel a little bad buying up all the Passover safe wagon wheel noodles at our kosher grocery store before their Jewish shoppers have a chance to get them...but hey, they are only made for passover season. If I can't get 30 packages right now we won't have enough noodles to last an entire year. We've also found a way to get Matthew to eat spinach (yep, a tip from another FPIES mom) - we make "spinach chips" in the oven, which are similar to kale chips. He LOVES them!
Another big change in our house....Matthew started sleeping six, seven, and sometimes eight hours straight at night! Awesome, right!!!????!!!! Well, I would have been jumping up and down if he didn't have the ketone issue. Instead I was scared out of my mind. Nick was on a business trip to India for three weeks, and I was home by myself when this started. I didn't know what to do...we were out of blood ketone test strips and insurance wouldn't cover the refill for another week. OK, the truth is I somehow missed the fact that there even WAS a refill. Chalk it up to sleep deprivation. I called the doctor trying to get another prescription, but they hadn't returned my call by the time I figured out there was a refill. Then the pharmacy takes two days to get them in (because they just don't stock them), but they also lost my refill request so that took an extra day, and then it was one day out from insurance covering it. So I went for a week waking myself up to feed him, even though he would have kept sleeping. When we finally got the strips in, I started testing him every night. After six hours of sleep his ketones would be anywhere between 0.8 - 1.2 mmol/L. Keep in mind, 0.6-1.4 mmol/L is the "you should be worried" range, and 1.5 mmol/L and up is the "you should head to your doctor's office or a hospital" range. So, it wasn't as bad as it could have been, but I definitely had a reason to be worried. Since the metabolic disorders the doctors are looking at require high carb-low fat diets to keep the ketone levels in check, I started playing around with Matthew's meals. If he eats 1/4 of a potato and 1/3 of an avocado for dinner, and then drinks a 5oz bottle right before bed, his ketone levels stay down long enough for him to sleep for six to seven hours. Avocado alone for dinner seems to be useless, and potatoes alone do an OK job, but combining the two seems to give us the best result. We let him sleep as long as he wants now without worrying too much, but this is definitely on the list of things to discuss with Dr. Gibson, the metabolic disorders geneticist, during our next appointment.
So...Dr. Gibson. We were supposed to have an appointment on March 7th....yeah, you did read "supposed to." I confirmed the appointment date and time with his nurse a month out, just to make sure everything was set. Every time I called asking about ketone strip prescriptions, worried about him sleeping longer and asking for instructions, or inquiring about the lab work we had been billed for but were never given the results of, we were told that we would get the answers at our appointment on March 7th. We even moved Matthew's allergy appointment back so that we could get an answer about his metabolic disorder prior to planning his next food trials. I had the food logs, blood ketone charts, and two pages of questions printed out for the appointment. We had arranged for Abby to stay with a friend, and Nick moved a meeting at work so that he could be there. But, as I'm packing up all of the kids' stuff that morning, I decided to call and double check since we had not received an appointment confirmation call on the previous day. Not only had our appointment for that day disappeared...we weren't on the schedule for ANY appointments in the future!!! You have no idea how upset we were...are you KIDDING??? And the earliest available appointment is April 4th, so we have to wait another month. Let's just say I'm not very happy...and I still have no idea what happened. Dr. Gibson's nurse called and apologized. The only thing she could think of is that they have someone new in scheduling. I'm trying to keep it in perspective...we weren't even supposed to have our first appointment until March, so we're still ahead of the game. But there is definitely something wrong with Matthew, and I'd really love an answer, or to move closer to the answer. Every doctor he has is worried about his ketone levels - his pediatrician even had us add "metabolic disorder" to his Medic Alert file. So, we're still waiting...
After pushing Matthew's allergy appointment back for a month to wait on the results from Dr. Gibson, we just felt like we couldn't wait any longer. So we had his appointment with Dr. Varshney, his allergist, yesterday. Even with the unknown diagnosis hanging out there, we had a great appointment. The most exciting news is that we've started food trials again! Nick and I came up with our list, and Dr. Varshney approved it :) First up is corn...ahhh, corn, how I hope and pray that you are a pass! This would add kix, grits, popcorn, corn noodles, plain old corn, and so many possibilities for baking...you just have no idea how exciting it is to think of baking for this little boy! After that we're going to trial egg, and then we'll start our dairy trial. All you bakers can see where I'm headed with this ;) Adding in another carbohydrate source was important to us based on Matthew's ketone issues, and corn is kind of like the "black sheep" of the grain/cereal world. Since it's not closely related to rice, barley, or oats (which are the top FPIES triggers), we have high hopes for this trial. We're going to consult with a dietitian after our appointment with Dr. Gibson to plan what comes next...Matthew is eating so much more, and we'll need to fill in the nutritional gaps as much as we can. But it won't be easy between avoiding his trigger food families (grains, legumes, meats) and trying to satisfy the low fat-high carb requirements his ketone issue will most likely require. Until then we've decided to start giving him Neocate Nutra, which is an amino acid based "cereal" that is fortified to fill in his nutritional gaps until we can add more safe foods to his diet. We're also moving Matthew up to Neocate Junior formula instead of the Neocate Infant we now use to supplement my milk supply. He only takes about 3oz a day, but he's getting older and the Junior version is packed full of more calories.
We had a great discussion about the American Academy of Asthma Allergy and Immunology (AAAAI) conference that happened a couple of weeks ago. Dr. Varshney was there, and she had a chance to speak with Dr. Anna Nowak-Wegrzyn (one of the leading FPIES specialists) about Matthew. Based on their discussion, we may do an oral food challenge (OFC) in the allergist's office to a few of his trigger foods within the next year. We need to wait on Dr. Gibson's diagnosis, but we'd like to confirm the coconut fail, and an OFC is the only safe way to do that. I also brought questions about a few of the AAAAI sessions dealing with FPIES, and Dr. Varshney is going to look into a few possibilities that I brought up.
Last, I had the opportunity to write a guest post for Rare Disease Day 2012, which just happened to occur on the rarest day on the calendar, February 29th ;) It was an amazing opportunity to share Matthew's story, and hopefully raise awareness of FPIES. The site it was featured on belongs to a fellow FPIES mom, and through her our story was shared with over 24,000 people! They read the story on the savingandmore site, but more than one hundred people visited Matthew's site after reading it...which gives me hope that I may have helped one more parent discover FPIES as a possible diagnosis for their child. My focus has definitely shifted to helping all the "new to FPIES" parents out there. The food survey I put together seems to have helped so many...one mom even wrote me to say that her child's allergist was the person to point her to the food survey! And the FPIES doctors list I started has physicians listed from over 27 states and three countries so far. Recently I've added a few (hopefully) helpful sections to this site, dealing with all the questions I see repeated on the message boards by parents who are new to the FPIES diagnosis. I still have a LOT more to write...so far I've tackled the topics of: obsessive research, how to get a diagnosis (and why you need one), elimination diets, how to explain FPIES, and occupational therapy. My list of "to do's" still includes: when to take your child to the hospital, how to trial foods, whether you should make your own baby food, why we chose medic alert, travelling with FPIES kids, having a child who eats throughout the night, and why blogging about FPIES is helpful. The hope is that parents will be able to use this site as a resource instead of having to wait for answers to some of their questions. There is also a webinar for healthcare professionals on FPIES (hosted by Dr. Nowak-Wegrzyn) next week, and I have passed the info for that on to every doctor I can get my hands on. Not just Matthew's allergist and pediatrician, but also to the Dell Children's ER department, and all of the allergists and pediatricians in both the Austin Regional Clinic and Austin Diagnostic Clinic systems. I may just be a stay at home mom, but I'm trying to do my part :)
Matthew is such an awesome eater now! He eats about one avocado, 1/4 of a potato, 2 oz of spinach, and 1/2 a pear a day. He's not such a fan of broccoli right now, and carrots we work in every three days, but they just aren't his favorite. We've found a few fun things to add some variability to the same foods day in and day out. One was a tip from another FPIES parent here in Austin. She recently moved to town, and has two kids who are exactly the ages of Abby and Matthew! We had a play date, and it was SO awesome to hang out with a parent who totally knows what we're going through, with no explanations needed. The other cool thing is that her son's safe foods are almost identical to Matthew's...so when she pulled out a package of Brothers All Natural pear crisps for her son to snack on, you'd have thought I had just won the lottery! As soon as she left I popped online and bought a case through their website. They're pretty yummy, so between Abby and Matthew we go through a package a day. Another food that has made it into our daily rotation is noodles! That's right...through another FPIES parent we found out that there are Gefen potato noodles available during Passover. I feel a little bad buying up all the Passover safe wagon wheel noodles at our kosher grocery store before their Jewish shoppers have a chance to get them...but hey, they are only made for passover season. If I can't get 30 packages right now we won't have enough noodles to last an entire year. We've also found a way to get Matthew to eat spinach (yep, a tip from another FPIES mom) - we make "spinach chips" in the oven, which are similar to kale chips. He LOVES them!
Another big change in our house....Matthew started sleeping six, seven, and sometimes eight hours straight at night! Awesome, right!!!????!!!! Well, I would have been jumping up and down if he didn't have the ketone issue. Instead I was scared out of my mind. Nick was on a business trip to India for three weeks, and I was home by myself when this started. I didn't know what to do...we were out of blood ketone test strips and insurance wouldn't cover the refill for another week. OK, the truth is I somehow missed the fact that there even WAS a refill. Chalk it up to sleep deprivation. I called the doctor trying to get another prescription, but they hadn't returned my call by the time I figured out there was a refill. Then the pharmacy takes two days to get them in (because they just don't stock them), but they also lost my refill request so that took an extra day, and then it was one day out from insurance covering it. So I went for a week waking myself up to feed him, even though he would have kept sleeping. When we finally got the strips in, I started testing him every night. After six hours of sleep his ketones would be anywhere between 0.8 - 1.2 mmol/L. Keep in mind, 0.6-1.4 mmol/L is the "you should be worried" range, and 1.5 mmol/L and up is the "you should head to your doctor's office or a hospital" range. So, it wasn't as bad as it could have been, but I definitely had a reason to be worried. Since the metabolic disorders the doctors are looking at require high carb-low fat diets to keep the ketone levels in check, I started playing around with Matthew's meals. If he eats 1/4 of a potato and 1/3 of an avocado for dinner, and then drinks a 5oz bottle right before bed, his ketone levels stay down long enough for him to sleep for six to seven hours. Avocado alone for dinner seems to be useless, and potatoes alone do an OK job, but combining the two seems to give us the best result. We let him sleep as long as he wants now without worrying too much, but this is definitely on the list of things to discuss with Dr. Gibson, the metabolic disorders geneticist, during our next appointment.
So...Dr. Gibson. We were supposed to have an appointment on March 7th....yeah, you did read "supposed to." I confirmed the appointment date and time with his nurse a month out, just to make sure everything was set. Every time I called asking about ketone strip prescriptions, worried about him sleeping longer and asking for instructions, or inquiring about the lab work we had been billed for but were never given the results of, we were told that we would get the answers at our appointment on March 7th. We even moved Matthew's allergy appointment back so that we could get an answer about his metabolic disorder prior to planning his next food trials. I had the food logs, blood ketone charts, and two pages of questions printed out for the appointment. We had arranged for Abby to stay with a friend, and Nick moved a meeting at work so that he could be there. But, as I'm packing up all of the kids' stuff that morning, I decided to call and double check since we had not received an appointment confirmation call on the previous day. Not only had our appointment for that day disappeared...we weren't on the schedule for ANY appointments in the future!!! You have no idea how upset we were...are you KIDDING??? And the earliest available appointment is April 4th, so we have to wait another month. Let's just say I'm not very happy...and I still have no idea what happened. Dr. Gibson's nurse called and apologized. The only thing she could think of is that they have someone new in scheduling. I'm trying to keep it in perspective...we weren't even supposed to have our first appointment until March, so we're still ahead of the game. But there is definitely something wrong with Matthew, and I'd really love an answer, or to move closer to the answer. Every doctor he has is worried about his ketone levels - his pediatrician even had us add "metabolic disorder" to his Medic Alert file. So, we're still waiting...
After pushing Matthew's allergy appointment back for a month to wait on the results from Dr. Gibson, we just felt like we couldn't wait any longer. So we had his appointment with Dr. Varshney, his allergist, yesterday. Even with the unknown diagnosis hanging out there, we had a great appointment. The most exciting news is that we've started food trials again! Nick and I came up with our list, and Dr. Varshney approved it :) First up is corn...ahhh, corn, how I hope and pray that you are a pass! This would add kix, grits, popcorn, corn noodles, plain old corn, and so many possibilities for baking...you just have no idea how exciting it is to think of baking for this little boy! After that we're going to trial egg, and then we'll start our dairy trial. All you bakers can see where I'm headed with this ;) Adding in another carbohydrate source was important to us based on Matthew's ketone issues, and corn is kind of like the "black sheep" of the grain/cereal world. Since it's not closely related to rice, barley, or oats (which are the top FPIES triggers), we have high hopes for this trial. We're going to consult with a dietitian after our appointment with Dr. Gibson to plan what comes next...Matthew is eating so much more, and we'll need to fill in the nutritional gaps as much as we can. But it won't be easy between avoiding his trigger food families (grains, legumes, meats) and trying to satisfy the low fat-high carb requirements his ketone issue will most likely require. Until then we've decided to start giving him Neocate Nutra, which is an amino acid based "cereal" that is fortified to fill in his nutritional gaps until we can add more safe foods to his diet. We're also moving Matthew up to Neocate Junior formula instead of the Neocate Infant we now use to supplement my milk supply. He only takes about 3oz a day, but he's getting older and the Junior version is packed full of more calories.
We had a great discussion about the American Academy of Asthma Allergy and Immunology (AAAAI) conference that happened a couple of weeks ago. Dr. Varshney was there, and she had a chance to speak with Dr. Anna Nowak-Wegrzyn (one of the leading FPIES specialists) about Matthew. Based on their discussion, we may do an oral food challenge (OFC) in the allergist's office to a few of his trigger foods within the next year. We need to wait on Dr. Gibson's diagnosis, but we'd like to confirm the coconut fail, and an OFC is the only safe way to do that. I also brought questions about a few of the AAAAI sessions dealing with FPIES, and Dr. Varshney is going to look into a few possibilities that I brought up.
Last, I had the opportunity to write a guest post for Rare Disease Day 2012, which just happened to occur on the rarest day on the calendar, February 29th ;) It was an amazing opportunity to share Matthew's story, and hopefully raise awareness of FPIES. The site it was featured on belongs to a fellow FPIES mom, and through her our story was shared with over 24,000 people! They read the story on the savingandmore site, but more than one hundred people visited Matthew's site after reading it...which gives me hope that I may have helped one more parent discover FPIES as a possible diagnosis for their child. My focus has definitely shifted to helping all the "new to FPIES" parents out there. The food survey I put together seems to have helped so many...one mom even wrote me to say that her child's allergist was the person to point her to the food survey! And the FPIES doctors list I started has physicians listed from over 27 states and three countries so far. Recently I've added a few (hopefully) helpful sections to this site, dealing with all the questions I see repeated on the message boards by parents who are new to the FPIES diagnosis. I still have a LOT more to write...so far I've tackled the topics of: obsessive research, how to get a diagnosis (and why you need one), elimination diets, how to explain FPIES, and occupational therapy. My list of "to do's" still includes: when to take your child to the hospital, how to trial foods, whether you should make your own baby food, why we chose medic alert, travelling with FPIES kids, having a child who eats throughout the night, and why blogging about FPIES is helpful. The hope is that parents will be able to use this site as a resource instead of having to wait for answers to some of their questions. There is also a webinar for healthcare professionals on FPIES (hosted by Dr. Nowak-Wegrzyn) next week, and I have passed the info for that on to every doctor I can get my hands on. Not just Matthew's allergist and pediatrician, but also to the Dell Children's ER department, and all of the allergists and pediatricians in both the Austin Regional Clinic and Austin Diagnostic Clinic systems. I may just be a stay at home mom, but I'm trying to do my part :)
