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November 8, 2011
So many things in the last month....where to start?
It's actually been slow, until the last week. Our only big news was that Matthew passed spinach and is rocking his avocado trial! He still refuses to eat with a spoon, so getting enough spinach in his tummy to trial it was a chore, but we powered through and now it's on our safe list :) The cool thing about spinach is that it's in the beet family, and so is quinoa (a pseudo grain), so we'll probably be able to trial quinoa pretty soon after Matthew's first birthday. Avocado is totally different - I took a leap of faith and decided to trial it even though the survey numbers were against it (only eight of the FPIES to peas kids had tried it and five of them had failed it). We really needed something Matthew could grab and feed himself, and avocado is one of those first finger foods for babies, so we went ahead and tried it. He LOVES avocado! He'll eat as much as Abby does in a sitting, and he's sleeping longer at night too, so we're all happy :)
We had a check-up with Dr. Varshney, Matthew's allergist last week. I took along some lovely photos of Matthew's mucus diapers. She had seen one of his diapers before with some small strands of mucus in them, but these were WAY different than she had seen, so Nick suggested I take a couple of pictures. I had to laugh b/c even though I felt weird bringing in gross photos, both Dr. Varshney and her nurse, Sarah, were excited about them ;) She had already been consulting with a Gastroenterologist (GI) about Matthew's diapers because she knew they consistently have had mucus in them. We've never seen blood in his stools, and when they tested a stool sample there was no trace of blood, so we were hoping that Matthew could just stick with his allergist, even though many FPIES kids see both an allergist and a GI. As long as the mucus was super-small the GI (Dr. Zwiener) didn't think he needed to see Matthew, but the photos changed both Dr. Varshney's and Dr. Zwiener's minds, so we will see the GI for the first time on Dec. 1st.
We also talked about Matthew's eating - or lack thereof. This was only one day into the avocado trial, so we were out of ideas - he's passed four foods now, but he only gets about 1-2 tsp of "food" a day, because there's just no way to get it into his tummy. We've let him gnaw on broccoli stems, suck and chomp on the mesh feeder...tried everything short of mopping the floor and sprinkling it with his safe foods (since he'll put absolutely anything he comes across on the floor into his mouth). The only reason we didn't try the floor thing was we need to train him to NOT put random things in his mouth, so even though it might have worked, we just couldn't take the risk that he would think it's ok to eat anything he finds on the floor in the future. Dr. Varshney referred us to an Occupational Therapist, hopefully they'll be able to give us some strategies to get Matthew eating from a spoon again. They'll come to our home and work with him, which is awesome, but we're waiting on them to call us and schedule Matthew's initial evaluation.
Dr. Varshney also discussed the foods we can start trialing. First, since he's done so well she said we can drop the trial length down from three weeks to two, so that will help increase Matthew's safe foods list (hopefully). She would like us to start trialing a fruit soon (probably pears since he may be able to eat them on his own, like the avocados), and a non-poultry meat (probably venison, since my Mom's boyfriend, Fred, gave us the deer he got on opening weekend - Thanks Fred!). She also gave us the go-ahead to trial cow's milk as soon as Matthew turns one! I eat/drink huge amounts of dairy and we haven't seen him react to it through my milk, so hopefully the trial will be a success :) It's definitely going to be a different type of trial - we have to trial it baked, then boiled, then in yogurt form before Matthew can trial straight-up cow's milk. Cooking food breaks down the protein structure making it easier for FPIES kids to digest, so this stair-step trial will hopefully prevent a serious hospital visit if milk ends up being a fail. But I'm excited that we don't have to wait on dairy until Matthew is 18 months! If we can get him really eating again, and pass dairy, that means I may be able to stop breastfeeding! Don't get me wrong, I'm so glad I can do this for my kids (not everyone can), but I've either been pregnant or breastfeeding for more than three years now with no break - I'd really just like to have a couple of adult drinks and feel a little tipsy for once ;) And we'd like to have a third child, but until Matthew is off of my milk we can't even begin to think of a time table for the next little Bofferding!
But anyways....back to Matthew :) The last thing from our visit is that Dr. Varshney wanted to run another Comprehensive Metabolic Panel (CMP) on Matthew to check his electrolytes again. At our first visit with her the sodium level was low, so we ran the test again at Matthew's 9-month check-up and it came back at the low end of "normal." So we ran a CMP again at this visit, and his sodium was low again. The reason this is troubling is that you would expect to see these readings in a kid with diarrhea or one who has been vomiting a lot, but we haven't had any of that. Dr. Varshney called on Friday as we were packing our car to leave town for the weekend to tell us Matthew had tested low again. She wanted us to run a CMP one more time, and she didn't want us to wait. So, we finished packing the car and stopped by our pediatrician's office on our way out of town (Dr. Pandya and Dr. Varshney have been talking about Matthew a lot - discussing lab results and teaming up when they order labs to minimize how many times Matthew has to suffer). They called with the preliminary results today - he's still low. And it's not just that he's low on sodium. When they look at electrolytes sodium isn't the only thing they look at, there are a few different things they check. And then they do a calculation that gives an overall "electrolyte" count. Even though his sodium is low, the other numbers are also too high, so when they run the calculation his electrolytes are way off of what they should be. The crazy thing is that not only is there no apparent cause for his electrolytes to be off, he also exhibits none of the normal symptoms of having problems with his electrolytes (like not gaining weight). What does this mean? The doctors aren't sure...which means more tests. Which tests? They aren't sure about that yet either, so they're consulting with a Metabolic Disorders Specialist at Dell Children's before we proceed.
So, after a month of seeming like we were (almost) a normal family, we now have more questions. Matthew definitly has FPIES, there is no doubt about that. But now we're facing the possibility that it's not just FPIES....thankfully God has blessed us with a few awesome, persistent doctors who are keeping a close eye on our little guy :)
Oh, and a side note - Matthew's friend Madison ROCKED her heart surgery last week! We are so excited for the entire Gandy family and can't wait for Madison to make it back to Austin...it hurts our hearts to watch our close friends go through all that they have in the last year, but we are in awe of how gracefully they have fought for Madison, and thrilled to see all of their hard work and sacrifices paying off :) To check up on Madison, check out her CaringBridge site.
It's actually been slow, until the last week. Our only big news was that Matthew passed spinach and is rocking his avocado trial! He still refuses to eat with a spoon, so getting enough spinach in his tummy to trial it was a chore, but we powered through and now it's on our safe list :) The cool thing about spinach is that it's in the beet family, and so is quinoa (a pseudo grain), so we'll probably be able to trial quinoa pretty soon after Matthew's first birthday. Avocado is totally different - I took a leap of faith and decided to trial it even though the survey numbers were against it (only eight of the FPIES to peas kids had tried it and five of them had failed it). We really needed something Matthew could grab and feed himself, and avocado is one of those first finger foods for babies, so we went ahead and tried it. He LOVES avocado! He'll eat as much as Abby does in a sitting, and he's sleeping longer at night too, so we're all happy :)
We had a check-up with Dr. Varshney, Matthew's allergist last week. I took along some lovely photos of Matthew's mucus diapers. She had seen one of his diapers before with some small strands of mucus in them, but these were WAY different than she had seen, so Nick suggested I take a couple of pictures. I had to laugh b/c even though I felt weird bringing in gross photos, both Dr. Varshney and her nurse, Sarah, were excited about them ;) She had already been consulting with a Gastroenterologist (GI) about Matthew's diapers because she knew they consistently have had mucus in them. We've never seen blood in his stools, and when they tested a stool sample there was no trace of blood, so we were hoping that Matthew could just stick with his allergist, even though many FPIES kids see both an allergist and a GI. As long as the mucus was super-small the GI (Dr. Zwiener) didn't think he needed to see Matthew, but the photos changed both Dr. Varshney's and Dr. Zwiener's minds, so we will see the GI for the first time on Dec. 1st.
We also talked about Matthew's eating - or lack thereof. This was only one day into the avocado trial, so we were out of ideas - he's passed four foods now, but he only gets about 1-2 tsp of "food" a day, because there's just no way to get it into his tummy. We've let him gnaw on broccoli stems, suck and chomp on the mesh feeder...tried everything short of mopping the floor and sprinkling it with his safe foods (since he'll put absolutely anything he comes across on the floor into his mouth). The only reason we didn't try the floor thing was we need to train him to NOT put random things in his mouth, so even though it might have worked, we just couldn't take the risk that he would think it's ok to eat anything he finds on the floor in the future. Dr. Varshney referred us to an Occupational Therapist, hopefully they'll be able to give us some strategies to get Matthew eating from a spoon again. They'll come to our home and work with him, which is awesome, but we're waiting on them to call us and schedule Matthew's initial evaluation.
Dr. Varshney also discussed the foods we can start trialing. First, since he's done so well she said we can drop the trial length down from three weeks to two, so that will help increase Matthew's safe foods list (hopefully). She would like us to start trialing a fruit soon (probably pears since he may be able to eat them on his own, like the avocados), and a non-poultry meat (probably venison, since my Mom's boyfriend, Fred, gave us the deer he got on opening weekend - Thanks Fred!). She also gave us the go-ahead to trial cow's milk as soon as Matthew turns one! I eat/drink huge amounts of dairy and we haven't seen him react to it through my milk, so hopefully the trial will be a success :) It's definitely going to be a different type of trial - we have to trial it baked, then boiled, then in yogurt form before Matthew can trial straight-up cow's milk. Cooking food breaks down the protein structure making it easier for FPIES kids to digest, so this stair-step trial will hopefully prevent a serious hospital visit if milk ends up being a fail. But I'm excited that we don't have to wait on dairy until Matthew is 18 months! If we can get him really eating again, and pass dairy, that means I may be able to stop breastfeeding! Don't get me wrong, I'm so glad I can do this for my kids (not everyone can), but I've either been pregnant or breastfeeding for more than three years now with no break - I'd really just like to have a couple of adult drinks and feel a little tipsy for once ;) And we'd like to have a third child, but until Matthew is off of my milk we can't even begin to think of a time table for the next little Bofferding!
But anyways....back to Matthew :) The last thing from our visit is that Dr. Varshney wanted to run another Comprehensive Metabolic Panel (CMP) on Matthew to check his electrolytes again. At our first visit with her the sodium level was low, so we ran the test again at Matthew's 9-month check-up and it came back at the low end of "normal." So we ran a CMP again at this visit, and his sodium was low again. The reason this is troubling is that you would expect to see these readings in a kid with diarrhea or one who has been vomiting a lot, but we haven't had any of that. Dr. Varshney called on Friday as we were packing our car to leave town for the weekend to tell us Matthew had tested low again. She wanted us to run a CMP one more time, and she didn't want us to wait. So, we finished packing the car and stopped by our pediatrician's office on our way out of town (Dr. Pandya and Dr. Varshney have been talking about Matthew a lot - discussing lab results and teaming up when they order labs to minimize how many times Matthew has to suffer). They called with the preliminary results today - he's still low. And it's not just that he's low on sodium. When they look at electrolytes sodium isn't the only thing they look at, there are a few different things they check. And then they do a calculation that gives an overall "electrolyte" count. Even though his sodium is low, the other numbers are also too high, so when they run the calculation his electrolytes are way off of what they should be. The crazy thing is that not only is there no apparent cause for his electrolytes to be off, he also exhibits none of the normal symptoms of having problems with his electrolytes (like not gaining weight). What does this mean? The doctors aren't sure...which means more tests. Which tests? They aren't sure about that yet either, so they're consulting with a Metabolic Disorders Specialist at Dell Children's before we proceed.
So, after a month of seeming like we were (almost) a normal family, we now have more questions. Matthew definitly has FPIES, there is no doubt about that. But now we're facing the possibility that it's not just FPIES....thankfully God has blessed us with a few awesome, persistent doctors who are keeping a close eye on our little guy :)
Oh, and a side note - Matthew's friend Madison ROCKED her heart surgery last week! We are so excited for the entire Gandy family and can't wait for Madison to make it back to Austin...it hurts our hearts to watch our close friends go through all that they have in the last year, but we are in awe of how gracefully they have fought for Madison, and thrilled to see all of their hard work and sacrifices paying off :) To check up on Madison, check out her CaringBridge site.