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December 8, 2011
Where do I even start? Occupational Therapy (OT) is going great, we had Matthew's first appointment with Dr. Zwiener (the GI), and there was a cancellation at Dr. Gibson's (the Metabolic Disorders Specialist) so our appointment was moved up from March to today!
I guess I'll start with OT...it's amazing what a difference a couple of weeks can make. Matthew has only been eating at most a teaspoon of food a day for months. In just two weeks we're up to two meals a day, and he's taking in a couple of tablespoons each time! He still has control issues, but he lets us put a fork and a spoon in his mouth without fussing too much now. We're still working on teaching him to chew, so a lot of the time I use my finger to place his food on the back of his gums, and it stays in! Nick and I were actually complaining about his progress yesterday...he puts everything he finds on the ground in his mouth, but he used to just thrust whatever it was right back out with his tongue. Now that he's learning to chew and keep food in we're having to fish a lot of stuff out before he has a chance to swallow it ;) I guess there's an up side and a down side to everything!
We met with Dr. Zwiener last Thursday to make sure we're not overlooking anything with the constant mucus in his stools. This goes hand in hand with FPIES, but since Matthew hasn't had an acute reaction in months it's something we need to investigate. Dr. Zwiener said it could be that he's having a low level reaction to something (either one of the foods he's eating or more likely to a protein through my breastmilk), or it could possibly be a parasite. If it is a slight inflammation due to a protein reaction, it doesn't seem to affect Matthew - he's happy, he's growing, he's hitting or exceeding all of the milestones, and his bloodwork shows he's getting all of the nutrients he should. At this point Dr. Zwiener doesn't think we should change anything...his exact words were that Matthew seems to be getting a "prodigious amount of nutrition." That just made me smile (all you breastfeeding mommies out there know the satisfaction I felt, since almost all of that nutrition is from me!).
Dr. Zwiener ordered labs to check for parasites as well. How do you test for a parasite? You guessed it, LOTS of stool samples. Seven, to be exact, and all the size of a walnut (which turns out to be approximately two tablespoons worth). It took us five days of collecting samples and running up to the lab (thank goodness it's only a mile away!) before we were finished. Some had to be frozen, some refrigerated, and some at room temperature. We had to turn a few of the samples in within 30 minutes of Matthew pooping, so we've had a fun few days of dropping everything to collect samples and hop in the car as soon as we smell a dirty diaper :)
Dr. Gibson's office called late last week to ask if we wanted to move up our March appointment, because they had a cancellation...ummmm, YES, PLEASE!!!! So, we've spent the week preparing. We had to collect a detailed family medical history - siblings, parents, aunts & uncles, grandparents, great-aunts & great-uncles, and great-grandparents....thank you to everyone who helped out with that! We also had to print out pictures of Nick, Abby, myself, and any extended family members who resemble Matthew.
I guess I'll start with OT...it's amazing what a difference a couple of weeks can make. Matthew has only been eating at most a teaspoon of food a day for months. In just two weeks we're up to two meals a day, and he's taking in a couple of tablespoons each time! He still has control issues, but he lets us put a fork and a spoon in his mouth without fussing too much now. We're still working on teaching him to chew, so a lot of the time I use my finger to place his food on the back of his gums, and it stays in! Nick and I were actually complaining about his progress yesterday...he puts everything he finds on the ground in his mouth, but he used to just thrust whatever it was right back out with his tongue. Now that he's learning to chew and keep food in we're having to fish a lot of stuff out before he has a chance to swallow it ;) I guess there's an up side and a down side to everything!
We met with Dr. Zwiener last Thursday to make sure we're not overlooking anything with the constant mucus in his stools. This goes hand in hand with FPIES, but since Matthew hasn't had an acute reaction in months it's something we need to investigate. Dr. Zwiener said it could be that he's having a low level reaction to something (either one of the foods he's eating or more likely to a protein through my breastmilk), or it could possibly be a parasite. If it is a slight inflammation due to a protein reaction, it doesn't seem to affect Matthew - he's happy, he's growing, he's hitting or exceeding all of the milestones, and his bloodwork shows he's getting all of the nutrients he should. At this point Dr. Zwiener doesn't think we should change anything...his exact words were that Matthew seems to be getting a "prodigious amount of nutrition." That just made me smile (all you breastfeeding mommies out there know the satisfaction I felt, since almost all of that nutrition is from me!).
Dr. Zwiener ordered labs to check for parasites as well. How do you test for a parasite? You guessed it, LOTS of stool samples. Seven, to be exact, and all the size of a walnut (which turns out to be approximately two tablespoons worth). It took us five days of collecting samples and running up to the lab (thank goodness it's only a mile away!) before we were finished. Some had to be frozen, some refrigerated, and some at room temperature. We had to turn a few of the samples in within 30 minutes of Matthew pooping, so we've had a fun few days of dropping everything to collect samples and hop in the car as soon as we smell a dirty diaper :)
Dr. Gibson's office called late last week to ask if we wanted to move up our March appointment, because they had a cancellation...ummmm, YES, PLEASE!!!! So, we've spent the week preparing. We had to collect a detailed family medical history - siblings, parents, aunts & uncles, grandparents, great-aunts & great-uncles, and great-grandparents....thank you to everyone who helped out with that! We also had to print out pictures of Nick, Abby, myself, and any extended family members who resemble Matthew.
From left to right: Mark (Matthew's grandfather), Nick (Matthew's Dad), and Matthew
Yeah....I guess we all know which side of the family Matthew resembles ;)
First, let me say that Dr. Gibson is AWESOME! He's like an encyclopedia of every disorder you can think of, and he thinks aloud throughout the appointment so you know exactly what's going on in his head. And he was great with Matthew too :) Before our appointment Dr. Gibson had made a list of all the possible disorders that would explain Matthew's lab results. He was specifically focusing on the traditionally low bi-carbs (from the five metabolic panels) and the severe ketonuria that showed up in the organic acids test. Dr. Varshney (Matthew's allergist) had given Dr. Gibson copies of the food logs I keep for Matthew, which gave him a LOT of insight into what was going into Matthew's body right before his lab samples were taken. I'm getting pretty tired of keeping them, but I guess all that work paid off here. Based on the logs, quite a few things on the list were ruled out. Dr. Gibson also LOVED the family tree, it made that part of the appointment so much more informative, and helped him weed out many of the things on his list. There were also times when the family history added yet another layer to the puzzle, widening the possibilities instead of narrowing them down.
The order of the possibilities shuffled around a lot...Dr. Gibson is focusing in on two different disorders at the moment. Both are things Matthew would have to deal with for the rest of his life, but they are manageable with testing and a strict diet, which is a good thing! One of them affects fewer than 1 in one million children, the other has only had about 20 reported cases since it was first described in 1972...yeah, and we thought FPIES was rare ;) And how, you ask, will we identify the exact disorder? That's right, you guessed it, more lab work! So, at the end of the appointment, we went up to the lab and collected another urine sample and did another blood draw. This time they are doing another urinanalysis, a urinary amino acids test, repeating the urinary organic acids test, another basic metabolic panel, and looking at the ketone levels in his blood. The amino acids test can take anywhere from four days to three weeks to come back, so it's going to be a while before Dr. Gibson will get back to us with the results. As soon as we know anything I'll post again!
First, let me say that Dr. Gibson is AWESOME! He's like an encyclopedia of every disorder you can think of, and he thinks aloud throughout the appointment so you know exactly what's going on in his head. And he was great with Matthew too :) Before our appointment Dr. Gibson had made a list of all the possible disorders that would explain Matthew's lab results. He was specifically focusing on the traditionally low bi-carbs (from the five metabolic panels) and the severe ketonuria that showed up in the organic acids test. Dr. Varshney (Matthew's allergist) had given Dr. Gibson copies of the food logs I keep for Matthew, which gave him a LOT of insight into what was going into Matthew's body right before his lab samples were taken. I'm getting pretty tired of keeping them, but I guess all that work paid off here. Based on the logs, quite a few things on the list were ruled out. Dr. Gibson also LOVED the family tree, it made that part of the appointment so much more informative, and helped him weed out many of the things on his list. There were also times when the family history added yet another layer to the puzzle, widening the possibilities instead of narrowing them down.
The order of the possibilities shuffled around a lot...Dr. Gibson is focusing in on two different disorders at the moment. Both are things Matthew would have to deal with for the rest of his life, but they are manageable with testing and a strict diet, which is a good thing! One of them affects fewer than 1 in one million children, the other has only had about 20 reported cases since it was first described in 1972...yeah, and we thought FPIES was rare ;) And how, you ask, will we identify the exact disorder? That's right, you guessed it, more lab work! So, at the end of the appointment, we went up to the lab and collected another urine sample and did another blood draw. This time they are doing another urinanalysis, a urinary amino acids test, repeating the urinary organic acids test, another basic metabolic panel, and looking at the ketone levels in his blood. The amino acids test can take anywhere from four days to three weeks to come back, so it's going to be a while before Dr. Gibson will get back to us with the results. As soon as we know anything I'll post again!
