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January 25, 2012
Well, where to begin? I guess I lied on my last post, because we're still waiting on the lab results from Dr. Gibson's office, yet here I am again! There have been a few new things in the last couple of weeks. Matthew failed another food, we had our first ER visit, and now we're monitoring Matthew's blood ketone levels four times a day for Dr. Gibson. Oh, and Matthew started walking!!!
So, I know what you're thinking - how could Matthew fail another food when we had to stop all food trials? Well, remember when I said we were going to finish up the coconut trial, since we were already on day eleven? It turned out that fourteen was the unlucky number this time...that's right, he failed it on his fourteenth ingestion. And we're so bummed, because he REALLY liked it! This reaction actually didn't seem as bad as his last few. He still had the repetitive vomiting, and Matthew became very calm and subdued, but he never went totally lethargic on us like the previous times. Since the doctors said we had to take him in to the ER the next time he started vomiting, I ran around the house getting things together while Nick held Matthew in the kitchen to let him throw up in the sink (he ended up vomiting five times before getting to dry heaves). It took me about forty minutes to get everything packed up and out of the door - I know I should have a "go bag" all ready, but I didn't, so I had to grab things in a rush. But I didn't forget anything...I checked the ER list on the FPIES Foundation site right before I left, just to make sure I had everything I would need (thanks for having a towel on the list!). We really wanted him to get to the dry heave stage before we left, so that he wouldn't make a huge mess out of his car seat, so packing up didn't really delay us any.
Nick stayed home with Abby (our oldest), and since I've got the milk I took Matthew in. We left at 10pm, and got back home at 4am, so it was a long night. But Dell Children's ER was amazing! We only waited five minutes before they took us back to triage to get Matthew's info. Then we were only back in the waiting room for ten minutes before they called us back to a "room". Earlier that day Matthew's medic alert bracelet had arrived in the mail, which was a relief, because I was really nervous about explaining FPIES to the ER doctor. When the doctor asked what was going on, I said "I think he's having a reaction to coconut. He has Food Protein Induced Enterocolitis Syndrome." I was ready to continue, but I noticed the doctor nod her head, which made me pause. "Are you familiar with FPIES?" I asked. The doctor said "Yes, my son had FPIES to dairy, soy, and wheat." What???!!!??? This isn't how it's supposed to go. I'm supposed to say "FPIES", and the doctor is supposed to say "Never heard of it, that's not real." And then I'm supposed to have to fight to get them to take me seriously and not just pass it off as a stomach bug. Let me just say this...I feel the hand of God in my life every single day, but at that moment I really felt like he was patting me on the back to let me know He was watching over Matthew. I am still in awe that Matthew had Dr. Colman (an FPIES mom) assigned to him on his first trip to the ER!
I also filled Dr. Colman in on the labs that were out with Dr. Gibson, about Matthew's traditionally low bicarbs, and that he possibly has a metabolic disorder. I only mentioned it because of all the lab work Dr. Gibson and Dr. Varshney wanted from the ER, which was the entire reason behind us taking Matthew in. But I still felt silly being at the ER. I mean, other than taking a little nap in the car on the way over, this little boy was WIDE awake and squirmy :) He still couldn't hold down any liquids (we were less than two hours in since his first vomit), but he was acting like his normal smiley self. Well, he was tired, clingy, and would NOT let them take his blood pressure, but definitely not lethargic. Which is why I had to do a double take when Dr. Colman said "OK, so we're going to run the metabolic panel, get a urine sample to check his ketones, and give him an IV." I just looked at her and said "I told Matthew's allergist that no ER doctor would give my happy smiling baby an IV, and she agreed. I'm not complaining, but why is he getting the IV?" Dr. Colman just laughed and said "You said "metabolic disorder" which is the magic word for automatic IV."
So, we pretty much spent the night in the ER. Matthew was hooked up to the IV, they drew his labs, and we were just waiting to get enough fluids in him so that we could get the urine sample and prove that he was hydrated enough. They ended up giving him additional IV fluids (I think he ended up getting 473 mL total?), and still had to cath him to get the urine sample, but then we were allowed to go home! Dr. Colman actually offered to admit Matthew for observation, but when I asked if she felt that was necessary, she said that as long as we followed up with our pediatrician the next day she thought we'd be fine. All in all, I don't think I could come up with any way to improve our visit to the ER!
The next day I took Matthew in for a follow-up with his pediatrician, Dr. Pandya, and called Dr. Varshney's and Dr. Gibson's offices to let them know that the ER had new lab work for them. The IV was amazing - instead of it taking 18 hours for Matthew to make a wet diaper, it was like his reaction didn't even happen! So Matthew was totally doing fine when we were at his pediatrician's - it's just the adults who are running around frantically trying to figure out what's going on :) Dr. Pandya was glad that we had a medic alert bracelet for Matthew, but she asked me to call and update his file to state that he has a metabolic disorder. I had been putting this off until we figured out the name of the actual disorder, but she said he definitely has one, so it's safer to have it in the file even if we haven't narrowed it down to the exact disorder. She also said that anytime Matthew vomits multiple times (even if it's a stomach flu instead of FPIES) we have to go to the ER for fluids.
After seeing that Matthew went to the ER, Dr. Gibson called. He wants us to monitor Matthew's blood ketones four times a day for four days to get a better picture of what's going on with him. He's not worried about diabetes (Matthew's glucose has always been perfect), just his ketones since Matthew has a history of ketones in both his blood and urine. We were a little skeptical at first - nothing is different, it's just that we finally took him in, so what's the big deal? But we trust his doctors, so we started monitoring his ketones yesterday. Before taking his ketone readings we were referring to the abnormalities that Dr. Gibson is looking into as a "possible metabolic disorder." We know something is going on with Matthew, but since it's still in the diagnostic phase we've been bystanders in this whole process. All the doctors have to indicate that there is an issue are a few odd lab results taken at various times - Matthew has never shown any outward sign of having a problem (other than his FPIES ;). Taking the ketone readings has definitely changed our perception, in our minds it's changed to "a definite metabolic disorder."
So, why the change? A normal reading of blood ketone levels is below 0.6 mmol/L. This can sometimes exceed 0.6 mmol/L if you are ill, fasting, or exercising vigorously. Matthew definitely has something going on...his ketones are consistently above 0.6 unless he has eaten (nursed) within the last 1.5-2 hours. When he goes more than two hours without eating, his keytones are consistently above 0.6. If he's been napping or asleep during that time he's about a 0.9, but if he's been awake and playing his keytones are around 1.1 mmol/L. Taking a bottle brings his levels down into the normal range within an hour, but eating solid food barely seems to affect his ketones at all. We're guessing that once Dr. Gibson gets the results he will tell us to 1) feed Matthew every two hours, and 2) always finish off actual meals with breastmilk.
Once again we find ourselves thanking God that Matthew has FPIES. Without FPIES and his food aversions, he would have been able to eat so MUCH more of so MANY more foods than he currently can, and would probably be able to sleep in longer spurts without feeding throughout the night, which would cause his ketone levels to rise. Abby was sleeping twelve hours straight every night by the time she was 8.5 months old. I can't even imagine what that would do to Matthew's ketone levels. So, even though I'm constantly exhausted, I'm thankful to have a one year old who wakes up to eat at 11:30pm, 1:30am, 4:30am, and 6:30am every night. I never thought THAT sentence would come out of my mouth :) And yes, he's still sleeping in our room. We moved Abby out when she was four months old, but she was only waking up to eat at 5:30am every night at that point. Matthew's feeding schedule is hard enough when he's only a few steps away...I can't imagine having to go to another room.
Now we just continue monitoring Matthew's ketone levels for two more days, and then wait to see what Dr. Gibson has to say. We're still waiting on the lab results from back in December, so we're bound to get some answers pretty soon. Oh, and I totally forgot to mention it, but Matthew is actually eating again! I'm knocking on wood right now, but at dinner he usually eats about 1/4 of an avocado AND 1/4 of a potato (with a SPOON!!!)...we seem to do a LOT of clapping around the dinner table these days :) We also have our first FPIES play-date scheduled for next week! A FPIES family I met on facebook recently moved to Austin, and their kids are the ages of Abby and Matthew, so we're going to let the kids play while we commiserate about having a child with FPIES :)
And a few side notes...I had two people contact me this past week who stumbled upon Matthew's website! They both think their babies have FPIES and wanted my advice. What a wonderful feeling to be able to help a couple of moms during the hardest part of the FPIES journey :) I also started a new "survey" for FPIES parents, and this time it was totally selfless! I'm trying to collect the names of all the FPIES friendly doctors out there so that parents who are new to FPIES have a list of doctors to turn to for medical advice. The list is available here on Matthew's site, but also on the facebook and babyCenter FPIES group pages. I'm hoping everyone will share their doctors' info...the list is growing slower than the food survey did, but we already have doctors from 19 states and 2 countries!
So, I know what you're thinking - how could Matthew fail another food when we had to stop all food trials? Well, remember when I said we were going to finish up the coconut trial, since we were already on day eleven? It turned out that fourteen was the unlucky number this time...that's right, he failed it on his fourteenth ingestion. And we're so bummed, because he REALLY liked it! This reaction actually didn't seem as bad as his last few. He still had the repetitive vomiting, and Matthew became very calm and subdued, but he never went totally lethargic on us like the previous times. Since the doctors said we had to take him in to the ER the next time he started vomiting, I ran around the house getting things together while Nick held Matthew in the kitchen to let him throw up in the sink (he ended up vomiting five times before getting to dry heaves). It took me about forty minutes to get everything packed up and out of the door - I know I should have a "go bag" all ready, but I didn't, so I had to grab things in a rush. But I didn't forget anything...I checked the ER list on the FPIES Foundation site right before I left, just to make sure I had everything I would need (thanks for having a towel on the list!). We really wanted him to get to the dry heave stage before we left, so that he wouldn't make a huge mess out of his car seat, so packing up didn't really delay us any.
Nick stayed home with Abby (our oldest), and since I've got the milk I took Matthew in. We left at 10pm, and got back home at 4am, so it was a long night. But Dell Children's ER was amazing! We only waited five minutes before they took us back to triage to get Matthew's info. Then we were only back in the waiting room for ten minutes before they called us back to a "room". Earlier that day Matthew's medic alert bracelet had arrived in the mail, which was a relief, because I was really nervous about explaining FPIES to the ER doctor. When the doctor asked what was going on, I said "I think he's having a reaction to coconut. He has Food Protein Induced Enterocolitis Syndrome." I was ready to continue, but I noticed the doctor nod her head, which made me pause. "Are you familiar with FPIES?" I asked. The doctor said "Yes, my son had FPIES to dairy, soy, and wheat." What???!!!??? This isn't how it's supposed to go. I'm supposed to say "FPIES", and the doctor is supposed to say "Never heard of it, that's not real." And then I'm supposed to have to fight to get them to take me seriously and not just pass it off as a stomach bug. Let me just say this...I feel the hand of God in my life every single day, but at that moment I really felt like he was patting me on the back to let me know He was watching over Matthew. I am still in awe that Matthew had Dr. Colman (an FPIES mom) assigned to him on his first trip to the ER!
I also filled Dr. Colman in on the labs that were out with Dr. Gibson, about Matthew's traditionally low bicarbs, and that he possibly has a metabolic disorder. I only mentioned it because of all the lab work Dr. Gibson and Dr. Varshney wanted from the ER, which was the entire reason behind us taking Matthew in. But I still felt silly being at the ER. I mean, other than taking a little nap in the car on the way over, this little boy was WIDE awake and squirmy :) He still couldn't hold down any liquids (we were less than two hours in since his first vomit), but he was acting like his normal smiley self. Well, he was tired, clingy, and would NOT let them take his blood pressure, but definitely not lethargic. Which is why I had to do a double take when Dr. Colman said "OK, so we're going to run the metabolic panel, get a urine sample to check his ketones, and give him an IV." I just looked at her and said "I told Matthew's allergist that no ER doctor would give my happy smiling baby an IV, and she agreed. I'm not complaining, but why is he getting the IV?" Dr. Colman just laughed and said "You said "metabolic disorder" which is the magic word for automatic IV."
So, we pretty much spent the night in the ER. Matthew was hooked up to the IV, they drew his labs, and we were just waiting to get enough fluids in him so that we could get the urine sample and prove that he was hydrated enough. They ended up giving him additional IV fluids (I think he ended up getting 473 mL total?), and still had to cath him to get the urine sample, but then we were allowed to go home! Dr. Colman actually offered to admit Matthew for observation, but when I asked if she felt that was necessary, she said that as long as we followed up with our pediatrician the next day she thought we'd be fine. All in all, I don't think I could come up with any way to improve our visit to the ER!
The next day I took Matthew in for a follow-up with his pediatrician, Dr. Pandya, and called Dr. Varshney's and Dr. Gibson's offices to let them know that the ER had new lab work for them. The IV was amazing - instead of it taking 18 hours for Matthew to make a wet diaper, it was like his reaction didn't even happen! So Matthew was totally doing fine when we were at his pediatrician's - it's just the adults who are running around frantically trying to figure out what's going on :) Dr. Pandya was glad that we had a medic alert bracelet for Matthew, but she asked me to call and update his file to state that he has a metabolic disorder. I had been putting this off until we figured out the name of the actual disorder, but she said he definitely has one, so it's safer to have it in the file even if we haven't narrowed it down to the exact disorder. She also said that anytime Matthew vomits multiple times (even if it's a stomach flu instead of FPIES) we have to go to the ER for fluids.
After seeing that Matthew went to the ER, Dr. Gibson called. He wants us to monitor Matthew's blood ketones four times a day for four days to get a better picture of what's going on with him. He's not worried about diabetes (Matthew's glucose has always been perfect), just his ketones since Matthew has a history of ketones in both his blood and urine. We were a little skeptical at first - nothing is different, it's just that we finally took him in, so what's the big deal? But we trust his doctors, so we started monitoring his ketones yesterday. Before taking his ketone readings we were referring to the abnormalities that Dr. Gibson is looking into as a "possible metabolic disorder." We know something is going on with Matthew, but since it's still in the diagnostic phase we've been bystanders in this whole process. All the doctors have to indicate that there is an issue are a few odd lab results taken at various times - Matthew has never shown any outward sign of having a problem (other than his FPIES ;). Taking the ketone readings has definitely changed our perception, in our minds it's changed to "a definite metabolic disorder."
So, why the change? A normal reading of blood ketone levels is below 0.6 mmol/L. This can sometimes exceed 0.6 mmol/L if you are ill, fasting, or exercising vigorously. Matthew definitely has something going on...his ketones are consistently above 0.6 unless he has eaten (nursed) within the last 1.5-2 hours. When he goes more than two hours without eating, his keytones are consistently above 0.6. If he's been napping or asleep during that time he's about a 0.9, but if he's been awake and playing his keytones are around 1.1 mmol/L. Taking a bottle brings his levels down into the normal range within an hour, but eating solid food barely seems to affect his ketones at all. We're guessing that once Dr. Gibson gets the results he will tell us to 1) feed Matthew every two hours, and 2) always finish off actual meals with breastmilk.
Once again we find ourselves thanking God that Matthew has FPIES. Without FPIES and his food aversions, he would have been able to eat so MUCH more of so MANY more foods than he currently can, and would probably be able to sleep in longer spurts without feeding throughout the night, which would cause his ketone levels to rise. Abby was sleeping twelve hours straight every night by the time she was 8.5 months old. I can't even imagine what that would do to Matthew's ketone levels. So, even though I'm constantly exhausted, I'm thankful to have a one year old who wakes up to eat at 11:30pm, 1:30am, 4:30am, and 6:30am every night. I never thought THAT sentence would come out of my mouth :) And yes, he's still sleeping in our room. We moved Abby out when she was four months old, but she was only waking up to eat at 5:30am every night at that point. Matthew's feeding schedule is hard enough when he's only a few steps away...I can't imagine having to go to another room.
Now we just continue monitoring Matthew's ketone levels for two more days, and then wait to see what Dr. Gibson has to say. We're still waiting on the lab results from back in December, so we're bound to get some answers pretty soon. Oh, and I totally forgot to mention it, but Matthew is actually eating again! I'm knocking on wood right now, but at dinner he usually eats about 1/4 of an avocado AND 1/4 of a potato (with a SPOON!!!)...we seem to do a LOT of clapping around the dinner table these days :) We also have our first FPIES play-date scheduled for next week! A FPIES family I met on facebook recently moved to Austin, and their kids are the ages of Abby and Matthew, so we're going to let the kids play while we commiserate about having a child with FPIES :)
And a few side notes...I had two people contact me this past week who stumbled upon Matthew's website! They both think their babies have FPIES and wanted my advice. What a wonderful feeling to be able to help a couple of moms during the hardest part of the FPIES journey :) I also started a new "survey" for FPIES parents, and this time it was totally selfless! I'm trying to collect the names of all the FPIES friendly doctors out there so that parents who are new to FPIES have a list of doctors to turn to for medical advice. The list is available here on Matthew's site, but also on the facebook and babyCenter FPIES group pages. I'm hoping everyone will share their doctors' info...the list is growing slower than the food survey did, but we already have doctors from 19 states and 2 countries!