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November 14, 2011
We left off on the last post with a few questions, and there won't be many answers on this one, but I thought I'd update everyone on what's been going on.
First, ECI is coming to evaluate Matthew tomorrow to see if he needs occupational therapy to help him eat. I don't know exactly what to expect from the visit, so I steamed a lot of Matthew's safe foods tonight so that we'd have them on hand and ready to go. Today was our last day for the avocado trial, so we can add another food to Matthew's "safe" list - yay!!! Pears are next...it will be his first fruit (ok, ok, I know avocado is a fruit, but who really thinks of it as a fruit?). So ECI will have a lot of foods to work with, and hopefully we can get going on that spoon again!
Now on to the electrolytes....the Metabolic Disorders Specialist (Dr. Gibson) ordered three tests. Another Comprehensive Metabolic Panel (CMP), a lactic acid test, and a urine test. You should have heard Nick when I told him we had to do the CMP again ;) It's the fifth time they've run it (the bicarbonate results the first four times were: low, low end of normal, low, low end of normal). Nick actually said "NO!" when I told him it was ordered, but they needed to take it with the lactic acid test, so we did it again. I've been good, not looking up what the doctors are testing for, but after so many odd electrolyte readings I finally gave in and did a search. The bicarbonate count being low could be SO many things...but when you add in a lactic acid test there are only a few things they could be testing for. Congestive heart failure (that's SO not us), or liver or kidney disease. When I read "kidney disease" bells started going off, because both my Mom's brother and my Dad's sister had acute nephritis when they were kids (it was called Bright's Disease back then). So it was good that I did an internet search...when they ask for family history you never know how far to branch out, and I never put down things from my aunts and uncles.
When we went in to run the tests I told the doctor about the family history...it turns out they WERE checking his kidneys, so Dr. Pandya appreciated the extra info :) Getting the tests was an adventure in and of itself. The plan was to get a bag on Matthew to catch his urine, then I would breastfeed him to speed up the urine test. After he nursed we would do the blood draw for the CMP and lactic acid test, which would up the chance of him peeing because it makes him so mad :( Then we would take off the bag and be done for the day. Nothing could be easier, right? Except when it was time to draw Matthew's blood the lab tech at Dr. Pandya's didn't have the right tube for the lactic acid test. I had to load the kids back into the car and drive to the other lab (which was only a few blocks away). The wait was 40 minutes at the new lab - once we were finally done I loaded the kids up again and headed back to the pediatrician's office. Matthew had done a great job at filling the bag (think Austin Powers :), so it didn't take long once we were back to get the bag removed and be done for the day. Our appointment was for 9:10am, we were finally done at 11am :)
Dr. Pandya called with the results today - Matthew's urine and lactic acid looked fine (or at least good enough to rule out acute nephrosis). She said there may be a little to look at in the results, but that overall it looked pretty good. But his bicarbonate was low, again. The normal range they were looking for started at 18, he was a 17. And the calculation they do to figure out the electrolytes came out high again - he was a 15. What do these numbers mean? I have no idea! Dr. Pandya said it looks like he definitely has some level of metabolic acidosis, and wants us to go see Dr. Gibson (the metabolic disorders specialist) to investigate further. When I called to make that appointment, I ran into a few roadblocks. They hadn't received the test results yet, and when I passed on what I was told the medical assistant didn't seem to think we need an appointment. Huh? But my pediatrician says we do...so I called Dr. Pandya back. She spoke with Dr. Gibson again and faxed the results over...she's going to speak with him again tomorrow morning. I guess Dr. Gibson isn't certain it's him we need to see...we may need to see an endocrinologist instead? We'll know more tomorrow after the doctors work it out. I'm kind of frustrated...I don't care who we see as long as we figure out what in the world is going on. Dr. Pandya has been great - she wants to figure out what's going on as much as we do :)
That's all for now - I'll post again when we know which doctor we see next and I'll also let you know how the OT evaluation goes! Sorry for the long post...I'm really tired and also frustrated, so I know there are probably LOTS of grammatical errors ;)
First, ECI is coming to evaluate Matthew tomorrow to see if he needs occupational therapy to help him eat. I don't know exactly what to expect from the visit, so I steamed a lot of Matthew's safe foods tonight so that we'd have them on hand and ready to go. Today was our last day for the avocado trial, so we can add another food to Matthew's "safe" list - yay!!! Pears are next...it will be his first fruit (ok, ok, I know avocado is a fruit, but who really thinks of it as a fruit?). So ECI will have a lot of foods to work with, and hopefully we can get going on that spoon again!
Now on to the electrolytes....the Metabolic Disorders Specialist (Dr. Gibson) ordered three tests. Another Comprehensive Metabolic Panel (CMP), a lactic acid test, and a urine test. You should have heard Nick when I told him we had to do the CMP again ;) It's the fifth time they've run it (the bicarbonate results the first four times were: low, low end of normal, low, low end of normal). Nick actually said "NO!" when I told him it was ordered, but they needed to take it with the lactic acid test, so we did it again. I've been good, not looking up what the doctors are testing for, but after so many odd electrolyte readings I finally gave in and did a search. The bicarbonate count being low could be SO many things...but when you add in a lactic acid test there are only a few things they could be testing for. Congestive heart failure (that's SO not us), or liver or kidney disease. When I read "kidney disease" bells started going off, because both my Mom's brother and my Dad's sister had acute nephritis when they were kids (it was called Bright's Disease back then). So it was good that I did an internet search...when they ask for family history you never know how far to branch out, and I never put down things from my aunts and uncles.
When we went in to run the tests I told the doctor about the family history...it turns out they WERE checking his kidneys, so Dr. Pandya appreciated the extra info :) Getting the tests was an adventure in and of itself. The plan was to get a bag on Matthew to catch his urine, then I would breastfeed him to speed up the urine test. After he nursed we would do the blood draw for the CMP and lactic acid test, which would up the chance of him peeing because it makes him so mad :( Then we would take off the bag and be done for the day. Nothing could be easier, right? Except when it was time to draw Matthew's blood the lab tech at Dr. Pandya's didn't have the right tube for the lactic acid test. I had to load the kids back into the car and drive to the other lab (which was only a few blocks away). The wait was 40 minutes at the new lab - once we were finally done I loaded the kids up again and headed back to the pediatrician's office. Matthew had done a great job at filling the bag (think Austin Powers :), so it didn't take long once we were back to get the bag removed and be done for the day. Our appointment was for 9:10am, we were finally done at 11am :)
Dr. Pandya called with the results today - Matthew's urine and lactic acid looked fine (or at least good enough to rule out acute nephrosis). She said there may be a little to look at in the results, but that overall it looked pretty good. But his bicarbonate was low, again. The normal range they were looking for started at 18, he was a 17. And the calculation they do to figure out the electrolytes came out high again - he was a 15. What do these numbers mean? I have no idea! Dr. Pandya said it looks like he definitely has some level of metabolic acidosis, and wants us to go see Dr. Gibson (the metabolic disorders specialist) to investigate further. When I called to make that appointment, I ran into a few roadblocks. They hadn't received the test results yet, and when I passed on what I was told the medical assistant didn't seem to think we need an appointment. Huh? But my pediatrician says we do...so I called Dr. Pandya back. She spoke with Dr. Gibson again and faxed the results over...she's going to speak with him again tomorrow morning. I guess Dr. Gibson isn't certain it's him we need to see...we may need to see an endocrinologist instead? We'll know more tomorrow after the doctors work it out. I'm kind of frustrated...I don't care who we see as long as we figure out what in the world is going on. Dr. Pandya has been great - she wants to figure out what's going on as much as we do :)
That's all for now - I'll post again when we know which doctor we see next and I'll also let you know how the OT evaluation goes! Sorry for the long post...I'm really tired and also frustrated, so I know there are probably LOTS of grammatical errors ;)
