Today we had Mia's 1st appointment with the Pediatric GI Specialist, and we learned the following things:
1. Contrary to what we were told at the hospital, an allergic reaction can cause liver issues. The GI specialist told us it can even cause liver failure. The Dr @ the hospital had told us that there was no way her high levels could be related. She seemed to think they were too high to be correlated. So good news and bad news. A-hopefully her high levels are incident related and will come back to normal. B-she didn't eat very many nuts. Greg guesses 2 or 3 at most. If we get our wish and her levels are just related to the allergic reaction, we will pretty much have to put ourselves on high alert, 24/7, which is tough, especially with a toddler.
2. Apparently Mia's levels were remarkably high. At our appointment we had another Dr come in and say hello, and she greeted Mimi as "our little medical mystery" and said that her levels were "impressive". Well, I guess that all depends on your perspective huh?
3. Her issue is still a bit of a mystery. While elevated levels can be a number of things, celiac disease, hepatitis, etc. it is unlikely that it is any of those since she doesn't have many other symptoms, and she is appearing healthy on many other levels. Right now, her only symptoms are the elevated liver function test levels, and an on going rash. Dr also seemed to think that we could be continuing to expose her to something that her body is treating as toxic, since she has an on going rash.
She actually tolerated the Dr and let him examine her, which is a huge change. She usually goes a little nuts as soon as we walk in. And while she does know what is going on to a certain extent, she did pretty well. As soon as they call her in, she starts asking "hurt? hurt?" which is heart breaking, but luckily she didn't freak today. I have started asking whoever we are going to see to not wear their lab/white coats into the exam room, and it seems to be working so far. She even let them weigh and measure her. At 22 months, she is 36 inches tall and weighs 37 lbs.
During the physical exam, the Dr thought that he could feel her liver, but said that could be normal, or it could still be inflammed.
Our next step is an ultrasound this Friday am. No food or drink for Mimi for the 4 hours prior to the ultrasound will be absolutely delightful, but what are you going to do?
After the ultrasound, then we will have more blood work done in about 6 weeks, they are going to review her enzyme levels again, and also test for a variety of other possibilities, and then a follow up with the GI Specialist.
As long as we make it thru the ultrasound and they don't discover a tumor or any major liver damage, we are in good shape, so for now we are holding our breath and crossing our fingers for that. Hopefully since our appointment is in the morning, the Dr will be able to review the results that afternoon and not make us suffer thru the weekend.
Thanks again to everyone for all of your support. We will be so relieved once this is over. Every time she says she has a stomach ache I get the chills and try not to freak out. It will be nice to get back to normal life and just worry about all the normal things!
xoxo,
Christine
Monday, July 25, 2011
Thursday, July 7, 2011
Update on the Mimi Monster and her pesky liver!
Sorry baby, no more nuts for you!As many of you know, while in the hospital for her allergic reaction, Mia's liver enzymes (ALT & AST) came back extremely elevated. Very unusual for a young child. We had to do a lot of follow up with her Dr, and a lot of follow up testing. She went to the hospital on April 12, so we have been dealing with it for about 90 days. Long story short, no matter what is causing it, when your levels are as high as hers are, it causes liver damage, and she was given a diagnosis of "chronic liver disease". Dr can't figure out what is causing it, and referred us to pediatric GI specialist.
Apparently Portland is lacking pediatric specialists. Last year when she needed to see the neurologist, she saw the ONLY one in Portland. When we got our referral to the GI specialist we learned that there are only 2 offices in the area, and they originally couldn't see her until September. Our Dr called and requested they see her sooner, and our appointment is now moved up till July 25.
Even with an appointment that close, the Dr has requested she have continued blood tests. Those suck. She freaks out (of course) and it is a horrible experience. When I took her on Tuesday afternoon, she was so combative, they tried & tried and poked & poked, but couldn't get a vein, so we were sent home with instructions to come back the next day.
Originally our Dr suspected that her levels may have been high from her allergic reaction (essentially the nuts were poisonous). But when her levels failed to come down, we kind of ruled that out. Enzyme levels can be high for a variety of reasons, anything from a hereditary disease to cancer to overdose on drugs, even a vitamin D deficiency. The levels just show that your liver is being damaged from something.
Also - before we left the hospital, the Dr suggested a blood test to determine if her allergy was to nuts, shellfish, or both. We found out a couple of weeks later that it was cashews. Thankfully, not peanuts. I followed up with the allergist, and we had the "prick" test, which revealed cashews as we already knew, along with a new allergy to hazelnuts. The allergist informed us that it is very common to have one tree nut allergy, and develop an allergy to the remaining tree nuts shortly thereafter. Apparently this is commonly discovered/diagnosed between the age of 1 and 2 when toddlers start having a variety of foods. She recommended avoiding all tree nuts, along with peanuts (as most foods with peanuts have tree nuts mixed in, and it's not uncommon to develop a peanut allergy as well) and to maintain a nut free household. Greg had given her a peanut butter and jelly sandwich, and she had no reaction, but the allergist recommended not doing that again.
So, for the past few weeks, we have been avoiding all nuts, and giving her a liquid supplement of Vitamin D (800 mg) each night in her bottle.
And this morning I got good news! Not great, but good. Her ALT & AST levels are way down. The last time they tested, her ALT was 723 and anything above 52 is "out of range". Yesterday it was down to 90! Last time her AST was 250 and yesterday it was 62. So we are still out of range, but way, way better. Dr said to keep doing what we are doing! We still need to follow up with the GI specialist to determine how much liver damage she has sustained (hopefully very little) and make sure her levels keep coming down.
I am so, so relieved. Thank you everyone for your prayers and support this far. Hopefully we have it figured out and can go from here. Part of me is relieved and thankful. Part of me feels guilty that we could have essentially been poisoning our baby by feeding her nuts! oy. Or not meeting her nutritional needs by giving her a lack of vitamin D. But whatever it is I am just hopeful that we can continue to fix it and move on.
This kid is going to drive me to a breakdown, one way or another, I swear!
Apparently Portland is lacking pediatric specialists. Last year when she needed to see the neurologist, she saw the ONLY one in Portland. When we got our referral to the GI specialist we learned that there are only 2 offices in the area, and they originally couldn't see her until September. Our Dr called and requested they see her sooner, and our appointment is now moved up till July 25.
Even with an appointment that close, the Dr has requested she have continued blood tests. Those suck. She freaks out (of course) and it is a horrible experience. When I took her on Tuesday afternoon, she was so combative, they tried & tried and poked & poked, but couldn't get a vein, so we were sent home with instructions to come back the next day.
Originally our Dr suspected that her levels may have been high from her allergic reaction (essentially the nuts were poisonous). But when her levels failed to come down, we kind of ruled that out. Enzyme levels can be high for a variety of reasons, anything from a hereditary disease to cancer to overdose on drugs, even a vitamin D deficiency. The levels just show that your liver is being damaged from something.
Also - before we left the hospital, the Dr suggested a blood test to determine if her allergy was to nuts, shellfish, or both. We found out a couple of weeks later that it was cashews. Thankfully, not peanuts. I followed up with the allergist, and we had the "prick" test, which revealed cashews as we already knew, along with a new allergy to hazelnuts. The allergist informed us that it is very common to have one tree nut allergy, and develop an allergy to the remaining tree nuts shortly thereafter. Apparently this is commonly discovered/diagnosed between the age of 1 and 2 when toddlers start having a variety of foods. She recommended avoiding all tree nuts, along with peanuts (as most foods with peanuts have tree nuts mixed in, and it's not uncommon to develop a peanut allergy as well) and to maintain a nut free household. Greg had given her a peanut butter and jelly sandwich, and she had no reaction, but the allergist recommended not doing that again.
So, for the past few weeks, we have been avoiding all nuts, and giving her a liquid supplement of Vitamin D (800 mg) each night in her bottle.
And this morning I got good news! Not great, but good. Her ALT & AST levels are way down. The last time they tested, her ALT was 723 and anything above 52 is "out of range". Yesterday it was down to 90! Last time her AST was 250 and yesterday it was 62. So we are still out of range, but way, way better. Dr said to keep doing what we are doing! We still need to follow up with the GI specialist to determine how much liver damage she has sustained (hopefully very little) and make sure her levels keep coming down.
I am so, so relieved. Thank you everyone for your prayers and support this far. Hopefully we have it figured out and can go from here. Part of me is relieved and thankful. Part of me feels guilty that we could have essentially been poisoning our baby by feeding her nuts! oy. Or not meeting her nutritional needs by giving her a lack of vitamin D. But whatever it is I am just hopeful that we can continue to fix it and move on.
This kid is going to drive me to a breakdown, one way or another, I swear!
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