Children's & MRI
Short version: Today's Children's Hospital visit didn't give us answers. We are waiting on labs and a new specialist. The MRI was clear, and Lily is still lactating (for more on that fun fact, read on...)
About 10 days ago, Lily emerged from her therapists office, shyly. We are close. She tells me everything. For her to be shy was unusual. Turns out, she's been lactating - for about 3 weeks. She didn't know it wasn't normal and was really embarrassed about the whole thing. During school she'd feel the leakage begin and just hope that it wouldn't show through her shirt. She talked with her therapist about it - only to discover that, it is not normal for a 15 year old to lactate, unless pregnant or having just given birth. Lily has never even seriously held a boys hand, let alone being pregnant. Barring divine intervention, this was a new problem. I called her doctor (and bought the poor girl nursing pads). A blood test revealed high levels of prolactin. The doctor suggested a tumor or cyst on her pituitary gland, hence the order for the MRI. Long story short on that one... she had the MRI yesterday, reacted negatively to the dye, but ultimately had a clean MRI. No tumor or cyst. This is a huge relief but just leads to more questions.
Today we met with a children's hematologist/oncologist. She really suspected a pituitary issue (we didn't have MRI results yet). She ran a basic panel plus tests for antibodies in the blood (which would indicate an autoimmune issue) and some rare metabolic disorders. The basic labs were totally normal, which is maddening after several wonky labs here in the TC. Not that I want her to have bad labs; I just want answers and normal labs don't match the path we've been on. The Seattle doc believes this will come down to an autoimmune/endocrine issue and thinks some of the worst case scenarios are very unlikely. This is also a huge relief and ultimately good news. We should have the other labs in a few weeks, but the doc doesn't think they'll tell us anything.
The next step for Lily is to see an endocrinologist. There is only one here in the TC that sees juveniles. He is booked out until late January/early February. We'll get on the cancellation list and hope to get in sooner rather than later. She'll continue taking her meds, hoping to get some thyroid function going and get her periods down to a normal seven days as opposed to 25+ days. She went one day last week without crying and breaking down. This was good! She's been a wreck. Today was no good on that front, but that's to be expected. She's tired of feeling crappy, tired of being exhausted, nauseous, and emotional. She wants answers. She wants to feel better. We are all frustrated. I am relieved that she had a clear MRI, but feeling helpless and frustrated at being without help to make Lil feel better. Seems like this may all boil down to thyroid issues, which is best case scenario (I think?). I won't feel peace until I know that for sure.
Thank you for all your kind words, thoughts, and prayers. They all help more than you know.
About 10 days ago, Lily emerged from her therapists office, shyly. We are close. She tells me everything. For her to be shy was unusual. Turns out, she's been lactating - for about 3 weeks. She didn't know it wasn't normal and was really embarrassed about the whole thing. During school she'd feel the leakage begin and just hope that it wouldn't show through her shirt. She talked with her therapist about it - only to discover that, it is not normal for a 15 year old to lactate, unless pregnant or having just given birth. Lily has never even seriously held a boys hand, let alone being pregnant. Barring divine intervention, this was a new problem. I called her doctor (and bought the poor girl nursing pads). A blood test revealed high levels of prolactin. The doctor suggested a tumor or cyst on her pituitary gland, hence the order for the MRI. Long story short on that one... she had the MRI yesterday, reacted negatively to the dye, but ultimately had a clean MRI. No tumor or cyst. This is a huge relief but just leads to more questions.
Today we met with a children's hematologist/oncologist. She really suspected a pituitary issue (we didn't have MRI results yet). She ran a basic panel plus tests for antibodies in the blood (which would indicate an autoimmune issue) and some rare metabolic disorders. The basic labs were totally normal, which is maddening after several wonky labs here in the TC. Not that I want her to have bad labs; I just want answers and normal labs don't match the path we've been on. The Seattle doc believes this will come down to an autoimmune/endocrine issue and thinks some of the worst case scenarios are very unlikely. This is also a huge relief and ultimately good news. We should have the other labs in a few weeks, but the doc doesn't think they'll tell us anything.
The next step for Lily is to see an endocrinologist. There is only one here in the TC that sees juveniles. He is booked out until late January/early February. We'll get on the cancellation list and hope to get in sooner rather than later. She'll continue taking her meds, hoping to get some thyroid function going and get her periods down to a normal seven days as opposed to 25+ days. She went one day last week without crying and breaking down. This was good! She's been a wreck. Today was no good on that front, but that's to be expected. She's tired of feeling crappy, tired of being exhausted, nauseous, and emotional. She wants answers. She wants to feel better. We are all frustrated. I am relieved that she had a clear MRI, but feeling helpless and frustrated at being without help to make Lil feel better. Seems like this may all boil down to thyroid issues, which is best case scenario (I think?). I won't feel peace until I know that for sure.
Thank you for all your kind words, thoughts, and prayers. They all help more than you know.
Wow what a process! I’ve been thinking about you guys a lot since your last post. So glad to hear the MRI was clear! I wonder if this is related at all to her dengue fever (I read that post after your last one)? Poor thing. Hang in there both of you! I’ll be praying.
ReplyDeleteI wondered the same thing! However, I have not been able to find any correlation in my searches. The doctors are aware and haven't said anything either.
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