I want to write about something and I just can't seem to, at least not with any flourish or skill. It comes out garbled and contrived, a simple rearranging of everything I've ever written in this space.
We don't know.
It doesn't matter.
I'm cool as a cucumber.
Every bit true and untrue depending on the moment being surveyed.
The truth in this moment is, I've been thinking quite a bit about answers lately. I've had the flutter of hope in my chest and the churn of anxiety in my gut. The truth in this moment is I hope they exist, even if I can't quite allow myself to fully believe it anymore.
Dear Super Fantastic Pediatrician,
I have a little theory and I wanted to get your opinion on it, when you have time. KayTar hasn't had an episode in over 130 days now, by far the longest stretch she's ever had, and none at all since her g-tube insertion. (knock on wood) Their sudden and prolonged absence made me wonder if they could have been nutritionally-induced, so I've been reading here and there, trying to piece things together. Could they have been hypoglycemic episodes?
I thought about all of her possible triggers; travel, excitement, waking early; and a common denominator is that in all of those situations is that it is unlikely she would have eaten anything or drank her Pediasure due to the level of excitement and activity at the time. Of course, they happened when she was ill, too, and her nutrition suffers so much when she is sick. Her glucose levels have always been quite low when we've gone in for dehydration or illness, and she has always had clusters of episodes around those times.
The symptoms seem to fit; altered level of consciousness, seizure, vomiting, unresponsiveness, and lethargy; and hit all of the parts of the episodes that are always present (minus perhaps the seizure activity, though she does have those ocular movements during the episodes). Sometimes she has light sensitivity and headache, too, but headache can be triggered by hypoglycemia. After she comes out of the episode, she is usually ravenous. It is the only time she feels and acts on hunger, the only time the sensation seems to breakthrough for her.
I don't know if there is anything to it or not. She's only had labs run once while she was actively having an episode, but I checked them and it was only a CBC with differential, no chemistries. Right after she had her g-tube inserted, she had that week of almost episodes, remember? She would use the same descriptive language, but it never escalated to the same level and we were able to stop them by adding an additional feed. Thinking of that combined with the sudden lack of episodes, made me wonder! Let me know what you think when you get a chance.
Our pediatrician thinks there might actually be something to this little theory I've cooked up and she's going to run it past the geneticists and get their take on it, too. It has been wiggling, partially formed in the back of my mind for some time, and a conversation with Natalie and subsequent conversations with Josh really solidified it for me. After a little research, I came across the predominate clinical manifestations of hypoglycemia and I was speechless; altered level of consciousness, seizure, vomiting, unresponsiveness, and lethargy...the ever present, major symptoms of her episodes. It has been 140 days without an episode and the only difference is that she is now receiving steady, adequate nutrition. Who knows if there really is anything to the theory? I certainly don't, but I wonder just the same and hope that maybe, just maybe this feeding tube has done more than we'd ever have dreamed possible.
The day Obama was elected, KayTar had a muscle biopsy. Tomorrow he will be inaugurated and we still do not have the results of that biopsy. I can almost see them, swirling in front of me in the future just out of reach. I don't know what they will tell us or even what I hope to learn from them, just something more than we know right now, I suppose. One more piece of this massive, beautiful, delicate puzzle.
I love your relentlessness on her behalf, Kyla. You are a warrior
flutter said it well.
you are also a scientist - piecing it together, bit by bit.
While my story is more tragic then yours...I remember all the feelings you have written about. I hope and pray with every fiber of my being that hypoglycemia is the answer....What tests are the running on the muscle biopsy? What are they looking for? The only thing I know about those tests are to look for Mitochondrial disease...and Mito disease unfortunately goes hand in had with nutitrion and the way the body is able to process food into energy....I know the wait for the results from the muscle biopsy is long.....and until then...I'll be rejoicing with you that K-tar has had no "episodes" and hoping and praying that the G-tube was the "cure" she needed. many prayers and hope....
The muscle biopsy is testing mainly for mitochondrial disease and also for other myopathies and metabolic disorders. KayTar has a variety of issues beyond the episodes (there are links on the sidebar that give a decent rundown) which might be indicative of mitochondrial disease.
Oh, wow. That theory sounds so promising. How wonderful it would be if the button put episodes behind you for good!
Good detective work!
Interesting theory mama, and you might be well onto something very important.
You are so a warrior - that is the best description. I hope and pray that nutrition is the key for KayTar and keeping her healthy. Hope you have good results from the biopsy very soon.
She is lucky to have such a smart mama. Love the pic.
Of course you are still looking for answers - there's nothing wrong with that. My family battled a genetic disease for 10 years without a diagnosis. Finally my mother (not a doctor) just started reading medical textbooks, and eventually she figured it out.
I can't believe the doctors never tested for hypoglycemia. It sounds promising, but how did Kaytar's episodes resolve, if they were caused by low blood sugar? Wouldn't the next step, without treatment, be a coma, not recovery?
She's been tested for what seems like everything under the sun including her glucose levels, however, her blood glucose has never been tested during an episode.
As far as the coma in lieu of waking up, I've thought about that, a lot, as it is the main flaw to the theory as far as I can tell. This is all I can really offer as an explanation and it isn't all that certain...during each of the recent episodes, KayTar has asked for a bottle of Pediasure while she was still in the "episode" and came out of the episode shortly after drinking it. Josh and I had always assumed that asking for that bottle was a sign that she was coming out of it already, but maybe the bottle is what allowed her to come out of it. I wish I could say with certainty that this is how she came out of the episodes each time, but I honestly cannot remember how she woke from every episode. I've written details of every aspect of these things, dates, times, symptoms, but I've never paid attention to the end of them. It didn't seem pertinent at the time. Josh thinks that she always asks for a bottle, which is the signal she is going to come out of it, but I can't really remember every instance in 3 years of these buggers to feel certain this has always been the pattern. It is an excellent question, one I wish I had a more exact answer to!
This sounds like a very plausible explanation. I hope for you guys that it is something as simple as hypoglycemia.
I hope there is an answer and I hope you find it.
I think your theory sounds dead-on. I couldn't say it better than flutter did... You are an amazing warrior for your daughter, and an amazing woman to boot :)
I just stumbled up your blog through a link from somewhere else to somewhere else to somewhere else...and I feel like I was led here. My oldest son also suffers from weird episode similar to your daughter. With no answer after 18 months, we finally ended up at Cincinnati Children's Hospital. Adam was diagnosed with a Complex III Deficiancy Mitochondrial Disease in December 2007. He has not had an episode in 10 months whle being on anti-seizure medication. I also questioned the hypoglycemia theory and never found an answer. Our younger son as Type I Diabetes so I still wonder about the low sugar possibilities in Adam. Good luck with everything!!
You are brilliant... I'm glad she has you as her mother.
I'd hate the not knowing...
That does seem like an excellent theory. If it proves true, you could then move on to sorting out some of the other pieces of the puzzle. And even if it doesn't prove 100% true, that little G-button does seem to have worked some wonders.
You are an amazing mother and woman!
A beautiful puzzle indeed.
So... what do they do if that is the answer? How do they handle that? Will it make things easier?
Holy crow, you are amazing. If this is part of the puzzle... wow.
I like to think that they would not have missed the possibility of it being hypoglycemic, but one never knows.
What deduction on your part.
i hope it is an answer, because once you know, you can DO something
Oh, Kyla. I am kind of holding my breath over here and hardly daring to imagine, even while a little bird of hope rises fluttering in my chest - I'm not even close by. I can't imagine how you must feel right now - and I hope with every bit of me that you are right, and that this ability to feed her means you don't have to go through those times any more, that you can learn to manage her sugar levels and train her to do so as she goes forward and grows. Fingers, toes, and eyes - all crossed.
That theory seems pretty sound to me, and I don't have any medical degrees. I was starting to feel my own heart leap when you were describing all the symptoms, wondering if this was T.'s issue as well (and we'd get answers). But then I remembered that her episodes come with head pain and light sensitivity, so that seems to discount that theory.
Good luck with the test results--I can't believe they're not back yet, though.
This is all so fascinating and exciting. It's like finding THE missing piece of the puzzle...you just have to wait and make sure it's a perfect fit.
I love that flutter said you're a warrior...I 100% agree!
remember when I told you Julia does THE EXACT SAME THING with her eyes?
yeah. at the sotos conference it came up aht hypoglycemia was a problem for some of the kids slightly older that Julia who have no gtube.
you are so brilliant Kyla. why do I even have any doctors?
Gosh, you're clever, Kyla! I hope something comes of this theory--and then won't you feel good about having made the decision to insert the tube!
Wow. Just wow Kyla. You are so smart, so intuitive, so articulate, such a great mother to that beautiful girl. I'm excited for you to possibly have an answer to something that is so monstrous and troubling. To say you rock is the biggest understatement, but it's totally true!
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