She’s got a big head.

Why, yes, yes she does. The “she” here being referred to being, of course, Kendall.

I am thinking something like “tact 101” wasn’t part of Dr. B’s ESL/med school training based on this blurted out assessment at our neurology appointment yesterday. Luckily, I have grown thick enough skin to not be bothered by comments like this anymore, other than to recognize that yes, my child does indeed have a large noggin. Larger than the rest of us who have my genetic penchant for big heads. But anyways – that wasn’t the point of the visit yesterday. It just struck me as funny when the little teeny asian woman who is the neuro resident walked in, took one look at kendall, and made that proclamation like she had just figured out the key to world peace.

“She’s got a big head”.

Among the other things that we discussed were the fact that Kendall has had MULTIPLE clear EEG tests, 2 “ok” MRI’s (minimal findings that only supported what we see in her delays and presentation, nothing shocking), and most of all – I DO NOT THINK SHE IS HAVING SEIZURES. Most neuro’s are only good for one thing – seizure control. It’s all they see, it’s all they know, it’s all they (some of them) think their job is – to deal with kids who are having seizures, and make those seizures stop. This is frustrating when dealing with neurologists because your child has a “neuromuscular disorder” – because MOST of them aren’t sure what to tell us if she isn’t having seizures. Unfortunately, there is a LOT of stuff that the brain happens to control, most of which is what tends to go haywire in Kendall’s little body, and THAT is what we need help with! NOT another assessment about whether she is having seizures!

So thus far – most of our interactions with neurology have been “less than helpful”. Rather an exercise in futility, except that we usually receive more assurance that she is not having seizures. Excellent. Now, I will say, our first neuro up at LG, is the one who identified mitochondrial disease as possibly being the cause of Kendall’s issues, and he is the one who helped get us started on that path way back in the early days. Dr. G in pittsburgh is a neuro, and obviously you know we love her. She “gets” the whole connection of mito from the brain to the muscles and systemically, so she was obviously a huge help, IS still a huge help in getting the whole body approach to helping Kendall. But up until yesterday, we just didn’t have that connection at Milwaukee. our former neuro was helpful at explaining that IF mito was kendall’s diagnosis, her “seizure like activities” or vaccine reactions were more likely “brownouts”, just times where the energy was temporarily diverted elsewhere, so the brain has to go into kind of a “hibernate” mode to get other systems up to par. But beyond that, we got no real help/direction. Kendall would lose all sensation or movement in her legs for a few days – “oh….yeah that’s weird. Can’t help you. Hopefully she’ll be ok in a few days.” Kendall gets noticeably weaker on her right side when she is fighting a virus – “hmmm…..yeah, no idea what to tell you. most kids don’t show a hand preference till they’re 5.”

Luckily – he transferred somewhere else.

So our appointment yesterday was to meet the new resident and attending who will be taking his place as Kendall’s neuro.  And except for the big head comment – we absolutely loved them both. They both had as good of a grasp on “mito” as a systemic disease that ALSO involves the brain as anyone I have ever encountered, including the resident!  The overall takeaways from this appointment were essentially:

1.) Fluids – and that being specifically D10 – are SUPREME to preventing further mito damage/crashes when Kendall is otherwise compromised. Compromised can be anything from not tolerating full calorie feeds to definitely fighting a bug or a virus. If she’s off her baseline and headed towards “sick” in any way, she needs more fluids more faster. Period end of story.  And since we have a hard time convincing ER docs to stick essentially maple syrup into an otherwise mostly healthy seeming child, our complex care nurse is going to get all of our labs, analyze the patterns, and help us come up with an addition to our TWO protocol letters (that still get ignored) that state what her labs SHOULD look like, and if they aren’t THAT spic and span perfect, then she gets D10. There was a possibility raised of “scheduling” a fluid top-off on a monthly or bi-monthly basis, but then that got into the whole discussion of whether the IVIG will be started, in which case we would be discussing a port, and if we had a port we could just run fluids at home, etc etc etc. It got too overwhelming to think about all of that.

2.)  IF we end up avoiding the IVIG treatments, and Kendall manages to stay on a VERY healthy upswing in her health status, when she turns 3 we may be able to start a very slow vaccination process with her to offer her some desperately needed protection, and this would likely involve admitting her, starting fluids, and then administering the vaccine. I actually started laughing when the doc suggested this, then realized she wasn’t joking. It sounds like an insane plan. Surely there is a happy medium between not vaccinating an immune deficient kid at all, and hospitalizing them to protect them from the “side effects” of these supposedly innocuous vaccines. Kinda makes you scratch your head a little at the logic….I am definitely working on finding my OWN comfort level with this for her. Since we have a year to think about this one – I’m content to backburner it for now. But it is good to just have further support for our “no vaccinations for kendall” thought process right now.

3.)  We aren’t scheduling followup with neurology. She assured me that with mito kids, you just can’t predict how often they will need to be seen. Kendall could end up inpatient in three weeks and do her weird loss of limb control thing, and they would be consulted then – OR – she could be absolutely peachy for 8 months and not need a thing from them. She assured me to just CALL her if we were having questions or concerns or anything. Come back in a year if we wanted to, or just wait till there was an issue. I know this seems like an odd thing to think is great – but when we have SO many other specialists/appts/therapies/meetings to deal with – being able to be in charge of our own scheduling for one is SO appreciated. On top of just hearing out of her mouth that we would not be thought of as crazy if we wanted to get something checked out if things changed in one or two months. Just that she GETS that mito is unpredictable, and it can cause some WEIRD symptoms, and you just can’t always fit mito kids into a nice predictable “see you in three months” box with things like neuro symptoms.

So that’s why I was so excited.

It’s not that we got any great answers or even any huge help. It was just that i felt heard, and understood, and I feel like Kendall will be understood and helped – in the way that she needs most.

And now I have to go start gathering up all the recent labs (because those have yet to be organized in any semblance in Kendall’s 5 inch thick notebook of medical stuffs), and get them up to the complex care team, and order all the imaging from LG and PGH to be sent to milwaukee also, so we can start making a cohesive plan of “what lab values actually signal impending doom for kendall, contrary to what you may have just learned in med school”. I can’t wait to whip that puppy out for a few residents…Actually, I am more just looking forward to being able to make sense of some of her wacked out labs for myself.

So that’s the big neuro update.

and now I have to go create a whole separate blog for “december daily”. Because I am crazy like that. And i had too much walmart sushi for lunch.

everybody wang-chung tonite!

T-money.