March 12th, 2010

Family May 2012

hormones and humor

I posted something in the pregnant community today because I completely lost it while watching some reruns of The West Wing today.  They were running the two-part episode ("In the Shadow of Two Gunmen" - the season 2 premier episodes) where Josh and the president are shot and in surgery.  Every hospital scene that flashed had me sobbing. It seemed like an over the top response to have and while I know that pregnancy is this hormonal emotional roller coaster for many women, but I've never really had this kind of response before. (don't get me wrong - I'm hormonal... my temper is shorter than ever and I snap for no good reason frequently, but crying? Not as much.)

I received a lot of responses most of which boiled down to "you're totally normal." But the BEST response I've received so far was this one:

"It's okay to cry at tWW. It was the best show on television, ever. ;-)"

That just about summed it right up.

(and in my defense - that's an incredibly well written, well acted, and well executed episode).
Family May 2012

Eureka!

We've been playing the medication shuffle with J's medicines for months (years?) and it just feels like it will never end. In fact, it might not. In October we stumbled upon an unconventional, but effective, medication combination. We had high hopes that we'd finally found the solution - but, like every new protocol, the success was short-lived. Every new protocol we try works. Until it doesn't, that is. It'll work for a few days, a week, a month... but never for long.

In some ways, life before a diagnosis was easier.  Before we knew J had ADHD, he was just... J.  Before he'd ever been medicated effectively, we didn't know how much easier it could be.  He was just J.  Once we'd had him effectively medicated, the times when he wasn't well medicated became unbearable.  I'm not clear if it's because the ADHD etc. has gotten progressively worse or we've just become less accustomed to it.  I think it's actually a bit of both.

It's no secret that we've really struggled with J's medication protocol.  Medications nearly always work, but we always, always hit a wall - either he'll start refusing to take it, or he'll still take it, but it ceases being effective.    It's frustrating, because it's easy to believe we're just not on the right track at all, but we're also a bit at a loss for what else to try sometimes.  We've had to "think outside the box" a lot more than any of us are comfortable with, including our extraordinary developmental pediatrician.    We've spent a long time dancing around it, but ultimately decided it was time to add in a neuroleptic and see how things go from there.  But, cautioned Ye Old Developmental Pediatrician, it would be prudent to seek a second opinion.  He pointed us to an excellent child psychiatrist from the National Institutes of Health (NIH) National Institute of Mental Health (NIMH).  He didn't have any super-genius rats in his office, but from what I understand, he's one of the foremost experts in the field and has written much of the research literature out there relating to the issues we're dealing with.  He also, apparently, has a reputation for shying away from neuroleptic medications for children because of the side effect profiles, and he definitely "thinks outside the box" and uses therapies that might otherwise be considered unconventional, but has had great success with them.

I was really pleased to be able to get a series of appointments set up with him very quickly after I contacted him.  I gave him what I thought was an unnecessary warning that there was always the possibility that I wouldn't be able to make it to some or all of the three appointments  we'd set up since I was having a complicated pregnancy.  We had a parent-intake appointment, an appointment for Julian, and then a third appointment to get his recommendations all set up.  And... of course I got admitted to the hospital the day before the parent-intake appointment.  J, unfortunately, was simply deteriorating too quickly to postpone until this pregnancy calms down (e.g. after delivering this baby!) , so Seth went without me.  I figured I'd for SURE be home before J's appointment  - five days later.  Nope.  Missed that one, too.  I sent the doctor a very long, detailed email with J's history, including the very little that we know about his prenatal and early infancy history.    The doctor said that it was so helpful and thorough that we almost could have done away with that first appointment.  Truthfully, I'm not sure that I could have written it as thoroughly as I had if Seth hadn't told me what kinds of questions the doctor had been asking in the first place, so it's unlikely that we could have skipped that first appointment (and $300!!)  if I'd been able to pull it together sooner.  (it was a really, REALLY long email!)

But I was finally able to make it to the final appointment with the doctor.  He was extremely nice, very thorough and helpful.  It was really great to talk to him and I'm glad we got his input.

I will say that any time we speak with a new specialist, we have this hope in the back of our heads that we'll hear "Well, you're clearly doing everything wrong.  If only you do these things differently, everything will fall right into place!"  I mean, really, that would make our lives a lot easier, right?  I could handle being told that I'm approaching this parenting thing all wrong, if only it would make it all easier.  Hah!

I shouldn't be surprised that we didn't have that "eureka!" moment - but I still wish it would happen some day.  What we heard, instead, is that we're doing all the right things.  He reinforced that J is very lucky to have us (we're very lucky to have him, so it's all fair).  He said that the medication protocol we're on is exactly what he would be doing, but suggested being cautiously more aggressive with dosing.  We had started J on Abilify just about the time that we set up these consultation sessions, but we were on a pretty low dose.  He was pleased to hear that we'd already moved the dose up, and suggested that we'd probably need to raise it more than once.  He did, however, note that Abilify often has a "ceiling effect" - where the drug will work for a while, but then gets to a point that it's not working well enough and raising the dose doesn't change the effectiveness (just increases the side effects).  He had a few other suggestions if the Abilify doesn't work in the long term, but he felt that it was a good option at this point.  We're not seeing any significant effect from the Abilify - but it's still early and we're still at a pretty small dose.

Once we get the Abilify dosing set, he recommended tweaking the Prozac dosing, and then moving toward augmenting the ADHD medications - they work pretty well, but wear off far too early in the day for J to really be successful.  J is what you call a "fast metabolizer" which is okay, but does make it difficult to keep him optimally medicated, particularly when he is so non-compliant about taking medicine in the first place.  The Child Psychiatrist noted that there are no pharmakokinetic studies in children, only in adults.  His experience, however, is that any XR (extended release) formulation of these medications don't work as well with children as they do with adults.  I quite agree, but our hands are a bit tied on that one, because we have to maximize medication in as few doses of medicine as possible, since it's incredibly difficult to get him to take medicine reliably.

So it's still a work in progress.  But at least now we have further confirmation that we're on the right track.   No magic answers, but just knowing that we're not doing *everything* wrong is comforting.
Family May 2012

Instability

So, you know, I was getting really bored with my pregnancy.  I mean, hyperemesis is so last year.  And preterm labor?  Come on!  I've been there done that - it's not exciting anymore.  So I thought I'd mix things up a bit and try for gestational diabetes.   I mean, sure, not eating for five months would seem to free me from that specific concern, but that only makes it MORE interesting, right?

Yeah...  When I was in the hospital last weekend, the OB I saw said, "I don't understand why you're having problems with your blood sugar when you don't eat." (I'm taking that a bit out of context, for what it's worth - he did go on to give me very important information, but that comment happened to be the only relevant piece for this post).  On Monday, I saw a different doctor in the practice and I told him about that comment and he looked at me and said, without missing a beat, "It's because you're diabetic.  Very.  Very diabetic."  Well, duh, I guess.  He's right, of course, but it was interesting to see the difference in approach (both were fine with me, for what it's worth).  The doctor on Monday said the bottom line is that it doesn't matter why this is going on.  Sure, it's an intellectual curiosity, but when it comes down to it, the important thing is that hyperglycemia isn't good for mom or baby, so we have to fix it.  If we figure out the "why" along the road, it's a bonus.  

Glyburide didn't help enough (at all?), probably in large part because I couldn't consistently keep it down.  So I started insulin on Tuesday.  And my BG just keeps going up and up and up.  I talked with the doctor on the phone today because my blood sugar is still all over the place (223 at 5am yesterday!!  223!!).  My perinatologist had suggested moving the insulin to twice per day and I'd left that message with the OB on Wednesday, but didn't hear back.  I checked in today about the high levels and he said to move my dose up by 60%, but not to move to twice a day yet, because he wants to get my early-in-the-day sugars under control first, because if he tries to treat the later-in-the-day levels before he gets the morning ones under control, he could risk over-medicating me and having my blood sugar crash.  He acknowledged that when I go in on Monday with the results from the weekend, we'll probably be considering adding in a morning insulin dose also, so it's not that he's not being aggressive, just that there's logic to his approach.

I noted that the levels just keep going up and he reminded me that as the pregnancy progresses, it's only going to go up and since I can't just shift my (nonexistent) diet, the insulin is going to have to be tweaked regularly as well.  I also just went up on my terbutaline dose, which can also affect blood sugar, so it's something we have to work around and be cognizant of.  Seriously, leave it to me to have hyperemesis and crazy blood sugar at the same time.  Yee-haw!

I will note that it was particularly hilarious to have to go have a nurse show me how to draw up and administer the insulin (a subcutaneous injection). I've probably done a thousand subcutaneous injections on myself. But it was still good to walk through it with the nurse so she could explain what things to be careful of and what symptoms to look for if my sugar crashed. We had to brainstorm a little bit about how to handle it if I do crash- her normal advice is to drink 1/4 cup of orange juice. But I can't do that. But we came up with other solutions, and I was given strict orders to call immediately if I couldn't get it back up.