I started composing this post in my head Monday night with the information I had at the time, however new information came in yesterday that changes things some. Or a lot. Just not sure.
I received a call from our pulmonologist/sleep doctor Monday morning with results of Madison and Abby’s sleep studies, as well as their daytime studies (MSLT’s).
While Abby had a lot of awakenings during hers, it was suspected (and confirmed by her), it was being “wired for sound” as we like to say, that kept waking her up and typically that’s not the case. It means her sleep efficiency was down, but otherwise her sleep study looked pretty good. She had one period when her oxygen saturations were lower than we’d like to see, for about 10 minutes straight, that was not positional, but otherwise her saturations were beautiful all night. What was happening during that 10 minutes is anyone’s guess!! This news comes with more of a sigh of relief than one might expect…I am already struggling with the idea of two on oxygen at night, the idea that Abby might need it too was more than I could even contemplate. It was there though, in the back of my mind, so this news came with a huge weight lifted.
Madison sleep study looked good too!! We have a new setting for her Bipap (actually reduced by a point on the upper number) and information on a setting we can do on her bipap that may allow her to tolerate it for longer each night, called Biflex. She had, per the doctor, an AWESOME night of sleep!! She should have felt like a million bucks the next day!!! So why didn’t she?
In addition to the usual overnight sleep studies, the doctor had us go ahead and do MSLT’s. This study has the patient stay at the sleep lab all day and after being awoken at 6ish, they have them lay down in a dark, quiet room every 2 hours and attempt to fall asleep for 20 minutes. All the while they are hooked up so they can monitor how quickly they fall asleep (if they do), and if they get into REM sleep during these naps.
Honestly, my kids almost never sleep during the day, unless they are sick. They can be drop dead exhausted and still cannot fall asleep, so I didn’t expect much to come of this test, and even asked the tech to MAKE SURE we really had to do it. We did, and we gained some new information.
To say I was shocked when Madison told me she fell asleep during 4 of the 5 nap times (8am, 10am, 12 noon, & 2pm), with only the last one at 4pm being the one she didn’t doze off during, would be an understatement. Abby sharing she didn’t sleep during any of them, now that’s what I was expecting!!
Dr. J had information to share. Madison fell asleep within a minute on the first two naps, in three minutes on the 3rd one, and 11 minutes on the 4th one. This, along with the one she did not sleep during, averaged together, had her falling asleep in 6.8 minutes, with anything under 8 minutes being abnormal. She did NOT go into REM sleep during any of them.
So, the good news is, she is not narcoleptic (which I already knew), and the not so good news is that this qualifies her for a diagnosis of Hypersomnia. Basically, excessive sleepiness. Which seems so benign in some ways, but as we have clearly seen, is really something far more sinister. When you are THAT tired, your brain doesn’t work as well, and you just generally feel like crud….ALL THE TIME.
The remedy, if you will, is introducing a stimulant, and in this case the recommendation is for Provigil. Maybe. The thing is, we’ve discussed using Provigil before with Madison, even before we had this confirmation, and the issue lies in giving her the artificial feeling of energy when there is a very real energy deficit at play. If we “give” her energy that she proceeds to then use, that energy is coming from somewhere and the question is, which system is going to have energy pulled from it, and how bad will the effects be. Oh, and it can cause tachycardia (high heart rate), something we are already battling due to her cardiomyopathy, and something we really don’t want to exacerbate for fear that it will stress her heart. Yeah….lots of discussions need to take place with several doctors before this is really an option.
The reality is though, there aren’t really any other options to treat this, AND…..
We now have additional information to work with.
After getting back from Houston and having a “tired” Madison, things turned a week ago Saturday and I suddenly had an absolutely, bone deep, exhausted Madison. Add in some intense nausea …..and then naps almost daily….and I knew something was up. We saw the pediatrician on Wednesday and again I am thankful she trusts my gut.
Even if I don’t like what she wants to test for.
As I shared in my last post, we did labs on Madison that afternoon, and those included testing her for a reoccurrence of Mono. I couldn’t allow myself to even think about it….we just cannot go through it again. Particularly not right on the heels of a reoccurrence of the Mycoplasma infection in December. Just cannot. It took too much out of her last time (early 2009). I had a feeling though, deep down.
You know it’s not good when you hear your doctors voice on the other end of the phone. As awesome as Dr. S is, if things are normal, her nurse calls. So when I answered and it was Dr. S, I actually said, “Noooooo”.
Madison is testing positive for another acute mono infection. Both IgG and IgM for EBV are very positive.
Of course, I said, but I didn’t think you could get it again!!! Well, if your immune system is crap, apparently you can, and she does, so there you go.
This is frustrating and concerning on so many levels.
-We are still not back to baseline since the last round of Mono & Mycoplasma (2009)…not even close.
-No illness is good with Mito, but Mono is definitely one you want to avoid, much less her body having to fight it twice
-To me at least, this is just another indication that her immune system is out of commission, and I am just not sure what we do about that
-We yet again get to try and not have the other two get it
-The last round of this crud led us into one of her worst years ever….Cardiomyopathy, respiratory weakness and arthritis were all diagnosed within 8 months of the last Mono infection
-The poor thing really just needs a break
A friend asked yesterday how long it took her to get over the last round and I had to say, in all honesty, she never did!! When I realized we have hit the two year mark since the last round my stomach hurt. We have been trying for TWO YEARS to get her back to where she was before Mono came into our lives. TWO YEARS. Sigh.
Wallowing and worrying doesn’t make this any better, although I suspect I will be in that place for at least a few more days. Maybe longer.
Please just pray for my girl.