our family's adventures with autism and eosinophilic esophagitis
Tuesday, January 8, 2013
One procedure leads to another
The past few months have been fun for the snow and the holidays and all, but in the midst of it we have been busily racing down rabbit holes trying to solve the all of the kids' medical mysteries.
The sleep study in November gave us a diagnosis of obstructive sleep apnea for Myffy, which wasn't too much of a surprise. My sweet little 24 pound elfling sounds like an enormous old man when she sleeps, snoring long and deep with scary halting breaths that keep me awake worrying that she has suddenly stopped breathing. I've always blamed that horrible bout of RVS she had when she was only two months old that kept her in the hospital for a week and required her to take an oxygen tank home for sleeping at night. But now they think that it might be the adenoids or the tonsils. I really hope it is the adenoids or tonsils because either of those would be super easy to fix. Just a small surgery, a day in the hospital, something plenty of kids have done, and presto! Her obstructive sleep apnea would be no more! Fingers crossed that's all it is. Especially now that Myffy herself has been scheduled for an endoscopy by the GI doctor because her 1 pound of weight gain in the past 18 months is worrying to us all. Luckily she was a super hefty baby so this year and a half of stagnant weight leaves her still within normal weight and height for her age, even if she is now on the low side.
The major concern is that she may also have EE (like autism there is a very high sibling incidence) however because we have all been on a restricted diet for many many months, she may be having a subdued reaction which is harder to detect than Lu's original projectile vomiting symptom. Mainly Myffy makes strange throat noises while she sleeps, labored swallowing in between the snoring, which could be the sleep apnea, or GERD, or minor reflux, or EE. So for the moment we have been instructed to let Myffy have every allergen she can get her hands on so that we can get some reliable results for the endoscopy next month. Access to some real dairy ice cream and wheat based breads and pizza crusts might put a few pounds on her as well. Fingers crossed she will check out ok. The thought of putting her on Elecare Jr is pretty disheartening. If she does check out ok I can't help but think that sleeping better will help her appetite and all other areas of life as well.
The surprising thing about the sleep study was that nothing at all showed up for Lu. No abnormal results. No skipped sleep phases. No low oxygen levels. Nothing. Granted they weren't able to quite get all of the gear hooked up to her, but I was really hoping for something, nothing awful, just something easy, something that could be treated and fixed. Instead we have nothing. No results from that, still nothing from the unsuccessful eye exams, no explanation for the headaches or sleeplessness. We discussed with the doctor trying to do a sedated eye exam and sinus x-rays, but in the end we all concluded that if she needs to be sedated again we might as well go for the MRI which will show us the most. So last week we did the MRI here at the Medical Center in Flagstaff and today I got the results.
It's so strange waiting for results for procedures on my kids. Usually the result everyone wants from any medical test is the all clear, but instead I always find myself hoping that they comeback with something that is easily treated instead. I don't want anything to be wrong with my kids, but when they scream in pain and don't sleep at night I can see that something isn't right. So I want a reason. A solution. A plan of action. The results that came back today for Lu is an abnormal amount of fluid around the optic nerve. It might not be anything. It might be something. It might be causing enough pressure to cause the pain. It might be a symptom of something else going on with her eyes. But just from the MRI we really don't know. So just now I scheduled her into the pediatric eye center in Phoenix for a thorough and once again anesthetized procedure to dilate her pupils and examine all the parts of her eyes at 8:15 tomorrow morning. On the one hand I am completely relieved that there are no tumors, no major malformations of the brain, no obvious and dangerous swellings inside. I am glad to know that the worst isn't there. I'm also slightly relieved that something showed up because if nothing at all had we would have hit a dead end with no way of knowing how to offer relief. And yet what we are left with now is yet another procedure to explore and try to find the cause. Can I cross my fingers three times in one post? Sure why not. Fingers crossed!