You may have read my previous posts on Eli's stomach troubles: Reflux, Milk/Soy Protein Intolerance, colon inflammation, etc. Around last November we felt that these things were pretty under control. One outstanding issue remained: Eli has always been a terrible sleeper. Other than that, he was a happy, healthy, growing, funny, kid.
When I say he was a terrible sleeper, I know it sounds dramatic. Babies are infamous for keeping their parents up at night, right? And often, these issues can be behavioral. But Eli was up 5, 10, 15 times a night, squirming, crying, fussing, TRYING to get back to sleep. He would even lay in my arms and fuss, seemingly uncomfortable. I had always blamed his stomach issues, and to a point, I think we were right. As he has gotten older, and these problems have persisted, I was starting to feel like we must be doing something wrong with this sleep. But just to be sure, I plunged myself into reading all kids of sleep books, reading blogs, taking advice from others, and any other way of acquiring information I could on babies and sleep.
I would not consider myself an expert, but I kept having this nagging feeling that Eli did not fit into any of the categories. We did all the "textbook" stuff right. We had a great nighttime routine, we put Eli down to sleep in his crib awake, and he would put himself to sleep after just a few minutes of fussing or talking. And of the 15 times a night he woke up and cried out or squirmed, he would go back to sleep on his own about 12 of those times. We did not give him chocolate or caffeine or let him watch too much TV. He played hard all day and we made sure he got all his energy out. Things just were not adding up. And while this was concerning and tiring, I had grown accustomed to getting such choppy sleep and being zombie-like. Some night the most consecutive sleep I got was an hour and a half. I kind of accepted that this was just our life till...whenever he would magically grow out of it, I guess. Mostly I hated talking about it because it made me feel like I was either stupid or crazy.
Finally, at his one year appointment, our pediatrician dropped a bomb on me. She asked about his sleep and I answered honestly. After listening, she said, "This is not right. He needs to see a sleep specialist." I can't really explain why this upset me so much. Maybe because I assumed a sleep specialist's job was to lecture me on my parenting skills and tell me what I was doing wrong. Or to tell me to leave my baby to cry all night in his crib and that would "fix" him. I actually put off making the appointment, but finally we had it scheduled for late February. Off to Children's Mercy we went again, this time to the Sleep Clinic and Nurse Practitioner Jamie Neal.
I wisely took some video of him sleeping with us to the appointment. She heard our whole story, watched the video, took notes, asked questions, and I held my breath. All my worrying was in vain. She was sort of perplexed, but assured me that this did not seem to be a behavioral issue. From the video, she said she saw some strange movements in his sleep. She mentioned a disorder I hadn't heard of before: Periodic Limb Movement Disorder (PLMD). This had something to do with iron in the blood, but I didn't really understand. She decided to consult with another doctor and said she'd call back. In general, we walked out of the appointment disappointed. I think we thought she'd have a quick, magic answer. And I didn't know about her limb-movement theory. However, that very night, as I held Eli in the night while he was trying to sleep, I noticed his foot flick. Then a wrist. Then his whole leg would twitch. This went on for 20 minutes. How could I have not noticed this before? (Answer: the zombie state of sleep-deprivation in myself that I mentioned before).
A few weeks later, again, I felt like a bomb got dropped on us when Jamie called to say Eli needed to have a sleep study. Oh, and it would be 3 months before we could get in. WHAT? 3 more months of no sleep, PLUS then having to go through a sleep study? With a toddler? The good news was they had a cancellation policy and the sleep study clinic said I could call every day we were available to try and get in. So you know what I did- I called EVERY DAY. We actually got in in less than a week! This was an immediate sign to me that God was guiding this and we were on the right track.
The sleep study was a nightmare. I am glad we didn't have to wait longer because if I'd researched it more, I would've chickened out. Eli did about as well as you could hope for in a 15 month old baby. But they had to hook him up to all kinds of wires and electrodes all over his body, in addition to wrapping up his face with this tape stuff. There were 26 probes, an oxygen/carbon dioxide monitor in his nose, a video camera on the crib all night, and the whole room had audio recording. I got to sleep in a bed next to his crib, but I use the term "sleep" loosely. He did sleep some, but woke up crying tons (like usual), but was more upset than usual because of the stuff all over him. It's so hard to not "help" your child when they want it- he wanted me to take all that stuff off of him and I couldn't. But I knew we had to persevere. And in the morning, the nurse said she thought I should know they got lots of good data and did see lots of unusual movements, so she assured me it was worth our time bringing him in.
The crazy thing about sleep studies is that they take the data from the electrodes, nasal-thing (actual term), audio and video, and compile it into this huge report that takes 30 SECONDS of data and puts it on ONE PAGE. The reports are thousands of pages long. And someone reads them and scores them and then figures it all out. Crazy.
Finally, after three weeks of waiting, Jamie called today with the official diagnosis. And, as she suspected, he has PLMD. I guess that a "normal" number of what they call cluster movements in one hour is 5. On average, Eli had 14.6. Nearly 3 times the normal levels. And from the brain data, they could tell that's what wakes him up. Also, his blood work backed up the fact that while his iron levels are fine, his ferritin levels are way low. They want them to be at 50 and he is at 6. Ferritin has to do with storage and release of iron, and iron has to do with (drumroll please) controlling limb movements. So the blood work backed up the sleep study data. The best part is that it's an easy fix: we just have to do an iron supplement.
I was over-the-moon happy. It felt like freedom. It felt like justification. It felt like I could finally scream to the world "I'm not crazy!" It was such an answer to prayer. Not just my out loud, long-time prayer for Eli to sleep; it was also the answer to the humiliated, failure-wracked, struggling, small voice inside of me, barely able to beg God to intervene. But He heard me, and though the journey to this place has been long and winding, I am thankful to be here.
