Answers

Today is a great day. Today we got the results of Eli's Sleep Study. We've already started calling it "Diagnosis Day", but before I get ahead of myself, let me catch you up on what we've been going through the last several months.

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.

So we will start the iron supplement tomorrow, and I guess it can take up to a month to build up and give results.  That's ok with me. I can rest happily tonight with the knowledge that the mom in me has been doing the right stuff by loving my baby and trying to get him the best sleep possible, and I didn't somehow mess him up in the process.  Hopefully these answers will lead to rest for us all, and a renewed sense that I am not crazy. At least not in this way.  

Our Reflux Experience- Part 3 (Final)

When I left off, Eli had just started Nexium and we were seeing some good changes. His Sandifer's Syndrome went away, he could play on the floor, he gained control of his head/neck and his muscle issues got resolved. His nighttime sleep started improving: he would sleep about 4-5 hours straight, but then be up and down the rest of the night. For me, this was a huge improvement. But still not good, right?

We saw our GI doc again in April. He upped Eli's Nexium and also recommended we start another drug, called Reglan, to help with gastric emptying, as he felt that Eli's tummy wasn't moving things through fast enough. Reglan has some scary side effects, and I decided not to give it to him. However, he also diagnosed him Milk/Soy Protein Intolerance. We had probably missed this all along because I hadn't been eating dairy- I had gone off of dairy (mostly) when Eli was born because I knew my husband had problems with it as a baby. I will do another post about that, but we had sort of ignored his MSPI issues because his reflux was so bad- I didn't know the two were interrelated. The GI doc had no real advice except to switch him to formula. Anyway, I decided to get serious about the MSPI so we thought we'd go ahead with that- the expensive kind of formula - that didn't have any Milk or Soy.  However, Eli had other plans, and he refused the bottle. So I started researching how to breastfeed with a baby who had MSPI. I finally got some help from this blog, and my friend Hailey, whose baby Knox had it too.

I had no idea how much soy I was ingesting, and also feeding to Eli directly, through Gerber Rice Cereal. The night we stopped the Gerber cereal, Eli slept so much better. He also began to nap better in the day. I was shocked. I went on a strict no dairy/no soy diet. This has been an additional personal struggle for me because I LOVE DAIRY and I love food in general. But seeing the change in Eli made it worth it.

I was now able to go to work one morning a week, thanks to my wonderful friend Ann Marie who watched Eli for the morning. Her baby Hailey had colic, so she was familiar with the challenges and told me she'd hold him all morning if that's what he needed. Thankfully, she didn't have to do that every time because he was getting better, but I was so incredibly grateful to her because I knew I could count on her to love my baby and care for him, even if he was fussy and sick all the time.

We also were able to start putting him in his crib for naps. It was a miracle- one day after he'd been at Ann Marie's all morning, we came home and it was naptime. He was clearly wanting to play, so I put him in his crib and sat down in the rocker. He played and played and then got silent...I looked over and he was ASLEEP! I couldn't believe it. We were able to keep moving forward with him napping in his crib and it was a huge relief to all of us. 

Remember how I said that reflux is back and forth? We often say it's two steps forward, one step back. He was doing better, but then new, strange symptoms started showing up in May/June. For one, he started actually throwing up. Tons. He vomited all over me all the time. And it was hours after he'd eaten. Often times, he'd nurse, be up for 3 hours, take a 45 minute nap, then wake and vomit. So we increased his Nexium again. But as time went on, he got worse and worse again. He couldn't be in a sitting position without vomiting. My mom was watching him during this time and noticed he was regressing. It became more than two steps forward, one step back. It became 2 steps forward, 12 steps back. He was a wreck again, most of the time. At night, he'd sleep maybe 3 hours, then be up all night- crying, fussing, etc- I'd hold him and walk around the room, and he'd pull his knees up and squirm and scream. It seemed like he was in pain again, but maybe a different kind of pain.

I had finally had it with our GI doc. He was helpful in some ways, but because Eli was growing great, I felt like he had brushed us off. I wanted to hear from someone else. I knew there had to be another piece of this puzzle. I called and talked to the nurse, and she actually recommended switching to another doc at Children's Mercy. Her name is Dr. Jennifer McCullough, and she is about my age- she actually has a daughter who is one month younger than Eli. We met with her in August. She recommended a scope for Eli, where they would look at his esophagus, stomach and part of his bowels. She also said he was taking way too much Nexium for her comfort (we later found out that Nexium can actually INHIBIT gastric emptying, which would explain his vomiting and the fact that he was getting worse instead of better), and we had to trust her as she switched him back to Prilosec. We were terrified, and the first weekend we switched was a disaster. But then it got better. Eli had his scope (a test the first doctor should've done a long time ago). The night before his scope, we had to give him an enema. He cried through the whole thing, but then slept better than he ever had before that night. So we knew there were probably some lower GI issues going on as well.  The scope revealed that he had some colon inflammation. Dr. McCullough decided this was possibly due to constipation issues. We started him on some Miralax, and things began to "flow", so to speak. Constipation doesn't mean he doesn't go very much- in fact, he went pretty regularly- but it means the colon doesn't empty completely, and gets irritated and swollen. This seemed right in line with his symptoms. His overnight cramping stopped, and he seemed to finally be comfortable! So...

I appreciate if you've read this far. Basically, I wanted to chronicle what we've gone through and post it so if you're having any similar issues with your baby, you might know where to find help.  Eli has some fairly minor Upper and Lower GI issues, but they completely wrecked our life for awhile.We thought reflux was the only culprit, but had to press on to discover the MSPI and the way his constipation was affecting his colon.

For me, part of this journey has been about remembering that I am Eli's advocate. He can't tell us what's wrong, and he certainly can't call the doctor about it. There were times I felt like the nagging mom who had to call the doctor for the hundredth time. But I knew he was feeling terrible and I wasn't going to just be ok with that. So I pushed. And pushed. And finally got some answers and help. Don't get me wrong- all the doctors we've seen tried to help and agreed there was something wrong that needed fixing. But it took lots of follow-ups and phone calls to figure it out, and I had to be proactive in learning about the issues myself.

So where are we today? Well, Eli's taking Prilosec and Miralax regularly. He's starting to eat solid foods (we met with a dietitian this week to discuss how we'll move forward when I'm done breastfeeding since he can't have whole milk). He is taking 2 naps a day in his crib- usually one short one and one long one. He is sleeping better at night. He isn't in constant pain. You can see on his face that he's finally a happy kid! He's super active and running me ragged! So now it's about managing his medication, being careful about foods, and the every day ups and downs of being a mom to a pre-toddler (oh the teething!). But at least it's not about constant pain and agony for all of us! 

Illnesses- RSV

As I mentioned in my introduction, Eli had RSV when he was 6 weeks old.  I wanted to tell this story because it's really about mother's intuition, even more so than about his illness. But I did want to touch on RSV because it is pretty serious. I had never had a newborn before, but when my older son, Seth, developed a bad cold, I knew it was a good idea to watch Eli for signs of catching it too. Our pediatrician had mentioned that RSV was going around and it could be dangerous for a baby.  Now, at this time, Eli was in the full swing of dealing with his reflux, too, so I had to carry around a terribly fussy baby and care for a sick 3 year-old all at once. No way to keep them completely separate.  I remember that on that Saturday, Eli started coughing. No big deal. By Sunday morning, he seemed really congested, and I just knew something was wrong. So off to Urgent Care we went. The Pediatric Nurse Practitioner we saw treated me just like an overprotective, over-worried, hypochondriac new mother. Of course, while we were there, Eli did his "I'm so charming" act and didn't cough once. She did say he sounded congested, but was about to send us home when I mentioned RSV, so they did a test.  We were actually ready to walk out the door when she peaked her head back in and said, "His RSV test was positive, but he seems ok.  Just go home, give him some chamomile tea (for a 6 week old!), and watch him. If he gets worse, go to the ER." She then sent in another nurse to go over some instructions, and I related my concerns to her- she also sorta blew me off. So we went home. I felt like, "Ok, I need to buck up and just deal with this."  I watched my 6 week-old baby get worse and worse- we put him in the steamy bathroom while the shower ran, we suctioned his nose with a bulb syringe, etc, and I wondered what "if he gets worse" actually meant. So Monday morning, I called our pediatrician. Her nurse didn't blow me off, but I think she failed to realize a key point: for older children (like Seth) and adults, RSV is nothing more than a bad cold. For babies, it can be very serious and lead to pneumonia and other respiratory problems, or, in severe cases, they can stop breathing.  So she told me to "watch him" and call again if he got worse.  Well, he got worse. But again, there is this fear of being just an "overprotective mother", so I kept trying to care for him at home. Monday night he slept very soundly most of the night- I kept checking his breathing and worrying. On Tuesday morning, I laid him down on the changing table to change his diaper, and saw him pulling his chest up really hard to try and breathe. He sounded like his lungs were full of cotton and could barely take a breath. I called the pediatrician again, and they said to bring him right in. We went in, and the nurse, upon seeing him in his carrier, said, "Oh my gosh! He can't breathe! Get him out of there!" They put an oxygen monitor thing on him, and he was under 90% (again, not so terrible for an adult, though concerning- but for an infant, terrible). The doctor rushed in and said he needed a breathing treatment ASAP and if his oxygen didn't come up, she'd have to put him in an ambulance! The word "ambulance" just shook me to the core. How did we go from "he looks ok, give him some tea" to "ambulance" in under 48 hours? We got his oxygen up to 93% and the doctor instructed me to drive straight to the hospital and she was calling to have him admitted. We were in the hospital for 6 days. 6 DAYS!!! I was furious that I didn't push the Urgent Care doctor more to do something- we learned she could have prescribed a nebulizer that would've helped clear his lungs. My pediatrician said she would always admit a 6 week-old with RSV even if he "seemed ok", for observation because they can get bad so fast. In the hospital, Eli had to endure breathing treatments and deep suctioning (they stuck a tube up his nose and down his throat to remove mucus) every 2 hours. This was because infants do not have the ability to expel mucus like older kids and adults. It just sits in there and makes them sicker and sicker. He had two chest x-rays to check for pneumonia. He didn't even turn a corner till day 4. So it was scary and hard and expensive and a very good lesson for me. From then on, I listened to my instincts and tried to not let anyone make me feel like just an overprotective new mom. And who cares if you are, anyway? Just be that, and if you're wrong, you're wrong. But if you're right- at least you know you've taken care of your baby. I shudder when I think of that Monday night when he slept so soundly- I worry he could've stopped breathing at any time. So I vowed to never do that again!