We are currently revisiting all of Eli's dairy and soy issues, and this article came out today. I have used the mentioned blog a ton to cook food for myself as Eli was a very young baby, and the recipes are awesome. But the article is a good reminder that the issues we've faced can really bring havoc to your family and cause a lot of struggle with a newborn. People often mention that their kids have dairy issues, but MSPI can be so bad if undiagnosed that it's more like severe colic, not just a little gas or fussiness. I held Eli non-stop for the first several months, and even then he wasn't content. It wasn't till I eliminated all dairy and soy that things changed at all.
Fussy Baby? It could be MSPI Metro Neighborhood News Omaha, NE
Showing posts with label Sleep. Show all posts
Showing posts with label Sleep. Show all posts
Thursday, June 30, 2011
Tuesday, June 7, 2011
Eli Iron Update- 2 Months
This has been another crazy month for Mr. Elijah Boo (as we call him around here). If I didn't know us, I wouldn't believe it. Just to brief you: Eli has now been taking his iron supplement for a little over two months. At the one month mark, I shared that he had been doing better, but then got an ear infection. Well this ear infection ended up turning into a long, drawn- out illness that involved him breaking out into hives all over his body! The hives lasted almost 5 weeks! He was very sick for awhile and his sleep was definitely affected. Here he is with the hives:
They weren't from his medication, and they were not a reaction to the iron. The doctor believes they were just part of whatever virus he had that caused the ear infection. They were terrible and would just appear and disappear all over him.
But I will share this. I would say out of the last 40 days, he has slept all through the night probably 10 nights! This is cause for celebration! Even the times when he has been up, he is still doing so much better, like sleeping 6-7 hours straight, which he was not doing before. I can detect virtually no limb movements.
He is just doing so much better, and if we can keep him healthy, hopefully at the three month mark I can share even better news. I am still so grateful for this amazing progress and God's provision for us. It is such a difference when I can think sort of clearly and not be surrounded by a haze of exhaustion constantly. It is such a comfort to watch him sleep on the video monitor and not see his legs and arms jerking. He is at peace most of the time when he sleeps! Amazing! I can't stress enough the feeling of frustration when you watch your baby struggle to get comfortable and to REST. I am thankful for these blessings of peace and rest.
And, as you might expect, he is so much happier in the daytime too! He was always a good-natured baby, but he has been so happy that I cannot explain it. We laugh and play and giggle and have so much fun. He plays and is happy. I didn't realize how cranky he was simply from being exhausted, too. Poor baby. I am so happy to see him happy!
Thanks for reading. Check back for even more good news next month!
They weren't from his medication, and they were not a reaction to the iron. The doctor believes they were just part of whatever virus he had that caused the ear infection. They were terrible and would just appear and disappear all over him.
But I will share this. I would say out of the last 40 days, he has slept all through the night probably 10 nights! This is cause for celebration! Even the times when he has been up, he is still doing so much better, like sleeping 6-7 hours straight, which he was not doing before. I can detect virtually no limb movements.
He is just doing so much better, and if we can keep him healthy, hopefully at the three month mark I can share even better news. I am still so grateful for this amazing progress and God's provision for us. It is such a difference when I can think sort of clearly and not be surrounded by a haze of exhaustion constantly. It is such a comfort to watch him sleep on the video monitor and not see his legs and arms jerking. He is at peace most of the time when he sleeps! Amazing! I can't stress enough the feeling of frustration when you watch your baby struggle to get comfortable and to REST. I am thankful for these blessings of peace and rest.
And, as you might expect, he is so much happier in the daytime too! He was always a good-natured baby, but he has been so happy that I cannot explain it. We laugh and play and giggle and have so much fun. He plays and is happy. I didn't realize how cranky he was simply from being exhausted, too. Poor baby. I am so happy to see him happy!
Thanks for reading. Check back for even more good news next month!
Monday, May 2, 2011
Eli Iron Update- 1 Month
A few weeks after we started the iron, he started sleeping longer chunks, like 6-7 hours! And I noticed his sleep was so much more peaceful. He even went almost 9 hours one night, and then, lo and behold, about a week ago he slept ALL NIGHT LONG! In his crib from 8:45 PM to 7:15 AM. Nothing even close to that had ever happened before! We were thrilled.
But such is Eli's life: he got sick the next day, was sick all through Easter weekend and into the next week, we took him to the doctor and he has a double ear infection. So since getting sick, he's been up and down all night again. However, I am confident it's just the sickness and hopefully when he's well, he'll start trucking along the path he was on. I got the same cold and have been sick for almost two weeks now too. So it's a long one.
I would like to ask you to continue to pray. I am cautiously excited because it seems like the iron is helping and we are seeing progress. But at the same time I have some fears. I fear that even once he is ABLE to sleep all night, he won't because he's never had the training. He is a very very busy kid and does not like to slow down. It's fair to say he doesn't like to sleep- like a lot of kids- but I also give him grace because who would like to sleep when your whole life it's been a terrible experience for you? Without sounding too self-absorbed, I guess these prayers are really for me: I am exhausted still. I dream that one day it will be a normal event for us to put him down in his crib and to not see him again till morning. I know we'll always have the usual "interruptions", but I'd love it if a good night's sleep was the norm. I have a little trouble believing we'll get there. (Forgive me, Lord, I am tired!)
I will give another update in about a month and hopefully we'll have fantastic results to share! Thank you again for caring about our family.
Monday, April 4, 2011
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.
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.
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