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Friday, July 26, 2013

Baby Boo Part Two

This is the second part of our history with Baby Boo, and his unusual issues.  You can read Part 1 here. 
Silly, happy kid...walked at 9 months, ran at 10.
Crazy.  Just crazy.  I know when you read some of this, you will think I am completely nuts.  That's ok with me.  Living it was crazy, too- and many times I questioned my sanity.  I do not blame you if you do the same.

So we'd struggled through some bad reflux, and finally had Boo a little more comfortable.  An entry in my journal from around the time he was 8 months said this:  "Right now, Boo is sitting on the floor playing.  He did it yesterday, too.  Not groaning or crying or barfing.  Not squirming in pain. Just playing.  And it's a miracle to me."  
Halloween- oh how he hated his doggie costume!

He still wasn't a good sleeper, but I told myself some kids aren't.  I had gotten used to little chunks of sleep.  He was still nursing strong and growing.  But around 10 months old, his sleep got worse.  He started waking up every 45 minutes.  EVERY 45 MINUTES.  He was still sleeping in our room at the time (we'd moved his crib into our room so I could be nearer to him) and I started just staying up to watch him.  

It was disturbing.  His arms and legs would jerk- first a wrist would flick, then a whole leg, then a shoulder.  Eventually he'd wake up and cry.  I'd pat him or hold him till he settled into a deeper sleep.  45 minutes later, it would start again.  He looked like he was having seizures or something.  I still blamed it all on his tummy problems.

I sorta ignored how bad his sleep had gotten  Seriously, by this point I hadn't slept more than a few hours straight in a day in 10 months. My judgement was off. And he was such a happy kid when awake, I was relieved by that.  

But at his 1 year check up, our ever-vigilant pediatrician asked about his sleep.  When I told her, she suggested we see a sleep specialist.  Who knew there was such a thing?  My first thoughts were against it, though- I thought I'd get lectured about letting him cry or the fact that I'd rocked him so much as a tiny baby.  But our pediatrician pushed me (have I mentioned I think she is a saint? I love her).  I made the appt, but actually rescheduled twice because I was a wuss.  I didn't want to get yelled at.

Finally, I met our sleep doctor.  When I explained his sleep routine, she immediately suggested a sleep study.  See, Baby Boo went to sleep, happily, on his own at a normal time. We had a bedtime routine, and he wanted to sleep.  He would play in his crib for a few minutes and then put himself to sleep.  There were no bad habits or things to break.  She said she had an idea what was going on, but wanted the study to confirm. The bad news was the waiting list was like 4 months long.  But she said we could call each day to see if they had cancellations.  I started calling the next day.  I am not kidding you- we got in.  This was a sign from God to me that this was what we needed to do

The sleep study itself was sorta brutal on both of us.  I'd seen Boo have IVs, blood draws, deep suction for RSV, Xrays, Upper GIs, etc.  But this was the worst so far.  He had to have around 60 sensors put on him with this cement-type stuff, all over his body, including his face and head. The even had to wrap most of his face up to keep the sensors in place- he looked like a mummy.  He cried through a lot of it.  And then the sensors were attached to wires- totally uncomfortable for anyone to sleep.  I was supposed to sleep in the bed on the other side of the room and not mess with him once.  My husband wasn't allowed to come- just one adult.  So we settled in for the night, but I didn't sleep much at all.  He did his typical waking up, and I tried to leave him alone, but his wailing made me pick him up several times.  It was fascinating at the same time because they monitored his breathing, heart rate, movement, brain function/sleep stages, noises, everything all night long.  And when it was morning, we had to remove the sensors- twice as bad as getting them on- and give him a bath to get all the rest of the cement off.  I describe all of this hear because I want you to know what a sleep study is like in case you ever have one.  It was not fun.

The nurse who'd been with us all night said she couldn't give me any real diagnosis, but she was shocked how many limb movements he had during his "sleep" phase.  She couldn't remember having one quite as bad.

So we drove home and waited.  It took about 2 weeks for results.  And when they called, they had a diagnosis: Periodic Limb Movement Disorder.  PLMD.   You can read more about PLMD here.   Basically it is the name for what I described- uncontrolled limb movements happening during sleep that may or may not wake someone up, but do result in fragmented sleep and other problems.

The cause is not known, but the treatment was easy: iron supplements.  Apparently there is a correlation between low ferritin (long term iron storage) in the brain and PLMD.  Something about Boo's little tummy did not properly absorb iron.  Stay with me...this is going somewhere....
Boo around the time of his PLMD diagnosis

We call the day we got this news "Diagnosis Day." And we still celebrate.  I was so happy that someone found a reason for what we were going through.

We started him on iron supplements, and were told it would probably take months for the iron to ramp up.  Maybe 6 months.  It ended up taking longer, but he did improve little by little.

At some point in this craziness, we switched GI doctors.  His 2nd GI specialist was a young mom, much like me, and she changed his medication right away.  She asked me to trust her.  I did. And she was right.  Even though he'd been happy on Nexium, switching back to Prilosec made him even happier and more comfortable.  It was all about the right dose at the right time of day.

One thing our new GI doc said really hit me.  We had to give his iron supplement at a time that was not near his Prilosec dose.  Iron needs an acidic environment to absorb.  When you use reflux meds, especially the class that Nexium and Prilosec are, the stomach becomes very basic- the opposite of acidic.  That's the job of those medicines.  But no acid, no iron absorption.

I am not a doctor. I have never done a research study.

But it clicked for me:  Boo had a messed up stomach, we gave him meds to shut off the acid, iron could not absorb.  Babies have iron stored for about 6 months after birth- after that they are still usually fine to get it from breastmilk, rice cereal, etc.  But if your stomach has an environment that has no acid, (we always gave his meds before eating, of course) absorbing and storing that iron is more difficult.

It totally seems like giving Boo reflux meds affected his ability to absorb iron.  Which led to him completely depleting his ferritin storage, which led to PLMD.

I wish someone would do a study on this.  I wish I could sit down with a doctor who cared about connecting dots like this.  If you know someone like that, please let me know.  I would've given him iron all along had I known.

I'll finish up the PLMD part of this and tell you that we eventually had to switch from the typical iron supplement (liquid ferrous sulfate) to something called Carbonal Iron.  This iron is carbon-based, making absorption even easier.  The bad news was it took till he was 2 1/2 to "cure" this.  The first night he slept all night was Memorial Day at my in-laws house.  I thought it was a fluke. But he did it then and he's kept doing it ever since.  (Other than waking up to puke sometimes, but that's another story...).  He still takes the Carbonal Iron.  He's still on Prilosec, so we figure it's a good idea.  And he has blood tests frequently to check his levels.
My shopping  buddy.  

*********BEFORE YOU RUN OFF AND GIVE YOUR BABY IRON SUPPLEMENTS******** Do not do this without talking to your doctor.  Iron is one of the most common poisoners of children- and it's the leading cause of poisoning deaths in children under 5. We keep ours in a child-proof box at the top of a kitchen cabinet.  I am very serious. Talk to a doctor and only give the recommended dose- never more.

I think I said this would be a two-part story, but I still haven't wrapped it up.  Hang in there for one more chapter.
My two adorable boys- ring bearer's for their aunt's wedding.  Be still my heart.