Dear Reader, Our MSPI--acid reflux--hurting baby story...

Like most moms, when I had a premature baby who started having health issues, I obsessively researched on the Internet.  Reading other people's stories sometimes provided insight and sometimes freaked me out.  Thought I'd share my story to "pay it forward" for all the helpful stories I read.  Warning:  it's long...

Bo was born 6 weeks early.   He’s 6 months old now, and it has been a roller coaster (and when I say roller coaster, I’m referring to the kind that jerks you around and has dramatic highs and lows, not the friendly little kiddie roller coaster).  

For 6 weeks, Bo was the best baby.  My mom (grandmother to 10) would even comment on how lucky we were to have such a good baby.  I've been told I was a horrible baby so I really could not get over our good fortune.  

The honeymoon was over after 6 weeks.

We learned about Bo’s MSPI because he started having “spells” (that’s what we'd call them) where he was shrieking uncontrollably---absolutely inconsolable.  At first, these only occurred when he would go to the bathroom.  I mentioned this casually to the Pedi at his 6 week appointment, and she asked me to bring in a dirty diaper (we have a wonderful, proactive Pedi).  I did, and voila…the roller coaster started.  I was nursing (a roller coaster all its own) so she had me eliminate all obvious dairy (milk, cheese, yogurt, etc.) from my diet.  She warned me it could take 2 weeks to get the dairy out of his system.  I did so faithfully for 2 weeks.  During that time, I really saw no changes in Bo.  If anything, the frequency of his spells increased.  They happened intermittently during the day…without rhyme or reason.  Everyone kept telling me…”oh, it's colic”, but he did not have a predictable fussy time.  He was just…well, "fussy" a lot of the time.  Truth be told, the word fussy would infuriate me (still does).  He was hurting a lot of the time.  He would yell and claw at us like “help me”.  It was heartbreaking.

We could never burp Bo well enough.  He might burp hugely, but there would always be another one lingering.  He spit up, but not in alarming quantities.  He squirmed a lot.  He passed gas a lot (and it smelled wretched, which I was told is because what his body couldn’t digest would just ferment in his little body, causing horrible, foul smelling gas).  It was as if he just could not get comfortable.  Sleep evaded him.  He couldn’t get comfortable enough to sleep.  There was always a burp that needed to get out, or a toot that was bothering him.  He cried each time he passed gas.  We were told it was because his colon was raw from allergic colitis, caused by the MSPI.  The only way he would sleep was on us, so long as we were sitting up.  We had to reposition him constantly because he just couldn’t get comfortable.  We spent countless nights in recliners or propped up in bed with him.  We wondered if we would ever sleep in a horizontal position again.

They diagnosed him with acid reflux as well and put him on Zantac.  This really did nothing for him.  After the 2 weeks of eliminating obvious dairy didn't spark any improvements in Bo, the Pedi had me eliminate all dairy (including hidden sources).  I mercilessly researched MSPI and how to identify hidden dairy/soy ingredients.  I followed the diet as closely as I could and continued nursing.  Bo continued to hurt, cry, and not sleep.  Nursing was a nightmare.  He would pull off screaming then get right back on—almost as if he knew what he was drinking would hurt him (what I would call "woodpecker nursing").  I dreaded feeding him.  Feeding him seemed to be where all the problems started.  I would feed him, then work for 2 hours to get all the burps/gas out of him (he would still be burping 2 hours later).  By the time he would seem settled, it would be time to eat again (he generally ate on a 3 hour schedule).  It was exhausting.  We started calling my milk “the potion”, and dreading giving him “the potion”, for we knew it would bring Mr. Hyde forth.

After I eliminated all hidden sources of dairy and soy, Bo generally stayed the same.  I went to my sister’s when he was 10 weeks old, and one night he stayed up shrieking and clawing at me all night.  Even my sis couldn’t console him (she has 3 kids and is a “baby whisperer” to me so I felt like this was huge).  Sadly, this was affirming for me.  I kept thinking it was something I was doing/not doing.  But her inability to help him either at least affirmed to me that it wasn’t just me.  I was so beat down by not being able to help him.

I came home and called the Pedi.  She told me to put him on a trial of Nutramigen (a hydrolyzed formula—still has milk proteins but they’re predigested so supposed to be easier for MSPI babies to digest).  I have since learned that 97% of MSPI babies do well on these types of formulas (Nutramigen and Alimentum are the 2 brands).  I was discouraged about the possibility of not nursing, but Bo was miserable, and I was desperate to get him relief.  I pumped while he tried the Nutramigen.  It stunk to high heaven (this seems random, but seriously, it is the worst smell…I can’t forget it!).  He was on it 48 hours when he started screaming uncontrollably for 24 hours.  In 24 hours, the longest stretch of sleep he had was 30 minutes.  I am not exaggerating.  It was awful.  I thought I would go crazy.  My mom came and helped calm him (and me!)  until I could get in to see the Pedi.  Apparently, Bo was in the 3% who could not handle hydrolyzed formulas.  I now know that on the “reactivity scale” (from least to most), it’s elemental formula, dairy/soy free breastmilk, "tainted" breastmilk, hydrolyzed formula, regular formula.  If my tainted breastmilk wasn’t working, there’s no reason to think the hydrolyzed would, but I didn’t know that then.

Back to the Pedi’s office I went…hysterical.  I can’t believe she kept us as patients.  I brought my  mother with me so I “didn’t look so hysterical”.  I just knew she’d think I was a crazy first time mom.  My  mother has 4 children and 10 grandchildren and seriously kept saying she’d never seen a baby act like Bo so I felt like she lent me a little credibility.  I needn’t have worried; the Pedi was so understanding.  In fact, she even teared up in her office with me that day.  The Pedi referred us to a pediatric gastroenterologist (Pedi GI) in Lubbock.  Because Bo just seemed to get worse no matter what we tried, she took him off all meds, and I went back to nursing Bo and stayed dairy/soy free.

We went to see the Pedi GI and were told he was confident Bo had MSPI, but he wanted to rule out a kink in his intestines or anything anatomical so he ordered an Upper GI and small bowel series.  Nothing appeared out of order with these tests.  We were given an elemental formula (Nutramigen AA, but there are 2 other types as well:  Neocate and Elecare.  Elemental formulas are amino acid based…absolutely no proteins in them to which a baby can react).   We were told we would see some improvement in 3 days, and in 2 weeks he would be “as good as he would get” if it was MSPI.  I kept asking, how do we know if it’s MSPI?  I felt like Bo was a guinea pig.  The Pedi GI assured us that if it was, he would improve on this formula.  He also switched Bo to Prevacid for the reflux (7.5mg per day, then after a couple of weeks 15mg per day).  For the first 4 days, Bo improved somewhat.  I was so excited.  Relief for my baby!  But in true Bo fashion, he got worse again.  (He seemed to improve briefly then get even worse, no matter what we tried.)  At the end of 2 weeks, he was the same as when we started.   

The Pedi GI said I could go back to nursing if I felt he hadn’t improved; I had pumped through the 2 week elemental trial in hopes that I could continue to nurse if he didn’t improve.  My supply had dwindled terribly, but I was determined to get it back (got a prescription for Reglan, pumped and nursed like crazy, and got it back).  The Pedi GI wanted to run more tests…a lot of which were invasive, and we just weren’t comfortable putting him under anesthesia so young.  He basically said he didn’t know what he was treating him for anymore and wasn’t very helpful after that.  Bo was about 3 months then.  I went back to work at this time.  I went back to nursing him and staying dairy/soy free.  Bo’s temperament improved, but he was still very unpredictable.  He would have 1-2 bad spells a day.  He still had terrible sleeping habits.  He would now sleep in his bed, but would awaken shrieking with gas pains (crying when tooting, spitting up, burping).  We were desperate for sleep.  The period from 8-12 weeks was the worst 4 weeks of my life.

A friend at my office whose daughter had reflux told me about the Nap Nanny (www.napnanny.com).  His ENT in Dallas got them one.  They now are sold retail, and I ordered one.  Bo started getting more rest.  He would now sleep in between feedings (for the most part).  We were thrilled for some rest.  This was when Bo was between months 3-4. 

I really thought we had this thing licked.  Bo had come a long way.  Bo was on Prevacid, using the Nap Nanny, and I was dairy/soy free and nursing him (supplementing with an elemental formula when necessary).  Month 4-5 was a good month.  He was down to about 1 spell a day, up 1-2 times to eat during the night and sleeping between feedings.  Hallelujah! 

Then he turned 5 months old.  And all hell broke loose…again.  The next 4 weeks were the second worst 4 weeks of my life.  He would have horrendous spells during the day.  Our nanny (who has children of her own and has nannied for other families ) would call and not know what to do with him (if she didn’t know what to do…what the heck was I supposed to do??).  Every feeding became a challenge.  He screamed and pulled off nursing.  He would only nurse for a few minutes or so before becoming hysterical.  He started doing this with bottles, too (when I was at work).  The only decent feed he had was in the middle of the night when he was groggy.  Otherwise, feeding was a nightmare.  A complete nightmare.  I was so beaten up by this point that I quit nursing.  Every time I fed him, he screamed like I was torturing him.  My nerves and emotions were shot.  SHOT.  I made it 5.5 months nursing. 

He stopped sleeping at night at that time, too.  He was up every 1-2 hours hysterical.  There was no calming him.  My parents came and took night shifts so we could get some rest and function at work.  (I really don't know how people do it without help.)  I went back to the Pedi, desperate again.  She and the Pedi GI consulted and decided he was allergic to something else in my diet that we couldn’t isolate (I learned that they call it MSPI because the milk and soy proteins are most commonly what babies react to, but it could be the proteins in virtually anything).  Bo was put exclusively on the elemental formula, and an upper and lower scope were ordered to assess the damage to his esophagus from the reflux (which they reasoned was the cause of his painful feedings) and to biopsy for allergy cells (which they also thought could be irritating his esophagus).  He was still uncomfortable and gassy.  He could not sleep from all the gas.  When we would get him up from his crib when he was hysterical, he would burp or toot.  The gas made him miserable--always flopping and moving, trying to get comfortable. 

Bo did well with the scopes.  If I could do anything differently, I would have done these sooner.  We were so freaked out about him getting anesthesia that we wouldn’t let them do it sooner.  I wish we would have decided differently.  The scopes showed no damage to his esophagus and no allergy cells.  The Pedi GI reasoned that it’s because the elemental formula was already treating the MSPI and had eliminated the allergy cells.  2 weeks on the elemental formula though, and I still couldn’t see a change in Bo.  He was still miserable, having horrible feeds and gassy, and we were individually, and as a couple, hanging on by a thread.  We went back to the Pedi for a referral to a different Pedi GI.  We took Bo off the Prevacid because he missed several doses and we saw no changes.  We stayed on the elemental formula because we didn’t know what else to do.  The Pedi worked on getting us into Cook’s Children’s Hospital in Fort Worth.

Then…4 weeks after it started, it seemed to get better.  The third week he was on the elemental formula, he went from having all but 1 horrible feeding a day, to only having 1 horrible feeding a day.  His disposition was just more comfortable.  He didn’t have as much gas.  He smiled.  He slept.  We felt like we had a "normal" baby.  We actually enjoyed our baby and weren’t at each other’s throats.  We kept saying, “this is what other people must feel like with their babies.”  It always seemed like everyone else was enjoying baby bliss, and we were just surviving and advancing to the next 24 hours. We felt so guilty because we knew we should be enjoying this beautiful baby, but at the same time…it just wasn’t very enjoyable. 

We are into his third good week now.  Bo is notorious for improving briefly then backsliding so we are still getting a referral to Cooks in case he starts having spells again.  But we are PRAYING that he just needed more time on the elemental formula, and that these improvements are here to stay.  He still always has an extra burp, spits up often, toots, and sometimes has a bad feeding, but he’s generally just more comfortable, sleeping better (or at least not in pain when he's not sleeping), and overall happier.  We are SO grateful.

In my experience, MSPI was very isolating.  Bo was so unpredictable that we rarely felt comfortable taking him anywhere or having anyone over.  I was/am always embarrassed that I can’t comfort my son that I certainly never wanted anyone else to witness it firsthand. So many well meaning people would tell us they knew what we were going through and would offer “solutions” for us.  It was so discouraging.  We really just stopped talking to people about Bo because it was so frustrating to hear “oh, he’ll grow out of it”, “yeah, my baby had colic, too” (it’s not colic!!).  Or even worse, those people with babies with no issues that would talk about their baby sleeping through the night or playing under the activity gym.  (Activity gym??  We're just trying to survive; play activities aren’t even on the radar!!)  We got so tired of either 1) feeling dismissed by other people, like we were hysterical first timers 2) judged by other people or 3) like we were complaining about our baby when we knew he was a blessing but were just sleep deprived and frustrated.

Here are some additional thoughts about our experience:

1.     If you want to keep nursing and stay dairy/soy free, I found recipes from this lady helpful:  www.mspimama.blogspot.com.  I also have the MSPI Guidebook/Cookbook.  It has good information in it (though the recipes weren’t useful to me). 

2.     Would I keep nursing again now that I know that the elemental may be the answer?  I would have done anything to provide relief to Bo.  But the first time we tried it, the elemental just didn’t make a difference.  Maybe he needed more time on it, or maybe it just didn’t work then.  I have read accounts from several moms where their baby failed the elemental trial the first time, only to have it work later.  Do I occasionally wonder if allowing him more time on the elemental formula and stopping nursing 3 months ago would have solved this back then?  You bet.  Unfortunately, there’s no way to know for sure what works.  You really have to just make a decision, go with it, and know you’re trying to do the best for your baby.  

3.     There’s a great group in the UK called Reflux Rebels.  They have a very informative site:  www.refluxrebels.com.  It has a good section on MSPI.

4.    What would I have done differently?  Had the scopes earlier.  Definitely.  They were less invasive then I thought.  He was under the gas for 5-10 minutes.  It would have ended a lot of the speculation earlier. 

6.    No one can prepare you for what hearing your baby hurt will do to you.  Desperate, obsessive researching…oh, my word.  Anything to try to help your baby. 

7.    No one can prepare you for what sleep deprivation does to you.  There’s a reason it’s a form of torture.  At one point (just 3 short weeks ago), I was seriously wondering if I needed a straight jacket.  You can’t think rationally with no sleep.  It’s impossible. 

8.    No one can prepare you for what any of this does to your marriage.  I was so excited to parent with The One.  We were married 9 years when we had Bo.  We are a fantastic team.  I couldn’t wait to team up as parents!  Oh. My. Word.  A hurting baby and sleep deprivation have brought out the worst in us. 

9.     Just a warning:  if you have to stop nursing cold turkey, there is a huge hormonal shift, just like after you have a baby.  I had no idea.  I was a MESS when I stopped nursing.  A hot mess.

10.  I loved Babywise--loved the message, loved the theory.  I read it cover to cover--even outlined it (major nerd) so I could refer to it when I was too tired postpartum.  I couldn't wait to get going with it.  But...that thing is not for babies with issues.  I have read practically every sleep training book on the market.  They all say the same thing...make sure your baby has no medical issues before sleep training.  I finally just took what nuggets I could glean from the books and stopped reading them (very hard for me, as I'm "Miss Analytical" and love a formulaic approach to everything).  But they just didn't work for us when he was hurting, and they made me feel like I was doing a bad job as a mother.  I did find that having an eating schedule and trying to implement the eat-play-sleep pattern was helpful .  But Bo didn't statistically match up to anything the book said about sleep patterns (still doesn't).  Use what you find to be useful, but don't start feeling bad about yourself if your baby doesn't match up to a "Babywise baby".