The Life of a MSPI and Reflux Mommy!

So as we round the corner from our journey of MSPI and reflux, I can't help but feel so grateful that we only had to live through 8 months of this!  Dawson's case in comparison to many families has been on the mild side of things.  I have met many women who have MSPI and reflux babies through a support group that I was invited to by an online friend.  It has been so nice to chat with women who could totally relate to what I was feeling and dealing with.  After hearing many of their stories, I decided that I would share some on my blog to show what these babies and mommies deal with on a daily basis.(Yes, I got their permission)

  As a first time mom, I had NO CLUE that these issues even really existed.  I was in NO WAY prepared for the trial and error process that went along with reflux and MSPI.  After being on the MSPI diet for 7 months I can say it was beyond draining on me physically and emotionally.  Not only was the diet frustrating, but knowing my milk fat wasn't enough to hold my baby was so sad for me!  Reflux meds weren't too terrible for our situation.  We really only had to try two different medications to get under control and for that I am super grateful! Dawson is finally being weaned off of his medicine and seems to be taking to dairy and soy fine so far.  I could not be happier that this phase of his life is over.  I am sad that many months of his infancy was spent in frustration of "what if I ate dairy"..."is he refluxing?"...."why won't he eat?"...."why does his tummy ALWAYS hurt?"... Hopefully this post will help someone somewhere!  I wish that I had been educated on MSPI and Reflux before Dawson was born so that I would have known what was going on before questioning myself as a mom and questioning my baby! 



“During the third week Millie began to show a lot of frustration. She’d lose the latch, squirm, cry, get frustrated…you name it, she did it. It seemed like she just wanted nothing to do with feeding. I decided it was time to pump. She took to bottles very easily but as a result she became SOOOOO GASSY. And, by gassy I mean like so much air in her belly that she would scream. She screamed so hard that it would send shivers down your spine. I kept pumping and bottle feeding and the cycle would repeat. My day basically was: Feed, burp, baby scream for an hour, feed, burp, baby scream for an hour…
Throw in some barf and there you have it, my life.  You get it, right? Baby screams after feeds, etc.? Possible milk allergy. Avoid dairy.
Possible reflux. Get meds …(.Turns out a tongue tie can cause all of these issues as it did in Millie)

I am trying to move past them although I can’t help but feel robbed. I feel robbed of the first three very precious months of bonding I was supposed to share with my Millie. I feel like my mommy gut told me something was really wrong but my process oriented brain and my trust in medical professionals lead me to go against what my gut was telling me. I feel like breastfeeding wasn’t successful because of this and had it been caught sooner I wouldn’t have held onto the mommy guilt I still have.

I hope in reading this, whether you’re advocating for yourself, a friend, a family member, or your child, that you push and push and push until you feel like you can’t push anymore. Then, take a deep breath and push MORE!”   -M. Sleeper

“So after what seemed like 2 weeks of non-stop screaming I finally took my little man to the doctor.
 "Well Joanna, from what you are describing it sounds like he has acid reflux!" I thought, well what the heck is acid reflux?
Made me think of the Flux Capacitor from the movie Back To The Future. The doctor prescribed some Zantac and sent me on my way!
No instructions, no information, and said "Good Luck". Luck ? What the heck do I need luck for?

Well little did I know my world was about to turn upside down!
I researched and did my own FBI type investigating to find out how to "fix" him.
What seemed like months of trialing new medication, a new pediatrician, and even seeing a GI specialist, (who is NOT helpful at all) we are finally settling in to our "new normal".
 He may not be perfect, but he is perfect to me!”

-J. Teft

                “I have plenty of experience with MSPI children. My first three girls all had varying levels of the MSPI. My fourth little girl had MSPI, but then started projectile vomiting. I was introduced to acid reflux. Luckily she was controlled with Prevacid. Once she started solids we finally understood the extent of her protein intolerances. After months of stress, screaming, crying, and worry we finally had our daughter’s diet figured out. She is milk, gluten, and rice intolerant. She was 16 months when we found the right diet, it took until she was 2 for her to not need Prevacid anymore.

                We were blessed with our fifth child, first boy, in the summer of 2013. I knew he would be MSPI because of my other children. I started practicing the MSPI diet 3 months before he was born so that he wouldn’t be exposed to the protein during the last trimester in utero. Unfortunately at 2 weeks of age, milk started dripping out his nose when he was nursing, I knew I had a reflux baby. Then he had a gas fit causing him to scream for hours, he had reacted to some protein in my milk. The doctor put him on Prevacid immediately, and I started the total elimination diet. The total elimination diet consisted of turkey, potatoes, and pears, nothing else. This lasted for 3 weeks, baby continued to grunt and push at gas for hours every day and still had mucous in his poops. Meanwhile I was falling apart, I had no idea if I was hungry or if my stomach hurt from the limited diet. I lost 30 lbs in 3 weeks. Finally, baby stopped sleeping, no naps, no crying just staring. He was 5 weeks old! The doctor gave me a sample of the formula neocate, a special elemental formula that has only amino acids, no proteins for a baby to react. I nursed my baby and 15 minutes later decided to try the formula, he guzzled 2 ounces and immediately fell asleep. I cried! When I pumped my milk was so thin it didn’t even stick to the sides of the bottle. My baby was starving because my milk was too thin. It was best for him, and me, to move him to neocate. I nursed 4 babies for over a year, to move my last son to formula was devastating. Still makes me teary that I can’t nurse my baby boy. I just hope he knows that I love him so much, that I stopped nursing for him.  

                Unfortunately his reflux had just started to rear its ugly head. He began going stiff in my arms, and then he would stop breathing, when I jerked him up he would choke, sputter and scream. The doctor was alarmed; his meds were changed to Prilosec. He would have these episodes multiple times a week, most often on the Prilosec itself. He would choke on his bottle and his own spit up at almost every feeding. The meds were increased several times. Finally, the doctor ordered an upper gi to make sure there was nothing else going on. It came back clear. He was around 4 months when we moved back to Prevacid.

                He is now 8 months old. It has been over 3 weeks since he was able to finish a 4 oz bottle awake. We have learned how to feed him while he is sleeping, to get the right nutrients in him. He has learned to refuse solids and his bottle to avoid the reflux burn. His food refusal is getting stronger and coming to a head. Now our plan is a strong med to coat his throat and protect it while it heals from the acid burning it. Hopefully this will eliminate the pain associated with eating and he will be willing to eat again. The doctors think that my baby’s throat is so burnt from the acid that he won’t eat, my baby!, my poor baby! We are hoping it is that or it is behavioral, he has learned that eating causes pain so he eats the minimum amount to avoid pain, this will be much harder to fix. Others things can be wrong but I won’t go there, for my sanity. His and our wild ride are not over, actually it is worse than ever. Luckily I do know there is an end but the ride is so horrific all I can think about is getting off! I pray for the end soon. “

-M. Waite

These are only a few stories of MANY!  If you are pregnant or have an infant that is struggling with any of these issues...know that it may be more than "COLIC".  Also, know that your baby isn't just "cranky" and that they really cannot help the way they are feeling.  I know for me I would get so frustrated at first thinking I had a "fussy" baby.  Once we figured out the meds and diet...he became my sweet Dawson!  Hang in there MSPI /Reflux mommies!!!