Our Journey with Formula Intolerances

 

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Personal disclaimer: I am in no way giving medical advice on formula intolerances, reflux or milk and soy protein allergies … just a mamma that has struggled through formula intolerances three separate times here to let you know there is an end in sight! Also, I’m an over-sharer of info because it’s all I wanted/needed in this journey of mine so bear with me … there is some really valuable information here. 

Formula intolerances. They were once going to be the death of me.

Have you ever witnessed a perfectly happy, calm, steady sleeping newborn go straight to crying all day, restless, and agitated overnight? It’s an incredibly sad thing to experience. And for a brand new mom, it can be such a trying time. I’ve experienced not one, but all three of my babies with formula intolerances and know first hand how confusing it all can be. I’m here today (and as excited as ever) to share with you what our struggles were and what I learned through it all. Good news is, there’s a happy ending! One that I’m hoping to help anyone in my shoes get to as soon as possible.

Know the Signs.

The toughest part of it all is that babies can’t talk. They can’t tell us what hurts and why. It’s up to us to put the pieces together and figure out how to get things right for them. Below I’ve listed every one we experienced in full detail. Know that your baby doesn’t have to have every single one of these signs or symptoms to deem “something wrong,” every baby is different as well as every formula. I’ll touch on that soon!

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A special thanks to Katie with KVR Photography for providing this perfect image!

Crying – Sure, all babies fuss … but there is a difference. Did you know that babies have different types of cries? They do! In this case, your babies’ cry is going to be what I call a tight cry. They will tense up, bringing their knees towards their belly and almost “mad cry” (as I like to call it) with a tense face, wrinkling of the forehead. It likely won’t ever get better either. It will start off looking like Colic or you may even chalk it up to a growth spurt like I did SO many times, but you’ll soon notice that something isn’t right. The “fussing” never eases and the only thing to console them is another bottle or you bouncing them to sleep. And in all honesty, it got to the point with Matty that Mamma’s arms and a warm bottle didn’t even do the trick.

Rashes – There are a few that we experienced, each baby had something different. With Kade, he developed a light red rash all over his belly. It looked like tiny little red dots all over, but nothing too major compared to the rashes Matty had. Matty started with a rash on his bottom that even the strongest of diaper cream couldn’t touch and then developed what looked like a yeast infection in the crease of his legs by his groin that the prescription the doctor gave us didn’t touch. He then got a really bad rash all over his face. What started out as a few red bumps (we thought was baby acne) then red flaky patches (we thought was Eczema) turned into a full face rash. Red, flaky, rough skin all over his sweet little face. The most flaky being in his ears, on his eyebrows, and even his hairline (we thought was a bad case of cradle cap). Funny thing is, I honestly thought that was just going to be Matty … my one and only with skin issues but that wasn’t at all the case.

Spitting Up – Like crying, all babies spit up but there’s a time when it just isn’t normal. We have experienced a normal-to-us spit up with Kade, spitting about a tablespoon right after every feeding all the way to dangerous spit up habits with Kellan. I’m talking projectile spits immediately following feedings and it being pretty much every ounce he took, failure to gain weight (dropping it in fact). Spit up symptoms can be the most confusing, especially if it seems to be a normal amount like with Kade or even no spitting at all like it was with Matty. Know that spitting up doesn’t necessarily mean there is a formula issue but then again there absolutely could be. BUT if your baby is projectile vomiting or spitting up call your doctor asap, there could be another underlying problem more severe than a formula intolerance.

Stools – This to me is one of the biggest warnings. Stools are stools, they are pretty basic for almost every newborn. BUT when there is constant diarrhea, bloody stools or mucus-like stools, call your doctor as soon as possible. The risk of dehydration is way too high with constant diarrhea and blood in the stools is not ok.

*If you still aren’t sure that your baby has an intolerance or are uncertain of symptoms, check out this link to get a quick rundown of all symptoms associated with a formula allergy. I am the first to say it can all be so confusing and there are many times that you’ll doubt yourself. This list is a great tool on deciding when to go to the doctor.

Know that no two babies are the same.  

Having experienced formula intolerances with all three of mine, I’d say the hardest part of figuring it out was that each of them had completely different symptoms from the other. To give you an idea…

  • Kade – “normal” spit ups after every feeding, light red rash all over belly, loose mucus-like stools, no constant crying.
  • Kellan – projectile spit ups after every feeding, normal stools, no rashes, constant irritability and fussing (wouldn’t settle down for anything).
  • Matty – no spit ups, red flaky rash all over (got to the point that his entire face was scaly and inflamed), mucus-like stools, constant fussing.

…as you can see, they pretty much had no two symptoms that matched. I’ll add right here too, that family history plays a part. Per their pediatrician, if a sibling has a formula intolerance, there is a higher chance the others will too.

Trial and error.

What do you do when you suspect a formula intolerance, aside from call your doctor? Get moving to a new formula.

Let me preface this part by saying that no two formulas are the same. No two brands are the same. No matter what one is in comparison to the other … they. are. not. the. same. From experience, SO much experience I know this.

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I feel like everyone has a preference with formulas as with diaper brands. Some are Pampers people and some are Huggies people, it’s just what they prefer. Formula tends to be the same. We are Enfamil people, so once I suspected that something might not be right with Kade’s formula, I swapped to the next in line sensitivity-wise. Remember that frequent spit up after every meal I mentioned earlier? Well our pediatrician thought it may be reflux, so we swapped from Enfamil Newborn to Enfamil AR. It helped, for like a week. Then the spit up came back and the rash was even worse and the constant fussing started. Kade was still thriving and gaining weight so we were kind of stuck in limbo. There didn’t seem to be a need for any tests or anything; it was just chalked up that he was just a fussy baby. I made one last doctor’s appointment because something just didn’t seem right. After a friend suggested that ProSobee did the trick for them, I asked for a sample from our doctor with very little hope that it’d do the trick, went home and gave him a bottle. It was seriously like a light went off. Kade went from fussing and miserable, spitting up after every feeding to happy. He was content, he was full, he was FINALLY happy.

Next came Kellan. With Kellan, I knew he had reflux from the moment he was born. I had done enough obsessing on WebMD with Kade to know the symptoms and I knew for sure he had reflux. So, when Kellan never gained weight and consistently lost it in his first two weeks of life I knew he had severe reflux. I was breastfeeding at the time. He wouldn’t latch (a typical problem with reflux babies) because he was constantly refluxing. I exclusively pumped for those first two weeks. He ate, then he spit it all up … for two weeks straight. After about a doctor’s visit a day for those two weeks we ended up on Zantac and it helped, kind of. It reduced the amount of spitting up; he went from projectile to a little less projectile. I thought that maybe, just maybe it may be my milk. After our doctor assured me it was highly unlikely that I was the problem the mucus-like stools with blood started. I knew then that it wasn’t just reflux it was something inside of his stomach. I made the decision to stop pumping and to put him on ProSobee because it worked for Kade … nothing. After asking for advice from some mammas on Facebook, I decided to go a different route … and this is when we went from being an Enfamil family to a Similac family. I gave Similac Alimentum a shot and like before a light magically came on. Within one single feeding Kellan went from spitting everything up to holding it all down. Over the next few days the stools improved tremendously and he was happy, FINALLY he was happy. Kellan ended up with a diagnosis of severe reflux and MSPI (milk soy protein intolerance). He also ended up gaining that weight back.

Lastly, Matty. This is where things get odd and so confusing. We decided with Matty that because of my previous supply issues and our never-at-home-lifestyle that breastfeeding wasn’t the right fit, so we decided to go the formula route from day one. Resorting back to my Enfamil roots, we started him on Enfamil Newborn — amazing. He was eating well, no spitting, no upset stomach, nothing. It was all so great — for about two weeks. This is when I learned that intolerances can develop over time. That they won’t be evident instantly. Matty started out with small red spots on his face that we thought were just skin issues which eventually led to an all-over inflamed red rash on his whole face. Along with the fact that he was a good sleeping, rarely fussy baby and had changed to a not-so-good sleeping, constantly fussing baby by the time this rash was in full force, something was not right and I knew it. While this all developed, we knew what was in our cards and tried Enfamil GentleEase when the fussiness started thinking it was just an upset tummy or Colic. When the fussing didn’t stop we tried ProSobee, Alimentum and still nothing. After a week, I learned (from all that symptom searching on the internet) that no two formulas are the same. Never would I have thought that the equivalent to Similac’s Alimentum in Enfamil would make any difference, but it did. I made the decision to give the crazy expensive Nutramigen a shot and as in the past, that little light bulb came on. In a week’s time his red, swollen scaly face was back to normal. I hadn’t realized how un-normal that was until it was gone. He was FINALLY happy.

Now that you’ve read through all of those crazy long journeys, I have one last bit of info. Keep reading because it is a total money saver!

Insurance Coverage. Do you know how crazy expensive some of those specialized formulas are? All three that mine ended up on were between $25 and $30 a can. A CAN?! It’s crazy. And if you’re like me and have an eater on your hands you know how taxing it is on your budget when a baby goes through one can every 1.5 days. Honestly, it’s a financial burden no matter how quick your babe goes through it.

But did you also know that some insurances cover these special formulas? YES! Come to find out, my obsessive searching and reading through support groups and blogs led me to calling my insurance company to find out if there was a chance they’d cover it. After a quick call to Humana I found out they actually did! It’s not common knowledge. In fact, it’s so unknown that my pediatrician scratched his head when I asked for a prescription of Alimentum and the pharmacy took months to get the hang of it but they did!

Aren’t sure if your insurance would cover it? Or maybe phone calls aren’t your thing? Do the math. Matty’s formula costs right at $30 a can and we go through 17 cans a month. That’s $510 a month we would be spending in JUST formula. I have walked out of our pharmacy month after month with $510 worth of formula and only spent a $50 copay feeling like I had won at life. Make the call; it’s worth at least trying.

And lastly, trust your gut. If you suspect something isn’t right, act on it. Try formula after formula, doctor’s appointment after doctor’s appointment until you get an answer. No baby should have to go through a pain for which they are unable to communicate.

Have a question about intolerances, MSPI (milk soy protein intolerance), formulas or anything in-between? Hit me with it!  I’m here to help any mamma in my shoes! The least we can do is be supportive of each other and help get answers!

 

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