Category Archives: Total Elimination Diet

The Uncomfortable Topic of – (gasp!) – Breastfeeding a Protein Intolerant Baby

Manimal BottlesAnyone who has known me for any number of years… ehem, weeks… OK, days… can tell you I struggle with the sin of a critical spirit. For example, when the hubs and I were first married, I had a big hissy fit because he scraped the bumper of our car on the road while backing out of a steep driveway. When he did this, I was not merciful and patient, and I was downright mean – over what? A twenty-year-old car that my coworkers called the “drug-dealer car” (because it was that ugly – and cops apparently agreed, because I got pulled over all the time – even when I wasn’t breaking any laws. Ugly-car profiling, I tell ya!). Anyway, the very next day, I drove the same said car into our other car. Yup. And The Hubs was sitting right next to me in the passengers seat. And guess who was very patient and merciful. Yup, The Hubs.

And that’s how God often deals with my critical spirit. By putting me in the same situation that I had at one time judged others…

So, you’ve probably figured it out, but I used to judge mothers who had decided to stop breastfeeding – c’mon – didn’t they care about their babies to give them the very best?! I may not have said anything to their face, but I sure questioned women when they chose to formula feed – even when they had good reasons like their milk supply was low, or their baby never latched correctly. And like the old saying goes, you are the best parent you will ever be before you have children.

I was the best breast-feeder I ever was before I had a baby.

Before having Lil Z, I had researched breastfeeding, and had talked to a lot of other moms who had done it. I was excited for it. I knew it was the best thing for my baby, and I was not going to be one of those mom’s who didn’t care about my baby enough to do it (insert critical, haughty-sounding voice here).

But then Lil Z arrived, and I actually put all my research into practice. And, it didn’t go so well. Actually, that’s an understatement. Don’t listen to what the boob Nazi’s say – breastfeeding hurts. It really, really hurts, at least in the beginning. Even when you do it right – it can hurt. And that’s what happened to me.

I worked with a lovely lactation consultant, Marjie, several times, but it never stopped hurting. After several sessions, we established he was “doing” it right – latch, suck, and so on. There shouldn’t have been that much pain – but there was. Marjie suggested I see my doctor about checking for thrush, because even though I didn’t exhibit any physical signs of thrush, I had described the pain of thrush (i.e. it felt like battery acid had been poured on my… ah, chest).

So, I saw the nurse practitioner at my OBGYN’s because my doctor was on vacation. She glanced at my chest and said I didn’t have thrush, and I should just stop breastfeeding. But I was too embarrassed to tell her that I couldn’t afford formula because I was no longer working (and this was before we knew he would need a hypoallergenic formula!). I had to make this breastfeeding thing work.

So I went back to Marjie, who was livid with the nurse practitioner. Marjie advised me to call my doctor and explain the situation. A doctor in the practice prescribed a topical powder (my doc was still on vacation, apparently), which helped ease the pain and make nursing tolerable. Z went on an anti-fungal medicine also. But the pain, although lessened, continued. It persisted the entire time we breastfed – 14 months (I would have quit exactly at 12 months, but the kid kept waking at night, and wouldn’t fall back asleep no longer how long I ignored him – but that is a story for another time).

By the time Z was four or five months, I was ready to call my insurance company, or the closest WIC clinic to see if I qualified for formula assistance. But I kept reading about how some PI babies never tolerate any formula, and it scared me – Lil Z was so sensitive, that I’m fairly certain he would have bounced from formula to formula in our quest to find one that “worked.”

Saying I hated breastfeeding is putting it mildly. I loathed it. But I was trapped. So Lil Z and I continued. It was rarely sweet bonding time like I’d heard about from so many women. It was uncomfortable and painful – made even more depressing by the fact that I couldn’t eat the things I really wanted.

So by the time I had worked up the courage to even have a second child, I dreaded breastfeeding so much, that I considered putting Manimal on formula right out of the gate. But I knew that was illogical. I had to at least try. Because… well, I understood breastmilk was the best food for a baby, so who was I to rob him of that if we could make a go of it? And what if he was PI, just like Lil Z had been, and no formula worked for him?

But this time… it worked. Well, other than the fact that I had to modify my diet again. But now I knew what I was doing. I could eat sorbet if I wanted ice cream, and Enjoy Life’s chocolate when I wanted a Hershey Bar. Don’t get me wrong. I was thrown into the PIT of despair when I realized that Manimal was protein intolerant, just like Z was. But, once I got over this, and the “mourning” of my half-and-half in my coffee (it’s weird, but that is what I really missed the most), I realized that Manimal and I were having the sweet bonding moments I had never experienced with Lil Z. It wasn’t as painful, and it was much more… natural.

At eight months, to my regret, Manimal went completely on formula. I had gone back to work full-time when he was two months, but due to my weird work schedule (which resulted in random pumping and missed meals) my milk began to dry up, and I just couldn’t keep up with him. After trying to increase my supply with extra pumpings and fenugreek, Manimal resorted to biting (hard!) and it was time to transition to formula. Luckily for us, Manimal was much less sensitive than his older brother had been, and he tolerated Nutramagin.

I don’t regret continuing to breastfeed Z, even though I hated it more than a lot of things I’ve ever had to do. I know it helped him, and and he rarely was sick (other than the whole, horrible acid reflux, PI thing!). But would I breastfeed again through pain like that? Probably not…

I do regret not being able to breastfeed Manimal longer. He is a sweet baby who loves to snuggle. Nursing him was really precious bonding time, and sadly, I feel like I missed out on some sweet moments those last few months.

And I guess what I am saying to you is that breastfeeding might be really, really tough right now, especially if you can’t eat the things you want, or it hurts. And I totally get it if you want to quit – I completely understand if you do. I truly do. But if you do decide to keep breastfeeding, it may be tough, but you won’t regret it in the end. And if you decide that you are quitting, just know that I certainly won’t judge or scold you for choosing formula – because sometimes life just is what it is. And nursing a PI baby is very, very hard.

Here are some verses that helped me keep my sanity while dealing with Lil Z, his reflux and breastfeeding:

Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, “The Lord is my portion; therefore I will wait for him.” Lamentations 3:22-24

Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you. Deuteronomy 31:6

The Lord has an ultimate plan for you, your baby and your family. You simply need to ask and wait; and He will guide you in the right decision to continue or quit breastfeeding.

Fussy Baby – What I Wish I Had Known in the Beginning

When Lil Z, my firstborn came along in 2008, he hit our family like a freight train. He cried all the time, arched his back constantly, rarely slept more than 45 minutes, and never let us put him down unless it was to be jiggled in a bouncy or car seat. His diagnosis was gastroesophageal reflux disease (GERD). But no matter how much medicine they gave him, we couldn’t make our baby comfortable, and he rarely slept more than 45 minutes at a time (it didn’t matter if it was day or night).

What we later learned was Lil Z is protein intolerant and has Celiac Disease. Here is advice I wish I had gotten when Lil Z was a baby:

Painful Reflux (GERD) is not necessarily a “mechanics issue”: I heard this so many times from my son’s doctors, but unfortunately, I took their word for it for more than five months after his birth. I was breastfeeding at the time, and he ingested proteins from the food I ate, which made his GERD unbearable. I wish I had tried an Elimination Diet from the start, and I would have discovered his reflux was greatly exacerbated from several of the foods I was eating. Once I eliminated the foods from my diet, his reflux was manageable with medicine. My second son, Manimal’s reflux was only painful if I ate an offending food.

Sometimes one reflux medication doesn’t work, while another one will (we had better luck with Prevacid rather than Zantac). One doctor told us several months after putting my son on Zantac, that Prevacid works faster than Zantac, but because it is so much more expensive, a lot of health insurance companies will not pay for Prevacid until Zantac has been tried.

Mylanta helped when a really bad acid reflux “episode” would hit. When Lil Z was going through an “episode” (i.e. he would scream and arch his back for hours) we gave our son Mylanta, per our pediatrician’s OK. She gave us the exact amount to give him based on his weight and age at the time. Check with your pediatrician before giving your child any medication.

Lil Z experiencing one of his frequent "episodes" with reflux.

Lil Z experiencing one of his frequent “episodes” with reflux.

Trust your intuition: There were days (and there still are) when I know my child ingested an offending food. Or did he? No, he definitely did… no wait. I think I am crazy — he couldn’t have. But he’s acting like he’s in so much pain, but… I was so careful!

Any mom with a food sensitive-child has had that exact conversation every time their child exhibits signs of ingesting a food they shouldn’t have. Trust your gut — I feel like a mom’s intuition is rarely wrong. And try to be patient with advice from mom’s who haven’t experienced what it is like to have a baby with protein intolerance and/or reflux. They are well-meaning, but they have no idea what you are going through. Is your baby crying longer before his nap? Is his cry sounding “grinding” and guttural, like his reflux is back? You know, maybe it was teething, as I often was told, but why did it always seem to happen on days he was around other kids who were eating fish crackers? Trust your gut, and ask God to help you recognize the times your baby is feeling sick or just getting old enough to manipulate you at bedtime. It is the worst feeling to make your baby cry himself to sleep to find out later when he has a mucousy stool he was reacting to something he ingested. But realize it happens. Don’t beat yourself up too much. Just love your baby and move on.

My own mother told me that it is good for a baby to cry. I plan on doing a more in-depth article on how I got my kids to sleep through the night, which involved “crying it out.” But it is never good for a sick or in pain baby to cry it out — ever. It’s cruel. So before doing this method, make doubly sure your baby is not suffering or sick.

Once you have had your baby comfortable for a few weeks, his sleeping habits may not improve on their own. This may be because your child has conditioned himself to wake frequently. Both my boys eventually learned to sleep through the night. Stay tuned for a future post on how I made this happen.

How it all began – acid reflux, protein intolerance and possible celiac

My beautiful baby boy, “Little Z,” was born. He was perfect — 10 tiny fingers, 10 adorable toes. But something was wrong. While still at the hospital, he was spitting up a lot, was very fussy (he cried – and even SCREAMED – in his sleep!). He hiccuped constantly, and often choked on his spit up. He also had what I call “acidic puke breath.” The nurses and doctors assured me that this was normal. What did I know? I was a first-time mom.

After we took our sweet, little bundle home, his problems worsened. He ate constantly, fussed continuously, and could only be comforted while on our shoulders or if he was held on his stomach. He would eventually crash, exhausted, but would wake a short time later and the cycle would begin again. I was bone-weary.

At one of his early check ups, the doctor said that it appeared he had reflux and was prescribed Zantac. It took around six days for the medicine to finally kick in, but it only seemed to take the edge off, and the constant night waking continued. Little Z was in constant pain. I was a Zombie, and it was a rarity for me to get more than four hours of unbroken sleep a night (Little Z usually woke up every 45 minutes — all night long). I was so sleep deprived that I became an insomniac and battled depression.

I was mad at God — why had he given me this “broken baby” (yes, I yelled that at God one night). And I felt utterly evil that I resented my baby. I started to hate being a mother. I thought, “what have I gotten myself into?!” I couldn’t find good advice from anyone (a lot of it, although good intentioned, was not helpful. i.e “perhaps you should try co-sleeping with him.” BELIEVE me, if co-sleeping were the answer, I would have found that on my own).

We discovered that he would sleep the best in his swing or bouncy seat, and I kept it by my side of the bed. I would jiggle him furiously side-to-side throughout the night (to get the bobble-head affect discussed in the book, “Happiest Baby on the Block.”); however, he still woke 8-15 times a night and would scream and arch his back. He would also jam his little fingers into his mouth and claw at the back of his throat. He was in so much pain. After 5 months of watching him struggle, I was at my wits end. It hurt to watch my baby suffer through so much pain, and I was utterly exhausted from only getting 3 hours of unbroken sleep a night (if I was lucky). Also, my marriage was suffering because my husband and I didn’t see each other anymore — we spent our evenings taking turns jiggling, bouncing or patting Little Z to sleep.

No one had answers and and no one understood. After increasing and changing his reflux medication several times, the doctor said the only thing left to do next was surgically tighten his esophagus. This terrified us. I had asked in the past if his problems could be food related, but the doctors assured me that reflux is due to a “mechanical issue” and is not a food issue. However, when they started talking about surgery, I knew had to see if it was a food issue. I was breastfeeding, so I went on an Elimination Diet  (you can read about it on the Dr. Sears Web site).

I saw almost immediate results. He was happier, his acidic puke breath disappeared, and his hiccups vanished. These symptoms returned only if I accidentally ingested an offending food. His medications were able to control his reflux. He quit having diarrhea 6-15 times a day, and his adorable pot belly disappeared. He was a different baby. He wasn’t totally fussy free (because I to this day still cannot put my finger on all the foods that bother him!).

I now know he has trouble with gluten, soy, all dairy, eggs, nitrates and possibly corn, peanuts, tree nuts, MSG, food colorings, preservatives, any kind of brine (i.e. a pork in brine) and bananas. (I have never even tried introducing any kind of fish, so he may have trouble with that as well).

He was tested for allergies and Celiac disease, and they all came back negative. This is why I say he is protein intolerant. In September of 2009, we are finally going to see a Pediatric gastroenterologist to see if we can get some answers, and figure out if he truly has Celiac disease (which runs in my husband’s family).

To this day, Z is not symptom free, but life is so much better for all of us, especially Z. He continues to have diarrhea frequently (usually 3-4 times a day, but not like he was before!) and often gets yeast rashes. He seems to get sick more frequently than other children. I still can’t pin down all the foods that bother him, even though he has a very limited diet.

It has been a tough and frustrating road, but I have found strength in the Lord and have discovered a wonderful network of parents and organizations who offer great advice, tips and recipes. I hope this blog will give you much needed answers and advice if you are struggling with a baby or child with special dietary needs.