The Missing Link

“for it is God who works in you, both to will and to work for his good pleasure”

(Philippians 2:12-13).

The truth of the matter is…even if Caleb stayed on Prevacid and Nutramigen…I was never going to be at peace until I knew what was wrong with him and I am happy to say we have the last piece of the puzzle…the missing link!

“Yes!  We did it!  I feel amazing” says Caleb 🙂

I had an oversupply of breast-milk causing a lactose overload (which can be balanced by block-feeding or feeding from one breast only…which is the quickest approach but makes ya a little lopsided :))

and the missing link….

He has secondary lactose intolerance-the milk protein allergy caused damage to the small intestine wiping out his lactase enzymes so he could no longer digest lactose…and not only is breast milk chock full of it but my oversupply wreaked havoc on it!

I am posting this blog in hopes of helping someone else out there…it took us 7 weeks to put all of this together and I don’t want anyone else to unnecessarily go through this.

Caleb was classic textbook case of lactose overload (so we thought “problem solved” after we balanced it.)  But the symptoms are the same for secondary lactose intolerance and turns out…he had that too!  You can have both or one without the other.  I am disappointed that after all the PICU doctors, speech therapists, lactation consultants and a pediatrician…no one had THE answer  but God put all the right people amidst all the wrong ones.  He made Caleb and he made me his mom and he lead  me to each and every answer in some crazy ways. I should have known myyyyyy 3rd child would be the complex, mulit-fasceted one and I am simply grateful to have the answers and a pain-free baby blessing!

You cannot change the lactose in breast milk…you simply neeeeeeed the lactase enzymes (“gobblers”) in your small intestines to eat it up.

So the solution for Caleb…

A hypoallergenic formula (which are lactose-free) or a lactose free formula…

“Orrrrrrrrrr….” said Rechel “Can I give him a lactase enzyme?” (“gobblers” while his “gobblers” are healing)

“Knock yourself out you nut job!” said the doctor.

Okay maybe he didn’t say “nut job” but you know he was thinking it.


no more pain.

no more grinder sound as the milk went down.

no more….nothing.

nothing but a soft, smoochy, happy, squishy, cuddly little baby!

Soooooomeone is not quite ready for him to be well 🙂

I divide this (purest) lactase enzyme to an appropriate dosage (1/8th) and give it to him mixed in a dropper with some Gripe Water right before every feeding. He is like Pavlov’s dog now…he sees the dropper and knows it’s chow time!

I am a little worried when the D.A.R.E.  program comes to Jackson’s school and he learns about drugs…I hope he doesn’t have flash backs of mama cutting enzymes…and think the worst 🙂

I would encourage anyone with these symptoms to dig a little deeper and see if lactose overload or secondary lactose intolerance could be the diagnosis for you as well.

We are on Day 8 now but this pic was taken Day 4…oh and by the way…not only does he smile in his sleep…this boy giggles!

Caleb’s symptoms were on the extreme end of all of these so there is suspicion that all the antibiotics I received during pregnancy, labor, surgery and the two blood transfusions played a part…so I am unsure how long it will take to heal his small intestine (and if it is even possible) or if it affected his colon so he will see a gastroenterologist in a month.

Symptoms include

  • Frequent watery bowel motions (can often be green in color but not always)
  • Bowel motions often have a slightly to very offensive odor
  • Bowel motions could be frothy or ‘explosive’ (shoot out with force)
  • Bloating
  • Cramps
  • Excessive gas
  • Irritability/screaming
  • Sleeplessness or wakefulness
  • Baby appears to be constantly hungry
  • Baby gains large amounts of weight (which is not the case when a baby is lactose intolerant but is the case in secondary lactose intolerance)
  • Baby is usually less than 3 months old, but this problem can continue to the age of 5 month

It would truly be a honor to me if you need more information about any of this…so please feel free to contact me personally.

You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy,
that my heart may sing your praises and not be silent.
Lord my God, I will praise you forever.

Psalm 30:11-12


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