It’s a very early February morning. The temperature outside is too low to mention and the sun is shining on about 12″ of snow that surrounds my home. I’m sitting at the kitchen table listening to the sound of a heartbeat generated by the Graco swing next to me as my two month old son, Joshua, struggles to find peaceful sleep and work on today’s bowel movement. That’s right…bowel movement. I must also point out the word “movement” is singular and not plural. With frustration dripping from my typing fingertips – let me tell you the journey we have been on so far…
Born November 28, 2014 after 14 hours of labor, 3 hours of pushing and one very welcomed c-section – Joshua Henry Lupu entered this world at 8lbs and 19.4″ long. He was perfect! Every part of his little body was beautiful and wonderful. The first few nights he barely made a sound – we couldn’t believe how peaceful he was. And then it started…his inability to sleep without waking from attempts to pass gas, his arched back and screams as he tried to eat, and his total unhappiness every other part of the day from GI pain we didn’t know he was having.
The first pediatrician said his GI struggles were normal. He stated that newborns passing gas can look like an ordeal but is really not as bad as it seems. I mentioned that the milk protein allergy runs in both mine and my husband’s families. He stated there was no visible blood in Joshua’s stool – so the allergy wasn’t present. So, I took him home and reluctantly accepted that his excessive crying was normal. Before you mentally chastise my complacent acceptance of this doctor’s diagnosis – I only let Joshua continue on in this manner about 24 hours before I found a new pediatrician 🙂
At this point, we had tried Similac Organic formula, switched to Similac Sensitive and landed on Nutramigen which seemed to make a significant difference. All of a sudden Joshua was able to poop – in fact he was pooping 3-4 times a day! Additionally, the new pediatrician diagnosed him with acid reflux and prescribed Zantac.
Three weeks later, I was surprised to be holding a baby who still arched his back in pain while eating, never seemed to smile and couldn’t sleep peacefully in my arms. I called the pediatrician…Prevacid was added to his prescription line-up (note this is not a medication you can have called in same day – it has to be specially compounded by the pharmacist). Apparently, it’s common for infants to need both medications to treat reflux and GERD, but they like to start with one first. Just in case the list got longer than you could keep up with, Joshua was now taking:
- Nutramigen formula
- Zantac every 8 hours
- Prevacid once a day
- Oh yeah – he had thrush so we can throw Nystatin in there too!
Still no improvement…in fact, late one night while changing his diaper, I noticed a small trace of blood in his stool. I called the pediatrician…he was referred to a pediatric gastroenterologist at the University of Michigan’s C.S. Mott Children’s Hospital in Ann Arbor, MI (note the hospital couldn’t get him in for two weeks – I had the pediatrician call and he got a next day appointment). While there, Joshua happened to have a bowel movement so a stool culture was able to be taken which showed hidden blood. This was an indication of infant ulcerative colitis due to a milk (also sometimes soy and egg) protein allergy (reminder! – I had previously mentioned this to the first pediatrician). Joshua was switched from Nutramigen to a hypoallergenic formula called EleCare which uses amino acids as its protein source instead of the milk-derived whey protein found in other formulas.
Almost immediately we noticed a difference!
He began to smile!!!!!!!!
He began to laugh!!!!!
His moments awake were no longer filled with tears – and he actually began to let me put him down (he would only stay calm in my arms prior to EleCare). I finally felt we had reached a resolution and my baby boy would begin to spend his days pain-free.
We were told to give EleCare a good two weeks before his bowel movements would regulate and his temperament would calm down (note the milk protein can stay in the GI system for up to a month before the body is totally rid of it). Unfortunately, he reached his three week mark yesterday and has begun a downward turn…
…his bowel movements never regulated – in fact he went from 3-4 poops a day to one every other day. He has to push very hard for a small amount to come out (liquid in texture) and still struggles with painful gas.
I called the pediatrician…I am waiting for what happens next.
As of today, Joshua is thriving – he continues to gain weight and to grow in length. He smiles more and coo’s often. But he doesn’t have a day without some pain. His medication list is as follows:
- EleCare for Infants formula (you don’t have to get a prescription for this, you can have your pharmacist order it for you or buy direct from the manufacturer)
- Zantac twice a day
- Prevacid once a day
- Nystain (he still has that stubborn thrush)
2/19/2015 Update on
We took Joshua back to C.S. Mott’s Children’s Hospital for a follow up visit. We learned that his intestines have healed and are no longer bleeding. We were so glad to hear this we almost jumped at the doctor’s office. We also learned he is dealing with infant dyschezia, which basically means he strains and cries before he has a bowel movement or passes gas. Basically, he needs to learn how to coordinate bearing down to push out gas or stool while relaxing his pelvic muscles to allow them to exit his body. This seems to be a normal developmental issue with infants and we are looking forward to him growing out of it:-)