I’m a first-time poster, so please let me know if this should be placed elsewhere.
We feel like we’ve exhausted our options in finding out the root cause (and cure) for our 12-month-old sons condition. He has been through a battery of tests, hospital stays, seen countless doctors from across the board and the only thread of hope that we’ve been given is “hopefully he’ll grow out of it”. Sadly, he seems to be getting worse and all we can think of now is how to cope with and manage his chronic pain. In a nutshell, after a few hours of laying down every night for his entire life he wakes in screaming pain—all night (it used to be during the day as well until about 4 months, similar to extreme colic). As he’s gotten older and gained clarity from some of the tests we’ve narrowed it down to a general region, his lower GI tract. The best way to describe it is similar to a Pseudo Obstruction, where his intestines seem to kink when he lays down and relaxes—therefore gas and stool builds up and he’s unable to pass anything, causing extreme pain. Nothing seems to eliminate it once it starts; he gets some relief from getting upright, intestinal massage and nursing. We are chronically sleep deprived, surviving on a series of short naps for the past year. He is almost exclusively breast-fed since he has oral aversions and has rejected solid foods (he’s about 6 months developmentally delayed in that area). We’ve seen some progress recently with his intake of solids though since he’s currently in feeding therapy. The hypothesis there is that he knew his gut couldn’t handle solids. Thankfully he has thrived on breast milk alone and my supply has kept up.
So, my question is have you heard of this condition or have suggestions on how to help him? And, how does one even begin to manage this degree of pain, which may or may not go away, in such a young child?
Here is more background info if you have time to read.
His symptoms include: chronic constipation, abdominal pain upon lying down, extreme gas pains, bloating, food allergies, lymphoid hyperplasia, narrow rectum, eczema, anemia, slow blood clotting, GI yeast overgrowth, lack of good GI bacteria, frequent night-waking (sometimes 20 times per 12 hour period), need to eat small frequent meals, delayed acceptance of solid foods (trouble swallowing, high gag reflex, tongue movement restriction, oral aversions, wouldn’t accept bottles or pacifiers), one urinary tract infection and chronic sleep deprivation.
Treatments we’ve tried include: Acid reflux meds (the upper scope showed he has no esophageal inflammation), Nystatin for yeast, many types of homeopathic remedies, gripe water, coccyntal, Mylicon, probiotics, cranial sacral therapy, chiropractic adjustments, Tylenol, sleeping upright or on an incline, massage, melatonin (to help him sleep through the pain), fruit to counter constipation, blood transfusions (he almost lost all of his blood when the endoscopy biopsy sites wouldn’t clot), we practice attachment parenting, co-sleep, delay vax, he’s not circumcised, I eat a very “clean” diet (free of allergens and gassy foods) and he takes Iron, and multi-vitamins regularly.
He sees a Naturopathic Pediatrician but has also seen other ND’s, MD’s, GI Specialists, Hematologist/Oncologist (due to a suspected blood disorder, TBD), ER Doctors, a team of PICU Doctors, Chiropractor, Cranial Sacral Therapist, and Feeding Therapists.
Some of the tests he’s had done include: Biopsies for Hirschprung’s Disease, Celiac Disease (I am Celiac, but his came back negative, he’s had no gluten exposure yet), Meckel’s Scan, Barium Enema X-Ray, numerous upper & lower GI endoscopy scopes, stool tests, and countless blood tests.
We are desperate for answers and pushed to our physical limits daily, we feel hopeless and heart-broken for our son to know so much pain every day. Thank you for reading and thanks in advance for any suggestions!