Elliot SampleBaby – Medical History
Dec 15, 2015: Born at 37 weeks, 1 day, weighing 6 lbs 4 oz.
Early issues: sleep disturbances, pain, stools very watery (often mostly clear liquid), frequent (20-25 a day), and explosive, diaper rash, breastfeeding challenges: gained weight but nursed constantly, would squirm, twist, arch, flail, cry, and repeatedly come off the breast. Had symptoms of silent reflux, tummy pain/gas.
Here is a list of Signs & Symptoms that will help you describe symptoms.
Jan 14: 1-month checkup: doctor noticed tongue tie that she thought might be causing the nursing troubles.
Jan 15: Tongue tie clipped by ENT Specialists of NoVa. Latch improved a little but overall problems persisted.
Jan 29: Pediatrician prescribed Famotidine/Pepcid for silent reflux (0.3 ml twice a day). Sometimes he seemed like he felt a little better but sleep was still as bad and there were no major improvements.
Feb 18: 2-month checkup. Advised to continue Pepcid.
Mar 4: Lactation consultant noted high palate and upper lip tie. She didn’t think there was anything wrong with my breastfeeding technique but thought his behavior warranted evaluation by an occupational therapist – he seemed to have sensory/stimulation issues. She also referred us to a pediatric gastroenterologist (Dr. Benjamin Enav) to discuss the reflux medication since we didn’t know if it was helping.
Mar 8: Dr. Enav (GI) recommended I eliminate all dairy and soy from my diet. Based on symptoms, diagnosed dairy and soy protein intolerance and resulting colitis but did not seem concerned. [Possible Causes of Reflux]
Mar 14: SLP (Debbi Kotin) and OT at INOVA Loudoun thought he might have vestibular issues and torticollis. PT didn’t see any physical issues. Showed me some infant massage techniques to help nervous system. Debbi diagnosed posterior tongue tie and upper lip tie and referred us to Dr. Christopher Chang (ENT).
Mar 29: Dr. Chang released tongue and lip ties via laser.
Apr 12: Follow up w/Dr. Enav. Dairy/soy elimination seemed to be helping: diaper rash mostly cleared up, less fussy sometimes, BMs less explosive and didn’t seem to bother him quite as much, and he stopped grunting and clearing his throat at night. Seemed to have fewer tummy pains and was more comfortable in sitting positions. Dr. Enav said we could try to wean from the Famotidine over the next few weeks. (However, that evening was bad for Elliot. He was arching a lot and wouldn’t eat. We decided not to wean from meds.)
Apr 14: Osteopath (4 sessions over four weeks but made Elliot miserable).
Apr 15: 4-month checkup. Referred to neurologist to rule out infantile spasms.
Apr 20: Neurologist Dr. Vu (PSV). Diagnosed “jittery infant” and scheduled EEG.
Apr 28: EEG (came back normal)
May 6: Back to pediatrician – switched from Pepcid to Nexium (5 mg packet once a day)
***Major BM changes. Was having 5-6 explosive, watery, sometimes mucousy BMs per day. Within a few days of starting Nexium he started going only once every 1-3 days and became very gassy and uncomfortable. BMs were bubbly and thicker with mucous, sometimes dark green, foul smelling.
May 12: Cut out eggs and wheat per Dr. Enav (but only stuck with wheat for about a week)
May 27: Contacted ped w/concerns about BMs and gas. Switched to Zantac (1.5 ml twice per day). Nothing seemed to be improving. Got frustrated and ate dairy/soy/etc. for a week or two.
June 12: Cut out dairy, soy, eggs again
June 14: 6-month checkup: Ped suggested trying formula (Similac Alimentum). Didn’t go well and Elliot vomited the formula/rice cereal that I fed him the next morning. Started Nexium twice per day along with the Zantac.
Ran out of Nexium and insurance wouldn’t cover.
June 20: Started OTC Prevacid in applesauce (7.5 mg twice a day).
June 20: Saw allergy P.A. Robyn Morrissette at PSV. No testing done.
June 21: Neurology follow up. Said would consider MRI if not better in 2-3 months.
July 7: GI Dr. Honigbaum (PSV). Recommended 24-hr ph impedance test off meds. Stopped meds that night.
July 12: CST Bobbi Wade released neck tension, which cleared up nursing pain/blister for me. Could feel GI discomfort. Sometime around here eliminated nuts from my diet.
July 14-15: Impedance test. After 7 hours of fasting, symptoms minimal during test. Result: “not suggestive of reflux” though he did have 41 reflux episodes and this was a “good” day.
July 20: Started meds again – 2.5 ml compounded Prevacid three times a day.
July 28: Allergist Dr. Mansoor (PSV). Pediatrician suggested looking into EoE or FPIES. Dr. Mansoor spoke to PA Robyn Morrissette (whom we had seen previously) and Dr. Honigbaum. Determined there is nothing to do from an allergy perspective. Testing isn’t reliable. Looking for EoE/FPIES still wouldn’t tell us what he is reacting to. Suggested I put him on formula if I need relief.
Aug 1: Saw Debbi Kotin, SLP (INOVA Loudoun). She noted very limited tongue mobility, cheeks tight from compensating, posterior tongue tie reattached and upper lip tie partially reattached. Recommended laser revision.
Aug 2: GI follow-up, Bernadette Diaz (CNP PSV). Rec Milk of Magnesia for poop issues, stay on Prevacid, ordered four stool tests. Rec adding eggs back to my diet.
***Meds working? Developmental milestones (rolling, scooting, sitting, rocking on all fours, sleeping in crib)***
Aug 8: Follow up with ped. Ordered calprotectin stool test. Prescribed erythromycin (not using yet).
Aug 11: CST w/Bobbi. Said he felt less shaky but still had a lot of tension and felt blockage in left side of pelvis.
Aug 11: Dr. Rishita Jaju (ped dentist) revised tongue, lip, and buccal ties. Rec Dr. Posner.
Aug 15: Dr. Shara Posner (chiro) noted vestibular, tactile, sensory issues based on reaction to reflex tests. Also noted crease in palate, minor asymmetry/bulge in forehead causing right eye to be slightly lower.
Current symptoms: Back arching along with grunting/loud throat noise (some improvement but still frequent), squirming while nursing, sometimes chokes/gags while nursing and makes high pitched gulping sound, wakes every 2-3 hours at night, BMs often infrequent (5+ days), mucusy and smell strange, obvious discomfort, foul smelling gas. Often has large boogers and sneezes.