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Baby was born via spontaneous vaginal birth. Birth weight 4120gm. Baby followed by family dr. who felt everything was fine. Mom asked about tongue tie, and dr stated baby did not have one.
 
At 2 weeks mom spoke to dr about baby getting fussy at breast, baby would nurse for a few minutes and then start fussing and crying, and arching her back. Dr stated baby didn't like her breasts so to start formula feeding. Mom kept on with breastfeeding but would pump and given one bottle at night of EBM.
 
At about 4 weeks, at the 1 month check up at dr's office baby was not gaining well and dr suggested starting to supplement with formula and to see him in 2 weeks time. Mom phoned La leche League and they referred her to the breastfeeding clinic. Weight at dr's office was 3850.
 
At 7 weeks and 2 days mom came to breastfeeding clinic. Baby had not gained after 2 weeks and mom had been bottle feeding times 3 days. baby was now refusing breast. Weight at this time was 4230gm. Mom pumping every 2 hours during the day and 3 hourly at night and obtaining 60mls. Baby mainly EBM fed - mom needs 80mls formula per day. Baby latched with a nipple shield and transfered 15mls, but was crying and not very happy about being at breast. On WHO growth chart baby dropped from 97th percentile at birth to 15th percentile.  Suck assessment done, type 3 posterior tongue tie present, baby has sensitive gag reflex, cheeks dimple when sucking on finger and makes clicking sound. Feeding plan with suppelments of EBM/formula amounts given and follow up booked for 2 weeks time (over the Christmas period). Supplement amounts worked out at 30mls per hour and to base it on how long between feeds, so if 2.5 hours between feeds, offer 70mls.
 
At 9 weeks and 2 days follow up visit. Baby weighs 4520gm. Further drop on WHO growth charts to approximately 9th percentile, though weight gain per day from previous visit is 21gm per day. Baby will only occasionally take breast  when sleepy and never with shield. Mom is exclusively breastmilk feeding. Baby has congested courgh, seeing Dr at 2pm today for follow up. Baby assessed for tongue tie, very little movement, bunching on lateralization and very limited elevation. Suggested further assessment and frenotomy. Suck training excercises given, including how to desensitise the gag reflex.  Appointment made for 8 days time. Plan was to bottle feed baby and then offer breast afterwards so as not to aggravate the breast aversion.
 
At 10 weeks and 3 days follow up visit. Baby weighs 4595gm. Only gaining 9gm per day. Now at 3rd percentile on WHO weight chart. Baby had anterior frenotomy but was moving too much for posterior frentomy. Baby still does not have great elevation, more just the tip, and continues to have bunching with lateralization.  baby not feeding well at all. Not on a bottle or at breast. Head turning predominantly to right side. Call in to family dr advising that baby needs a referral to a pediatrician. Also recommended seeing an osteopath for body work. Follow up visit booked for 3 days time.
 
At 10 weeks 6 days follow up visit baby weighs 4810g (gaining 45g/day. Baby back at approximately 9th percentile on WHO growth charts. Has seen paediatrician. Mom did not want to try breastfeeding at this visit. Encouraged to try and feed baby from breast when sleepy and relaxaed. Continue doing suck training and also strength training with counter traction when bottle feeding. Mom reluctant to see osteopath. Reluctant to have tongue tie reassessed despite poor tongue movement. Follow up appointment booked for 9 days time.
 
At 12 weeks and 1 days follow up visit baby weighed 4990gm (gaining 20g per day and at approximately at 9th percentile on WHO growth charts). Baby has latched x 3 in last 9 days, mom pumping and bottle feeding. Baby frantic at breast, would not latch, would not allow suck assessment but limited tongue movement seen with crying (restricted elevation). Continued to recommend reassessment re frenotomy and also an osteopath. Work with suck training as able. Mom saw dentist right after this appointment and had posterior tongue tie revision done. Appointment booked for 7 days time.
 
At 13 weeks follow up appointment baby weighed 5145g (gaining 22g/day and at approximately 9th percentile on WHO growth chart). Seen by osteopath and has follow up appointment in a weeks time. Seen by pediatrician who is happy with weight gain (stabilized) and will reassess at 4 months. Mom is bottle feeding and pumping. After posterior release baby did not bottle feed well. Complete breast refusal. Mom has tried all positions and all techniques, including gravity assissted, bouncing and shushing, nipple shields, bottles right at the nipple and then removed with breast right there, biological nurturing etc. Advice given was to bath daily with baby but with no emphasis on feeding, just bath with baby and enjoy skin to skin. Do any oral excercises after feeds and only if baby is interested. Work on mimicking exercises.
 
What am I missing? Is there a sensory processing disorder perhaps that we haven't noted. Mom has breastfed 3 other children successfully and really wants this to work. Does anyone have experience with extreme breast aversions like this one? Is there something else getting in the way? Baby is very tense on assessment, when lying on back for diaper change arches back and head turns to the right. She needs a lot of stimulation while in clinic when working with her, she is easily agitated by the idea of breastfeeding and needs lots of bouncing and chatting to her. She also loved to be sung to. When trying to get her to mimic opening her mouth and sticking out her tongue, she won't mimic me (but will watch fascinated while I do it). She will mimic mom to open mouth, but not to stick out her tongue. Mom states she is happy and content baby at home and will lie and play by herself for periods of time between feeds.
 
Any advice will be appreciated,
 
thanks

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