Hi there - a quick intro as I haven't posted in years...
I have been an LLLL for 10 years, in Singapore, Hong Kong and Canada.  Became certified as an IBCLC in Oct 2010.  I have four children, and have started a company that aims to help families navigate the often steep learning curve of parenting, through prenatal classes, breastfeeding support, parenting workshops, and Welcome to Motherhood groups.  
 
I am working with a mother of  six-month-old baby who has had trouble gaining weight while exclusively breastfeeding, and is now on Neocate formula.  While baby is now gaining on Neocate for 95% of his calories, there seem to be other issues at work. I have permission to post.  There is so much going on, so this will take a while to outlline.
 
I first spoke to this mother on the LLL helpline when her baby was just a few months old for what sounded like a case of a strong let-down, clamping and vasospasms.  I actually met her in my LC capacity on Nov. 1, 2010 (yes...as a very new LC!) at a breastfeeding drop-in where I work.  Mom's main complaints at that time were intense nipple pain at every feed, and that her baby fussed a lot, and did not sleep for long periods.   Here is her history.  If you see phrases or words in quotation marks, I am quoting mom's words or her interpretation of what she heard:

Baby born July 17 at 7lbs 1oz.   Dr. felt baby was not gaining well, (dropped from 50th to 25th to 10th then 3rd percentile) and nipple damage was extensive by her own desription. Tongue-tie was determined to be the cause. Posterior tongue tie was clipped at 3 weeks old, by a dentist (who will perform frenotomies if patient is accompanied by her own LC.  I was not her LC at this time).  TT clip did not seem to remedy the baby's fussiness, nor did it do much to eliminate the pain of breastfeeding.   Started pumping to ease the pain.  Mom felt perhaps there might be an allergy to her milk, so mom removed the following from her diet:  beef, veal, soy, dairy.   Baby had bloody stools following one bottle of "regular" formula, and Dr recommended Neocate for any future supplements. Btw - her first child is three years old, and was born with a tongue tie that was not recognized until after weaning (which occured in the first two weeks due to excrutiating pain and severe nipple damage).  First child was diagnosed with a dairy allergy and was on Neocate after weaning.  This child also has a corn and wheat allergy.
 
Other health care providers involved: Home-visit nurse -  came five times (instead of the usual one time) to help Mom.  Mom also saw an incredible breastfeeding-knowlegeable GP almost weekly for about two months.  Dr. suspected thrush, presribed Diflucan for two weeks, with APNO.  Gave B12 and nifedipine  for vasospasms.  Mom has been on antibiotics several times for various infections (none breast related).  I believe I was the third  LC that she had seen.  Baby is being seen by a naturopath, nutritionist, gastroenterologist, osteopath, and physiotherapist.  

During the November consulation, I observed both Mom's nipple and base of nipple were very pink, and nipple tip was blanched after feeding.  The nipple was pinched.  Led me to think of clamping, due to strong let-down, and perhaps a tongue mobility issue.  Baby restless, lots of face-rubbing, pulling off the breast, sliding down.  Seemed to have trouble coping with the strong let-down.  We tried a more reclined position and baby improved and mom claimed that was an unusually long feed (maybe 5 min).  On follow-up visit the next week, mom tried a nipple shield for the first time, but comfort did not improve.  Reclining to feed helped, but baby still fussy, and mom had trouble latching on her own in this position.  I did not feel capable of recognizing a reattached posterior tongue tie, and decided to refer. Upon my referral, Mom was next seen at a tertiary level, hospital-based breastfeeding clinic, which means she received some of the highest quality, most experienced care in the city.  They noticed the tongue tie had reattached itself and suggested tongue exercises and body work for baby, noting the tongue was definitely doing something "weird".  This particular clinic does not clip tongue ties after 3 months.  Baby was 4 months old at the time.  Mom has been followed up at this clinic on several visits, but mom does not feel there is any point to going back, since they can't clip it, nor can they do the body work and tongue exercises for her.  She feels the rest is up to her.  Up until this point, mom was still breastfeeding exclusively.


On to December... She was referred by the doctor at the breastfeeding clinic to go to emergency since baby was losing weight and black blood found in stool.  Baby was admitted to the hospital due to the weight loss and reflux pain. Gastroenterologist told her to "enrich her expressed milk with Neocate to add more calories and also feed him every 2 hours - no earlier" (up until now, mom was cue-feeding hourly, and baby lost weight) Baby is on Prevacid (7.5g twice a day) which mom says has helped, but she does not think baby is pain free.  Baby is still "refluxing" according to mom, ie. gulping in his sleep, making swallowing sounds.  Baby does not spit up, or burp.  Not gassy. Stools are no longer mucousy.   Dr put mom on Domperidone recently, which has not increased the yield, which of course, is not surprising at this stage.  So with the intro of Neocate, which is now roughly 95% of baby's calories, baby is gaining about 100g per week.  Baby did not respond well to the taste of it, and Mom knows how bad it tastes, so nutritionist suggested half tsp of pure vanilla (alcohol free) in the bottle to ameliorate the flavour.  Baby is taking it more readily as a result. 
 
Mom has followed my suggestions of reclining to feed, eliminating dairy and gluten, working with a naturopath, and is following the clinic's suggestions of body work and tongue exercises.   She is currently back on gluten, but still avoids beef, dairy and soy.  Mom currently weighs less than when she got pregnant with her first child, and clearly could do with more food and less stress!

The only time baby breastfeeds is at night, and mom tops him up with 5 oz of Neocate after each feed - which might happen twice a night.
Baby underwent a barium test at the hospital and it showed that a small amount of milk goes into the lungs when he swallows.  They are on a waiting list to do a more precise milk scan with an occupational therapist to see whats going on.  
 
Baby also sees an osteopath/physiotherapist for the body work (physio siad there was some compression in the nerve in the back of the head, no further details) - which seems to be helping by improving neck mobility. 
 
I have never met a more tenacious and cheerful mother.  She is extremely open-minded and willing to try whatever is suggested to her. She is exhausted beyond belief, isolated due to baby's intense fussiness in public, stressed for her baby's health and tired of seeing so many specialists.  And yet still does not want to give up.  We have discussed using donated milk, which might be tricky to find donors who are on dairy-free, gluten-free diets.  We also discussed using a supplement nursing system so that she could feed at the breast more often, if the body work has released the tongue enough to allow pain-free feeding.  I also shared the "finish at the breast" method of bottle-feeding, so that baby starts to get used to that lovely satiated feeling at mom`s breast.  This is working well but for the night feeds she is worried  becuase she supposed to keep baby upright for 30 min after every feed, for the reflux. We also discussed high quality, low-allergenic solids.  
 
Mom's ideal situation at this point would be to "just breastfeed".  She is even willing to have bfing be uncomfortable, as long as baby can gain weight on her milk.  She is willing to augment solids so that some of the calories can be coming from another source than Neocate, but baby is a reluctant eater.  She is not sure if she, herself, can sustain such a restricted diet for very long.  She is very close to the point of giving up on breastfeeding.
 
I would love any ideas you have of what might be going on here, and welcome suggestions that might help baby's issues and increase Mom's supply to a point where it can help this baby grow on more of mom's milk.

Thank you,
Tanja Knutson, IBCLC
The Learning Family
Montreal
  		 	   		  
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