Not sure what my next step should be, or what more she expects me to do...

As a little back story, my baby boy, 5 weeks, was born tongue-tied. He had a great latch right off the bat, but the tongue tie kept him from being able to stick out his tongue far enough to be effective.

We got in contact with a BCLC who has been advising us. Under her advice, we got his tongue clipped with a specialist who clipped the tongue completely, until he made a "diamond shaped wound." She rented us a pump, and sent us to a chiropractor for cranial-sacral therapy. We went twice a week for three weeks and then went to once a week under the chiropractor's advice. The chiropractor not only does skull work, he does mouth work and tells us if Everen's developing the proper mechanics.

Well, things got better, and now the past few days, they're getting worse. When things we better, we had a consultation with our LC, and she said that while things were looking great, his tongue had formed a scar band and it was unlikely Everen would ever nurse properly. Though his mechanics were shaky, I've never had nipple pain and it looks like he generally gets enough to eat (we supplemented only lightly with formula to "top him off" after feedings, and he gained twice as much weight as he was supposed to... oops. Then when we quit formula, he is STILL gaining a bit more than normal, but we'd never withhold food, we're just trying other things first before assuming he wants food.

So, things are getting worse. I wrote my LC a letter, and her reply was less than helpful and nice. I told her that the chiropractor (the one SHE told us to go to) said we were doing great, and he thought it would be fine to skip a week. Also, that Everen has been pulling off after the very first let-down, shrieking, impatient for the next one. He won't keep sucking long enough to get another. Nursing has become frustrating for him.

She replied :

The scar band restricts his tongue range of motion so that he still uses a balance of chompy and gliding motion. This is actually an im-balance of motion. It takes exclusive gliding motion to sustain good suck and swallow to reach fullness.

When his tongue fatigues and he reverts back to his more chompy sucking, he tires and is frustrated at the poorer response of the breast or is fatigued and can't go on with the bottle.My assessment would be that this is the restricted motion of the tongue due to the scar band that is causing this problem.

More jaw glide and less chomping is helped by regular and frequent body work. When that support is withdrawn, it starts to become more obvious that he can't do the work effectively without releasing the band or by continuing weekly with Dr. Gerken.

Is weekly body work a viable alternative?

Or don't we really want him to have the full range of motion of the tongue that he should have?

So, a few things. First, she incorrectly assumed that we skipped an appt. No, we were going to skip next week. She blamed our skipping an appt (on HER chiropractor's assessment) for his problem. Then, her "or don't we want him to have full range of motion?" Is that a sick joke? It costs $100 an appt for the chiropractor and her, and we've had countless in the past month. I've been a wreck for weeks over this, pumping, in tears because I think I'm starving my baby, etc. We've taken him all over to get clipped, adjusted, you name it. It's clear we'd do just about anything to make this work, and we will continue. We'll get him clipped again.

My initial response is the feeling of pain and anger. I want to fire her, and either get another LC or start working just with an ENT. I don't know what else to do.

TL;DR Has anyone had a baby with a tongue tie who was ever able to nurse effectively for any period of time? Would you continue to see an LC who wasn't supportive? I'm sure I'm not the first person to take this situation very personally and emotionally, and I'd like emotional support from an LC. Instead, I feel vilified, as though I'm not doing every single thing I can.