Looking for help with posterior tongue tie in New England

[egansmama]

After three months of excruciating BF, my DS has been diagnosed by 2 different IBCLCs as having posterior tongue tie. We live in an area where there are no doctors who will treat it. I am hoping some of you out there might know of medical professionals in Maine, New Hampshire or Massachusetts with experience in dealing with posterior tongue tie. We're willing to travel for treatment if it means  I can keep BF for the long haul.

Your recommendations would be much appreciated!

[gemasita]

Here is the dentist in Albany, NY who is the leader in the diagnosis of posterior TT.   I wonder if you could either travel to him or ask if he has trained anyone to diagnose posterior TT in your area.  I think he has trained people all over the country in this.

http://www.kiddsteeth.com/

[egansmama]

Thank you, Jamie. When I contacted Dr. Kotlow, he said he didn't know anyone in my area, and suggested that we go to Albany to see him. I appreciate that he is well-regarded but that's awfully far for us to travel. I am going to exhaust all of my options closer to home before we make that decision.

[gemasita]

Darn!  Seems like if there were someone in your area, he would know.  I think he'll accept pictures by email so that you can at least make sure you are on the right track.  My understanding is that LCs can't diagnose.  They can just suspect.  ;-)

[homemademom]

 http://www.lowmilksupply.org/frenotomy.shtml Check out this link. It lists specialists who treat it by state and Mass. is on there.

[danipoppins]

I live in Southern Maine and our son's posterior tie was clipped at 9 days by a doctor in Portland who was "highly recommended" by the LCs at MMC.  I found his 'bedside manner' to be not terribly appealing and he didn't give us any exercises to do so now that DS is 6 mos, his tongue is still pretty restricted (DS also has a lip tie that the doc totally missed and I picked up on after when researching on my own).  We asked our ped recently for a second opinion and she's sending us to Dr. Kluger at Maxwell, Kluger and Makaritz (ENT Associates).  He was also on the list of recommended folks to deal with a tongue tie; I'm hoping he has better insight into the posterior tie.  

Not sure where in the Northeast you are, but the IBCLCs at MMC are great, are familiar with posterior ties (my homebirth midwife missed ours, but I had to transfer to MMC and I suspected something was up having had a TT baby before and the LC there picked it up right away).  You don't have to have birthed at MMC to see the LC's there, so if you're close enough and need an LC familiar with dealing with posterior ties, I'd contact them.  

http://www.melcaonline.org/

http://www.melcaonline.org/Entlist.html (list of local ENTs who understand the connection between TT and breastfeeding)

Good luck mama!

[egansmama]

Thanks, danipoppins -- I live in Portland! The MMC LCs were very helpful with diagnosis but could not point me toward anyone in Maine who would do the frenotomy. Who did your son's clip?

Our ped referred us to Dr. Fred Roediger (the son, not the father who is listed on the MELCA site) but he pooh-poohed the idea that Egan was tongue tied after a cursory examination. So we went to Needham, MA yesterday to Boston ENT, where Dr. Rebecca Stone evaluated our son in greater depth and agreed with the tongue tie assessment. She clipped him right there in the office and the pain was minimal for him (less traumatic than his vaccinations, by far). The breastfeeding pain is already significantly better for me, and I'm hoping that the improvement continues as we both get used to the new normal.

So all's well that ends well, but it would have been nice to avoid the 3.5-hour drive home in Boston rush hour traffic. I wish the Maine medical community would get wise to this topic and this procedure!

Now I'm off to research exercises...

[time4latte]

Originally Posted by egansmama 

Thanks, danipoppins -- I live in Portland! The MMC LCs were very helpful with diagnosis but could not point me toward anyone in Maine who would do the frenotomy. Who did your son's clip?

Our ped referred us to Dr. Fred Roediger (the son, not the father who is listed on the MELCA site) but he pooh-poohed the idea that Egan was tongue tied after a cursory examination. So we went to Needham, MA yesterday to Boston ENT, where Dr. Rebecca Stone evaluated our son in greater depth and agreed with the tongue tie assessment. She clipped him right there in the office and the pain was minimal for him (less traumatic than his vaccinations, by far). The breastfeeding pain is already significantly better for me, and I'm hoping that the improvement continues as we both get used to the new normal.

So all's well that ends well, but it would have been nice to avoid the 3.5-hour drive home in Boston rush hour traffic. I wish the Maine medical community would get wise to this topic and this procedure!

Now I'm off to research exercises...

Be careful going to Boston ENT Associates. I had an appointment today to have my son evaluated for TT (after confirmed LT) but they refused to see my son, because the insurance company required information from THEIR OFFICE to finalize our pending approval for the out of network visit. I even called and complained to the Office Manager and she said they do not contact insurance companies to facilitate referrals. The physicians may be good but the office staff are horrid. If you really need to see someone, I would honestly call around to several physicians and ask what their policies are regarding prior authorization/referrals for out-of-network visits to their office. It will save you a ton of time and money if you do. (We are a one car family and I had to rent a car to be able to get to the appointment in the first place.)

[Vegan Princess]

If you are willing to travel, Dr Kotlow is supposed to be the best in the nation. It's worth having it done right the first time. It took us 3 times to get it done right with my poor baby girl! Good luck!!

Cindy