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Looking for someone experienced diagnosing posterior tongue ties? (x-posted)

post #1 of 31
Thread Starter 

Cross posting since I'm in the "4 state" area...

 

I think my little girl may have a posterior tongue tie, and so far everyone I have seen has said she does not. I am working on some other things to get her feeding better (suck therapy and a chiro adjustment). But she cannot hardly remove milk from the breast at all and also has quite a bit of dificulty with the bottle so I really need to get this sorted out...

 

I live in Hagerstown, but, I am willing to drive a bit. Does anyone know of someone who experienced specifically with posterior tongue ties in "area" (like I said I would drive even a couple hours if needed).

 

Thanks!

post #2 of 31

Sorry to hear about your babe's sucking trouble! 

 

One thing you may want to consider is a chiro who also has advanced craniosacral training to do mouth work (tongue, palate, sucking/swallowing, and teeth issues). My chiro in Annapolis Dr. Carol Phillips does great mouth work, and much of her practice is pediatric. She works on me and my kids, and is just the bestwink1.gif Her husband Bruce Chaffin is also a craniosacral therapist, and they have their practices together. If one is busy, the other may be able to help you.

 

Their website is http://www.dynamicbodybalancing.com/

 

And here is a youtube clip of her working on a newborn (who had a difficult birth) with sucking and swallowing issues (watch how quickly it gets resolved :)

 

http://www.youtube.com/watch?v=VH1U-Kbz6IY

 

Best wishes for a quick resolution!

Grace

 

 

post #3 of 31
Thread Starter 

Thanks, the Video was impressive! We have an appointment on Tuesday with a chiro in our area that works on babies with breastfeeding issues...hopefully that will help; I'm just trying to have plans B and C too in case it doesn't. We also have an occupational therapist coming at some point, but, it looks like it could be a month or more which didn't thrill me.

post #4 of 31

You might want to check out this video from Dr. Kotlow on diagnosing PTT: http://www.youtube.com/watch?v=5opSbXvL7yQ

 

This website also has some good information: http://www.tonguetieclipit.com/Introduction.html

 

The recommendation I was given for clipping is in Baltimore, so a hike for you, but it could be an option:  

 

Andrew Goldstone, M.D., FACS
6565 N. Charles Street, Suite 601
Baltimore,Md. 21204

(410) 821-5151

To be seen immediately, tell the receptionist it is for a baby

 

Good luck! 

post #5 of 31
Thread Starter 

Thanks so much!

 

I had thought she had one then become less convinced after having hear pediatrician and 2 different LC's examine her mouth, but, after looking at the pics you linked I am back to being really convinced again.

 

Dr. Goldstone is under our "travel" insurance (I have to see how that works) so that is awesome and Baltimore is close enough to me.

 

Thanks so much for the info...I've been at such a loss where to go and my DH has been really unsupportive (I think he just does not believe anything is actually "wrong," but, my mama instincts tell me there is..and NOBODY but me can feel her suck - so its hard to blame him for think she is fine. Hopefully, I can get my DH to agree to one last "second opinion" - he's usually ok with stuff like that if I promise its the last...and I'm there; I know I can't spend her entire baby-hood trying to figure this out, but, I want to give it a decent shot first!

post #6 of 31

Definitely see Dr. Goldstone.  NOT one of his partners.  I have had clients turned away by his partners who then go back to him and he takes care of it.  Why waste a trip!

post #7 of 31

DR.Matt Hillburn in Annapolis 410-266-3900 excellent ent

post #8 of 31
Thread Starter 

Thanks for the advice on making sure who I will see! I don't mind the trip so much, but I know its ging to be expensive even with insurance! I think my little girl might be lip tied too (just heard of this today and it is extremly obvious to me if I am understanding it correctly)...Do you know if he will check and clip both (if needed)?

post #9 of 31
Thread Starter 

Dr. Hilburn takes our regular insurance vs. our "travel" insurance (which places tend to bill incorectly for some reason). I wonder if we may try that first...maybe I will call the office and see if they can have him call me and talk before going in...

post #10 of 31

He will evaluate and if he thinks it may be helpful he will usually do it then and there.Posterior tongue ties can be controversial,he may say it "may or may not"make a difference. A good video clip of seeing this done is Dr. Brian Palmer DDS frenotomy,insurance usually covers this.Other resources are Alison Hazelbaker and Catherine Genna Watson are educators on the tongue tie and have grest books on the subject!

post #11 of 31

I don't have any experience with tongue tie, but if you can make it to the Breastfeeding Center in DC, the lactation consultant there, Pat Shelly, is fabulous. She will also do a short phone consult with you if you want to troubleshoot before committing to going in.

 

http://www.breastfeedingcenter.org/

post #12 of 31
Thread Starter 

Thanks everyone!

 

We ended up first seeing Dr. Milano, ENT in Hagerstown who seemed to know nothing about posterior tongue ties but immediatly diagnosed a lip tie (we chose not to clip that day). Then we went back to our pediatrician who had last week said DD did not have a tongue tie when he looked in her mouth, but, as we talked more about her sucking behavior he said he thinks she may have a PTT and would probably benefit from having it clipped (go figure...I must have just not worded things right last time or something!) We have an appointment with Dr. Goldstone next Friday. My DH doesn't want to clip anything, but, he did finally agree to take it "one step at a time" so we will see waht Dr. Goldstone says and if he doesn't suggest a clip I will let it rest. ;-)

post #13 of 31

LOL, well, be prepared if Dr. Golstone says, "Well, it's slightly tied, I can clip it if you want."
EXACTLY what he said to me.

He said, "She's tied about a 5 or 6 on a scale of 1-10. It won't effect speech."


When I asked where on that scale it starts to affect BFing, he said he doesn't know. Ugh. He said patients see Peg Merrill as a follow up, so he doesn't see them back. (she's the one who sent me to him in the first place...after I'd met with numerous other LCs....) http://www.nurturingnaturallylc.com/ He speaks highly of Peg.

 

My DH was with me & he said, "Well let's just do it." 

Having it done is SO simple & quick. I was a big wuss & had DH hold her while I sat in the waiting room bawling my eyes out, but literally, i had just sat down before they came back to get me, so don't feel like it is some big deal "surgery." (My sister actually berated me for calling it that - saying I"m making myself feel more guilty & exaggerating using that term. She was right, I think.)

 

Peg had also given me some post-frenotomy exercises. Not sure if Dr. Golstone is familiar with those, since he's an ENT doc, not a BF expert, so look into those if you get your LO clipped.

Best of luck!!

post #14 of 31

Yes, post frenectomy exercises are important, the last thing you want is to have to have it re-clipped!

 

You and your husband may want to read this blog post by an IBCLC in Canada who had her son's TT clipped at 8 years old.  It goes through their reasons (he needed speech therapy, and his teeth were crowded) and their experience.  It may help your husband to understand the full scope of the issues that a TT can cause.  I hope your appointment goes well!  (Also, she links to some post surgical exercises to help with proper healing in the post)

post #15 of 31
Anyone know of a Dentist who is knowledgeable in diagnosing and clipping posterior tongue ties as well as lip ties? My DS is 6 yo, so this is not for an infant. I am in Gaithersburg.
Edited by KimPM - 1/26/12 at 6:00am
post #16 of 31
Thread Starter 
Quote:
Originally Posted by MegBoz View Post

LOL, well, be prepared if Dr. Golstone says, "Well, it's slightly tied, I can clip it if you want."
EXACTLY what he said to me.

He said, "She's tied about a 5 or 6 on a scale of 1-10. It won't effect speech."

 

That's what we got from the speech pathologist who assessed DD today..she said she figured DD would grow enough that it wouldn't effect her speech.

 

Our appointment is tomorrow and I'm so nervous...even if he recomends clipping I am afraid *I* might chicken out!

 

 

post #17 of 31

Kim, my friend had her son's TT clipped by Dr. Epstein in Rockville yesterday.  She said it was a GREAT experience (as good as having something clipped on your child can be).  I would give them a call.  I assume they would do older kids as well based on what I've heard.  

post #18 of 31
Thread Starter 

Thank you for ALL of your suggestions and recomendations!!! Dr. G was great and so was the whole staff...we had a wonderful experience. It is stil lto oearly to tell if it has made a difference, but, I am really ok either way...I feel like we have done what we can now.

 

Here is what I posted to my LLL group earlier:

 

Dr. Goldstone was the ENT we saw, and he was AWESOME - I highly recommend him; he was so knowledgeable and really showed us and explained everything and answered all our questions. My hubby was still unsure but he was willing to trust my judgment...my mom helped my hubby understand what I was trying to tell him better too - so glad she was able to join me. ;-) anyway Dr G said the lip tie was not bad and he did not feel it would interfere with breastfeeding or teeth, he did say she had a posterior tongue tie and highly recommended releasing it. He released it via laser (and I held her the whole time and we got to see everything). Afterwards she cried hard for about 5mins then nursed. Later we went to the pediatricians' office and she is 9lbs now (6lbs over birth weight and a 10oz gain in 1wk LOL making up for lost time!) She did not gain weight after her feed. I have fed her twice since then and those 2 times she hardly clicked and unlatched on her own and seemed satisfied. She is refusing the bottle from me (screaming and closing her mouth) - I'm going to do another feed/weigh tomorrow and keep them up for a little while until I consistently see that she is drinking more. She's been playing with her tongue a lot (it sticks out way further and goes up way further when she cries) so I think she is just learning how it moves etc. And hopefully in a few days she won't need bottles at all when she's with me! :-)

post #19 of 31

GREAT news!! Glad it was worth the trip for you!  I hope things continue to improve with your breastfeeding relationship! 

post #20 of 31
Quote:
Originally Posted by KatyLinda View Post

Kim, my friend had her son's TT clipped by Dr. Epstein in Rockville yesterday.  She said it was a GREAT experience (as good as having something clipped on your child can be).  I would give them a call.  I assume they would do older kids as well based on what I've heard.  

Thank you for the response. This must be Dr. Stephen Epstein, the ENT? However, I was hoping to have a discussion with a dentist about the need for it for dental issues (as well as eating). Not sure I would get the same info from an ENT. Hmmm.
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