Tongue and Lip Tie FAQ - Mothering Forums

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#1 of 151 Old 01-22-2008, 09:05 PM - Thread Starter
 
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There seems to be a lot of tongue and lip tie problems (ankyloglossia) going on lately, so I thought I would try to make an FAQ about it. I will ask it to be stickied, or bump it occasionally. I don’t know much about this topic, so everyone who does please add to this. Thanks .

Kellymom’s always a good place to start:

http://www.kellymom.com/babyconcerns...tonguetie.html


MarcyC found a good resource describing various types of tongue and lip (labial) tie here. It's written by Elizabeth Coryllos, the guru of tongue tie:

http://www.aap.org/breastfeeding/8-27%20Newsletter.pdf

Here’s a thread with names of doctors around the country who can help diagnose and/or treat this condition:

http://www.mothering.com/discussions...ghlight=tongue

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#2 of 151 Old 01-22-2008, 09:17 PM
 
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Dr. Brian Palmer is a dentist who speaks about the importance of breastfeeding. He has two interesting presentations about tongue-ties:
This one is about ankyloglossia http://www.brianpalmerdds.com/frenum.htm
and this one is about ankyloglossia and breastfeeding http://www.brianpalmerdds.com/bfeed_frenulums.htm
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#3 of 151 Old 01-23-2008, 12:55 PM - Thread Starter
 
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http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

These folks did an experiment where they did a fake tongue tie clip operation ("sham") and compared with a real tongue tie clip, in babies who had a diagnosed tongue tie. Moms had significant nipple pain relief with the real tongue tie clip as compared with the fake operation. (They followed up the fake operation with a real one later too).

This would be a good abstract to print out & give to your doctor, if you suspect a tongue or labial tie.

Quote:

J Pediatr Surg. 2006 Sep;41(9):1598-600.

Immediate nipple pain relief after frenotomy in breast-fed infants with ankyloglossia: a randomized, prospective study.

Dollberg S, Botzer E, Grunis E, Mimouni FB.

Department of Neonatology, Lis Maternity Hospital, Tel Aviv Sourasky Medical Center, Tel Aviv 64239, Israel. dolberg@post.tau.ac.il

PURPOSE: Ankyloglossia ("tongue-tie") occurs in nearly 5% of neonates, but its clinical significance relating to breast-feeding difficulties is controversial. We tested the hypothesis that in infants with ankyloglossia referred because of breast-feeding difficulties, frenotomy alleviates the symptoms. METHODS: Twenty-five mothers of healthy infants with ankyloglossia were recruited because of sore nipples. Infants were randomized to either of 2 sequences: (1) frenotomy, breast-feeding, sham, breast-feeding (n = 14) or (2) sham, breast-feeding, frenotomy, breast-feeding (n = 11). The mothers as well as all personnel taking care of the child after each sham or frenotomy procedure were masked as to the study sequence. In every sequence, and after each sham or frenotomy procedure, a standardized latch score and pain score were obtained from the mother. RESULTS: There was a significant decrease in pain score after frenotomy than after sham (P = .001). There was also a nearly significant improvement in latch after the frenotomy in these mothers (P = .06). CONCLUSION: Frenotomy appears to alleviate nipple pain immediately after frenotomy. We speculate that ankyloglossia plays a significant role in early breast-feeding difficulties, and that frenotomy is an effective therapy for these difficulties.

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#4 of 151 Old 01-23-2008, 02:27 PM
 
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Thanks for doing this! A wealth of info right here in one thread!
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#5 of 151 Old 01-23-2008, 07:24 PM
 
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I have our tongue tie story linked in my sig--it's a great "been there, done that" post for parents who are unsure about clipping a type 4 TT.

dd #1 11/15/07 and dd #2 unplanned and so glad the midwife was on her way!
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#6 of 151 Old 01-27-2008, 06:49 PM - Thread Starter
 
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Anybody else with more info or stories?

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#7 of 151 Old 01-27-2008, 08:22 PM - Thread Starter
 
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another good thread with testimonials

http://www.mothering.com/discussions...6#post10384396

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#8 of 151 Old 01-27-2008, 09:25 PM
 
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yes. I've successfully nurse two babies with severe ties, no clipping. Both nurse through a part of the next pregnancy, one with severe GERD and over supply issues and both past the first birthday (one past the second).

Too many LCs are taught that clipping is the only option and don't know practical ways to get around it.

Carrie, The Birthteacher CCE and Doula, real mom to five; and womb-mom to G. born at 23w by emergency C. 12/09
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#9 of 151 Old 01-27-2008, 09:48 PM - Thread Starter
 
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Originally Posted by Rockies5 View Post
yes. I've successfully nurse two babies with severe ties, no clipping. Both nurse through a part of the next pregnancy, one with severe GERD and over supply issues and both past the first birthday (one past the second).

Too many LCs are taught that clipping is the only option and don't know practical ways to get around it.
Can you tell us more about the practical ways to get around it? I, for one, don't know much on this topic

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#10 of 151 Old 01-27-2008, 11:37 PM
 
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My newborn has a tongue tie. Looks to be type 3 or 4 to me. I'm a bfing counselor who has successfully nursed 2 babes (ds self weaned at age 4 and dd1 will be 4 in April and we're tandem nursing for the second time) and this is the most trouble I've had. She's been a slow gainer but her latch has gotten a bit better so I hesitate to clip if it isn't necessary. I'm going to wait and see how she does over the next couple weeks and then make a decision.
I've been helping her work on her latch and she's doing much better. It is something that can get better with time in some cases. The frenulum can stretch as the baby gets older. Luckily I have a very bfing friendly ped who will support whatever we decide to do about her tongue tie. i am glad to see, though, that not everybody clips the frenulum and can still bf successfully. A friend of mine 9another bfing counselor) has a child with tongue tie and she nursed him with only some early latch issues for 15 months before she even noticed his tongue tie.
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#11 of 151 Old 01-27-2008, 11:47 PM
 
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Quote:
Originally Posted by Rockies5 View Post
yes. I've successfully nurse two babies with severe ties, no clipping. Both nurse through a part of the next pregnancy, one with severe GERD and over supply issues and both past the first birthday (one past the second).

Too many LCs are taught that clipping is the only option and don't know practical ways to get around it.
I'm very interested in hearing about this. We had dd1 clipped and I do believe it was necessary. However, dd2 has a posterior tongue tie too and lip tie and we didn't have her clipped because she was getting plenty of milk (maybe because I was tandeming?). I've always wondered about my decisions, both of them, and ways to get around all of this.
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#12 of 151 Old 01-27-2008, 11:48 PM
 
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:

my ds2 is about to have lip surgery because of a severe tie...

lurking...

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#13 of 151 Old 01-27-2008, 11:53 PM
 
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Quote:
Originally Posted by 2boyzmama View Post
:

my ds2 is about to have lip surgery because of a severe tie...

lurking...
Hi, quickly checked your story. If you are sending photos to Dr. Palmer you might want to try Dr. Coryllos as well. She is semi-retired and now does all tongue tie operations I believe. She's passionate about it and very smart. Worth a try. PM me if you want to--I can give you contact info. And good luck!
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#14 of 151 Old 01-28-2008, 12:02 AM
 
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I came on to post about Brian Palmer but see that PatioGardener has already mentioned him . I second his website. I actually wrote to him and he was most helpful. My dd had her frenulum taken care of with laser when she was 5 and it was an in-office procedure and not a big deal at all, (not like the horror stories I heard of with the regular surgical procedure). Our dentist is very informed with the larger issues of tongue-tie, (not just early breastfeeding issues). He is Dr. Weiner in San Diego area: http://ranchosandiegodental.com/?page=aboutdoctor.

If your baby is under 1 year, I definately recommend getting it clipped NOW. I also successfully nursed my daughter, (till age 4 in fact), but a tight frenulum casues many problems with oral development, teeth alignment, jaw, social issues, (not sticking out tongue, french kissing, licking an ice-cream, getting food around mouth and not being able to lick it clean etc.)

:SaHM to 3 *DD* DD2 * DS
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#15 of 151 Old 01-28-2008, 06:34 PM - Thread Starter
 
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Another good article:

http://www.lowmilksupply.org/tonguetie.shtml#10

Here's part of it:

Quote:
Tongue-tie can lead to low milk production problems, since the baby cannot effectively remove milk from the breast. But there will be earlier indications that a baby is tongue-tied: latch problems, chronic sore nipples, “clicking” or “popping” sounds while baby is breastfeeding, shortened feedings (baby quits early), or prolonged feedings because baby is not satisfied.

Tongue-tie is not a rare condition. In one study, 4.8 percent of newborns were identified as having some degree of tongue-tie, most on the mild side.(11) Of the babies who had tongue-tie, 24 percent had significant problems with breastfeeding that lasted six weeks or longer. In another study, approximately 3.2 percent of babies were found to have “significant” (problematic) impairment of the frenulum. Thirteen percent of the mothers in that study who sought help for breastfeeding had problems related to tongue-tie.(12) Males are more likely to have tongue-tie than females, and this condition often runs in families.

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#16 of 151 Old 01-30-2008, 09:25 PM - Thread Starter
 
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One other word of warning to those with lip (labial) tie. My sone has a fairly mild case of this, but I think that, combined with pretty severe GERD and night nursing, caused bad upper tooth decay. He needed caps/crowns on all 4 top teeth.

If I had to do it all over again, I would have the lip tie cut from birth. Or, I would definitely keep an eagle eye on those front teeth, and brush brush brush several times a day.

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#17 of 151 Old 01-30-2008, 09:57 PM
 
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Quote:
Originally Posted by Rockies5 View Post
yes. I've successfully nurse two babies with severe ties, no clipping. Both nurse through a part of the next pregnancy, one with severe GERD and over supply issues and both past the first birthday (one past the second).

Too many LCs are taught that clipping is the only option and don't know practical ways to get around it.
I'm really anxious to hear how you nursed with tongue-tie. What are other options besides clipping. Please share your story. My DS has a type III tongue tie, which has led to my low-supply. He also had a high "bubble" palate which isn't helping things at all. But we keep trying...
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how common is this problem or set of problems? i too have seen a lot of mdc users discussing this issue and had never really hear much about it before coming here. why the seemingly sudden prevalence i wonder. i guess what i am asking is why would our children be born with a disability in their mouth structure that prevents them from nursing (and evolutionarily speaking therefore surviving) normally? i wonder if this is a modern problem or if it was dealt with differntly in times past. just curious.
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#20 of 151 Old 02-01-2008, 04:14 PM
 
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I've always figured that there are more moms here willing to work through anything and everything to continue breastfeeding.

I was willing to fight through blood sweat and tears to breastfeed, and good thing for that sheer determination!

I had my son's severe tongue tie clipped at 5 weeks old. It took but a second, one drop of blood, and that first nursing session immediately following the clip was like a dream. My wounds healed within 2 days. I had tried everything before the clip, and we had other issues such as thrush, over-abundent supply, constant engorgement, forceful letdown.... I was to the point of wanting to pull out the formula which is VERY VERY unlike me.

So, if it isn't severe I definately think it is worth working around without a clip. However, if you are risking discontinuing breastfeeding alltogether because the pain is unbearable and you are amazed the bleeding fissures in your breasts haven't become infected -- then this is a good example of an appropriate clip IMO.


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#21 of 151 Old 02-01-2008, 04:56 PM
 
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Originally Posted by arismama! View Post
how common is this problem or set of problems? i too have seen a lot of mdc users discussing this issue and had never really hear much about it before coming here. why the seemingly sudden prevalence i wonder. i guess what i am asking is why would our children be born with a disability in their mouth structure that prevents them from nursing (and evolutionarily speaking therefore surviving) normally? i wonder if this is a modern problem or if it was dealt with differntly in times past. just curious.
tongue tie clipping (frenotomy) is the earliest recorded surgery in history, dating back to ancient Egypt. it dusappeared from pedi texts in the 50s b/c of formula feeding becoming the norm. the problem still existed, but it was "solved" w/bottles.

dd #1 11/15/07 and dd #2 unplanned and so glad the midwife was on her way!
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#22 of 151 Old 02-01-2008, 10:17 PM - Thread Starter
 
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Originally Posted by arismama! View Post
how common is this problem or set of problems? i too have seen a lot of mdc users discussing this issue and had never really hear much about it before coming here. why the seemingly sudden prevalence i wonder. i guess what i am asking is why would our children be born with a disability in their mouth structure that prevents them from nursing (and evolutionarily speaking therefore surviving) normally? i wonder if this is a modern problem or if it was dealt with differntly in times past. just curious.
Stats on prevalence are in post #15.

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#23 of 151 Old 02-05-2008, 02:40 PM - Thread Starter
 
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Here's another good article, should be available free of charge to anyone. Good to print out & bring to your doctor / midwife if you have TT concerns:

http://www.pubmedcentral.nih.gov/pic...8&blobtype=pdf

Quote:
The prevalence of pain in mothers breastfeeding infants with ankyloglossia is much higher than that reported in mothers breastfeeding normal infants and clearly presents a considerable problem in terms of continuing breastfeeding. Intensive breastfeeding support is often inadequate for relieving breastfeeding difficulties in babies with ankyloglossia.

Results of studies assessing the effectiveness of frenotomy showed that breastfeeding mechanics improved and maternal pain decreased after the procedure. None of the studies found any serious complications of frenotomy. Given the relatively high prevalence of ankyloglossia, the large proportion of mothers of these infants with nipple pain, the strong association between pain and stopping breastfeeding, and the generally acknowledged health risks associated with not breastfeeding, frenotomy could be of great use as a safe and effective early intervention for breastfeeding problems attributed to ankyloglossia.

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#24 of 151 Old 02-08-2008, 11:34 AM - Thread Starter
 
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I'm going to try to collect all the names of health professionals who are knowledgeable about TT. I'm going to list Brian Palmer, DDS first. He seems to be quite passionate about BFing and knowledgeable about tongue tie. If you can't find any health professional to help you with your concerns, I would contact Dr. Palmer. I don't know which of the below is the best way to contact him so I will put them all:

Dr. Brian Palmer
3401 W 121st St.
Leawood, Kansas
USA 66209

bpalmerkc3@kc.rr.com

Brian Palmer, D.D.S.
Broadway Medical Bldg.
4400 Broadway, Suite 514
Kansas City, Missouri, 64111-3342.
Office - (816) 561-5578
Fax - (816) 561-5601
E-mail - brianpalmer@kc.rr.com


Dr. Cliff O'Callahan in Middletown, CT.

Elizabeth Coryllos, MD, Long Island, NY
Minneola NY at 516-671-6816 (current as of 2007)

Barbara Latterner, BSN, RN, IBCLC, RLC
Nurturing for the Nursing Couple, Brewster, NY, 845-279-7605.

Dr. Evelyn Jain is a family physician and lactation specialist in Calgary, Canada. She is director of the Lakeview Breastfeeding Clinic,

Dr. Weiner in San Diego area: http://ranchosandiegodental.com/?page=aboutdoctor
(reportedly does not do babies??? see a later post)

Drs. John Coquelet and Denise Punger
4640 S. 25th Street
Ft. Pierce, Florida, 34981
772-466-8884
Info@twofloridadocs.com
http://twofloridadocs.com/

Dr. Daniel Berner
2320 Concord Rd
Lafayette, IN 47909-2710
(765) 477-7436

Fred Margolis, DDS of Buffalo Grove, Illinois.

E-mail: kidzdr@comcast.net
http://www.dentalcompare.com/dentist...26&headerid=63

LC: Pat Shelley, Breastfeeding Center of Greater Washington
http://www.breastfeedingcenter.org/aboutus.html
(202) 293-5182


ENT: Dr. John Bosworth, Siegel & Bosworth, Rockville, MD
Shady Grove Office
15235 Shady Grove Rd.
Suite #100
Rockville, MD 20850
Phone: 240.361.9000
Fax: 240.361.9001

http://www.sb-entcenter.com/ourstaff.html

James Jesse, DDS
1000 East Washington Street
Colton, CA 92324
Phone: (909) 825-7403

E-mail: jamesjessedds@aol.com

Lawrence A. Kotlow, D.D.S.
340 Fuller Road
Albany, NY
(518) 489-2571
kiddsteeth@aol.com

http://www.kiddsteeth.com/articles.htm

Per a parent, Dr. Kotlow has been doing the procedure for years, written about it too. He uses a laser.


Scott A. Siegel, DDS, MD, FACS is a Clinical Assistant Professor @ SUNY Stony Brook School of Medicine and School of Dental Medicine and an Attending Physician, Department of Surgery, at Winthrop University Hospital. He is Board Certified in Oral and Maxillofacial Surgery and has a special interest in areas of frenectomies and frenoplasties in the oral cavity especially as related to feeding in the newborn/infant and with speech in toddlers and adolescents. He presented a talk on "Significance of Ankyloglosia and the use of CO2 laser (bloodless surgery) in the treatment of these disorders" in 2007 at Winthrop University Hospital so is knowledgeable about laser surgery in this area.

http://www.lioralsurgery.com/meet/meet_siegel.asp

Mineola Office Address:
134 Mineola Boulevard, 3rd Floor
Mineola, NY 11501
Phone:516.294.9696
Fax:516.294.3531

Port Washington Office Address:
14 Vanderventer Avenue, Suite 260
Port Washington, NY 11050
Phone:516.944.8330
Email:info@lioralsurgery.com

James G. Murphy, MD, FAAP, is Assistant Professor of Pediatrics at F. Edward Herbert School of Medicine, Uniformed Service University of the Health Sciences. He served 25 years active duty as a physician with the US
Navy and 12 years as a contract pediatrician with the US Navy and is currently a Government Service Medical Officer at Naval Medical Center San Diego, CA. He is a Member of the Academy of Breastfeeding Medicine, a
Medical Associate for La Leche League, a Member of the International Lactation Consultants Association, and serves on the board of the San Diego County Breastfeeding Coalition. Dr. Murphy began performing frenotomies in October 2003 and has performed over 300 infant frenotomies to date, including posterior submucosal fibrous bands.

LC: Pat Shelley, Breastfeeding Center of Greater Washington


Christina Smillie, MD - Breastfeeding Resources
Address: 2505 Main St # 223, Stratford, CT 06615
Phone: (203) 375-5812


Penny Soppas, M.D., IBCLC
Drexel Hill Pediatric Associates
5030 State Rd # 2-900
Drexel Hill, PA 19026
Phone: (610) 623-9080 Fax: (610) 623-3861

http://www.drexelhillpeds.com/peds/index.html#Soppas

From a MDC mama....I have another resource for tongue tie...he clipped my son's submucosal tie about 2 weeks ago. It's getting slowly better.

Dr. Greg Notestine DDS
Beavercreek OH
http://www.gregnotestine.com/

His sister was a LLL leader years ago, and he has published research on breastfeeding and TT. http://jhl.sagepub.com/cgi/content/abstract/6/3/113


I was also told there is a Dr. Michael Rutter, an ENT at Cincinnati Children's Hospital. He is from Australia and understands tongue tie and breastfeeding.
Michael J. Rutter, MD
Pediatric Otolaryngologist and Director of Clinical Research
Associate Professor, University of Cincinnati College of Medicine
Email mike.rutter@cchmc.org
Phone 513-636-4355
Fax 513-636-8133
http://www.cincinnatichildrens.org/s...ael-rutter.htm

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#25 of 151 Old 02-08-2008, 11:23 PM
 
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I just posted a separate post. Connor had his lip tie surgically corrected today. It was done under general anesthesia because of the severity of it. It was actually tied in FIVE different places. I'll post an update in a few days when the swelling and pain have subsided some.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#26 of 151 Old 02-09-2008, 07:07 PM
 
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how do we get this stickied?

dd #1 11/15/07 and dd #2 unplanned and so glad the midwife was on her way!
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#27 of 151 Old 02-09-2008, 08:04 PM
 
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My son was also born with a tongue tie.
Because of this we had a lot of problems BF - he lost a lot of weight and becamse very dehydrated. ( I was a first time mum and very scared and upset and confused at the same time!)
But his tongue tie was never addressed......Unfotunatly for us, we were unable to continue our breastfeeding relationship (which didnt last very long ) because of lack of help and support and wrong advice and my trusting everyone being a first time mum! ...
Luckily for my son though - I could pump like mad and I swear I could feed the world...but for him at least he got the milk that was rightly his!!!

Then I learned about tongue tie. I knew my son had it from day one. I was also born with tongue tie. I had mine clipped when I was 8 years old - it was not nice. But I also learned something new...my DH was also born tongue tied! Things you dont think about - things you connect later... Well I am quite positive, when the time comes, our next child will also be born tongue tied. But what I didnt know was how this effected BF and why I was having so much trouble and how to fix the problem until it was too late. My DS still gets some of my milk now and ever since I could I tried to re-establish a BF relationship with him...but no luck.

His tongue is not clipped though - like mine, I will have it clipped later if it shows any other problems for him (like speech), otherwise I wouldnt put him through that either. However I do think I will deffinatly have my next child, when that times comes, clipped right away to save the heartache down the road. Though I would love more information on this as well...I am planning a large age gap though so I have a few years yet! hehe

Here are some photos of my son - you can see the tongue tie in these photos. Its funny I never think about it until we are around other children - then I can really see the difference!!! My DS is nearly 29 months old and can just now start to lick his bottom lip a bit - hes never been able to stick it out far enough to do that before!!!

http://images-010.cdn.piczo.com/i1/v...724_3985_3.jpg

http://images-010.cdn.piczo.com/i1/v...16_32743_3.jpg

BF is more than just nutrition - and even to this day I have to deal with that loss becasue of the lack of help and information I had. I dont want any other mother going through that

I am just glad that I know what I know now so that I can succesffuly BF next time around! - A sticky of this would really help I feel for any other mums!!!

Mummy me : > Thats Ann! and my beautiful SONS Duncanand Hamish 19/09/05 & 22/04/10!
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#28 of 151 Old 02-09-2008, 10:50 PM - Thread Starter
 
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I have PM'd the moderators of this forum, but not heard anything yet. I will try again, and if you want to try too that might work

Twin boys 04/2005 : Support breastfeeding rights at FirstRight.Org : warrior
Face the rear for MORE than a year! Toddlers' necks are safest in a rear facing carseat
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#29 of 151 Old 02-12-2008, 11:58 AM - Thread Starter
 
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Twin boys 04/2005 : Support breastfeeding rights at FirstRight.Org : warrior
Face the rear for MORE than a year! Toddlers' necks are safest in a rear facing carseat
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#30 of 151 Old 02-13-2008, 12:14 AM
 
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I've learned more about tongue-tie from reading this thread than I knew before, and my son had surgery for it.

The birth center where my son was born generally made sure babies had breastfed at least once before being sent home, but we were an unfortunate exception. I had successfully breastfed a baby once before, and the staff there at the time weren't as familiar with bf issues. We were sent home after 8 hours, but he hadn't latched on at all.

A few hours after that, he was screaming full-steam and still hadn't breastfed. I called the birth center to tell them, and they advised spoon-feeding water to ensure against dehydration until he latched on.

24 hours later, I called a LLL leader I didn't know and just cried into the phone for about 20 minutes before I could tell her I had a day-old newborn who hadn't had anything but water since he was born. She was shocked I hadn't supplemented yet, and I felt better hearing from an LLL leader that my frustration wasn't without cause. She recommended expressing milk and giving to him via spoon or syringe until I could get medical help.

I called the birth center again and they immediately sent a nurse for a home visit. She had years of experience working alongside Lactation Consultants in a hospital, and she was really a blessing. She took one glance at him and said he was so severely tongue-tied he couldn't move his tongue at all. The sides went up and down a bit as he cried, but the middle was firmly planted to the bottom of his mouth such that he couldn't move it up or forward at all.

This nurse made some phone calls and spent the rest of the morning arranging for him to have a surgery. I only wish she had been the L&D nurse at his birth, so that she could have seen him sooner!

Even with the help, it was 6 days before we could get him scheduled for surgery in the hospital. By that time, he was almost exclusively formula fed since I didn't have a good pump and wasn't prepared for expressing. It took 3 months of supplementing before he was finally latching well enough to breastfeed exclusively.

Sorry this was long, but it's a sore spot with me since I feel our case wasn't handled well. I knew nothing of tongue-ties before my son was born, and unfortunately most of the medical staff I contacted didn't know either. We were able to breastfeed in the end, but after months of related problems that could have been prevented had his tongue been clipped on the day he was born instead of after nearly a week.
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