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Suck/Swallow Therapy March 3, 2012

Revising my daughter’s posterior tongue tie helped so much, she went from removing around 1/4 ounce of breastmilk to removing about 2 1/2 ounces. Still, she seemed to constantly break suction while nursing. I chose to revise her upper lip tie as well, she can now flange her lips more and she no longer has a painful looking mark on her lip after nursing; unfortunately it did not solve the problem with poor suction.

We had already seen a speech-language pathologist through our county’s “Birth to Five” early intervention program, and she had helped us some, but, seemed to think my baby was nursing well enough and we opted out of the program. Our lactation consultant (IBCLC)recommended a specific team of speech-language pathologists that specialize in infant sucking and swallowing issues and work in the NICU where I delivered. I had low expectations, but, the IBCLCs I have been working with have given me great advice so far, so I made the appointment.

My daughter (12 weeks old now) had her first appointment with the new speech-language pathologists yesterday, they were AMAZING! They did the most thorough oral examination of anyone so far, and were able to see that my baby has a perfect range of motion and a perfect latch, but, they noticed when she breaks suction (and slides further towards the tip of the nipple, not having enough areola in her mouth) that she also retracts her tongue. She is nursing like she is still tongue-tied! What amazed me, is that they went on to suggest some techniques (the main one being to provide cheek/jaw support, which also encourages her tongue to come forward and in turn results in stronger suction). We will work with her during bottle and breastfeeding both (as I suspected she “nurses” the same way regardless if it is bottle or breast) for two weeks, and then we will see the speech pathologists again . . . they seem optimistic that my little one will be much improved by then, but, if not they will keep working with us.

I just cannot believe throughout this journey how many different types of professionals can help so much! I only wish the information and resources were more readily available.

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4 Responses to “Suck/Swallow Therapy”

  1. alissa Says:

    Thanks for sharing your tongue tie story. My 6 week old son was born with TT and LT, and we just returned from Dr. Kotlow to get his PTT and LT revised again. I also found the Facebook group to be incredibly helpful. I’m having difficulty finding someone in my area who knows anything about suck/tongue training. We saw a speech/language therapist and she was completely useless. Would you be willing to explain what your SLP told you to do to help with your daughter’s suck? My son clicks when he nurses and retracts his tongue, much like what you described. I really appreciate your help!

  2. Hi, so glad you found the group helpful!

    Dr Kotlow is wonderful, it turned out my daughter’s first revision was incomplete, so we traveled to him for a deeper one!

    I have also seen better lactation consultants since then and a better speech pathologist too!

    Here is what helped us (and some of this is listed in the files of the support group too):

    -Allowing her to suck on my finger (nail towards her tongue), then flipping it over and giving slight pressure against her tongue

    -Pacifier tug of war: Allowed her to suck on a Soothie pacifier (I do not reccomend pacifier use in general, but, it is a great tool for this exercise), and then gently pulling away so she had to suck harder to keep it in her mouth

    -Electric toothbrush all over her tongue to build strength (she LOVES this one)

    -As she got older, allowing her to mouth all shapes and textures and eventually getting her to copy me with silly faces – anything to get her tongue moving

    It is important to keep it postive, so some things she really liked (toothbrush) we did a lot, things she was less fond of (finger in her mouth) we did less. We found she needed (still needs) A LOT of “bodywork” (chiropractic or craniosacral therapy) as well. Her jaw is severely recessed. We saw chiropractor, Sharon Vallone in CT on our way home from Dr Kotlow a couple months ago. Currently, I have been interviewing chiropractors near me (Western, MD) to find one who is confident working with the mouth/jaw etc. I’m really optomistic that with enough good chiropractic care, and her ties fully released, that she will continue improving (we have come so far already!)

    I also found after seeing a couple more IBCLCs, that, a very skilled IBCLC will be able to taylor suck training, positioning, etc to you and your baby’s specific needs. If you are having trouble finding a good one, some Skype.

    I am not sure how long it has been for you either, but, in my experience, it takes at least a week to really see change (I would venture to say the bodywork plays a big part as well).

    Hope things get easier and you can find the support you need!

  3. Kate Ciancarelli Says:

    I have had my sons lip and tongue clipped twice already. Having issues with aspirating and had a barium swallow study done and was told has an uncoordinated suck. Dentist said coukd release more, speech pathologist said not still tongue tied. Need some advice from someone who’s gone through this before – my whole day is consumed by trying to get him to eat.. Being told bf is too dangerous bc he’s aspirating so I am pumping and freezing and giving formula/ bottles. Struggling at where to go from here

  4. I’m sorry that I somehow missed your comment! How are things now? We are actually still in a bit of limbo with the ties…I am not comfortable having another procedure done, but, some professionals feel it would help (and some do not). Pumping can be quite a challenge, sounds like you are working hard and doing everything you can for your little one. I remember the feeling that my entire day was centered around feeding…so stressful! Is the SLP helping with exercises for the mouth? Some people also find things like cranisacral therapy or chiropractic etc. help too…and sometimes it takes time.


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