I know some have asked if correcting a tie will bring the lower jaw forward. I think the general consensus from practitioners is that it may. The reason I have asked in the past is that I have a child with Pierre Robin Sequence (PRS). He was born with severe retrognathia in which his chin was virtually nonexistent at birth. Despite doing an incomplete revision due to my son's anxiety kicking in and he clamping his jaw down so the provider could not complete the revision we have had phenomenal results.
Before photo February 22, After March 9. Revision done March 1st.
This is my "classic" PRS son (5) we have tried to be minimally surgically invasive. He hasn't had a Jaw Distraction (JD) despite it being recommended. He hasn't had ear tubes despite it being recommended for constant fluid and was a minimally invasive procedure. We did Craniosacral Therapy (CST) to naturally relax the fascia and muscles along the sides of the mandable and under the jaw at the hyoid to avoid both of the two previous mentioned procedures with great success.
We have been wanting to get his posterior tongue tie corrected despite requesting it be corrected at time of palate repair. His first team said he was not tied. His second team said he was "mildly" tied. This past week we took him to get the tie corrected by a knowledgeable posterior tongue tie practitioner. The tie was not "mild" as his team had suggested it was about as severe as they come. He had no ability to elevate any portion of his tongue and the tip was actually curled under. He also had no lateral movement of his tongue.
We had talked with him, he said he was ready and was asking how soon we could get it fixed. However, once we arrived and got in the room he didn't like the sensation of the topical numbing medication that he knew they were going to use and started to panic. He didn't like the pressure of the spatula used to hold his tongue up in order to do the procedure. He did allow the practitioner to partially do the revision, but it was incomplete.
Despite an incomplete revision we have seen phenomenal improvement in speech, eating, breathing, suction, and reduction in pain. He has come to us at different times to tell us how each of these things are easier and don't hurt him as much. We feel that his jaw has also come forward as well, but I haven't taken pictures yet to compare. He sounds much less nasal than he did a week ago. He is not enjoying the wound care stretches that are required to be done after this type of revision. But as much as he hates them and fights them he reminds me to do them because it's easier for him to talk after I do them, which he has been saying "now I can talk again". He never complained of pain or difficulty while doing anything he is now saying is easier or less painful. He didn't know because that's just the way it had always been.
Last night at church his teacher of 6 months remarked that she could actually understand him for the first time. To me, this was huge because his speech has been 10% intelligible to most people. Closer to 30% after frequent interaction with him. I didn't hear any of the children say "what?" when he spoke to them and he was able to converse with him much easier!
His revision was not completed because he didn't allow the practitioner to finish. He still has no elevation at the tip of his tongue, but it's also not curled under at this point. He does have about a 30% improvement in lateral movement and just that small movement ability has improved his speech tremendously.
His team had wanted to do a Furlow Palatoplasty or Z-plasty to improve his speech because it had become more nasal. However, we once again chose an alternative route with amazing success despite only completing about 10-15% of the procedure. The healing time is about the same as the z-plasty of 4-weeks. There are absolutely no food texture restrictions and he was eating normally minutes after the procedure. The hardest part is the wound care stretches every 3-4 hours through the day/night.
Disclaimer: If you have chosen to do any of the procedures we declined to do, this is not a post saying you should not have done them or they weren't the correct decision for your child. I'm stating we didn't do these procedures for background purposes for my particular child so you have the whole picture of what we have and haven't done. I have also found that most teams are not open to revising tongue ties, especially posterior ones due to possible occlusion of the airway. We too have been repeatedly told this same theory, however it has not been the case for our son, nor our non-cleft affected ultra mild PRS daughter whom we revised her anterior tongue tie at 3 days old and her posterior tongue tie at 3 months with one of the experts in posterior tongue tie Dr. Bobby Ghaheri, ENT in Portland, Oregon (www.drghaheri.com)
This post is for alternative treatments not suggested or supported by our team that we have had phenomenal results from and that we have submitted to our team who begrudgingly acknowledged they "may" have had a positive influence on his improvements.
