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Tongue Tie Question - Page 11

post #201 of 346
Well, I rubbed some rescue cream on T's belly and popped an aconite in her mouth before we walked into the doc's office. I'd been talking to her all day about going to see the special doctor who was going to look in her mouth. She was pretty darned relaxed for the whole thing and fell asleep as soon as we got back into the truck.

The doc was nice, really thorough and not condescending at all... heh, he said I sound like a HCP... that I had done my research. I liked that he's not pushy and even though he's been in practice for over 30 years, he seemed open to new things. Like posterior tongue ties. Which he's never addressed before. But, I did have the AAP paper on congenital tongue ties for him...

Anyhoo, he said that he could clip her upper lip tie and that she definitely has some residual anterior tie that should be taken care of. But first he wants to do a swallow study, and then we'll decide how to proceed after that. He carefully took all of our allergy info and my concerns about corn free interventions, so I guess we'll see how it goes. The swallow study probably won't happen until January.
post #202 of 346
Wow- that guy sounds pretty thorough! How do you keep finding all the good docs?
post #203 of 346
Quote:
Originally Posted by changingseasons View Post
Wow- that guy sounds pretty thorough! How do you keep finding all the good docs?
I'll bet she uses her magic crystal. :
post #204 of 346
i have a question...i have a 7 year old ds with a history of eczema from birth, extreme difficulty breastfeeding, speech issues, and food allergies. i wish i had known about this when he was a baby. from the description FF gave earlier in the thread, i believe he has both posterior & anterior TT. he has since learned to compensate for most things, but the sleep apnea thing is getting to me. also the food allergies, dentition, etc.

i have located a dentist/oral surgeon in our town who will do laser surgery for the TT, but wondered if it is worth it at this point? I have a feeling i will do it anyways, but want to know if i need to have him in for CST also at this age?

I have SUCH guilt over the issues we had when he was a baby, but i know that what's done is done.

any help is greatly appreciated.

thanks!

Jamie
post #205 of 346
Quote:
Originally Posted by mtn.mama View Post
Well, I rubbed some rescue cream on T's belly and popped an aconite in her mouth before we walked into the doc's office. I'd been talking to her all day about going to see the special doctor who was going to look in her mouth. She was pretty darned relaxed for the whole thing and fell asleep as soon as we got back into the truck.

The doc was nice, really thorough and not condescending at all... heh, he said I sound like a HCP... that I had done my research. I liked that he's not pushy and even though he's been in practice for over 30 years, he seemed open to new things. Like posterior tongue ties. Which he's never addressed before. But, I did have the AAP paper on congenital tongue ties for him...

Anyhoo, he said that he could clip her upper lip tie and that she definitely has some residual anterior tie that should be taken care of. But first he wants to do a swallow study, and then we'll decide how to proceed after that. He carefully took all of our allergy info and my concerns about corn free interventions, so I guess we'll see how it goes. The swallow study probably won't happen until January.
So nice to hear you had a good experience!

We saw the SLP yesterday, along with an OT. The SLP felt the fact that Ellie's tongue extends past the gum ridge but not past her lips was not too unusual for her age. She also liked what she saw Ellie do in terms of side to side movement. She felt all around in her mouth and got a good look and didn't see or feel anything that seemed to be anchoring her tongue. But, Ellie's range of motion with her tongue elevation was not so great and she keeps her tongue bunched up rather than spreading it out. So we're still on the fence as to whether there is a tt going on. We'll see what the ENT says on the 7th. In the mean time the SLP wants to see Ellie for a few visits to address her choppy jaw movements and her tongue issues and suggested we see a P.T. Both the SLP and OT felt the real problem is postural instability due to poor muscle tone in her trunk, shoulders, and neck. This is the same analysis that came out of the SLP / OT eval's almost a year ago so maybe that explains all of her feeding issues. But it really doesn't explain the range of motion issue. So I'm still confused...:
post #206 of 346
hmmm, you may need to talk to someone who knows their stuff in regards to feeding (and from the breastfeeding paradigm as to what is physiologically normal. What you are describing is not.) I'm certain your OSLP/OT are great...but again this isn't their training. Think about what a simple TT alone does in terms of structure. It affects the entire body. I'm now saying your dd is-I haven't seen her. All I'm saying is that they are seeing things from their perspective which is great, but that's why you need a range of opinions. I jsut posted this in another thread but it's like the blind men and the elephant. They see things from THEIR perspective.

http://www.noogenesis.com/pineapple/..._elephant.html

So...yeah. They've likely been seeing posterior ties for years but have their own way of describing it. Sure they can optimize the function of the person to the best of their ability and they likely do see progress. But what would have happened if the primary cause was dealt with?

Again...not saying one way or the other....just something to think about.
post #207 of 346
I'm very appreciative of this thread and glad I found it! I have some questions though - perhaps someone can give me more info on some of what you've all referred to in various posts.

What is/where can I find the "CSS thread"?
Where can I get more info on diagnosing a posterior tt? It sounds like there's an article?

Thanks in advance!

Our probably overly long story, considering I'm writing about a 3-week old

My dd had a labial tt clipped at 6 days of age; we had a HBAC and she latched on beautifully within minutes of birth, but the very first thing I noticed when my midwife handed her to me was that her frenulum was attached right at the tip of her tongue (nice elevation, but perfect heart-shaped tongue tip). She went from latching well to not latching at all when my milk started coming in, lost a ton of weight and scared me, then started latching again but causing nipple trauma once my milk supply was plentiful. Our ped (who will at least clip ties, I know many MDs won't even address them) didn't think clipping would make a difference, but my midwife, LLLL/IBCLC friend, and I all felt it would be a good idea, so I had him clip it anyway - I really appreciate that he tends to leave decisions like this up to the parents! I talked to her about the clipping the night before (didn't even think about homeopathy, darn it!), and the only real "trauma" she seemed to experience was being MAD about the restraint, she nursed immediately after clipping, and clearly was enjoying having greater tongue mobility.

But. . . we're still having bf challenges. She's gaining incredibly well (over 1.5 oz a day at her last weight check a week ago), but I think this was partially due to me having a huge supply of milk which is slowly dropping and she's actually having to work a bit to get milk, which she doesn't like. I've already had one round of mastitis and am constantly having plugged ducts. I'm experiencing slight nipple soreness, especially at the tip, some misshaping of the nipple after she nurses (very slight lipstick tip appearance), blanched nipples after nursing. Her suction isn't great and she seems to "fall" off the breast easily. I cannot get her to open as wide as she should or to really flange her upper lip well. I started really looking at her mouth over the last few days and am suspicious she has a labial tt as well, but don't really know how to diagnose this. None of us (ped, midwife, IBCLC) had checked her other frenulums - argh! And I've heard a bit about posterior tt from my LC, but she's only heard a little about it, so we don't know if this is also a consideration.

I'm planning on talking to another IBCLC tomorrow about the possibility of a labial tt; I'll also ask her about posterior tt. And I have a lead on a local CST, which I've been considering a trial of as well, but don't know much about it.
post #208 of 346
Here's a link to the article: http://www.aap.org/breastfeeding/8-27%20Newsletter.pdf

CSS is the C-Section Syndrome and Allergies thread... its about allergies being linked to use of antibiotics and gut dysbiosis, not just cesearean birth.

It sounds like you're on the right track! Keep searching!

Lisa
post #209 of 346
post #210 of 346
I'm prepping for our ENT appointment tomorrow and could really use abstracts / links to articles looking at tt and the connection to food intolerances. I don't have faith that my ENT is going to come into the appointment believing in that connection so I would like to know exactly what studies have been done. Can anyone help me? I was not successful with a Pubmed search of food intolerance and ankyloglossia or tongue tie.

I'd also love to hear an update from CS and Tracey and anyone else who has had a recent clipping on how its going.

My fear is that we will come out of the appointment still not knowing if she has a tt, but the ENT will instead focus on the frequent ear infections (she had one as of Saturday and I'm guessing still does) and will want to do tubes.
post #211 of 346
Quote:
Originally Posted by Panserbjørne View Post
hmmm, you may need to talk to someone who knows their stuff in regards to feeding (and from the breastfeeding paradigm as to what is physiologically normal. What you are describing is not.) I'm certain your OSLP/OT are great...but again this isn't their training. Think about what a simple TT alone does in terms of structure. It affects the entire body. I'm now saying your dd is-I haven't seen her. All I'm saying is that they are seeing things from their perspective which is great, but that's why you need a range of opinions. I jsut posted this in another thread but it's like the blind men and the elephant. They see things from THEIR perspective.

http://www.noogenesis.com/pineapple/..._elephant.html

So...yeah. They've likely been seeing posterior ties for years but have their own way of describing it. Sure they can optimize the function of the person to the best of their ability and they likely do see progress. But what would have happened if the primary cause was dealt with?

Again...not saying one way or the other....just something to think about.
I've been thinking of the blind men and elephant story lately with Ellie. I thought you might get a kick out of this -

I've taken her to a SLP, OT, General Pediatrician, Developmental Therapist, and Chiropractor recently and presented the same information to each. Here is their take:

General Ped thinks she's doing great and we just need to give her some extra time to learn how to take solids since we started so late in giving them. Her atypical crawl is "cute" and she's getting around fine so nothing to worry about.

Developmental Therapist says she's right on track developmentally except a bit delayed with expressive language, possibly as a result of the reflux but nothing to worry about. Let's consider a speech eval at 18 months.

SLP and OT say she has poor coordination of her tongue and are concerned about poor trunk strength leading to postural instability and think we should see a PT.

The Chiropractor says the signs of postural instability (head tilt when walking, inability to be in a hands and knees posture) are because of misaligned hip - maybe hip dysplasia - and she thinks we should get an ultrasound or x-ray of her hip done.

The SLP, when presented with the hip theory, felt the hip issue is further evidence of overall low tone/ postural instability.

These are the answers I'm getting in my quest to unlock the mystery of dd's tongue.
post #212 of 346
Hugs, mama. I know how hard this can be. I also don't want to give the impression that tongue tie is the end all be all and will fix everything. All of the compensations she has aren't necessarily DUE to the tie, but happen along with. Fixing the tie doesn't solve everything, but it certainly frees up some of the structure and allows the chiropractic and OT stuff to be further integrated. It's a piece of the puzzle, but one that should (IMO) be addressed.

I had a similar experience with dd. She had all kinds of crazy diagnoses. It was our PT that really ended up knowing what to do. However without our IBCLC and homeopath we wouldnt' have gotten to where we did.

I found that people in the medical field had WAY too broad a spectrum of "normal" that they were willing to place kids in because they don't have other tools to deal with the variations. Granted there wasn't a whole lotta "normal" going on with my kiddo....but the areas that she needed the most help in they didn't even seem to acknowledge.

I dont' think that there is ONE practitioner that can solve everything. It's why it was so important to me to have a team. You are doing a great job. It's important to remember that you ARE getting information. No one person can know everything and your practitioners are doing what they can for your little one. It may be tough to recognize and appreciate when you feel like your baby isn't getting the "best" care. But information comes when we are ready and you are moving forward.

I will try to pull some things and post for you before I have to go to class!
post #213 of 346
Quote:
Originally Posted by LaurieG View Post
I've been thinking of the blind men and elephant story lately with Ellie. I thought you might get a kick out of this -

I'm gonna chime in for a minute so you don't feel too frustrated!

I've taken her to a SLP, OT, General Pediatrician, Developmental Therapist, and Chiropractor recently and presented the same information to each. Here is their take:

General Ped thinks she's doing great and we just need to give her some extra time to learn how to take solids since we started so late in giving them. Her atypical crawl is "cute" and she's getting around fine so nothing to worry about.
Ped's are great for looking for pathology. You want them on your side if your child has an infectious disease, seizures, blood disorder and the like. They know very little about structure, but they are doing what they know to do.

Developmental Therapist says she's right on track developmentally except a bit delayed with expressive language, possibly as a result of the reflux but nothing to worry about. Let's consider a speech eval at 18 months.
I'm glad she's letting you know her perspective. This is one that wouldn't have had the clinical experience with the new info on tongue tie. Reflux and tongue tie are quite connected so you are connecting hte dots here.

SLP and OT say she has poor coordination of her tongue and are concerned about poor trunk strength leading to postural instability and think we should see a PT.
Awesome. They are seeing something they don't consider to be "normal" and are referring you on to someone who could better evaluate and address the situation. Of course it's all connected but I doubt they would be up on the newest TT info which is really circulating the most rapidly in breastfeeding circles. Regardless they are seeing a deviation from what they want to see and are being helpful with referrals.

The Chiropractor says the signs of postural instability (head tilt when walking, inability to be in a hands and knees posture) are because of misaligned hip - maybe hip dysplasia - and she thinks we should get an ultrasound or x-ray of her hip done.
In a perfect world the chiro would coordinate with the PT. They aren't saying very different things when all is said and done. Instability will of course require individual compensations. If there is compensation at several different points (my dd had this) the picture gets very muddled.

The SLP, when presented with the hip theory, felt the hip issue is further evidence of overall low tone/ postural instability.
Could be, or it could be part of what caused it. chicken and the egg, but regardless it doesnt' matter a ton if it's being addressed and structural balance is being sought.

These are the answers I'm getting in my quest to unlock the mystery of dd's tongue.

All in all what you are doing is information gathering and it's GREAT. It's quite similar to what I did with my dd. The only difference really is that a. I started at birth because she was in rough shape from go, and b. I really had no mainstream practitioners in the picture once we found our PT (who is also a CST.) The good thing about that is that everyone who saw her was working from a very holistic perspective. They understood that they each held pieces of the puzzle and noone on their own was right...but together they could be. It was important how the body was functioning as a whole and there was an open dialogue between them all. They helped each other. In a perfect world that is what I would wish for anyone. You are well on your way, mama.
post #214 of 346
Quote:
Originally Posted by LaurieG View Post

I'd also love to hear an update from CS and Tracey and anyone else who has had a recent clipping on how its going.
We're doing pretty good! Between the clipping, us starting homeopathy for DD, and continuing CST... she is really eating a LOT now, and she's gained about 9-10 ounces in the last 2 weeks!! (She hasn't gained that much in probably 4 months total.) I can actually see a difference, and feel it when I pick her up.

I did notice the other day that her tongue is still slightly heart shaped when she sticks it out, but she can stick it out way more than before. The doc said she just did a moderate clip (since DD was quite squirmy), so maybe it just didn't get as deep as it needed to. But I'm happy with the results nonetheless.
post #215 of 346
Quote:
We're doing pretty good! Between the clipping, us starting homeopathy for DD, and continuing CST... she is really eating a LOT now, and she's gained about 9-10 ounces in the last 2 weeks!!
Wow, congratulations on this. You must be psyched.

We didn't have such dramatic results. And I'm finding it hard to find another CST in the area & I just "left" my homeopath. So Adam continues with his poor sleep & weight gain.
post #216 of 346
Quote:
Originally Posted by chlobo View Post
Wow, congratulations on this. You must be psyched.

We didn't have such dramatic results. And I'm finding it hard to find another CST in the area & I just "left" my homeopath. So Adam continues with his poor sleep & weight gain.
I am. Hopefully this little growth spurt will keep her from falling completely off the charts.

And don't get me wrong- we still have crap sleep, scratch-until-you-bleed eczema, and failing food trials all over the place...
post #217 of 346
Oh but its comforting to be on the charts, isn't it?
post #218 of 346
Quote:
Originally Posted by chlobo View Post
Oh but its comforting to be on the charts, isn't it?
Yeah, it is. Is Adam still on them? Have you charted on the WHO charts? I just assumed that my ped was using a breastfed baby chart, but no... they are all still using the old charts. The doc that did the clip gave me the link to the WHO charts, and DD looks SOOOOO much better on them! Actually not even close to falling off (like she is on the old charts).
post #219 of 346
Quote:
Originally Posted by Panserbjørne View Post

I found that people in the medical field had WAY too broad a spectrum of "normal" that they were willing to place kids in because they don't have other tools to deal with the variations. Granted there wasn't a whole lotta "normal" going on with my kiddo....but the areas that she needed the most help in they didn't even seem to acknowledge.

I dont' think that there is ONE practitioner that can solve everything. It's why it was so important to me to have a team. You are doing a great job. It's important to remember that you ARE getting information. No one person can know everything and your practitioners are doing what they can for your little one. It may be tough to recognize and appreciate when you feel like your baby isn't getting the "best" care. But information comes when we are ready and you are moving forward.
ITA with the broad spectrum of "normal". This is something I've really had to adjust to myself, because I often come out of appointments questioning whether I'm a hypochondriac trying to make "normal" into a problem. It's been a process for me to trust my gut and keep asking questions and pursuing answers. I am very grateful for all the people in my and Ellie's life who are taking these things seriously and offering what they can to the puzzle. You are one of those people. I really appreciate all of your incredibly helpful advice and your willingness to spend time and thought helping us.
post #220 of 346
Wow CS, that's awesome!! The weight gain is tremendous. How often are you doing CST?

Chlobo, maybe the results are still coming (hopefully)??
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