Tongue Tie Question - Mothering Forums

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Old 11-25-2008, 03:46 PM - Thread Starter
 
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DD's pediatrician yesterday confirmed that DD is tongue-tied. Her pediatrician was leaning towards doing nothing about it because DD is already 6 months old and it is not significant, but is willing to support us if we decide to get it clipped. She mentioned her last patient who had it clipped had no improvement afterwards (not sure what the issues were). The pediatrician is looking for a doctor who will clip it (she doesn't want to do it considering DD's age). I am definitely leaning towards getting it clipped but want to make sure I have fully thought through all the pros and cons.

I know the tongue tie likely contributed to DD's food intolerances and the difficulties we had with breastfeeding, but I assume the damage is done and even if we have it clipped we still have a long road ahead of us in healing her gut. And we have worked through the breastfeeding issues. But I am afraid if we don't clip it the tongue tie will continue to cause gut damage. Also, she is gaining weight very slowly and I wonder if she could feed better and gain some weight if we had it clipped.

Any thoughts? Has anyone gone through this? If so, how did it go?

If Firefaery is reading I would be really interested in your thoughts!
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Old 11-25-2008, 04:05 PM
 
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Ooh- I'm glad you started this thread. I really wanted to talk about it more, but seems like we really derailed the CSS thread so I figured it was better to let it go for a while.

I have an appointment with our ped next week, but I am almost certain that DD is tongue tied. I'm also curious about doing it this late in the game. I had all the symptoms of tongue tie through the first year of BFing, but we also seem to have resolved our BFing difficulties- except for the occasional clicking or loss of suction.

Oh- did your ped say what type of tie it is- anterior/posterior?

I also wanted to share that I finally got around to asking my mom about MY tongue tie. She said that she was pretty sure that I was older (than DD is right now) when I had it done, and they did it because I was having speech problems. Interesting! So I guess that's something to keep in mind- even if you don't see immediate improvements in gut issues, you could be avoiding other problems in the future.

Sorry for my rambling... DD was up ALL night and I am very sleepy today.

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Old 11-25-2008, 04:19 PM
 
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You might ask in special needs if anyone has addressed this issue due to speech issues. I don't know anything about it.


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Old 11-25-2008, 04:21 PM - Thread Starter
 
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I felt bad about derailing the other thread too! The pediatrician didn't say if it was anterior or posterior. I assume posterior but I don't know. I figure we will get more info from the doctor she refers us to. I am worried about the speech impediment and would much rather avoid any issues by having it done now than have to deal with it later. The pediatrician did say she thought they could just do a simple snip. If she had to be sedated it would be harder for me to do. I really think we will end up having it snipped but just want to make sure I have fully thought through all the issues first!
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Old 11-25-2008, 04:57 PM
 
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We had DSs tie clipped when he was 8 months old.


We have no regrets. He had severely limited tongue mobility. We'd never seen him stick his tongue out or anything. It is likely that he would have had problems when he got older. It can contribute to swallowing issues, speech issues, french kissing, licking ice cream, etc. It's not just a breastfeeding thing.

Also, I would assume that if the tongue doesn't have the mobility to initiate peristalsis then gut damage will continue.

This is just my humble opinion. Hopefully FF will weight in.

ETA: when we had the clipping done there was no sedation necessary. However, the older the more likelihood of needing sedation. Sooner would be my best rec.

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Old 11-25-2008, 05:09 PM
 
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My DP is tongue-tied. He did not have any feeding or speech problems growing up, but he did suffer some teasing because of it.

His biggest issue now as an adult is that food particles will become lodged in areas of his mouth that he cannot reach with his tongue. Plus, certain foods are simply more difficult to enjoy when you do not have a full range of motion with your tongue.

His mother never noticed he was tongue-tied! He only found out when I told him, at age 23. Now that he knows, he intends to have it taken care of when he has better insurance.

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Old 11-25-2008, 05:13 PM
 
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Originally Posted by waluso View Post
I felt bad about derailing the other thread too! The pediatrician didn't say if it was anterior or posterior. I assume posterior but I don't know. I figure we will get more info from the doctor she refers us to. I am worried about the speech impediment and would much rather avoid any issues by having it done now than have to deal with it later. The pediatrician did say she thought they could just do a simple snip. If she had to be sedated it would be harder for me to do. I really think we will end up having it snipped but just want to make sure I have fully thought through all the issues first!
If I were you I'd be assuming anterior actually. There are a surprisingly limited number of professionals who even know about posterior tongue tie, let alone being able to diagnose it. My DD has a slight tongue tie which I never even suspected early on because we had zero nursing problems. She also can stick her tongue out really far. I had never even considered the potential impact on speech though. She has some words and I have never been worried about her speech although it's sure something to keep in mind as time goes on.

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Old 11-25-2008, 05:18 PM
 
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I've been wondering a few things, sparked by that other thread, too. Is it the physical motion of the tongue in the mouth that contributes to gut damage? How does that work? Or is it the daily pressures on the mouth that are in the wrong directions that changes the shape of the mouth (things like high palates)?

I'm trying to understand the causation to help with the risk/benefit analysis. My son's 2y7m at this point, and if cranial-sacral is _required_ in order to get the proper movement going and really get the benefits, then it would need to wait for us (money issues). But in the grand scheme of things, my son's young, and I'm doing a lot to help the kids avoid health problems like I've had, so I want to understand better.

Chlobo--what types of benefits did you see in your son?

ETA: anyone, what about the anterior vs. posterior vs. both thing? Is addressing one without the other a waste of time? And the more systemic effects--are they the same from either?
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Old 11-25-2008, 06:02 PM
 
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Originally Posted by TanyaLopez View Post
I've been wondering a few things, sparked by that other thread, too. Is it the physical motion of the tongue in the mouth that contributes to gut damage? How does that work? Or is it the daily pressures on the mouth that are in the wrong directions that changes the shape of the mouth (things like high palates)?

I'm trying to understand the causation to help with the risk/benefit analysis. My son's 2y7m at this point, and if cranial-sacral is _required_ in order to get the proper movement going and really get the benefits, then it would need to wait for us (money issues). But in the grand scheme of things, my son's young, and I'm doing a lot to help the kids avoid health problems like I've had, so I want to understand better.

Chlobo--what types of benefits did you see in your son?

ETA: anyone, what about the anterior vs. posterior vs. both thing? Is addressing one without the other a waste of time? And the more systemic effects--are they the same from either?
I've never heard of someone having both an anterior AND posterior tongue tie although I'm sure it has happened. Anterior is way more common. From what I have understood regarding the impact on gut health...In certain cases of tongue tie (not all are extreme enough for this to be the case) the swallowing motion is impacted to a degree that proper peristalsis is not initiated and so the critical step in the beginning of digestion basically isn't triggering right and so there can be a lower functioning gut/digestion since the process wasn't started "normally". That was my rudimentary understanding...I'm very open to the possibility I didn't fully understand it so feel free to comment. Also, I don't know how often these things co-exist but my DD was also born with a very high palate. CST has greatly improved it over time and we don't expect it to ever be totally normal but it is so much better and no longer causes her an overactive gag reflex which it once did.

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Old 11-25-2008, 06:28 PM
 
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Originally Posted by DoulaMary View Post
so feel free to comment.


I wish I knew enough to comment! That helped. I am going to go read up on peristalsis.
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Old 11-25-2008, 06:52 PM
 
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It's just as common to have both an anterior and a posterior as it is to just have one. Most people just dont' look beyond the first clipping. Systemic affects are similar (because the cause is similar) but there are notable difference.

Pretty much all babies have high palates (happens when molding occurs and is normal) but the action of the tongue is needed to bring it down. If there is a tie, the likelihood is that it's not gonna happen. There are other reasons for high palates but it seems that most do happen in the context of PTT (which makes sense considering the nutritional angle.)

PP had it pretty much right about digestion. IF the tongue can't mobilize at the midpoint (it's more an issue with posterior ties than anterior ties which are anchored in the front but have decent motion past that) you will have incomplete or partial peristalsis which is of course not helpful in proper mobility. Combine this with the fact that it is rare that minor midline defects happen in isolation (there are often more than one at a time) and one of the biggies that happens with PTT is tight anal sphincters which further hinder proper elimination and you got yourself an issue. If the stool sits too long it can become a breeding ground for bacterial imbalances.

For those deciding to clip an older baby.....think of it this way. Your child has compensatory behaviors at this point. Even if you release the anchor their musculature is designed to function as though it is still there. They need to unlearn the compensatory stuff and learn proper function. CST is one of the best ways to do this-and as a PP stated it can also help to widen the palate which will help with both dental and sinus issues.

It's alot to consider but to me (in my opinion) this is abotu way more than bad teeth or a speech impediment. It has been shown that unresolved TT can lead to sleep apnea. That's a big deal. Now, will it? I can't say that it will, but to me the benefits do outweight the risks.

Older children I know have it done with twilight anesthesia. We have someone a few hours away that uses a laser so that it's cauterized during the process which speeds healing time. Basically once they have teeth unless they are SUPER compliant they are going to need some kind of sedation-that doesn't mean GA.
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Old 11-25-2008, 07:32 PM
 
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It's just as common to have both an anterior and a posterior as it is to just have one. Most people just dont' look beyond the first clipping. Systemic affects are similar (because the cause is similar) but there are notable difference.

Pretty much all babies have high palates (happens when molding occurs and is normal) but the action of the tongue is needed to bring it down. If there is a tie, the likelihood is that it's not gonna happen. There are other reasons for high palates but it seems that most do happen in the context of PTT (which makes sense considering the nutritional angle.)

PP had it pretty much right about digestion. IF the tongue can't mobilize at the midpoint (it's more an issue with posterior ties than anterior ties which are anchored in the front but have decent motion past that) you will have incomplete or partial peristalsis which is of course not helpful in proper mobility. Combine this with the fact that it is rare that minor midline defects happen in isolation (there are often more than one at a time) and one of the biggies that happens with PTT is tight anal sphincters which further hinder proper elimination and you got yourself an issue. If the stool sits too long it can become a breeding ground for bacterial imbalances.

For those deciding to clip an older baby.....think of it this way. Your child has compensatory behaviors at this point. Even if you release the anchor their musculature is designed to function as though it is still there. They need to unlearn the compensatory stuff and learn proper function. CST is one of the best ways to do this-and as a PP stated it can also help to widen the palate which will help with both dental and sinus issues.

It's alot to consider but to me (in my opinion) this is abotu way more than bad teeth or a speech impediment. It has been shown that unresolved TT can lead to sleep apnea. That's a big deal. Now, will it? I can't say that it will, but to me the benefits do outweight the risks.

Older children I know have it done with twilight anesthesia. We have someone a few hours away that uses a laser so that it's cauterized during the process which speeds healing time. Basically once they have teeth unless they are SUPER compliant they are going to need some kind of sedation-that doesn't mean GA.
Gah! Why can you write one stinkin' post and answer questions effectively that 10 of us combined couldn't get out of our docs? And I love our HCP's too - they are great! So...would your opinion be the same regardless of the degree of tongue tie? I have struggled with this decision and if I had known at birth about it I would have had it clipped right away but since I didn't find out about it until she was around 1, we had experienced no BF issues and she can stick her tongue out really far and twist it/roll it, etc. I started hesitating, mostly because the procedure is more complicated now. Thank you for this great info FF!!

Okay: a total other question....pretty sure DD is corn intollerant. Can I assure her safety with any type of sedation? I know that some IV fluids contain corn but I certainly hope she wouldn't require an IV for something so small like this. So...what exactly is twilight anesthesia and what is used??? TIA.

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Old 11-25-2008, 07:37 PM
 
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FF, one follow-on question. Could you list a bunch of midline defects, or tell me where I can read more? Google is telling me major issues, not subtle stuff. You mentioned tight anal sphincter, which would mean kiddo would tend to poop infrequently, yes? I have poopy kids so I'm guessing that's not their thing, but it seems like recognizing these other, interrelated issues can help in terms of figuring out how big an issue this is for any one individual.

Because from a practical standpoint, finding someone who can and will clip an older kid is a non-trivial exercise, it seems.
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Old 11-25-2008, 07:59 PM
 
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some minor midline defects include heart murmurs, pyloric stenosis, reflux, mild neural dimples (and less minor spina bifida occulta), labial adhesions etc. That's all I can think of off the top of my head.....there are others that walk the line and are considered to be far more of an issue.

yes, tight a anal sphincter generally means that the kiddo has infrequent bowel movements (so you see how the tongue tie which can cause reflux and bowel irregularity could be easily attributed to allergies.)
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Old 11-25-2008, 08:08 PM
 
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At what age is it too late to try & wide the palate? We suspect my DD has problems. She labial adhesions & has always had congestions. She's 5. Is that too old?

Also, can anything be done for an adult to widen the palate?

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Old 11-25-2008, 08:13 PM
 
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Gah! Why can you write one stinkin' post and answer questions effectively that 10 of us combined couldn't get out of our docs?
because this is my passion, not my job I have more time to be attending lectures and reading case studies as a student. Also, I am fascinated by these issues that aren't important enough to be classified as pathological.
And I love our HCP's too - they are great! So...would your opinion be the same regardless of the degree of tongue tie?
My opinion isn't all that relevant. There are many factors admittedly. It would depend on the child, the symptoms, the history etc. I think all babies should get clipped, but I'm not certain all toddlers should.
I have struggled with this decision and if I had known at birth about it I would have had it clipped right away but since I didn't find out about it until she was around 1, we had experienced no BF issues and she can stick her tongue out really far and twist it/roll it, etc. I started hesitating, mostly because the procedure is more complicated now. Thank you for this great info FF!!

Okay: a total other question....pretty sure DD is corn intollerant. Can I assure her safety with any type of sedation? I know that some IV fluids contain corn but I certainly hope she wouldn't require an IV for something so small like this. So...what exactly is twilight anesthesia and what is used??? TIA.
Twilight can be as simple as an oral sedative. You can talk with the practitioner about your specific concerns but you should be able to find something safe for her. I would personally not do it if it involved GA. That's just me.
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Old 11-25-2008, 08:18 PM
 
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At what age is it too late to try & wide the palate? We suspect my DD has problems. She labial adhesions & has always had congestions. She's 5. Is that too old?

Also, can anything be done for an adult to widen the palate?
I don't think it's ever too late. You may not see *full* benefit if you wait several years. The other issue is the more you wait the longer it will take and the more expensive it will end up being.....but I really feel you can always make a difference.

I know several CST's (PT's and chiros) that will tell you if a child got CST from birth then there would be no need for braces. Clearly continuous attention is a huge benefit. We used CST to widen ds's palate when his teeth came in crowded and it worked quickly. He was still little though. We went 2-3 times a week.

As an adult I would (and am!) addressing it. I notice a difference-and I just read recently that someone else on this board was doing it and seeing greater spacing between teeth.
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Old 11-25-2008, 09:35 PM
 
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My daughter has no problems with tooth spacing so perhaps her palate is ok. It's just this damn congestion. And I've never met a kid who produces more mucous than her. She gets colds (often) & for a couple of days ends up throwing up mucous that goes into her stomach. Ick.

Now my husband has crowded teeth & congestion so i was wondering if it might help with his congestion? Not that I can get him to do it. More just idle curiosity.

Wish her test results would come in.

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Old 11-25-2008, 10:51 PM
 
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Mary- this information is mostly for you.

I sent an email to the IBCLC that runs the parent support group at Valley Medical Center (that we used to go to) and asked if she knew any doctors in the area that knew a lot about tongue ties. This is part of the response that she sent me:
Quote:
This is quite a hot topic now and there is a doctor in Seattle, Dr. MaryAnn O'Hara, that has her own Breastfeeding Medicine clinic and has a specific interest in posterior tongue tie. She went to the East coast and did some work with a doctor that clips these in her office. She just recently clipped one that I referred to her.
So that's great to know- I wonder if she worked with Dr. Coryllos? I will definitely take her number with me to my ped and see if she will give us a referral.

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Old 11-25-2008, 11:50 PM
 
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I have struggled with this decision and if I had known at birth about it I would have had it clipped right away but since I didn't find out about it until she was around 1, we had experienced no BF issues and she can stick her tongue out really far and twist it/roll it, etc. I started hesitating, mostly because the procedure is more complicated now. Thank you for this great info FF!!

Okay: a total other question....pretty sure DD is corn intollerant. Can I assure her safety with any type of sedation? I know that some IV fluids contain corn but I certainly hope she wouldn't require an IV for something so small like this. So...what exactly is twilight anesthesia and what is used??? TIA.
so how did you find out about the tt? dd sticks her tongue out and moves it around, but we have milk supply, reflux and gut issues so i am wondering about this topic.
i would also like to know the answer to your sedations ques
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Old 11-25-2008, 11:55 PM
 
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Mary- this information is mostly for you.

I sent an email to the IBCLC that runs the parent support group at Valley Medical Center (that we used to go to) and asked if she knew any doctors in the area that knew a lot about tongue ties. This is part of the response that she sent me:


So that's great to know- I wonder if she worked with Dr. Coryllos? I will definitely take her number with me to my ped and see if she will give us a referral.
Fabulous! I have actually heard her name come up many times as a stellar practitioner (through my business listserves and whatnot) but I did not know of her particular interest in tongue ties. I think I will give her a call!!

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Old 11-26-2008, 12:01 AM
 
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Fabulous! I have actually heard her name come up many times as a stellar practitioner (through my business listserves and whatnot) but I did not know of her particular interest in tongue ties. I think I will give her a call!!
Yeah- I'm thinking I might just call her tomorrow too- maybe I can just go see her and skip my ped.

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Old 11-26-2008, 12:45 AM
 
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Changingseasons, do you have contact info for her? We are going to be in that area over the winter, so maybe we would be able to see her. I googled her briefly, but couldn't find anything.

FF, how would you address a tight anal sphincter? And how are you addressing your own crowded teeth? Nutritionally?
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Old 11-26-2008, 12:56 AM
 
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Changingseasons, do you have contact info for her? We are going to be in that area over the winter, so maybe we would be able to see her. I googled her briefly, but couldn't find anything.
We're going to the baby group tomorrow, and the LC is going to give me her info then. I will let you know when I find out! (Remind me if you don't hear from me by tomorrow eve.)

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Old 11-26-2008, 12:58 AM
 
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I don't have crowded teeth, I just have a wacked out palate. My teeth are very even, but there's no space between them. I had braces as a child so my teeth did suffer at one point.

In terms of the anal sphincter I'd say either CST or homeopathy. I can't say what did work as I used both. Dr. C recommends digital massage but I just couldn't do that. Two of my kids who had it both received CST and homeopathy....it resolved in both. Just my experience.
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Old 11-26-2008, 01:56 AM
 
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Wow! I was just thinking about this topic today (that is, the connection between poor tongue coordination and food intolerance). I haven't been keeping up with the CSS thread - its too overwhelming, I'm too far behind, so I didn't know you were already discussing it.

My dd never had a tt, but she had a poorly coordinated suck/ tongue movement as a newborn. I'm really not sure she nurses 'correctly' even now but she makes it work. But she also has a really high palate. I've taken her to CST but her palate is still really high and she has the overactive gag reflex. Wondering now if there is anything else I can do for her. The thing is, the palate is a common thing in girls with Turner Syndrome like my dd. So maybe her head structure just isn't going to allow that palate to come down. Do you think there is something else I can do?

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Old 11-26-2008, 01:58 AM
 
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was she evaluated for posterior TT?

How often do you go for CST? It would take several times a week for several weeks to really see a difference even in an infant.
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Old 11-26-2008, 02:17 AM
 
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Originally Posted by firefaery View Post
was she evaluated for posterior TT?

How often do you go for CST? It would take several times a week for several weeks to really see a difference even in an infant.
Well, I don't really remember now how they came to this conclusion but the IBCLC, OT, and SLT I took her to all agreed that she didn't seem tongue tied although her tongue at times behaved in a similar way. It really baffled them all.

I'm not taking her anymore to CST. I took her 3 times a week for a few weeks as a newborn to a chiropractor who did some CST work, then I took her once a week for a bit to a woman who specializes specifically in CST. I basically ran out of money, not to mention the stress involved in taking her to so many people all the time. So we stopped it on the basis that she seemed to be nursing effectively by then. But she does seem to have trouble now with solids so I'm revisiting the topic.

Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
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Old 11-26-2008, 02:35 AM
 
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Originally Posted by LaurieG View Post
Well, I don't really remember now how they came to this conclusion but the IBCLC, OT, and SLT I took her to all agreed that she didn't seem tongue tied although her tongue at times behaved in a similar way. It really baffled them all.

I'm not taking her anymore to CST. I took her 3 times a week for a few weeks as a newborn to a chiropractor who did some CST work, then I took her once a week for a bit to a woman who specializes specifically in CST. I basically ran out of money, not to mention the stress involved in taking her to so many people all the time. So we stopped it on the basis that she seemed to be nursing effectively by then. But she does seem to have trouble now with solids so I'm revisiting the topic.
The CST has to be ongoing for some time, although of course any amount will be nice. My DD started going to her chiro/CST 3x/wk then slowly tapered to 1x/wk and now I take her once every 4-6 weeks. It's definately not a quick fix kind of thing. I take her to this doc for overall health maintenance and not just her palate but she has been seeing this doc since she was a few months old so....she's been continuously treated for probably 13-14 months now. Totally understand the $$$ issue though. ALL of this stuff sure adds up.

Still a sleepy mama to my fabulous 2 year old girl
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Old 11-26-2008, 02:36 AM
 
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not many people know how to evaluate PTT. I'd start there, were it me.
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