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Possible Tongue Tie in Toddler
Update 31-1-13: Surgery has been done!


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#1 Paddlepop

Posted 28 September 2012 - 02:04 PM

My DD is 2yrs 8 mths old. I have just realised that she can't move her tongue in an upward direction ie lick her top lip or point her tongue up towards her nose. She can stick her tongue out in a downwards direction quite well and can wiggle it side to side and can curl the tip of her tongue under her tongue. She can't curl her tongue so the the tip curls over her tongue so that the underside is exposed. She doesn't seem to be able to move it upwards at all.

My DH and I bravely felt inside her mouth last night and the frenulum/frenum that attaches the tongue to the bottom of the mouth is very hard and doesn't seem to be very stretchy at all. It is also quite close to the front of her mouth. When she sticks her tongue right out she has a very small heart shape at the tip of her tongue but my GP and a peadiatric dentist have both said that she doesn't have tongue tie. Her teeth are all through, and normal and healthy. My mother's instinct is telling me that something is wrong though.

She also has a lot of trouble with speech (have seen a speech pathologist) and can't pronounce many words properly. She constantly makes noise though: she almost never shuts up! I have had her hearing tested and it is normal. Eating is another area that she has trouble with. She has only recently started eating meat or anything soft that needs decent chewing. She can easily eat carrot (whole carrot, stolen from the kitchen bench during dinner preparation!), apple and crunchy biscuits.

Has anyone else had a child who couldn't move their tongue upwards or had tongue tie? What did you do about it and what type of doctor or dentist did you see? Obviously I will be seeing my GP and raising my concerns about DD's tongue with her. Just wondering what other people's experience with this type of situation has been.

Edited by Paddlepop, 01 February 2013 - 01:22 AM.


#2 Paddlepop

Posted 28 September 2012 - 06:55 PM

Anyone?

#3 millie_11

Posted 01 October 2012 - 07:58 PM

Hello - my 2.5 year old was diagnosed with a tongue tie straight after birth and it was snipped when he was 4 days old - but the hopefully useful thing I wanted to mention was that there is a current thread about this exact topic in the 5-8 year forum with a number of experiences in there. Hopefully that will help.



#4 Jenflea

Posted 01 October 2012 - 08:08 PM

I've got a 2.5yr old with almost word for word the exact same thing!
Except she's never had a problem eating (or breastfeeding) but we've noticed she can't get her tongue to point up towards her nose.
I've had her hearing tested and am waiting to get her speech assessed(my parents think she's behind, i doubt it but am willing to be told yea or nay by a professional, not a grandparent with less than perfect hearing. Rant over lol).
She has lots of words and puts 2 or 3 together, BUT her pronunciation isn't good.
She also never stops vocalising! Drives me a bit nuts somedays lol.
So, no real help but almost identical position.


#5 Paddlepop

Posted 02 October 2012 - 08:42 PM

millie_11 Thank you for telling me about the thread in 5-8 years. I have read it now, and wouldn't have known about it otherwise. I am on holidays where anything requiring digital reception is very patchy, ie TV, mobile phones and mobile internet, so I am currently EB starved until night time when the signal improves unless the wind blows. It took me a while just to get enough signal to get onto here tonight!

Jenflea I have an appointment for my DD to see our GP next Wednesday to I will update you with what happens. I'm currently on holidays with DH, DD, my mum and dad and my brother and his DDs. Mum and Dad can both see that there is something wrong with DD's tongue. At least I know now that it isn't just me being paranoid!

Edited by Paddlepop, 02 October 2012 - 08:44 PM.


#6 crackles

Posted 02 October 2012 - 09:28 PM

My ds had a really severe tongue tie that wasn't diagnosed til he was nearly 1! He had no problem bf or eating so we didn't pick it up (would have thought it was picked up at birth tho)   It got picked up when we went to see paedeatrician about a totally unrelated issue. We got it operated on day after his first bday.
Most drs etc aren't concerned if the child can poke their tongue out just past their bottom lip

I'd get it checked out if I were u tho sounds like it will(does) hinder speech

#7 Paddlepop

Posted 10 October 2012 - 09:19 PM

Justed wanted to update after taking my DD to our GP today. She agreed that DD does have a tongue tie and has referred us to have a specialist look at it. We'll be seeing the surgeon who removed my wisdom teeth in August. I'd already made an appointment with the specialist before I saw the GP, and that appointment will be in 3 weeks.

I'm annoyed that it took watching Embarrassing Bodies on Ch.9 for me to realise that she was tongue tied when I've had my GP check my DD quite a few times, and paid a fancy paediatric dentist $186 to be told that she didn't have tongue tie. The paed dentist checked that she could put her tongue out and down but didn't bother to check the upward movement of her tongue. He put a drop of water on her upper lip for her to lick off but she didn't. She wiped it off with her hand instead. He then didn't try again to get her to move her tongue upwards. I won't be going back to him again. And she does have the typical heart-shaped tongue tip but all of the health professionals I saw said that it was small and didn't matter. It might be small to them but it matters for my DD's speech.

Has anyone had a child go through tongue tie surgery, and have any tips/hints/info about helping my DD through the recovery? She will be at least 2y9mths by the time she has surgery.

#8 amanda1982

Posted 10 October 2012 - 10:32 PM

Hi there,

My son, now nearly 5 also had a tongue tie. He was unable to tolerate lumpy foods. After so many doctors appointments, and not starting to speak his speech therapist finally diagnosed him with a tongue tie. He had the operation when he was 18 months.

The operation was so quick I didn't even have time to go and grab a coffee, he was in recovery and awake in no time and we were going home an hour later. That afternoon he was running around and was eating properly that night. He wasn't in any pain and would definitely recommend it even though our paediatrician said no studies shows it helps?????

Lots of cuddles, yogurt and ice cream and she will be fine in no time.



#9 ros_g

Posted 24 October 2012 - 11:14 AM

It is interesting to see that many of you say that speech has been affected by tongue tie. my DD1 & my DS both has tongue tie & both were released when they were around 1 month old.

In both cases the paediatricians (after birth) said its nothing to worry about & that as long as it doesn't affect b/f then nothing needs to be done. - most GP's also have this idea.

Both of mine did have trouble b/f & after seeing a lactation consultant with DD1 who had done studies in the UK we decided to have it released. Her studies did show that issues can arise later in life with speech & removing food from teeth & not being able to 'french kiss' as she put it Tounge1.gif

Good luck with the surgery Paddlepop - she will be fine!

#10 Paddlepop

Posted 24 October 2012 - 01:49 PM

Thanks ros_g. A few days ago there was a thread in the birth to 6 months forum about tongue tie and lucky 2 suggested that I look up the work of Dr Brian Palmer in the USA. He did a lot of research and work about tongue tie and the problems associated with it. His website is http://www.brianpalmerdds.com/

One of the associated problems can be a tight frenulum between the upper lip and upper gum that can cause a large gap between the two front teeth. My DD has this. We're planning to have this cut when she has her tongue tie cut.

I had a phone call today from the clinic of the stupid fancy paediatric dentist that I took DD to who didn't properly check for tongue tie. They said that she was due for her 6 month check up and would I like to make an appointment. I told them that I wouldn't be returning to their clinic because the dentist failed to diagnose her tongue tie that now requires surgery. The dental assistant that I was talking to sounded shocked, asked for more details, apologised for the mistake and said that she would pass along the message to the dentist. That felt quite satisfying!

The stupid fancy paediatric dentist also said at our appointment that a tight upper lip frenulum didn't cause a gap between teeth, and was an old fashioned idea.  rant.gif

If anyone would like to know who he is, please PM me. He is in the inner western suburbs of Brisbane.

DD's initial consult with the dental surgeon is in one week. She is really excited about having her tongue fixed, but then is worried that it will hurt. I reassure her that she will have medicine so that it doesn't hurt and then she gets excited again.

#11 Paddlepop

Posted 31 October 2012 - 10:39 PM

Just an update for anyone who is interested.

We saw the dental surgeon today and he could easily see that DD has a tongue tie. He will do the surgery, and will also release her labial frenum (upper lip to upper gum) in the same operation. However, he said that at her age he needs a speech pathologist to refer her and state that the tongue tie is affecting her speech and request the tongue tie be released. I was very surprised by that.

He explained that for some children who don't really have a problem with speech who have the tongue tie released can have their speech affected badly. She will also need speech therapy after the operation to help her learn how to use her tongue with its increased movement. I'm still a bit confused and annoyed needing a speech pathologist to do the referral, but I guess that it is to get the best possible result. I have contacted the speech pathologist who has previously treated DD to ask for a letter and to organise therapy after the surgery. The dental surgeon will also be contacting her for the letter.

Regardless, I have booked her surgery for 11 December this year, and will get a letter from a speech pathologist even if I have to just go through the Yellow Pages until I find someone who will write it for me. She needs the surgery and I'll make sure that she gets it.

While I was there with DD (and DH) the dental surgeon checked the holes left from my wisdom teeth removal that he did 2 months ago. He was very keen to check his work and see how I was healing. He was satisfied with his work so that was good!

#12 *~dee~*

Posted 06 November 2012 - 10:44 AM

My DD had a moderate tongue tie at birth, breastfeeding was always painful and she would never take a bottle or dummy. Dr's told me they only clip it if bub won't feed properly, so left my DD's. As she got older she gently stretched it with poking out her tongue etc. As a bub she couldn't get her tongue past her lips. She has not had any problem with any food groups or talking (she is not quite 3 and is talking like a 4-5 year old).

Good luck with the possible surgery.

#13 Paddlepop

Posted 06 November 2012 - 04:04 PM

Glad to hear that your little one hasn't had any problems *~dee~*.

I've arranged an appointment with DD's speech pathologist from earlier this year and she is happy to write a letter to the surgeon. Unfortunately for us (but fortunately for her!) she won't be able to provide the post op therapy because she will be on maternity leave. I'll have to find someone else to do that.

Does anyone have any recommendations for a good speech pathologist in the Indooroopilly/Toowong area in Brisbane?

#14 Paddlepop

Posted 20 November 2012 - 01:29 AM

I'm not happy with what has happened with organising DD's surgery. Currently it is cancelled. Because of the speech pathologist (SP). In her opinion DD's tongue tie is not severe enough to justify surgery, and DD's speech issues are independent of her tongue tie. I'm angry.

The SP rang me this morning "to give me a heads up" that the surgeon would be ringing me in the afternoon to cancel the surgery. Why was he cancelling it? Because of her stupid fence sitting letter that didn't really recommend or advise against surgery. The surgeon rang her and discussed DD, and decided that he couldn't justify doing it without the recommendation of a SP because during their conversation she said that she wouldn't recommend surgery. I made it clear to her that I would not be requiring her services again, and that I would be getting the surgery done regardless of her opinion.

The surgeon rang me this afternoon. While I can understand his reasons, I'm angry that DD's tongue tie is very obvious and affecting her speech, but he won't do it without a recommendation from a SP. Never mind that tongue tie also contributes to dental decay because the tongue can't move freely around the mouth and over the teeth to clean food off. And her upper labial frenum is now causing her front teeth to grow crookedly. No, because SP says no, DD will now have to suffer. And require orthodontic work later to correct her teeth instead of fixing it now before problems occur.

He has agreed to do the surgery if I can get a letter from another SP, and will slot her onto the end of a surgery list ASAP even if it is full. To me, this indicates that he thinks the surgery is warranted. I'm confused.

As soon as I had finished talking to the SP (I think I actually hung up on her) I rang my GP and have booked DD in for Wednesday to get a referral to a paed. to get the surgery done. I have also rung 2 other SP practices and am waiting for them to return my calls.

DD needs the surgery. She will be having the surgery. The sooner the better, and it would have been in 2.5 weeks if the SP had said yes. It still might be if I can get into a SP and get the letter in time.

The SP also seemed to think that DD should be in childcare instead of with me. I'm a SAHM. Why? So that she'll cope better with separation anxiety when she starts Prep. WTF?? She isn't due to start Prep until 2015. On the rare occasion that we have actually had a babysitter for DD she has been perfectly happy while we have been gone. No crying or upset at all once she was reassured that Mum and Dad would be back later. Such stupid reasoning.

#15 Prickly

Posted 20 November 2012 - 05:21 AM

By all means I think you should get a third opinion, but don't be surprised if they agree that the surgery is unwarranted.
If the paediatric dentist didn't think it was serious, and the speech pathologist concurs - then it sounds like it isn't as bad as what you think.
It is easy to want to go for the 'quick fix' - but surely the SP has recommended therapy to improve your child's speech & possibly some oral exercises to stretch the tissue that is tight ?

All the best & I hope that your daughter receives the right outcome for the problem.

#16 MrsLexiK

Posted 20 November 2012 - 05:27 AM

I have you agree with the pp above. Perhaps it is not as bad as you think if only an adult dentist is the one thinking it needs to be done. If the SP and the paeds dentist thinks it is ok it might actually be ok and another issue causing her speech problems.

#17 I'mBeachedAs

Posted 20 November 2012 - 06:08 AM

There can be a few types of speech difficulties and not all of them are related to structure or function of the oral musculature. Perhaps your daughter presents with one of the other types in which case the sp may think that you could have the surgery but still end up with the same speech difficulties afterwards because the root cause has not been fixed. Obviously I don't know your daughter from a bar of soap but just throwing that out there as a possibility as a paed sp myself.

#18 corbel

Posted 20 November 2012 - 06:54 AM

The route you are going down sounds really odd to me TBH. Firstly if the tongue tie is severe it shoudnt just be "snipped". The operation used on older children with moderate to severe tongue ties is called a z-plasty and cuts into the underneath of the tongue to remove some of the sinew as well and cuts along in a z shape to reduce the likelihood of the tie growing back as they often will. Also I havent heard of a child needing follow up speech as if the child's speech is being so severely affected by a tongue tie then they will be getting speech regardless, so no need for speechie shopping for a referral either. I am assuming your dentist is a maxilofacial surgeon? If so he would be very aware of the inherent risks of any surgery and needs to ethically justify such a procedure if he decent Dr. The recovery is quite painful for an older child and due to the swelling can result in breathing obstruction. I was also required to sign a consent form that acknowledged that it is unlikely that having the surgery would have a significant impact upon my child's speech, as it is very rare that the tongue tie is the only cause of a speech problem. My advice is that if you are determined, then consider going through the tongue tie clinic at your local childrens hospital. Yes it may take longer, but you are guaranteed to have reliable and thorough assessments. Good luck and I hope your DD gets the right outcome in the end.

#19 Paddlepop

Posted 20 November 2012 - 12:32 PM

Yes, the surgeon is a maxillofacial surgeon and he will be performing a z-plasty. I think that you are right corbel that he needs to ethically justify the surgery. He is a decent doctor, and very skilled, which is why I want him to be the one to do the surgery. If I'm going to have my DD go through surgery then I want it done properly.

No, my DD isn't receiving speech therapy currently. The sp.path. didn't recommend it, nor did she suggest any tongue stretching exercises. DD's tongue tie tissue wouldn't be able to be stretched anyway because it is so tight.

I'mBeachedAs Yes DD probably does have issues unrelated to tongue tie. I fully acknowledge this. It doesn't alter the fact that her tongue doesn't move upwards at all, and surely this is going to make speech difficult. I know that she can't make any sounds that need the tongue to go upwards. I don't know why the SP didn't think this was an issue. It seems strange to me.

I wasn't aware that there are tongue tie clinics at children's hospitals. Thank you for that information corbel. I will look into it and see if Brisbane has any.

I know that I may sound like a bit of a demented mother who is ignoring other possibilities for speech difficulties. I know that there may be/are other issues for my DD. However I know that the tongue tie is a problem for my DD.

#20 Paddlepop

Posted 22 November 2012 - 11:22 PM

Some further updates. I have managed to get an appointment with a speech pathologist in 2 weeks who is supportive of tongue tie release. In her experience it needs to be done and the children then do really well with improving their speech. I was upfront with her about needing a letter for DD's surgery, and she is quite happy to write the letter once she has had an appointment with us and has checked out DD's tongue and speech.

The SP will also give me some exercises I can do with DD after the surgery until she starts working again in late January. She is already quite booked up until about April but will try to fit us in somewhere in Jan/Feb/March for a 6 week block of speech therapy, and then we will assess the need for further therapy after that.

I have also seen our GP and explained everything to her. She has given me the names of 4 paediatric surgeons who do the surgery. One is through the public hospital and the other 3 are private. She will write a referral for DD if I decide to go ahead with any of them. She definitely agrees that DD needs the surgery done, and could see how the tongue tie has gotten worse since she last saw her. She also agrees that it is essential that it is done for the issue of dental health as well.

I'm feeling much calmer now, and much more hopeful of getting the surgery done. I'm going to stick with trying to get the surgery done by the maxillofacial surgeon because he is a great surgeon, and I know that he will do a great job. Another big reason I am going to stick with him is the very large probability of getting the surgery done this year. I know that the sooner we get it done, the better.

#21 Paddlepop

Posted 10 December 2012 - 01:54 PM

Another update for anyone who is interested.

I was very surprised to receive a phone call from the surgeon's office at the end of November asking how I was going with obtaining the required speech pathologist letter to allow DD's surgery to go ahead. I told them that we had an appointment booked for the following Tuesday, and they said that they would speak to me again after that.

We had the appointment with the speech path. last week, and she was really good. DD loved her after some initial shyness (normal for her) and is still telling me about things that she did with the speech path. She agreed that the tongue tie is impeding DD's speech and would most likely benefit from having it released. She had a report written for me by the end of last week, and I have forwarded it to the surgeon today.

The surgeon's office did call me the day after DD speech path. appointment and I told them that the report would be prepared by today at the latest. I now have to wait for the surgeon to read the report and be satisfied with it to get the approval for surgery and get a date for surgery. He is out of his office all week because he is doing surgery every day this week, so I probably won't hear from them until next week. I'm disappointed about that but DD currently has a cold so she wouldn't be able to have surgery yet anyway.

I would just like to have a date booked (I like to be organised), and really want the surgery done before Christmas. This is because we will be staying with my mum and dad for about a week at Christmas, and seeing lots of other relatives, so I think that it would be a great opportunity for her to explore the new movement of her tongue with lots of people to encourage her. And she could practise licking with Mum and Dad's dog who loves to lick her. wink.gif

What has been surprising is that finding out that DD appears to have dyspraxia. The speech path. is the one who suspects it, and certainly believes that DD has verbal dyspraxia, and probably motor dyspraxia. No other health professional has suggested this but it makes sense after doing some reading about dyspraxia. It explains a lot of things about DD's development in general eg slow to sit up, slow to roll, didn't crawl until 14 months, didn't walk until 21 months. I'm now planning to have her formally diagnosed so that we can make sure she gets the therapy and intervention she needs to develop as fully as possible. If anyone has the name of a good developmental paediatrician in Brisbane, please PM the name to me.

In summary, we are now waiting to hear from the surgeon about surgery, and will be having further therapy with the speech path. early next year when she has some spare appointments. We are also planning to get DD properly assessed for dyspraxia.

#22 Paddlepop

Posted 13 December 2012 - 02:14 PM

Surgery is approved and booked!  eexcite.gif

I rang the surgeon's clinic yesterday to ask whether he had read the report yet or left a message for me, and the receptionist (different to Monday) said that she would leave a reminder note for him. I got the impression that he wasn't in theatre all week and was actually at the clinic doing consultations.

I received a phone call today from yet another receptionist to say that the surgeon had read the report and agreed to surgery. He is completely booked out for the rest of the year and is then on 4 weeks of leave, so DD is booked in for 31 January next year. I'm disappointed that we have to wait until then but at least we can get the surgery done with this surgeon.

Now we just have to wait until surgery day.

#23 Paddlepop

Posted 30 January 2013 - 04:27 PM

Surgery has been delayed because of the possible water shortage in Brisbane. The hospital has chosen to cancel all surgery tomorrow in case they run out of water for the cleaning of the theatre and surgical equipment.

I'm disappointed, and had been preparing DD for the surgery tomorrow. Thankfully we have been able to rebook for Tuesday next week. The waiting continues.

Edited by Paddlepop, 30 January 2013 - 04:30 PM.


#24 Paddlepop

Posted 30 January 2013 - 04:27 PM

dp

Edited by Paddlepop, 30 January 2013 - 04:28 PM.


#25 Jax12

Posted 30 January 2013 - 04:52 PM

Oh no...

It was really interesting to read through your updates.  DS had a tongue tie which we noticed immediately, but the hospital really discouraged having it snipped.  A lactation consultant that visited me at home after we were discharged put me onto a GP who specialised it in.  Unfortunately they were booked for two weeks and we lived rural (delivered in the city and stayed for a week after), so went to a different doctor that they recommended and she was TERRIBLE!!  Blunt scissors, can you believe it?  She got a second pair and was still hacking away saying, gee, these aren't very sharp are they?  The bedside manner of a cold fish as she went to town at our 6 day old's mouth.  She finished by saying, well, he's never going to be able to stick his tongue out very far but it's better than nothing.   ohmy.gif rant.gif  DS still has a bit tongue tied and has the heart shaped tongue you were referring to, but luckily I don't think it's interferring with his speech.  I've also read (not sure how accurate this info is) that the tongue grows from the tip as well so it may become less severe/noticable as he grows.  I'm certainly hoping so because that woman still makes my blood boil thinking about it.

Good luck with the surgery when it's rescheduled and hope you're keeping safe during these floods.




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