I was wondering whether anyone in the forum has experienced or heard of tongue tie – either directly, indirectly or ever related to TOF/OA… Apparently its a congenital oral anomaly.. and yes, we’ve just found out that Laurie has it.  We found out by accident, the childminder asked yesterday whether we’d been told about Laurie’s tongue, and then explained what she’d noticed.. A few ‘depressed’ hours later and surfing the net, we’ve concluded that it’s the membrane under the tongue which connects it to the floor of the mouth.  Normally this is about half way back but in tongue tie cases; this is attached closer to the tip – as in Laurie’s case.  ‘Little things’ have now all fallen into place!  We knew that he didn’t really stick his tongue out - just thought he was a very polite baby or lick his lips, and at times where he has attempted it, seemed to ‘fork’ but whenever I looked for the fork, it was gone, only show when the tongue stretched..

What I find it hard to believe is that considering the TOF/OA element, how this was never picked up.  Considering we’ve had two ‘via mouth’ dilations and still not noticed.  What we’ve read implies the condition is normally discovered soon after birth, either by the initial midwife check, the 6wk check or problems with suckling/feeding.  Alas, not us, apparently, if this had been noticed, it could have been rectified in seconds in a minor procedure, without anaesthetic at anytime in the first 8mths.  Now, if we did want to do anything, it’s likely to need a GA and a hospital stay.

I feel terribly down in the dumps, something else to worry about – as if we haven’t had enough already as a parent of a TOF.  What upsets me more is the realisation (and why I never realised before!!).  He can’t stick out his tongue, how genuinely sad is that for a little boy not to be able to do..  One of the articles I found stated that its “every child’s right to be able to lick an ice cream and stick their tongue out to their parents”!  Without corrective surgery (if it doesn’t self correct – apparently, that’s ‘possible’) no sticking out tongue, no ‘french kissing’ with his first girlfriend … tears well up just thinking about it.  And, the playground, he’ll be picked on for being even more different.

Next steps are that we need to meet up with our speech therapist – this condition can impact speech development; ie general speech and the formation of words as the tongue is restricted.  And another frustration; we’ve worked so hard over the last year on his eating to prevent any speech issues and thought we’d cracked it!  This just feels like a real kick in the teeth!  I feel so sad for him.

But, at the end of the day, it hasn’t worried him for the last 18mths, and from what we’ve read, could’ve been worse…  I was just curious as to whether this could in any way be related to the TOF/OA or just another ‘1:4000’ cases. 

Below is a link to information on Wikipedia (and before anyone asks, unless someone swapped my canderel for cocaine in the sugar jar, I don’t recall taking any of that!! , Laurie’s tongue doesn’t come out as far as in the picture there, but clearly shows the fork I mentioned above..

http://en.wikipedia.org/wiki/Ankyloglossia

Rach, Mark and little Laurie

Just to let you know that Robbie (3 yrs old)has tof/oa and is also tongue tied. The doctors diagnosed the tongue tie when he was in intensive care but didnt feel the need to do anything about it. Although his surgeon who he sees for check ups have commented on a possible operation to correct it in the future if it seems to be effecting him in any way. He also has a ‘Pectus carinatum’ along with other things. He is under a speech therapist as he has delayed speech, but lately i have noticed that he tends to swallow rather than chew his food first so he is being refferred to another speech therapist who specialises in eating and speech disorders - i am now wondering that maybe the tongue tie might be the problem i will mention it to them next time i see them.

sharon

Devin, 14mths is also tounge tied.  This was picked up when I had a doctor stop and listen to me when i was bawling my eyes out over how he wasnt feeding proprely and making slurping sounds at 2 1/2 mths.  The dr told me that if I wanted he would just cut his tounge then and there in the room and send us home but I didnt want it done as he was really sick at the time.  We see a speech theripist who told me that the musscles around his mouth werent getting the full amount of movement because of his tounge and that if I used an electric toothbrush to brush his teeth and the viabration of the brush will massage his lips and help him get movement, at the time I thought what a load of crock but beleive it or not it must be working.  Devin can stuck his tounge out further, I know this as one of the exercises he has is to poke tounges at each other each day.  They are fine with out the procedure, just there words sound funny sometimes like the words starting with “s, d, l, t, w, z” sound a bit different.  Devin is doing fine now as far as his tounge goes and the speech theripist isnt worried about him at all.
Jo

just wanted to add that muy son Joshua (11 months) has a tongue tie also. His consultant was not to worried either when they noticed it when he was born, they said they will look into it in the near future. Joshua is seeing a S&L;therapist nxt thurs and im going to ask her some questions about it.

Maryanne x

Hi All
Thanks for your comments.. I’d never heard of tongue tie before, but apparently its quite common.. Even the speech therapist has a daughter with one!!  Hey Jo - might try the electric brush   Laurie’s always wanting to use it anyway .. and sounds fun with the poking out regime

Had some more bad news today (not at all relevant to tongue tie) but my childminder has quit.. i’m devastated, she’s been looking after Laurie since he was 9mths and has gone through everything we have and back again.. Worst of all, she’s devastated too, both stood there crying in her hallway.. Haven’t a clue where to start now - been on the net already and pulled off loads of names.. but the thought of making all those calls, those visits, those decisions fills me with dred!  We stumbled across Julie by accident and she’s fabulous!  I still won’t let any other family member feed Laurie let alone a complete stranger - it was hard enough the first time..

Anyway - enough of my moaning..   Thanks again for the TT help.. has put my mind at rest on that for the time being..

rach x

Hi Rach lust e-mailed you about the child minder thing but Mart just spotted this. Have come across it before in my line of work. And as I’ve got the summer hols coming up and not much to do, i will have lots of time to re-visit my notes etc and pass on the info!!!
Claire xx

Here is an exercise story book that is really good for the tongue. 

Mr Tongue’s House

Mr Tongue lives inside his house.
(Point to mouth)

His front door bell works like this…...
Ring it and see if he is home.
(Lips together “mmmmmm”)

Mr Tongue opens the front door and comes out onto the front step.
Perhaps he will wave to you.
(Open mouth, Touch tongue to bottom lip, Tongue wiggles.)

Mr Tongue likes to keep busy cleaning his house.  Sometimes he sings while he works.
(“la la la la la”)

Can you hear the vacuum cleaner?
(“nnnnn”)

After lunch he puts on the dishwasher.
(“sh sh sh sh sh”)

Later, he chops some wood for the fire.
(“ch ch ch ch ch”)

Mr Tongue has some flowers by his front door and waters them every day.
(“th-th-th-th-th”)

He also sweps the leaves from his door step.
(“f-f-f-f-f”)

Mr Tongue has brought some pictures - he wants to hang them on the walls.
First he hangs them at the front of the house.
(“t-t-t-t-t” or “d-d-d-d-d-d”)
Then he hangs them at the back od the house.
(“k-k-k-k-k-k” or “g-g-g-g-g”)

Mr Tongue notices that his windows are dirty.  Can you help him clean them?
(Run tongue along the teeth - inside and out - then do the same on the bottom)

One day Mr Tongue decides to paint the inside of his house - the walls, one side, then the other - and the ceiling.
(Move tongue along inside surface of checks and roof of mouth)

Oh no! A fly has got in and might stick to the wet paint.  Mr Tongue has to chase the fly from room to room.
(Move tongue quickly around mouth)

Mr Tongue is now very tired.  He goes to bed. Can you hear him snoring. Goo night!
(Tongue rests in mouth. “z-z-z-z-z-z-z-z”)

This is a fun book to do with kids.  Devin has been reading it for 2 days now and loves it he is still trying o get his sounds right but is slowly improving as time goes, I have notice that it has helped him with drinking now he is starting to close his mouth around the teat properly.

Just an update in respect to Laurie TT (oh and Jo, love the story!! )

We saw our GP this morning and we’ve asked to be referred with a view to getting it cut.  We’ve thought long and hard and basically, we’re not prepared to wait to see whether he has any speech problems.  With everything the poor sausage has been through (TOF/OA, the dilations, the chokes, the constant stickies, pnumonia, flat head syndrome etc etc), we just don’t want him to grow up and have speech problems and possibly be behind with his peers or have any form of speech impedament.. for only then to get it cut and he then has to re-learn certain words..  I’ve heard ‘L’ and ‘S’ are the worst for a TT.. His name is Laurie Shepherd!!! 

We’re seeing the ST on 4th Sept and she’ll probably try to change our minds (she has a daughter with TT who has no prob apparently)..

We also think that Laurie now gets so bored (or rather tired) with eating because he can’t get the food to move around his mouth and therefore would rather not bother.. We’ve seen a significant decline in his ‘want’ for mealtimes over recent months - normally he would just eat and eat.. I’m wondering whether because the texture is getting lumpier and bigger as he grows, whether its getting uncomfortable or tiring for him.. For the past month all we can seem to get in him is 5 or 6 spoonfuls and he then gives up.. just says no!  Most times we can eventually get a few more inside him using the ‘no no’ distraction therapy (toys!) but I can’t expect the nursery to do that ..

To us, it makes perfect sense.. One uses their tongue to move food around the mouth in order to chew it then swallow.. He can’t really get his tongue off the floor of his mouth so seems pretty likely he can’t get it to the sides of the mouth to push the food around.. I’m actually wondering now whether the TT causes the majority of the stickies.. if he can’t get at the food to chew, he swallows before he should??  Am I talking total twaddle??

The GP supports us (which amazed me - but she’s known the ups and downs with Laurie from day one so knows we haven’t come to this decision lightly) so is referring us..

Fingers crossed.. our next hurdle is probably who pays!  The NHS apparently don’t consider TT ‘medical’ but will in certain circumstances - we just have to find out whether Laurie is one of those circumstances!.. If not, we will have to pick up the bill ourselves which I think is unfair.. but hey, the NHS saved his life so I probably shouldn’t grumble too much!

I’ve just re-read this thread and Sharon; I think we’ve come to the same conclusion.. get seen!

Anyway, that’s where we are today.. The last thing I want is Laurie in for surgery.. but the more I think about it, the more determined I am that it has to be done.. Why does life involve decisions.. I had flipping decisions!!

Rach, Mark & Laurie xx

by the way, that last line was ‘supposed’ to say I HATE flipping decisions
xx

Hi Rach

all that is involved with fixing a TT is some pamol and then cut it with siscors it bleeds a bit but the sponge it up and send you home they can do it at the drs.a locum gp offered to do this for devin but i said no at the time as he was only 4wks old and i had no idea what he was talking about and didnt want to be dealing with more problems as i was just getting to learn how to care for my baby.
all the best with the specialist.let us know how you go.

Jo

Hi.. update!!

Saw the ENT consultant on Wednesday (actually, it was his Registrar - we had to wait 2hrs beyond our appointment time so I think they just gave us the next available person because we were none too happy and Laurie was getting very annoying!!).. Anyway..

They have agreed to cut the tie - no arguements at all.  In fact, more than happy based on what we were saying.  Considering our HV said the NHS wouldn’t touch it unless it was causing a medical problem and be expected to pay.. I was expecting to at least argue a bit!!

So, don’t know when but the registrar agreed that with the TOF/OA issue, it all sounded feasible that the TT was potentially contributing to the number of stickies he had - especially the horrible ones where he has obviously not chewed properly and a large lump goes down and gets well and truely stuck..  Like the sausuage and cucumber just recently..  What did surprise me was he said “a matter of weeks”..

It’ll be done under GA (not looking forward to that bit really), but he was confident that we’d be in and out quickly, and Laurie would be none the wiser and back at school (or minder ) next day..

Well, that was it really..
See some of you at the party on Sunday!!

rach, mark & laurie xx

We have a date.. 26 Nov..  What this space! 

Lord only knows how that day will start.. with a GA he will have to be starved!  Not too bad when he was young, but try telling a ‘near on’ 23 mth old that he can’t have his breakfast or his milk… let alone a drink!!

wish us luck and fingers crossed xx
rach

Final update:  Procedure was yesterday, a bit touch and go first thing as to whether they’d do it.. The ‘Cold from Hell’ has returned with extra vigor but a second aneth-a-wotsit decided to proceed as the procedure was so minor.. He had a temp of 37.4, streaming nose, full of cold, rattly chest and the normal bark.. we were slightly shocked to say the least!

Results are amazing (apart from all the snot which oddly enough, if he knew how to do it, he could quite easily lick up with this tongue now - yuck!!).  The tongue can come quite far out and over his lips and isn’t oddly shaped anymore.. Next thing is to teach him to lick his lips (and stick his tongue out!)..

It was a matter of minutes from me leaving him in the prep room to be called through to recovery (just had time to get the coffee but not drink it!) and in true Laurie style within 5 mins was drinking milk, eating fruit puree and yoghurt.. No sign of pain, blood or anything..

Since then thou, cold has taken over and he’ll not touch anything.. Back to where we were earlier this month I think!

Anyway, enough said.. just really pleased that at last its done, no complications and all are happy..

xx