Tongue Tie – Why is it So Difficult to Get Treatment?

I read this article recently about tongue tie and the delays parents experience in getting treatment for their child. I’ve seen a lot of articles about it recently. 

I’ve put off writing about this because it still feels so close and raw at times, but it is important. I’m glad that more people are starting to notice the woeful lack of support out there for tongue tie – especially for posterior tongue tie.

When PK was born, the midwife immediately told us that she thought he had tongue tie, and an appointment was arranged with the consultant before we left hospital. The consultant confirmed he did have anterior tongue tie and released it there and then.  It was noted by the staff that his tongue tie had not prevented him feeding in any way.

It wasn’t until five weeks later, after he had lost 17% of his birth weight that we discovered this was less than half the story. Referred to hospital by the health visitor we eventually got to see an Infant Feeding Co-ordinator, who had been trained to recognise tongue tie. I told her I thought the tie had grown back – he wasn’t feeding well, my nipples were all but destroyed from the effects of him trying to feed, and we noticed many of the symptoms of tongue tie. She checked PK over and told me it hadn’t grown back. It had never been released. Or at least, having seen the anterior tongue tie, no-one had looked further and so had missed the posterior tongue tie which was so bad it stopped him being able to touch the side of his mouth with his tongue. We were lucky in that we were able to get lots of support from this point on, including the loan of a breast pump from the hospital, and visits from the health visitor every other day – just to be there, reassure me and support me.

Tongue tied babies struggle to get a good latch, preventing effective feeding. Image courtesy of papaija2008 / FreeDigitalPhotos.net

Tongue tied babies struggle to get a good latch, preventing effective feeding.
Image courtesy of papaija2008 / FreeDigitalPhotos.net

What we didn’t have was an NHS doctor in our County who was trained in dealing with posterior tongue tie. Not a single one. We could ask to be referred to Derbyshire, where the only Dr dealing with PTT would release it under a GA but not with babies as young as PK. We would have to wait until he was 6 months old. Or we could pay for a private midwife who was trained in PTT to release it, which is what we did. She has since stopped her private practice to go back to working full time in the NHS and no longer deals with PTT.

Friends who have had this problem more recently, have found that things have got worse, not better, in the 18 months since we had to navigate these waters.

PTT is surprisingly common, but professionals capable of treating it are seemingly as rare as hen’s teeth. It shouldn’t be this way.  Tongue tie affected over 15000 babies born in the UK last year and given that it causes (often huge) difficulties with breastfeeding, it’s something we should be tackling as a priority. The solution isn’t to simply tell mothers to use formula instead – many babies with TT struggle with bottle feeding too, and it has ramifications for later life too – we were told that unless the tie was released, PK would never be able to lick an ice cream, kiss, touch his teeth with tongue; he may also have affected his speech. 

The treatment for the tongue tie took 15 minutes, and that included the time the midwife spent inspecting his mouth before the release and checking him afterwards. It involved no anaesthetic – it was done in our living room (with sterile implements obviously) and when it was done, we all had a cuppa whilst I tried to coax PK to try feeding again.

So I ask again, why is it so difficult to get treatment on the NHS, even in hospitals who have a consultant who deals with TT? And what can we do about it?  A first step, I think, is to contact our MPs requesting that they ask why there are so few people able to treat tongue tie, and that’s what I shall do.

And Then There Were Two – Home Educating Plum

We’ve been home educating since November – eight months already! Time flies! In November, we had Bean who was 7, Plum who was 2 and PK who was 11 months, so really, the only one being educated was Bean – the little two needed nothing more than plenty of opportunities to explore, play and have fun.

Towards the end of November though, Plum expressed a desire to learn to read. She was certainly ready for it, and she’s made great progress. We’ve only worked on it when she has wanted to, but she really enjoys the Reading Eggs programme we use, so she asks for it almost every day.

Over the last few weeks, she has expressed a desire to write – this has consisted of giving her an exercise book of her own, and some felt tips and letting her do what she feels like. Often she just wants to draw pictures, experiment with shapes. Sometimes she asks how to write a letter – but I always wait for this to come from her. About a week ago, I asked her if she would like to practice her letters more and learn to write and she was very excited about that! So that’s part of our plan for the summer. I don’t expect we’ll do more than a few minutes at a time and only a couple of times a week, but she’s only three, so there is no rush.

It was Stonelaughter’s birthday last week, and she was desperate to give him a “Jake and the Neverland Pirates” card. Bean wasn’t impressed and wanted a different card – so we got both and Plum asked if she could write her card herself. I had though I would be doing the writing and she would write her name and some kisses, but she was insistent that I could not do any of it. This is what she did.

home educating - writing

I think that’s pretty good for a first attempt!

Now, for the last 8 months, Bean has been using a website called Khan Academy for his Maths. Plum has always wanted to get in on the act. Recently, they added lots of new material, which included “Early Maths” and when I had a look at it, I realised that she could manage some of it. I asked her if she would like her own account so we could do some maths together. She jumped at that too.

So yesterday, she did her first bit of Khan Academy maths and promptly earned herself a “Geek of the Week” badge for practising five different skills. We did things like comparing sizes, counting, counting and comparing (for instance, counting 9 whales and eight sharks and saying whether there are more sharks or more whales) and “counting in scenes”. The only bit that gave her any trouble was deciding which number was larger after she’s counted the items. She knows her numbers well, but they’ve always been pretty abstract until now I suppose and so I ordered 100 Snap Cubes for her, like the ones I used to use at school thirty or so years ago. With these, I think it will be easier for her to understand relative size of numbers.

I really like the “counting in scenes” puzzles we did. It used paintings of famous artists and asked her to count something in particular – buttons on a jacket, wheels on a car etc

home educating - maths

 

And so it would appear that I am now actively home educating two of my three children. I hadn’t anticipated it happening quite so soon – after all, Plum wouldn’t have been due to start school until September 2015 at the earliest. She’s made it quite clear that she’s ready for more of a challenge though, so we’ll follow her lead and see where it takes us.  Wish us luck!

This Parenting Lark Link Up

This Parenting Lark Link UpWelcome to This Parenting Lark – my new weekly link-up for your parenting posts. Leave a link to your favourite/best/most popular post on parenting from the last week and try to visit one or two of the other links too. Your posts can be about an aspect of parenting – the highs, the lows, the funny bits, the hard bits, the burning parenting issues doing the rounds – whatever you want!

This week, PK has been hitting loads of speech milestones, as well as showing signs of his rebellious streak. Bean has been trying hard to improve his chess game (though with me as his opponent, it’s a bit like the blind leading the blind!), and Plum has announced that she is vegetarian, just like Herb, the hero of her favourite book. Whilst that doesn’t faze me at all (Bean was voluntarily vegetarian until he was about 4), I do wonder what she might eat – both Bean and Herb are fond of a variety of vegetables, whereas Plum prefers to stick to potatoes, the occasional pea and her own weight in satsumas. Parenting Plum is certainly interesting – I wouldn’t change her for the world, but she’s certainly a strong character!

What has your week of parenting involved?



Gluten Free Recipes from The Sated Coeliac Move Back to Barefoot Mahala

The Sated Coeliac - Gluten Free RecipesYou may have noticed (and you may not!) an addition to the blog this week. For the last ten or more years, all my cooking has been gluten free, as a result of being diagnosed with Coeliac Disease. After several people asked me to share my gluten free recipes, I began publishing them onthis blog.

This year, I decided that these recipes needed a home of their own and set up a shiny new blog for them, all about gluten free cooking. It was a mistake. I don’t have time to keep two blogs going with all the other commitments I have.

And so, the Sated Coeliac has moved back in. From now on, this is where I’ll publish my recipes and any other coeliac/gluten free posts I write. It won’t be more than one a week, but it’ll all fit in nicely, since these recipes are for the meals I cook for the family. I hope you enjoy them!

What Am I?

Last week’s was easy, wasn’t it? ;-) It was a piece of crepe bandage, which I’m sure someone knew all along. Unfortunately, that someone didn’t pop by and answer the quiz! No right answers!  See how you get on with this one.

wai9



Milestones – A Week of Firsts

It’s been a busy week for PK who seems to have been going through a big development spurt. He’s had a week of exciting new milestones and it’s been hard to keep up. It’s lovely to see, but it does make my heart ache too – my last baby is really not a baby anymore; at 19 months old he’s well and truly a toddler and showing his independence in lots of ways. As far as possible, I ignore the ages these things are supposed to happen – children develop at their own pace as we know, and are oblivious to what the books say. That doesn’t stop us looking forward to certain milestones and enjoying them whenever they happen.

He’s hit a few speech milestones recently. We’ve been having lots of words from him for months, but he’s now started talking in sentences. Not all of what he says can be deciphered yet, but he clearly knows what he’s saying because he repeats it exactly several times. He’s fond of adding “and” and “but” into his conversation too, with lots of emphasis on them – “Aaaannnnd …..”  BUUTttttt…..” He’s copied this from Plum. Some of what he says is very clear though. One particular phrase that is getting a lot of use at the moment is “I trumped Mummy. Pardon Me”, often followed by a self satisfied giggle (and a green fog).

speech milestones

I said in a recent post that PK’s way of saying “I love you too” was to smile and say “too”. That changed over the weekend when he walked up to Plum, looked at her and said “I uvv you Plum”. I melted. And tried not to be bitter that it wasn’t his Mummy he said it to first (I’m joking – it was lovely to watch and Plum was over the moon. Over. The. Moon).

PK has recently shown a distinct fondness for Mr Tumble too. Plum was given a Mr Tumble annual at Christmas and over the last couple of weeks it has become PK’s prized possession. He carries it with him crooning “Tuuuumble”. And then we realised that he was singing the theme tune. Well, bits of it – “Hello, hello, are you? I see you. Hello, happy name. Yeayyyy!”

Yesterday he came up to me and said “you sign”, and signed it. Unfortunately, he didn’t know what he wanted me to sign, but you can’t have it all. Later, with a little encouragement, he signed “milk please”.  Like Plum and Bean before him though, he seems to have clicked on to signing after he can already say the things he is signing, so uses it as a fun thing to do, rather than a means of actual communication. 

Today, as I write this, he is mastering the art of the knock knock joke. So far, we have got “knock, knock. Who’s there? *something incoherent* yeah!”. Hmn, he’s not really grasped the basics of how they work yet. Give him time.

Another of those lovely toddler milestones we’ve reached over the last week is the beginning of the defiant phase. The forceful “no” and the dropping down onto his bottom, refusing to move in protest at … whatever he’s protesting about at that moment. Thankfully, these moments last all of a few seconds but they are a definite sign that he is going to follow Plum more than Bean when it comes to the “Terrible Twos”. Ahh, I can hardly wait!

What milestones do you look forward to and which have you enjoyed the most so far?