Possible tongue tie and feeding problems

[IJustWoreMyTrenchcoat]

Hello, it is me again, still having problems with an unsettled baby .
He barely sleeps, especially at night and I don't know if it is hunger, pain or a combination of the two.

I am becoming more and more convinced of a tongue tie, possibly posterior. I am using the Milk Matters service and have sent my photos and am going to fill the form out over the phone (no access to laptop at the moment and can't fill the form out on my iPad).

I am getting more and more frustrated as I feel this is the problem but keep getting told there is no tie (Midwives etc. are only looking for an anterior tie). If he did have a tie it would explain so much - the poor latch from day one, my sore nipples (compressed, blanched, eventually cracked and bleeding) and also the wind/hiccups etc.

I have been attempting skin to skin today to try to get him latched without the nipple shield without much success. Had to resort to using it then taking it away. He got so frustrated and was just bobbing his head from side to side and hitting me with his fists. He eventually latched on but it was very shallow and he kept 'slipping off'.

I know the shields have the double whammy of reducing my supply over time and making it harder for him to access milk. This and the top ups - which are the only thing that satisfy him - will obviously threaten my supply over time - I am still expressing when possible.

I guess I just want some advice off people who have had ties successfully dealt with- I found a link of what NHS hospitals will cut them, can I ask to be referred or is it best to go private? Things are pretty hopeless and I am so close to just giving in and introducing more formula so at least I can be sure he is not hungry.

[IJustWoreMyTrenchcoat]

Oh, btw he is nearly 5 weeks, fed on demand with top ups every 3 hours (1 or 2 oz.) and we have been prescribed infant Gaviscon - we were using I facial and coined previously.

[IJustWoreMyTrenchcoat]

That should be infacol and colief , sorry my brain is fried!

[LAF77]

It could be TT, but it doesn't sound like you are feeding enough. Every three hours is a long time for a 5 week old. Top ups aren't great for supply at this early stage too. You should continue switching sides until baby has had enough to keep your supply going. 6 weeks is a big growth spurt so your baby could be quite fussy because of that. How is the weight gain going?

[IJustWoreMyTrenchcoat]

He is just meant to have a top up every 3 hours, but is breastfeeding on demand inbetween this. I don't tend to get 2 hours between feeds very often which does make me think he is just not accessing my milk very well. It is more like 1.5 hours, or continuously at times!

The Midwife I am speaking to wanted me to get him into a 3 hour routine so I would have time to express for top ups. IFirstly, he just wouldn't go that long and it seems backwards to me - I would rather he be satisfied off the breast alone.

At the minute I am so upset I am ignoring my concerns about supply and giving him top ups more regularly: before I only gave them when he still seemed hungry, now I want to give it at 3 hourly intervals. I think I have been so stubborn about keeping up breastfeeding I have been ignoring the fact that for whatever reason he is just not getting enough and is hungry. All the cluster feeding in the world doesn't alter that, whether it's because of a tie or using a shield. I hate to admit it but I am on the verge of giving up, I feel like I have no fight left in me, I wish it didn't have to be such a struggle and I could just relax and enjoy my baby boy .

He is now 7lb 14, so 6 and a half oz above his birth weight. Not great but at least it is going in the right direction! He had put on 6oz in 6 days since his last weigh in.

[gretagrape]

Your last post is so sad - you need to keep pestering your GP/HV/BFC to look into whether there is a TT or other reason why feeding is proving to be so difficult. If anyone stops BF'ing it should be because they want to, not because they aren't getting the support they need to make it successful.

With all the issues I've had with my son, the main thing I've learnt is that if you think something is wrong you need to become a right royal pain in the arse and make a polite but assertive fuss until you get the help you need (even if that means going to back to the GP EVERY DAY until they start to realise that saying "he'll grow out of it" isn't cutting it with you).

[mawbroon]

Where are you based? Is going private an option for you?

[rosiedays]

Bless you
My little one is 8 weeks now and I was 100% committed to bf. I very nearly gave up at 4 weeks as I had started to fear feeding it hurt so much. I had successfully fed 2 dc and couldn't understand why it was not working. Due to our lifestyle i had to battle on (Iinternational travel to less developed countries)
6 health professionals checked her tongue and said it was fine. I finally got an appointment with the feeding consultants at 4 weeks. ... guess what tongue tie.
My advice call the post natal ward they should be able to give you consultant contact.
The other thing i did was not wear a top for about 2 weeks just kept boobs out. The air helps healing and baby fed little and often constant skin to skin helps supply. I suppose really i decided to totally focus on baby and feeding. Nothing else. No housework, cooking or visitors. Just me and baby and me focusing on meeting her needs. (She is the only one at home so it was possible)
Oh and I hate hv who talk 3 hour routine it's bollocks. Your baby is an individual and hasn't read any of the baby should do books.
Keep going if you can and get help. If you can't allow yourself to switch to bottle and enjoy your baby. Xxx

[LAF77]

This is a prime time for fussy behaviour. Top ups will interfere with your supply at this early stage. The more you top up, the less chance your body has to make milk. It is good you are feeding on demand. Can you find an IBCLC near you who can check for TT? Carrying your baby in a sling will help with some of the fussiness as well. Good luck mama

[IJustWoreMyTrenchcoat]

Just lost my post! Will try again...

I am being a nuisance gretagrape, have a paediatric referral now after third GP visit, but I think he is hungry and that is why he has been so unhappy. I am so at myself. I don't know if we need the referral now, I wonder about reflux/colic etc. my poor boy could have sounded in so much pain and getting so angry because he was hungry.

Last night I topped him up with 2oz of formula after every breastfeed through the night (2 hourly approx.) and he settled between feeds. I feel like I just want to switch him to formula now, I have fought for 5 weeks and I am not feeding him properly. The only thing stopping me is not knowing whether he should be on a comfort or reflux milk. I have no idea of the practicalities of stopping breastfeeding, and if I could mix feed successfully.

mawbroon I am waiting to hear back from Milk Matters about my form. Going private would be an option but I would prefer to try the tongue tie clinic at the RVI first if he does have a tie as it would be easier distance-wise than getting to Yorkshire (I am in rural Cumbria). I think a diagnosis may come to late to keep me breastfeeding though :( hopefully I will still be able to even sometimes, it makes me so sad to think of giving up without ever knowing how it should be.

If there is a tie I will be so angry, like you rosiedays I have been told again and again there isn't yet everything I read says healthcare professionals aren't trained to recognise them.

[IJustWoreMyTrenchcoat]

LAF77 I think my supply is already compromised to be honest with the shields and top ups. At least breastfeeds alone never satisfy him, it has been ages since he has had the sleepy, satisfied 'drunk on milk' look. Normally he falls asleep then wakes angry minutes later which suggests it is just too hard for him to access my milk.

[TripleRock]

Milk Matters surely can help? Can you ring them right now? Can they do a home visit urgently.

[LAF77]

You still have a chance to keep bf in your baby's life. Your baby is telling your body to make more milk. It doesn't necessarily mean he is unhappy because he is fussing. But you are the expert on your own baby.

You may choose to mix feed or completely formula feed, but your baby's behaviour sounds pretty typical around this stage. It is good that you are in touch with milk matters. They will be a great support.

Incidentally, I don't think we get much knowledge of normal baby behaviour. Every time I see a TV show or a movie with a new baby in it, I think how ridiculous! I've never seen a baby behave like that. No wonder why we struggle as first time mums.

[gretagrape]

Don't be angry at yourself - you are trying to work out how to make your baby happy which is all you can ever ask of yourself.

I was the same when we got our Paeds referral because every time I took my son to the GP he was happy and smiley but the other 23hrs a day he was a nightmare. I thought maybe it was just all in my head, but once we'd been I was glad I made all the fuss - turned out he had a cow's milk allergy so basically had an unhappy digestive system 24hrs a day.

If it turns out nothing is wrong then that is great, but it doesn't mean you have wasted their time.

[Sunflower1985]

This could be me with my nearly 6 week old. We mix feed - at first because of weight issues and now because I can't keep him on long enough because of the pain. He sucks for a few minutes then appears to get windy and frustrated and gives up. He will go back on but by that time my nipples are so sore I can't keep going. They're pink but not cracked. The pain seems to radiate outward.

Anyway, today I went to a new breastfeeding clinic (I had been going to a different one). The specialist there stuck her thumb in his mouth and showed me his tongue rubbing over his gum as he sucks. So my nipple is getting repeated pushed against the gum. Hence the pain. Diagnosis - posterior tongue tie!!!

I'm now going to decide whether to battle nhs for a referral (although she said she would write to our gp) or go private for £100. For me it depends on the waiting list as I don't want much more of this.

I feel the same desperation to continue but couldn't indefinitely. It's all very well saying feed on demand, but if they're not feeding effectively demand is all the time and we can only take the pain for so long. Where are these toughened nipples I was promised!!

Can I let you know how I get on with accessing treatment??

[IJustWoreMyTrenchcoat]

Yes please do sunflower. My HV is going to put ?tongue tie on the paed referral but I am doubtful the Dr will be trained to spot it. Don't know if there are specialists.

It shouldn't be such a battle. Breastfeeding is so heavily promoted but this is where it falls down. The pain is unbearable even with shields sometimes. Like being cut with glass. If I took him off every time he was latched wrong he would never be on!

Can you get the tie cut locally? I found a list of NHS hospitals it is available at. Will try to dig it out.

[IJustWoreMyTrenchcoat]

www.unicef.org.uk/BabyFriendly/Parents/Problems/Tongue-Tie/Locations-where-tongue-tie-can-be-divided/

Not sure how to find people who will do it privately, or as you say how far you will get with the NHS! Good luck.

[ZingWantsCake]

your HV can refer you or call and self-refer.

[ZingWantsCake]

NHS - waiting lists can be 2-3 weeks.

we went private with DS5 then DD. both were done in days. best £80 (twice) I spent.

I'll pm you with details of my local hospital - if you are near let me know I can help you more.

[ZingWantsCake]

another thing - I always took my babies at 3 weeks to have a check up by my osteopath and he disvovered that DD had an extremely arched soft palate which together with severe posterior TT made it almost impossible for her to extract milk.

he did 3 sessions of cranial osteopathy and her suction improved within days after the first one as the manipulation of the cranial plates caused the jaws and in return the soft palate to change shape.

does your baby hiccup a lot?

[Clarella]

trench big hugs have pmed you

[IJustWoreMyTrenchcoat]

Zing and Clarella I have PMd you, thank you both.

Zing he does hiccup a lot. His pattern after a feed is to almost immediately get his wind up and either posset a little or bring quite a lot of milk up - before the Gaviscon he was crying and getting very distressed, this has eased a bit now. Since we have suspected reflux we keep him upright after feeds, and he continues to bring some milk back up at intervals. No matter how long we keep him upright once we put him down (on an incline) he brings more milk up then starts hiccuping like crazy, swiftly followed by tears bless him.

[ZingWantsCake]

yes, got your PM.

take him to an cranial osteopath, if you can get a recommendation even better.

my osteopath said that excessive hiccuping in infants means that that cranial plates are not quite right and the body is trying to correct itself.

think when a syringe is flicked it creates a sharp, short "hit" that makes the bubbles detach.
it's similar to that, hiccups try to "flick" the skull plates to open up a bit and get back into place.
it does not mean there's anything wrong per say, it's just a self-correcting mechanism that can be helped externally!
I'm not sure if I'm explaining it well, sorry.

I'll pm you the number of my guy in a minute, if you call him tomorrow between 8am -12 am he can give you some advice and might be able to recommend someone near where you live.

the reflux is typically to do with the valve in the stomach not being mature (strong) enough. it does get better with time.

[mawbroon]

The reflux is not always to do with the valve in the stomach though. Ties can cause similar symptoms to reflux because a lot of air is swallowed when feeding and it comes back up, along with the stomach contents.

If there are ties, a CO may help a little, but until the ties are revised, the tension will remain.

Is going to one of the dentists who trained with Dr Kotlow an option?

There is one in London (Dr Malcolm Levinkind) and one in Huddersfield (Dr John Roberts - Cote royd dental practice)

DS1's ties went undiagnosed until he was 6yo. If I had the baby days again, I would have been hotfooting it to one of those dentists to have the ties revised (anterior and posterior tongue ties and an upper lip tie)

[ZingWantsCake]

mawbroon

of course not always, that's why I said "typically"!

a friend's son had to have operation as his stomach developed unusually and was actually upside down!
that is very rare though, as are some other possibilities.

it's good to get a lot of info.

hope your son is better now.

[IJustWoreMyTrenchcoat]

The Huddersfield dentist may be a possibility. Lots of ideas and things to think about. Thank you all.