Tongue tie. Anyone experienced this? Hope needed.

[ToniBraxtonhicks]

DS2 is 6.5 weeks old. Was diagnosed and referred with significant tongue tie at birth. He's managed to EBF since birth, but with a host of difficulties (shallow latch, frequently slipping off, can hear him losing suction and swallowing lots of air which leads to long winding sessions, choking and coughing on milk, dribbling milk down his chin and feeding continuously when not asleep). Tongue tie was cut at 4.5 weeks (two weeks ago) but my heart sank in the recovery room when it had made absolutely no difference to his feeding. I've since had two sessions with a private lactation consultant who's managed to improve feeding position, but not his latch as she's said they have only cut the front of the tie and he's still tied at the back. She's referred him back to have it revised (saw her for the last time last Tuesday) but haven't heard anything as yet and I know the waiting times are long.

Since then I've been constantly worrying about his weight as his weight gain has slowed (50th down to 25th centile) so GP said to top up with formula which I don't want to do as it would negatively affect supply. Also, becoming more and more depressed by the thought of him not getting enough from me and by the lengthy monotonous (and lonely in the night!) feeding and winding sessions.

I can't really express to increase supply as DS is feeding when awake and will only sleep in a sling so boobs are never accessible to a breast pump. I am doing breast compressions while he's feeding to try and transfer as much milk as possible.

Had anyone else had to go and get a tie re-cut like this? Did it ultimately make an improvement to feeding?

[butterfly198615]

My daughter was tongue tied, her dad is too but he hasn't had his cut as he could feed ok.
My daughter was bottle fed and was exhausting herself from struggling to feed.
She was tongue tied from the bottom so they cut it right along. She has a little flap there underneath her tongue but it doesn't bother her.
The nurse told me to feed her straight away as it will help with the healing. She did take a while to get used to taking her bottle again as it was different than before but she soon got the hang of it. I had to use a certain type of tite on the bottles so she could grip better.

I'm sorry if I have been no help but thought I'd share what my daughter went through.
And about a few weeks after she was diagnosed with infant reflux and she couldn't keep anything down so she had to have infant gaviscon to her bottles.
I hope it gets sorted for your little one quickly .

[Ven83]

I'm really sorry you're going through these difficulties. You've done amazingly well so far, great job on persevering with BF.

My son had tongue tie corrected but things didn't improve for weeks. He's had all the same symptoms as your baby, except for weight issues.
Have you been doing the tongue/mouth stretches they were supposed to tell you about? They didn't mention anything to us at the procedure and we lost weeks until I finally found out about it.
For some babies things don't get magically better as soon as the tongue tie is snipped, but their tongue and jaw muscles are still clenched and you need to help them stretch it. Here's a useful video:

Anyway, I'm sorry I couldn't be of more help, but I hope you get seen soon for the second procedure. Nipple shields helped us so much, so they're worth a try in the mean time (if you haven't already).

DS was a slow and messy eater until just over 3 months, but then things improved practically over night. Feeding time is now reduced to under 10 minutes (used to be 45-60), there's no milk dribbles and we don't need nipple shields anymore.

[ToniBraxtonhicks]

Thanks for the replies and for the link to the video ven. We had no aftercare advice given at all by the hospital, but the lactation consultant told us about the tongue mobility exercises. Fortunately, I've 'toughened up' enough that I'm not experiencing pain when feeding so don't think I need nipple shields unless they help correct a shallow latch.

Thanks for positive experience that feeding can improve over time and isn't always immediate!

[childmindingmumof3]

A drop from 50th to 25th isn't a concern and not something you need to fix with formula.
My 6 month old has an uncorrected tongue tie and has got better at feeding as she's got older. I still need to wind her though! She dropped more than one centile though has picked up a bit with solids.

[pileoflaundry]

Whereabouts in the country are you? Could you afford to see someone privately to avoid the waiting list? I did this, it was around £150 in London, waiting list was a few days and I cannot praise enough both the support during the initial consultation and follow up afterwards to help through problems. I used the same person for 2nd DC's tongue tie too. Can PM you the details if interested.

Also 'Breastfeeding made simple' by Mohrbacher and Kendall-Tackett is a mine of helpful info.

[butterfly198615]

Also my daughter wasn't putting on weight this was before she was 4 months and it didn't improve after her tongue tie being cut. I was concerned as my son was gaining loads of weight when he was that age. The nurses weren't worried about my daughter kept telling me that she is only little etc but at 4 months they told me to wean her and fortifie her food etc. She started putting her weight on then .

[ToniBraxtonhicks]

I really appreciate people sharing their tongue tie experiences. Thanks for the recommendation pileoflaundry. Would definitely be forced to go private if it would be weeks to wait. I called the hospital today to see if they got the referral and they offered a clinic appointment next week. Don't know how long it would've taken if I hadn't called to chase .

At a breastfeeding support group on Monday, a health visitor suggested infacol for the trapped burps. I know it takes a while to work but so far seems to be making things worse by stopping DS from burping at all (even though we can hear/feel air pockets glugging about in his tummy .

He's had ok weight gain this week so hopefully the hospital appointment might do the trick for making feeds a bit shorter and wind less of an issue.