Looking for some advice around what to do with my DDs tongue problems, sorry I’m advance for how long this is
She is 15 months old and breastfed, started weaning at 6.5 months and she’s never managed anything other than v smooth purée, any lumpier purées she’s not managed, finger foods she’s never managed, she’d hold them on her tongue, not do anything with it and get really upset.
When she was 9 months I contacted my HV about it who told me she just wasn’t hungry enough and to stop breastfeeding her so much which I tried and she’s get so upset so I stopped doing that, because DD would happily put food in her mouth even if she couldn’t swallow it and would eat purée I knew she was hungry and it must be a physical problem so I went to GP who said she was a healthy weight and didn’t think there was anything wrong but they’d refer me to speech and language therapist. I went back to HV to update who said again she just wasn’t hungry, spoke to a few others HVs who said the same and to stop feeding her overnight which I couldn’t do.
After 2 months of nothing from the SLT I contacted a tongue tie specialist in London who runs a “pay what you can afford” clinic to help bridge the gap between NHS and private, she was fantastic and found DD had a tongue tie, cut it when she was 11 months and her cheeks were massive from all the tension from not feeding properly so she did some tension release stuff and the next day DD started eating normally, eating so much food and really enjoyed it but after a week regressed again and couldn’t swallow.
After a few months I got an appointment with the SLT who didn’t look in DDs mouth and said the reason she doesn’t eat is because Im using words like lumpy around her and I should do some messy play with her.
When I could afford the train again, I went back to this specialist who did some myofunctional therapy on her and again she ate that same day and for a few days after then back again to not eating again.
I went again last week and DD ate for 3 days, never seen her eat so much food she was really enjoying it and tried foods she’s never tried before but after a few days she’s regressed again, she needs to have weekly sessions to improve.
I went to the GP last week as at 15 months she’s still breastfeeding constantly and eats maybe a pouch of 4 month+ purée a day, GP said to go back to the SLT, I’ve emailed the SLT but she said she isn’t trained in what DD needs, GP said DD is fine on breast milk only and because she’s a healthy weight she’s not struggling.
I’m really really stressed, every meal time she puts food in her mouth and gets so miserable not being able to swallow it, I’m fed up of breastfeeding, she wakes hourly sometimes every half an hour for a feed (the days following a therapy session she wakes once all night so I believe it’s linked), she’s always trying to have some of my food and then not swallow it and I’m so worried about the effect this will have on her speech and ability to swallow as time goes on, it’s like nobody is worried about it and I’ve been left to it.
The specialist I’ve been seeing is amazing but I can only afford to travel to her every few months.
Has anyone else had any experience of muscular tension following a tongue tie release and can you tell me who you saw/what you did to help?
I would’ve thought a speech and language therapist could help but apparently not and I’m quite desperate to get this sorted :(
thanks for reading and sorry it was so long