Reflux and tongue tie

[kumber]

I just wanna get it out there that I hate them both. They are vile. They are absolute sh*t. I've had enough of both of them.

That is all.

 

[Aimee84]

Sorry your having a tough time. I don't have experience of tongue tie but reflux my little girl had soooo bad. How olds ur little one. Has the doctor given u anything? The gaviscon we tried first just made her constipated I refused it. Got given ranitidine, it did help but much better once on foods and pretty much vanished when she learnt to crawl. I do know how awful it is for you, baby and everything local to u to b covered in sick. None of my other mum friends had children who suffered with it and they didn't understand how stressful it is as its not just a "sticky" baby. I used to get so worried about going anywhere as I knew she would b so sick. It does get better honest just hang in there xx

 

[Browneyed Girl]

Aww has your lo got tongue tie? I thought it had been ruled out? Are you on a waiting list for it to be snipped? It is horrendous and causes so many problems people don't realise. Often reflux is caused by the tie and will resolve once it's snipped xx

 

[kumber]

Thanks ladies.

He's on omeprezole which is helping and we're waiting for a paediactric appointment for the reflux and his poor weight gain.

Browneyed, one hv ruled it out and then I finally got them to diagnose it in January! We're going to see a paediatric surgeon next week (we've been waiting since January). He will have to go under a general now which they don't do at that hospital so we'll have to wait for a further referral.

I don't mind the sick, it's hearing him cry in pain all the time that gets me down and he's so fussy on the breast. Feeding him is emotionally exhausting and physically painful.

 

[Browneyed Girl]

Aww sorry it was that all along and they've missed it! My lo had his snipped at 13 weeks so didn't need anaesthetic, you must be so annoyed that your lo has to go through this now. If you're ever in this position again insist on seeing an IBCLC as health visitors, midwives and GPs are not qualified to diagnose. We had the same issues with constant crying during feeding (which took forever as he couldn't take more than 2/3 ounces at once) and the fussing, bobbing on and off and arching his back clearly in pain not to mention wind and other reflux symptoms. The good news is that it is highly likely that he doesn't have reflux after all and all these issues will resolve once the tie has been snipped. It took a week or two for my lo to learn how to suck and swallow correctly and things were a million times better then. Hope your appointment comes through really quickly and in the meantime vent as much as you need to xx

 

[Aimee84]

Hiya have they ruled out a dairy allergy. My daughter had that as well as the reflux. Once she was on prescription milk rather than mine she was so much calmer even with the reflux. Hope they can help you soon as I know the feeling of being helpless. Good that your being referred.

 

[kumber]

Annoyed is an understatement! It was an IBCLC that diagnosed it over the phone of all things and told me to go back to my hvs. We've received appalling treatment from them, they ignored the reflux, I had to diagnose him and request treatment from the GP. When he dropped a centile and gained 80g in 7 weeks, I told the hv he had just started treatment for reflux. She replied with "Oh" and left it at that. Didn't offer any advice or help. He dropped a further centile a month later and is just below the 50th.

I've put in a complaint with their clinical lead and have been recommended by another source to put a complaint into the CQC.


Yep dairy allergy and lactose allergy have both been ruled out. He won't take formula at all, we are having to sloooooowly wean him onto it. My nipples are so bruised

 

[Browneyed Girl]

Yeah I can imagine - the NHS is very poor with tongue tie and babies are left to suffer unnecessarily which is completely unacceptable. I hope your complaint is looked into properly and hopefully your referral escalated. If i hadn't gone private my lo would definitely be on strong reflux meds due to incorrect diagnosis and I find that thought quite scary. There's a huge lack of knowledge where babies feeding issues are concerned x

 

[Rooster30]

Yeah I can imagine - the NHS is very poor with tongue tie and babies are left to suffer unnecessarily which is completely unacceptable. I hope your complaint is looked into properly and hopefully your referral escalated. If i hadn't gone private my lo would definitely be on strong reflux meds due to incorrect diagnosis and I find that thought quite scary. There's a huge lack of knowledge where babies feeding issues are concerned x

Worth going private then? I've been contemplating going private for a while now.

Sorry Kumber for all the trouble you and you little one are having at the moment. I really hope they get him sorted pronto.

 

[kumber]

I have considered going private but the only surgeon that will cut it over 6 months is £250 just for a consultation! It's just not possible for us to pay that, which really p*sses me off.

 

[Allthingsgirly]

My lb had a tounge tie but the top doctor for our area who happened to work within the hospital I delivered refused to do it until he turned 14 days old as she believed we needed to establish the feeding first (we had feeding issues but that wasn't down to his tounge tie) & if I still wanted it cutting to refer threw a baby cafe & she would do it!

The issues started when my HV believed that we didn't need to have it cut he didn't have any feeding issues because of it etc & how my local trust (I went out of my local trust to have my baby as I wanted to birth in a birthing unit but my baby had other ideas) wouldn't snip it unless there was feeding issues. She was right they refused but I kept on about it & how I was told that if I wanted it doing I could go back to where my son was born and she would so it!

To cut a long story short I wish I had just gone to the baby cafe & been referred as I got an appointment within a week & had it sniped! Simple as that can't remember how old he was when we had it done he wouldn't have been too old but it's best to do it before they realise what is happening as it was such a quick procedure & he was fine afterwards.

 

[kumber]

I've lost a lot of faith in hvs. They brush off TT so easily and seem to have little to no understanding of how difficult it is at home for mother and baby. I'm sorry you had a bad experience too Allthingsgirly

 

[Browneyed Girl]

Yeah I can imagine - the NHS is very poor with tongue tie and babies are left to suffer unnecessarily which is completely unacceptable. I hope your complaint is looked into properly and hopefully your referral escalated. If i hadn't gone private my lo would definitely be on strong reflux meds due to incorrect diagnosis and I find that thought quite scary. There's a huge lack of knowledge where babies feeding issues are concerned x

Worth going private then? I've been contemplating going private for a while now.



Sorry Kumber for all the trouble you and you little one are having at the moment. I really hope they get him sorted pronto.

Yes it was completely worth going private but my lo was only 13 weeks so it was very straight forward with no anaesthetic. I'm not sure what age they need anaesthetic from but there's a story on the website of the company I used of a 9 month old that had his TT snipped without anaesthetic. I would imagine that anything much older than that would need anaesthetic though and I've no experience of that xx

 

[kumber]

It's from 4 or 6 months depending on the practioner, I'm shocked they snipped at 9 moths with no anaesthetic, from 6 months onwards the usual practice is going under a general.

 

[Allthingsgirly]

I've lost a lot of faith in hvs. They brush off TT so easily and seem to have little to no understanding of how difficult it is at home for mother and baby. I'm sorry you had a bad experience too Allthingsgirly

When I get a bee in my bonnet over something I refuse to back down!! My HV is lovely though she just had a different view point etc & I didn't agree! I was so lucky that I had my lb in a different trust or else they wouldn't have done it which seems wrong!

I hope you manage to get somewhere as I don't think you should have to be paying to have it done. The midwife that delivered my baby said straight away to get it done there wasn't any of this 'he can only have it done if he isn't feeding' etc in their view he needed doing it but I don't know if that is because they said he had a 100% TT