What is wrong with us?

My daughters reflux is getting worse each day, even with the medication. She’s crying for feeds but refusing both ways of being fed, or when she is being fed, she’s throwing it straight back up. I am having the old familiar panic attacks that I haven’t had in years because I am worried for my daughter. I feel like a failure because the right people will neither diagnose nor treat her tongue tie, other than people who charge for it and I just don’t have the money to travel or to get it done. I feel like I have nobody to talk or turn to because they’re all sick of hearing it and have their own problems. My left boob is also very sore and warm down one side. I’ve been breast feeding as much as she will actually do and hand expressing.

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Hopefully things will get better.

Anya’s problems are going from bad to worse. She is struggling to take any sort of feed. She is fussing at both bottle and breast. I have compiled a text to my breast feeding helper. This is it.

Preston didn’t go very well for us. They didn’t do any of the proper tests for tongue tie. They only looked at her mouth and said they wouldn’t diagnose her as tongue tie because there was nowhere to cut, something to do with risk of infection, unnecessary procedure and they also said many mums decide to go private. We found out the hv had calculated her weight wrong. She is not loosing weight but is not putting on enough (7oz in 6 weeks). Her and my symptoms are getting worse with her now fussing over bottle feeds and constantly screaming (not a happy baby). We’ve been told Oldham is good for tongue tie and better than Preston. Two doctors have diagnosed as tongue tie and even hv said she could see it. Also I have spoken to a lactation consultant who said that from her mouth shape and her and my symptoms it is a submucosal tongue tie (a sneaky one). This isn’t in my head. I do know what I’m talking about and if it was just a case of giving up breast feeding and bottle feeding I’d let it drop, but she is fussing no matter which way she feeds. I’m meant to be enjoying this time, but I’m starting not to.

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Wits end

I really am at my wits end today. My baby has not stopped screaming all day. I’ve tried feeding, changing winding etc. I’ve even gone out and spent a fiver on some MAM dummies because I heard they were good for tongue tie. She keeps them in longer than any other dummy but still can’t completely grasp onto it. I’m starting to dread the days ahead of me. Don’t get me wrong, not because I can’t handle her crying, but because nothing I do can soothe her and I know she is in pain and her problems are aggravating her. Surely the nhs can’t just leave her like this. I am going to go to a public meeting with my local MP tomorrow to raise his awareness to this issue of tongue tie.

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More to do with tongue tie.

Well, I went to a web page that shows you exactly how to diagnose a prosterior tongue tie. The so called “professionals” that looked at my daughter didn’t have a clue. They didn’t do any of the tests, just looked at her mouth. It is now also looking like my precious Anya has either lactose intolerance or CMPA (cows milk protein allergy). CMPA is one of the many things associated with tongue tie. They sent off a stool sample to check for the Lactose intolerance, but the CMPA is more of a trial and error type thing, where we have to try out different formulas. I am also going to cut out all dairy from my diet and ask the doctor to prescribe me some domepridone to build up my breast milk supply (I have been taking fenugreek and eating porridge). I hope I can continue to breast feed and eventually cut out all formula.

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My tongue tie journey

All I want to do is exclusively breastfeed. All I’ve ever wanted to do is exclusively breastfeed.  So now that I am a mum again to a beautiful 6 week old baby girl, I am not going to give up our fight, no matter how painful (literally).

It started in hospital. Anastasia was born 10 days early and immediately took to the breast with very strong suction all the way through the feeds, which I thought was normal. All seemed fine in hospital apart from the fact that a few of the midwives didn’t think she was staying at each breast for long enough.

When it came to getting her home, things changed dramatically. She was 6lb7 when she was born.  She decided to be the baby that never stops crying and showing feeding cues. It would have been like a heavenly dream if it would have been every hour, or even every half an hour, but it just didn’t work out like that.   She was never happy unless she was on the boob. I tried to change her bottom, she would scream, try to rock her to sleep, scream, sing to her, scream. Hold her upright, however, or feed her boob, and she’d be fine. She would breast feed literally every second of the day and night so I had no time for myself, my family or my other child (who has behavioural issues). I was also starting to not look after myself (not regularly showering or bathing (which has lead to  a possible infection in my cesaerean. Also the smell wasn’t nice. I had to make the decision to mix formula feed with breast feeding but only when I needed it. With breast feeding she was getting terrible reflux but with bottle feeding she was letting so much air in the bottle that she also has terrible painful gas and reflux with that too. I posted on a breast feeding support site and a lovely lady told me that it could be tongue tie and reflux. I contacted a doctor A Kotlow, (a paediatric dentist in the USA, who is renowned for his expertise in tongue tie), who told me from symptoms and pictures I took of my daughters mouth, that it sounded like tongue tie, upper lip tie and reflux. I took her to A & E under the decision of NHS direct because she was choking and gagging silently on nothing in her sleep. The doctor there said he suspected tongue tie but nothing that they could do there as it was for emergencies. He also wouldn’t do anything for her reflux, as he didn’t suspect it, but I knew different. I took her to our normal GP, who said the same thing. Suspected tongue tie but he did prescribe us some baby gaviscon for reflux. He said he would not refer us to anybody as tongue and lip tie do not affect feeding. I argued with him 3 times but he did not listen and was stuck in his ways. I contacted my local breast feeding support (or star buddy) who made a referral to the tongue tie person in Preston. We, at first, was told by our health visitor that our daughter had gone from 6lb 7 to 7lb 4, but she had accidentally made an error in calculating, so when we went for our next weigh in, I believed she had lost 5oz, when in actual fact, she had gained, but very slowly. In 6 weeks, she has gone from 6lb7 to 6lb14. This is how our visit to preston transpired.

Well, long story. Anya has NOT had a tongue tie division done. The reason being is that they saw and confirmed that she deffo has upper lip tie but not going to diagnose as tongue tie because in their words “there’s nowhere to cut” and something to do with unecessary procedure, infection blah blah. They said to me that many mums decide to go private and get it done and it improves things. My health visitor said today that she can see a slight tongue tie, but not enough to cause a problem. Also she worked out her weight from kilograms to pounds wrong the other week. She has never been 7lb4 like we were originally told. She has gone from 6lb7 to 6lb14 in 6 weeks so she is definitely not gaining enough weight. They are going to test her for lactose intolerance and refer to a paediatrician. It’s really naffing me off because i already know what is wrong with her but they won’t fix the damn thing. There are private preferred providers in the uk somewhere but at 2-300 quid for a simple procedure, we just can’t bleeding do it.

She is formula and breast feeding but still not putting on enough weight. They want me to top up every feed now, but I just want to breast feed.

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