ph results invalid!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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Permalink Reply by Kayliegh on July 7, 2010 at 20:46

Oh my god Emma I really just don't no what to say, it really is just the most ridiculous most awful thing I just can't get even find the words! I just wish I knew or we knew what we could do to make people hear us, take note and have some bloody knowledge in reflux and how to actually help these poor babies rather than just hinder us!! So pleased your complaining although on top of everything just what u don't need!!! makes me sick, that every mum on here new there was something bothering there Los and I bet every mum on here has been told it was them and made us all feel mad it's beyond a joke!

I really hope you and jasmine get better care soon, I'm so sorry! I don't even need to say be strong because it is undoubtedly clear your very strong and, and will definitely have one very proud daughter when she's older and knows you fought all the way x x

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Permalink Reply by emma louise kelly on July 7, 2010 at 22:32

Hi Kayleigh, thanks for replying, I am just as speechless and at a loss but your support is appreciated. I didn't think things could get any worse and actually thought I might be getting somewhere when I complained earlier today but this is just utterly disgusting and negligent. I knew the readings were odd as ph monitor showed result constantly and it was just nder 4% (acidic environment) constantly, only time it was above was when Jasmine drank milk. She wasn't refluxing acid but I never thought for a second they had placed probe too far down and then didn't check the x-ray properly! When doc rang me on Mon and said she knew nothing about reflux but 70% sounded high I was so shocked I burst into tears and worried myself sick. There are lo's here with acid in oesophagus for 15-20% of time and they are classed as having severe reflux, I thought Jasmines throat would be damaged beyond repair. They've gone too far this time and what if no-one had thought mmm thats too high, would they have suggested operation or more meds (that may not be needed). I know Jasmines reflux is bad as thats why I wanted study but I want a proper reading!!!! And what has also really pissed me off is that it took them 2 weeks to tell me that the test was performed wrong!!!!!! All that time worrying about result, i'm disgusted with them all!!!! xx

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Permalink Reply by Jenny Cadman on July 7, 2010 at 21:34

Emma I really feel for you and poor Jasmine having to go through this again. I think it might be worth seeing a solicitor and finding out if you can sue. I know that won't help things now but poor Jasmine suffered for nothing all because the hospital failed in it's duty of care. Could you not maybe demand a referral to another hospital, possible a specialist children's one as that is just not acceptable what they have done.

I think it is time to get your mp and the local press involved as well.

Good luck, keep us posted and keep fighting. Jasmine will be proud of you when she is old enough to understand xx

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Permalink Reply by emma louise kelly on July 7, 2010 at 22:41

Hi Jenny, hope you and Ruby are doing well, how is her eczema?

Thanks for input, I plan to go to citizens advice and seek legal advice, if I can sue I will. I'm so angry and this has just made me more angry about all the other times Jasmine has been neglected so heads will roll!

First thing tomorrow i'm back on phone to my local MP plus liason officer.

I said to liason officer today that all i've ever wanted is for Jasmine to be treated with some level of care and consideration and to feel that the doctors want to help her rather than having too iyswim. I listed everything I have been upset about over last 6 months and then she asked if I could put my faith in them once more and then this happens. The infamous Dr Tozer who has been sunning himself somewhere seemed genuinely sorry and angry about the ph study but if I hear nothing re booking her in I will request being see elsewhere. Asked liason officer today and she said if I wanted to go down that route then I would need to be referred via GP.

I am asking for a copy of the incident report that is being carried out plus Jasmines notes from when she was in for study and I will ask to see x-ray (being vet nurse I have see many naso -gastric tube placements and want to see how obvious it is).

I'm not calming down at all, in fact I think my rage is building and want to go and slap them all but i'll put my polite sensible yet angry head on tomorrow. Will let you know how I get on and thanks for support xx

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Permalink Reply by Jenny Cadman on July 8, 2010 at 7:43

Hi Emma,

You sound like you have things under control, it's hard to try and stay calm. Let's hope they get their act together and get her booked in again, so unfair though.

Ruby is seeing a skin specialist this morning about the infected eczema on her arm which won't heal and keeps weeping, he is hopefully going to diagnose a milk protein intolerance as I've thought for ages that she has ir and since weaning her skin reacts to anything with added milk in.

This will be the 5th doctor we've been to about her arm, we've had cream, 2 lots of penicillin and more cream and in 5 weeks it has doubled in size and is red raw.If the one today says it doesn't bother her, I will throw something at him. I just want it healed as I worry it could scar and is in a noticeable place. She is doing a lot of batting/hitting with that arm and scratching and I wonder if it's because it irritates her as opposed to normal baby behaviour. She never touches the sore bit though and doesn't cry when I clean it.

Goo luck today, I hope you make progress xx

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Permalink Reply by Sarah on July 8, 2010 at 8:11

Hi Jenny, Good luck for today! Sounds so irritating for her- that's fortunate she doesn't cry when you clean it or that would make it so distressing for you both. Maybe she realises it feels bit better after you clean it. Ben is suddenly eating better even on bad days when previously he would've refused his food he's eating well just refusing his milk...I think he's realised at last that he feels better if he eats! Hope appt goes well this morning & that Ruby is ok xx

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Permalink Reply by emma louise kelly on July 8, 2010 at 8:48

Good luck today, surely they will realise that if none of the meds are working there is an underlying problem i.e. food allergy, eczema is a typical sign of it ??? the mind boggles. Sounds like the arm batting could be related to eczema, Jasmine started banging her leg up and down which coincided with her reflux worsening. When she was feeling better she stopped doing it but she's bad again at moment and has started leg bashing again. They're trying to express their discomfort in other ways than crying I think.
I'm trying to stay in control but unfortunately it's getting to me and keep bursting into tears, just the injustice of it all and watching Jasmine suffer needlessly but then once i've regained composure i'm back on track.
Jasmine getting worse too which is worrying, she is showing signs of reflux (back arching, sudden inconsolable crying, vomiting (not done for weeks) and night waking) but also is teething so hands in mouth constantly, won't take dummy, off milk and now she is sneezing constantly and sounding very congested in her nose, also showing signs of sore throat, coughing/gagging and choking. I'm not sure if she has cold or if it's the reflux, her nose isn't running bt she sounds like a piggy??
Good luck again Jenny, hope they help xx

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Permalink Reply by Jenny Cadman on July 8, 2010 at 17:55

Hi Emma,

How did you get on today?

Our day was a bit of a waste of time, he doesn't think it's the milk and she has been prescribed another cream and we go back on Tuesday. She appears to have diarrhoea as well now and we've just had an exploding nappy. Have been giving her different milk at bedtime and am wondering if it's that as she only seems to be able to tolerate the comfort milk. He also reckons the red marks behind her eyebrows are a stork birthmark, I felt like saying what a load of bollocks as I know she did not have them from birth and they come and go. I have little hope that this cream will actually work but we'll see. I might take her to GP tomorrow if she still has diarrhoea but I imagine they'll say it's a bug and will be yet another waste of time.

Hope your day was more productive and Jasmine been ok xx

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Permalink Reply by Sarah on July 8, 2010 at 18:17

That's rotten Jenny! Could you maybe buy a tin & see if it helps then push some more for them to prescribe it? You must be so frustrated!! They've already conceded she may have intolerance to her milk haven't they? With her excema so bad aswell as her reflux i find it hard to believe they're discounting it!
Ben's dietician did start to say when I mentioned wheat that it doesn't usually cause wheezing...but after I stated how I'd come to that conclusion & had re-tested him on it with same result as well as saying the AllergyUK site listed wheezing as an allergy response to wheat, she backed down saying yes it does seem the prob & not to retry him on it for another 6mths at least & to ask GP for prescription for wheat substitutes!
I know it's not right but maybe you'll just have to prove that going milk free will help her. Good Luck & hope Ruby's arm clears up soon! x

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Permalink Reply by emma louise kelly on July 8, 2010 at 18:16

Hi Jenny, oh dear, why are they constantly dishing out different creams, surely it would have responded by now, even if not better would have improved. Is it steroid cream you're trying? Didn't they say it was ringworm at one point? Have they done any swabs of it to see if there's any bacteria present, obviously there isn't else would have responded to penicillin. Birthmarks!!!!! I think the name is a give away and if they weren't there at birth they're not birthmarks!!!! Dear oh dear oh dear.

My day hasn't been too good either, took Jasmine to GP as throat bad etc and he said she has a red throat but chest clear so juust a cough and cold, I don't believe it is and he didn't even take her temp!
I said about being referred to different hospital as thought Torbay rubbish and he said he thought they were fine, I asked if they had let him know she was on 20 mg of omeprazole but their records show she is still on 5mg (yeah really good hospital Mr patronising GP).

Have spoke to PALS and they advised I complain in writing to chief exec of hospital as it will be taken notice of more so thats my evening planned, also spoke to MP and they have said to mention them in letter of complaint.

I haven't heard anything from hospital with regard to booking Jasmine in for ph study, will ring them tom if no word.

LOL I have just had to fumigate car seat as Jasmine decided to have diarrhoea also - putting it down to spinach! It is a definate sign of food intolerance, can you speak to HV as one said to me if I get no joy from GP she could do leg work and speak to hospital re milk so might be worth a try xx

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Permalink Reply by Jenny Cadman on July 8, 2010 at 20:22

Hi again,

Lara, bless her has offered to send me some milk so can try it and then will have a case for getting it prescribed if it works. I wouldn't mind buying it if it was widely available and not so expensive, I'd even pay what I pay for her comfort milk towards it.

My hv is crap and on holiday but the community nurse who works with her is ok but a bit slow. She has referred us to a dietician a week ago so we'll see how long an appointment takes to come through. Maybe she will be able to help with regards to the milk. I wouldn't mind buying it if it was in the shop or even paying what I pay for her comfort milk towards it, I just want her skin to be better.

The new cream is anti-fungal and steroid so that's the 3rd different one as well as the antifungal one she was wrongly prescribed when she was meant to have ringworm. I still reckon that was what caused the arm to get like it is in the first place.

Good luck with the letter and if you want a second opinion you can always post it on here xx

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Permalink Reply by emma louise kelly on July 8, 2010 at 8:51

Hi Susie, thanks for support, I feel exactlt the same - dumbfounded! I also feel guilty now as it was me who kind of pushed the test by refusing to leave a and e until they did something, just trying to do the best for my baby but causes more and more problems xx

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