pH results (finally) but still no help!!!!!!!!

Replies to This Discussion

Permalink Reply by Kulvinder on July 5, 2010 at 19:24

I agree that is horrendous! I would definitely complain but take her to a&e as if she is getting worse something needs to be done xxx

• ▶ Reply

Permalink Reply by Natalie on July 5, 2010 at 20:50

Oh my good grief, that is totally shocking!

Leo's reading was 18%,which got hm diagnosed with severe reflux! Poor little Jasmine. Why are they so flippant (or rather, invompetant)?

Also, I'm pretty sure the machines they use in the UK aren't that different to thosein Japan. We finished the study, the speicalist took the box to his office and by the time I had finished packing (we had to stay in the hospital to do it) he was back with a graph and the results so there's no excuse for keeping you waiting so long. He was talking about acid damage leading to other conditioons and how bad it is when the acid enters their lungs.

I rally hope you get some help before your next appontment, it's just crazy that you have to wait that long.

X

• ▶ Reply

Permalink Reply by Jenny Cadman on July 5, 2010 at 22:29

That is utterly disgusting. I think you need to kick up a huge fuss. Take her to Gp or a&e every day until they do something. You need to complain as well and maybe go to local papers as they will hate the bad press.

The NHS really does suck, I really feel for poor Jasmine and you of course.

Could you not get your oh to have a go at them as well?

Hope you somewhere soon, I know how you feel although my lo's reflux is nowhere near as bad as Jasmine's she's had a skin infection for a month and am trying to push for some prescription milk but they keep saying as she gains weight she is fine. So frustrating and upsetting, it's made me ill so can imagine how you feel xx

• ▶ Reply

Permalink Reply by Harriet on July 5, 2010 at 22:58

Hi emma it's such a shit situation. Billys result was 100%. ( didn't go above 3). He has been on lansoprazole for 2 weeks now but are now topping it up with ranitidine as flaring up again. We've only got this far by going private - his nhs appt has been transferred until October ( to give him time to grow out of it)( last seen April but promised appt in July). We have option of surgery but I'm scared but think it might go that way. Don't know what to say to you except to send you big hugs xxxxxg

• ▶ Reply

Permalink Reply by emma louise kelly on July 6, 2010 at 8:45

Hi everyone, thanks so much for all your replies. I'm going to complain today, have to go through a liason officer I found out yesterday. Then another letter to my local MP and then maybe the local paper.
I am thoroughly disgusted with the whole thing, how can a paediatrician who told me months ago I needed to stop trying to find something wrong with my daughter then turn around yesterday and admit she knows nothing about reflux. I have been lead to believe that I was neurotic and worried too muuch and Jasmines behaviour was normal BECAUSE the doctors didn't know what the bloody hell they were doing. Pure ignorance on their part and my daughter has suffered because of it. As Lara says, if I were to leave Jasmine in this level of distress and pain it would be classed as child abuse.

Jasmine is exactly the same on 20mg omeprazole a day as she was without it so i'm so worried about long term damage to her throat.

Hi Harriet, i've never heard of a result so severe, I knew Jasmines was whilst in hospital but was still shocked when told 70%, so Billys throat is exposed to acid constantly! Jasmine does behavioural oddities and i'm sure it's coping mechanisms, she has started rocking now. This is going to far and i'm sure it will start to affect her personality and development if we don't get a hold on it. Operation is a very scary thought, just the idea of it makes me extremely upset but if best option to prevent any futher damage I would consider it. What a horrible disease this is (but we all know that) xx

Thanks again everyone xx

• ▶ Reply

Permalink Reply by Catherine Robbins on July 6, 2010 at 14:17

Hi

I'm with King's College Hospital in London and Leon had his pH study there. We left the ward after having the probe removed and by the time we got home (about 20-30 mins) the consultant paed was on the phone to tell us to make sure he went straight back on the meds as he showed a 'high percentage' result.

We phoned the nurse specialist the next morning (the one who fitted the probe and downloaded the reults) and asked if she would send us the results so we had a copy before the next paed appointment. They arrived in the post the next day.

So.........you most def do need to complain! NHS service can work and work well so what you're going through is so unfair.

Best wishes,

Catherine XX

• ▶ Reply

Permalink Reply by emma louise kelly on July 6, 2010 at 22:43

Hi Catherine, thanks for input. I knew the test was done internally and thought that the results would be available pretty soon, rang every day last week to try and get results and they said results were there but no doc to look at them! It was only because I threatened complaining that a doctor somehow managed to find the time to ring me, but she even admitted didn't know anything. Was told by docs secretary that Dr Tozer (Jasmines normal paed) back today but surprise surprise no phone call, I rang and left yet another message.

Also rang liason service to complain and guess what, ANSWERPHONE! Stating they are being inudated with calls and so very busy, will get back to messages left but may not be as quick as we'd hope!!!!!!!!!!!!!!!!!!!!! I cannot even complain!

I feel so helpless and desperate, where do I go from here?? xx

• ▶ Reply

Permalink Reply by Kulvinder on July 6, 2010 at 23:05

Go to your local MP and press. This is outrageous. It would never happen to an adult but just because our babies can't tell anyone we're fobbed off. At the moment Jaya is ok but don't know how long for. She has been teething for what feels like forever but no teeth so very niggly with feeding unless she is starving or half asleep. I remember when the doc told me all babies are niggly with feeding i wanted to thump him so i can only imagine how you're feeling. At the end of the day you are trying to do everything you can to help Jasmine. Also just keep calling every hour if you have to until you get to talk to her paed. They will soon take notice xx

• ▶ Reply