Clare Jenkins's Page

Hi Clare

I saw your comment on nina's post and made a comment but just invade you didn't see it I'm posting here too.

I'm at the point where I'm fed up with getting no where on the nhs so would like to go private. I looked on that Drs website you saw and he looks good. What was your experience with him and how did he help and what were the costs involved. I have Ryan 17 weeks with reflux and Hannah 23 months whose reflux has just resurfaced after over a year and she doesn't eat anymore. We are waiting for an nhs referral for Hannah but it's been 2 weeks and we've still not heard anything. And with Ryan we got referred to the emergency pead and he sent us away saying Ryan seemed bored but gave omep anyway but was only 4.2mg got 7kg

Any advice would be welcomed

Emma x

Hi Clare

Thanks for replying

I'm just not sure where to go from here with Ryan.

We've been down the gaviscon ranitidine route then kind out of hours gave omep liquid 5mls fir 7kg.  This worked great for about a week but I'd also been dairy free for a week or so before starting omep. My gp referred us to emer pead and typically Ryan was laughing and smiling so pead said he doubted he had reflux and was probably bored. He told mr to intro dairy again in my diet.

So after about a week or so on omep Ryan started to be sick again despite gaviscon but went to wanting to be held again constantly (when started omep I could finally put him down contented). And he started to scream with every feed. He'd only be on a minute or so before pulling off with a rock hard belly burping wet burps and crying, groaning and cruching his body in. And fists in mouth and constantly drooling. In fact the drooling started the day he started omep. Oh he was only on liquid for 4 days as I heard it contained lactose so was concerned about cmpa. Not had thus confirmed if he has cmpa though. I mention it to gp but she's says she doesn't think so.

He's now been on 10mg since Monday and I've seen a slight improvement between feeds in that he'll let mr put him down for a bit but feeds are still the same story although the crying isn't lasting that long it's more the groaning and fists. Last night he moaned and fisted for about 3 hours. Then wriggled on his sleep so much.

Does this seem bad enough to go private or do you think keep badgering the gp? I'm seeing her again Monday. I know it sounds strange but he's Been worse since being on omep. Perhaps the doses isn't enough?

hi clare
hope you are well.im just having probs using this site! did my last message actually get to you?mmm im not sure i did it correctly.thanks for the omep mups advice!much easier to give now.i hope this gets to you...here goes...
sarah

Hi claire, Paige is nearlly 3 years old nad still goes to see her hospital consultant.

They talked about the OP because my consultant though that at her age things should have started to heal. but as she had failed to cope on reduced medication it was clear things wern't moving as well as she'd liked/hoped.

Paige had been admitted into hospital prior after being sick for 18 days none stop and concerns about the weight loss and dhydration. We have reduce the Omeprozole right the way down to 2.5 at that point.

The only thing that stopped her symptoms was to increase back to 10mg.

she was meant to have a barrum swollow, but my god that kid kicked of big time, so it was all put on hold. The consultant has now said leave her on meds for a while longer till she is old enough to understand. She had me try re-introducing dairy and wheat and gluten.... That was a big mistake, within 5 days she was in increadable pian, so back to free from diet.

she currently takes Gaviscon advanced 2ml a day after breakfast, and 10mg Omeprozole a day after breakfast.

There are NO signs of reflux at all, except from time to time she will sort of reflux/burp togther but just rubs her chest and says parden me lol. (bless her). She is a very very windy child still, but has been since day one. I wouldn't worry to much about them offering you an op chuck it's only if they think things arn't healing. they will get you to try load of other things first, reducing medicaation will be one. Feel free to ask any thing chuck, if I can help i will.

Hi ya chuck, what made pig's consultant want to look into OP was because we had tried to reduce the Omeprozole three times, but with no joy.

She stated that she could stay on the medication for the rest of her life to control it, but was that really fair on her????.

Each time the Ompeprozole is reduced she will begin to vomit or have very runny poo that blisters and burns her bum, indicating lots of acid.

One of the BIGGEST worries for us all, was due to her breathing problems as a baby. Before being diagnosed she began to stop breathing and turn blue. This was classed as the body going into post trumatic shock. Due to the excesive raised amounts of acid in her body. With the reflux mussle (osophigus) (cant spell it lol) being fully open the acid could flow up and into the lung area. So her body shut down to prevent the acid being breathed in to her lungs, creating an even bigger problem.

Although her body was trying to help its self by shutting down, it didnt do any favours for the breathing, and possible brain damage at the time. You see I think it was that that they were more worried about than just the reflux.

Hi ya chuck, dont mind a chat, but work all diff hours so hard to speak some times on phone, but when get chance not a prop chuck... Can always find time to txt though, (work cant see me txting lol) here's my number chuck, 07790160495.... feel free to txt when ya want even if its just to moan lol.