NHS nightmare - can anyone else beat this?

This is a long one but I need to get it off my chest so please bear with me:

Matthew was born 25th February 2009 and I knew I wanted to breastfeed and was pretty determined to do that. He was 7lb 13oz, right on the 50th centile. Before we were even discharged from the hospital, he'd started vomiting after feeds if he was laid down horizontally, which was naturally at night when there was nobody to see. He's my first baby and I knew posseting was normal so at first I didn't really think anything of it and I just cleaned it up, changed the sheets, his clothes and his nappy etc. as they were all soaked from the outside in. In hindsight, my milk hadn't even come through yet so to be bringing up as much as he was clearly was unusual as he can't have swallowed a lot to begin with. I never even mentioned that he'd been sick as I didn't know there was anything unusual.

After being discharged from hospital, the midwives came daily. They kept asking for the first couple of days, "Has your milk came through yet?" and I was beginning to think something was wrong with me as they were looking at him when they asked me. On the third day I knew there was nothing wrong with my supply and apart from anything else, he was vomiting after every feed, so common sense told me that he was getting fed plenty to be bringing it back up. I told them EVERY day that he was really quite sick and they would always respond with, “It’s normal for a baby to bring back up part of the feed,” and then, “Is this your first baby, yeah?” It was horrible because I felt so stupid but like anyone would I took their word for it.

He wasn’t gaining weight and by the tenth day he still hadn’t regained his birth weight. They kept asking how the feeding was going and I became pretty sure that I wasn’t doing it right because of what I was hearing. I didn’t know any better, and they should have. I kept telling them he was sick all the time and that he cried a lot – and not just crying but really blood-curdling screams that chilled everyone who could hear – and again I was asked, “Is this your first baby?” in a rather patrionising way. I was firmer now that others seemed concerned as well about the fact that he seemed to be in pain, but the midwives discharged us to the health visitor on the 11th day. He still wasn’t back at his birth weight but he was gaining steadily so they let us go. I don’t really think they should have to be honest because he sounded more in pain by this point but as he was feeding so frequently he was always feeding when they came round and so they only had my word to go on.

The health visitor came round first on 13th March, on day 16. Matthew was asleep so she didn’t weigh or measure him as that would have woken him.

She came back on 17th March, day 20. It’s noted in his book that he was “possetting frequently.” I’d become really worried about his screaming and knew he was clearly in pain, so she noted, “difficult to break wind; advised Infacol.” He didn’t burp often so I kind of took that as a sensible reason and I shouldn’t have but didn’t know any better. Again, in hindsight, breastfed babies don’t suffer from wind as badly, generally, as I understand it, so when he didn’t burp I don’t think he needed to. When he did, he didn’t always bring up milk and he brought it up himself. We got the Infacol on the minor ailments service for him to try. I remember being happy that day that we had a reason for him being so upset and thinking that now he had something to help him feel better, and that it might get better.

The next visit was 30th March, day 33. She noted again, “Possetting frequently. ? reflux.” That was the first time it was considered, really. She’s also noted, “slight weight gain.” He was now just below the 25th centile, at 8lb 13oz. Nothing else was done that day.

Next visit was 3rd April. He’d now had a slight weight loss. HV observed a feed and agreed he was attached and feeding well, and as I had no pain we were happy he was getting milk from me. I had some slight problems earlier and therefore knew the difference so I knew for a fact he was latched properly, and I was able to express milk fairly easily as well. He was feeding REALLY frequently and being really sick, and inbetween feeds was so upset. He was sick straight after feeds, and also a while later. There was just no pattern to it. I began to wonder if he was allergic to my milk. We were given an urgent GP appointment for that day, and he then referred him to the hospital. We were now quite worried because it had suddenly went from, “babies are normally sick” to “urgent hospital referral” and it didn’t seem right. He’d been very forcefully sick, and at the time I considered it to be “projectile” so the GP mentioned pyloric stenosis as a possibility and we started freaking out. By this point husband was back at work and I was not coping well with the scream, feed, vomit cycle and the fact that Matthew simply would not sleep.

7th April the covering HV came back again (ours was on holiday, fair enough) and we were still waiting on our URGENT appointment. She was a bit surprised we were still waiting and said she’d follow it up. Late that evening I got a phone call from the Children’s Ward and they’d only just found his urgent referral and wanted to see him immediately, as in, “You bring him up right now and your husband can pack a bag for you both later.” We got to the hospital at about 6pm and were finally admitted just after midnight, having ruled out all sorts of infections. Did he not just refuse to be sick because we were holding him upright though! He was bringing up the most polite little mouthfuls and it was really frustrating.

We learned that “projectile” wasn’t what we thought, and thankfully they diagnosed reflux on the basis that he was in pain, not gaining weight well (or at all, now) and the frequent feeding / vomiting pattern. He was feeding every hour to hour and a half, which was not normal. I’d said this all along. He was prescribed Gaviscon and Omeprazole 2.8mg daily. He gained really well on the ward and was discharged on the 9th April so we felt better, but he still screamed horribly, and so much so that one of the nurses insisted on taking him away for a couple of hours to let me sleep. She was lovely but said she thought it was probably colic and was sure it was wind pain, despite the reflux diagnosis.

13th April we went back to the ward to check again and his gain wasn’t much but they were happy he’d gained anything. He’d been so sore all week I insisted they check things again and they then prescribed Domperidone 1.6mg x 4 daily. I now realise they should probably have done this immediately to help him gain weight because the Omeprazole does nothing to help food stay down – just shuts him up whilst he’s on the ward. Gaviscon might as well be sugar because it’s totally useless in my experience but we didn’t know that then.

The Domperidone seemed to help a bit – he actually slept 4 hours a day now – and he was gaining weight a little, but at his 6 week checkup (in week 8) the GP observed an umbilical hernia. I’d asked what it was at the hospital and I was told it was nothing. GP insists the screaming played no part in the hernia appearing but the timing was uncanny and I disagree. It’s clearly worse when he’s distressed. Weekly HV visits continued and finally on 5th May she observed him as “very alert today and interactive with mum.” What she really meant was, “he’s not screaming today.” We went to 2-weekly visits as he was gaining weight – slowly.

On 5th May he reached 4.5kg and I had read the Gaviscon packed, so I queried his dosage. HV agreed I should discuss it with the GP and after talking about it I put a note on his repeat prescription request to ask them to check every drug dosage for him. It came back the same.

By 18th May he was just following the 9th centile and by 17th July (week 20) he was below it. His notes say, “Still not commenced weaning!!!” and when we discussed it she meant it as a good thing. I wanted to wait because the guidelines all say it’s best to wait to 6 months. I’m glad we waited. She agreed. And yet the notes read as though we’d done something wrong. I still kept saying he still had really bad days and the vomiting was just as bad. I feel that as long as he gained weight nobody really cared.

I queried his dosage again because I just didn’t believe it could be the same now that he’d gained weight. He weighed 6.15kg now and I had already started giving him double doses of Gaviscon as per the instructions on the packet but it didn’t seem to help. He was really fractious all the time and I think at this point I had accepted I was depressed but I didn’t want to tell anyone.I couldn’t cope with him anymore and I couldn’t be alone with him because the crying made me so upset and it never seemed to stop. When there was someone else around I could focus on something else and they could take him into another room. I needed help but no amount of therapy or medication (for me) would make the screaming stop and that was what I really needed.

17th August he’d lost weight over a month. I started weaning a week early. He was ready and we skipped purees and mash altogether (baby-led weaning). I felt quite pressured to because of the weight loss and I didn’t want him to have to go back to hospital. HV took his book to discuss with GP.

They agreed to monitor his weight over the next few weeks and HV requested prescription for vitamin drops as GP said he’d need them. Infant feeding guidelines recommend them for breastfed infants as all formula is fortified and the GP noted that on his file.

I went to collect the vitamin drops and was told GP had instead advised I get them on Minor Ailments. The notes said, “discuss with HV” but she knew nothing about it because nobody had told her. I went to get them from the pharmacy and they said they couldn’t give them on minor ailments, but my GP should prescribe them. In fact, my GP already prescribes them for other patients in the area who collect at that pharmacy. We got really annoyed at this and bought them ourselves, after having to research which type to get, as Abidec is made with peanut oil, which we were avoiding. We bought Dalivit. We discussed with HV and she agreed it was “unfortunate” because neither the GP nor chemist wanted to pay for it, and he did need it. She knew it was a potential issue but they hadn’t told her it had happened with us.

Weekly weigh-ins continued and although he was gaining, it wasn’t quickly enough and he was now beneath the 2nd centile, in the blue section. The GP again put in an URGENT referral to the hospital on the 31st August.

Finally on 17th September (17 days after the URGENT referral) he saw a paediatrician. She reviewed his medication and was shocked to find he was still on the same dosages as originally prescribed when he was 5 weeks old. He was now 6 ½ months. I felt physically sick as I knew the GP had screwed up. I’d asked twice for him to check against Matthew’s weight and twice was told to continue on the current prescribed doses. The look the paed gave me when she asked if I hadn’t spoken to a GP about his dose – it’s like she thought I was such a silly little girl for not realising he needed more but I DID. I was so angry. He’s been so far below the effective dose that we might as well not have bothered. We forced him to take Losec MUPS every day for NOTHING. She prescribed 5mg Omeprazole and 2.8mg x 4 Domperidone. She agreed the Gaviscon was useless now and we’d already stopped using it anyway. I asked her to complain to the GP and she wrote to him. He needed to know the new doses for the file at any rate. She referred Matthew for a barium swallow “just to check,” which seems pointless as we know what was wrong. He had untreated reflux for several months. I agreed because she knew that as well and recommended it but it seemed a bit silly.

Next we went to the chemist to collect his new prescription. Since he was now on 5mg a day, they advised to give him half a tablet daily. The pharmacist wondered why we’d never had the liquid form of Omeprazole. I was livid and asked for it, but when I went back to collect it was given tablets. I was told to buy a pill cutter and assured it would cut the pill exactly in half. I had no cash on me so asked her to cut them, but she refused as they weren’t so easily cut. I left in tears, thinking they were happy for me to do it and possibly mess it up because then it would be me who had overdosed him. Previously we’d been making up a 10mg/10ml solution and syringing the dose out. I wanted to keep doing that if we couldn’t have a suspension but was told they wouldn’t give us a tablet a day as it was a waste. We’d been doing that for months and that was fine at the time, but now it was too expensive for the NHS to pay for. I was now TOTALLY distraught about how difficult it was for me to get medication for my baby. I pay my contributions and have worked since I was 16. So has husband. My son didn’t deserve this.

I tried to use a pill-cutter to half the tablet but if any of you have tried it, you’ll know it’s not an exact science. I now realise that he’s on a low dose and it would have been fine but I was worried the big “half” was too big and I’d overdose him so I went back to dissolving the whole tablet and syringing out 5mg.

Finally HV came back on 24th September. We detailed the above and she seemed concerned. Bloody right – I was in tears. She asked if I wanted to make a complaint but really, what would have been the point. She later got his prescription fixed, and got the vitamins added to it. She told me the GP hadn’t prescribed the vitamins because he was unaware of the Infant Feeding Guidelines. He’d referenced them on the bloody file and was now lying to me. I was livid. She also said she’d checked and liquid Omeprazole wasn’t available and she didn’t know why the chemist had said that.

I found this site today and obviously liquid Omeprazole is widely available, if only after some argument over cost. I am livid. I have been disregarded, incorrectly advised, abused, and outright LIED TO on several occasions.

It gets better. The hospital called to speak to Matthew the other day to arrange his barium swallow. They laughed when I said they couldn’t talk to him because he wasn’t yet 7 months old. Haha. How funny that they couldn’t be bothered to read his notes.

The barium swallow appointment is in now and it’s for 2pm. They say he can’t have any food or drink for 6 hours before it, which takes him into his overnight sleep. In effect, we’d have to starve him from his bedtime the night before. There’s no way we can keep him up all night and he never sleeps during the day anyway, so it wouldn’t help. Not even a nap. He’s just turned 7 months old, is breastfed, and that would be 14 hours without food, milk or even water. There is no way that’s acceptable. Even 6 hours is ridiculous.

Has anyone else had this treatment or is it just me?