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?
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?
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Replies to This Discussion
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Permalink Reply by Matthew's mummy on -
It's awful but I can't believe I'm actually relieved it's not just us! It sounds like you've had an horrific time and I know exactly what you mean about your relationship - I ended up moving out to live with my mum for a few weeks because I couldn't handle ANYTHING except the baby, and not even him most of the time. We're still a total mess now, I really hope things pick up for you soon as well.
Maybe we should keep this discussion page just for people to rant on because I think it helps sometimes!
Love,
Marion.
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Permalink Reply by Clare Good on -
Sorry you've had such a tough time. I've had something similar including a 9 week wait for an "urgent" appointment although my son's reflux isn't quite as bad as what you describe for your son. But I also had the first time mum "he's just a sicky baby" for months and months. My boy wasn;t diagnosed with reflux until 7.5 months. He's also dairy intolerant. We had some help but it was only when I basically broke down at the weigh in clinic that they started to take me seriously. I can't believe we have to let our babies suffer because the health professionals don't believe us. I know it is hard to diagnose but to let things persist for so long is criminal!
I still breast feed my son - he's now 11 months. He is slowly getting better so I hope your boy improves also.
Can you wake him a little early and give him a feed in the morning? Maybe wake him at 7? Hope the appointment goes well
xx
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Permalink Reply by Matthew's mummy on
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Hi Clare,
Thanks for your reply. I can't believe you had to wait so long for a diagnosis. It's just terrible and nobody ever believes how hard they scream. Even if they hear it they think it must be a one-off and they'll tire themselves out, but they don't do they? I probably could wake him at 7 but the last couple of times I've had to wake him early he's been awful all day, and that's without starving him. When he's with me he still feeds every two hours and you know what it's like trying to make them wait for a milk feed. I could do it but God knows what state I'd be in at the end. It's as much for me as for him that I'd rather not, if I'm totally honest, especially since it'll end with having to force him to take a barium swallow. I bet they wouldn't even let us sit down long enough after to catch the sick and feed him properly! I think if they would give us an appointment first thing it'd be fine. There's no reason why they shouldn't, but they didn't take me call today when I tried to ask so I'l gearing up for a fight. I hope I'm wrong!
I'm glad to hear things are slowly getting better for you - it's just so sad that it took as long as it did, and particularly when it could have easily been managed sooner. I think the worst of it is that even after they take notice and try to fix it, the damage to mum's health is done. I still can't hear him cry for even the shortest time without breaking down about it. Even just a little whimper sets me into a panic because I'm so terrified he won't stop. I think back to how I could listen to him for a couple of hours in the beginning and I'm just so sad that I'm now not the Mum I could have been for him.
Take care,
Marion x
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Permalink Reply by Matthew's mummy on
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Awesome. They're insisting on 6 hours, even if I only gave him breastmilk, which is more easily digested than anything else, and they won't give him in an earlier appointment because they need a paed there and they ony work the Friday from 2pm. Is it just me or is it really stupid to have the adult appointments in the morning and the children's in the afternoon? Surely it's easier to keep a hungry adult calm than a child? They won't even ask the paed to come in early.
I thought about it and decided to just cancel it. He doesn't need this test. We know what's wrong and it's very selfish of me but I just can't hear him upset for that long. I can't keep him up all night either because we fought so hard to get him to sleep at all and I'm worried he'd go backwards if we did that. I feel awful for it but even if I got him up at 6 so he could have a proper feed and some solids, there's no guarantee he'd even keep it down and then he'd be just as hungry and even more upset. He takes such small feeds that he can't go that long. I know that. I know it's selfish but I couldn't bear it and it's not fair on him either.
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Permalink Reply by KELLY WILKINSON on -
hi sorry to hear about your little one just because you have been throuh alot i thought its best to say the liquild form of omperzole isnt know to be as effective as mups it has a shelf life and apparently as it gets to that date around 28 days it weakens i have read this on here nurmous of times and was told by two pharamists in my area my gp tryed to give it me and i refused it a nursery nurse came on here and said mups was the best too and she works at geat ormond street hospital all babes are different though so you could try it but i thoght i would tell you so your armed with as much information my little girl has suffered with reflux and shes one in two weeks and only weighs 17lbs 10ozs around 7.98kg she suffered with puemonia at 10 wks that was mis dignosed as bronchilits for 7wks till at 17wks she was admitted with only 85% oxgen only weighed 8lbs 13ozs was severley anemic cause she was only taking 9ozs of milk a day i took her the doctors every week and was told its a winter virus in the end the hv sent a respiratory nurse out who admitted her straight away now she comes as often as we need her Aaliyah still has to have inhalers to aid her recovery we have just been to alder hey and have finally been told Aaliyah suffer from recurrently aspirating on acid and sick into her lungs which affects her chest so she needs to grow out of the reflux to get better she is better since starting solids and the crying in pain has stopped so it does get better just a gudeline though Aaliyah is on 15mg of mups and 3mls of domperidone x4 a day at 7.98kg could your doseage not be increased if lo is still suffering good luck.x
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Permalink Reply by Matthew's mummy on
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Thanks Kelly. I was in two minds about omp liquid because of what I read here as well, but he spits out most of the MUPS so I'm keen to try it. My main issue is that they outright lied to me about it not existing, purely for costing. I agree about the dosages but as he's only just been upped I don't know how long we should give them to work. I know it takes time to kick in. I'm jusy so mad that it's like starting all over again. We're back at hospital in about 4 weeks so I guess by then we'll know.
You've obviously had a hell of a time. I'd heard that the wee ones can have breathing problems because of the acid but luckily for us it's just been colds etc. You must have been so worried. I hate that they do this because it's our babies who suffer. I can understand why people do crazy things under stress now.
I hope things keep getting better for you and yours and that she has a lovely birthday.
Take care,
Marion x
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Permalink Reply by Matthew's mummy on
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I've signed it this morning and I've asked everyone I know to do the same. We're all behind you!
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Permalink Reply by Wendy Marsh on
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My story is no different but I will say at least you have a HV who listened mine was c**p, I have also been talked down to by GP's and I'm a second time mum!! We waited 7 weeks for our urgent Pead appointment and to add insult to injury when he got worse and I tried to see the only GP that had been slightly helpful I was told I would have to come to the surgery at 8am in the morning to stand a chance of getting an appointment, when I told them I had two small children (one 5 months and one 3 years) they told them to bring them with me!! I arranged for hubby to go into work late and go to the surgery at 7.45am, there were already 9 PEOPLE queuing and the front 2 were in deckchairs like they were waiting for the sales. By the time 8am arrived there were 23 people queuing, I began to wonder if this really was 2009. By the time I get to the front of the queue and ask for the appointment they tell me there is none left for this GP, at which point I burst into tears and take one with another GP who later lectures me on how his daughter didn't sleep through until she was 3, why don't they b****y listen, its not about sleeping through its about wanting a son who doesn't scream in agony.
Anyway, we have in fact only just returned today from a 3 day stay on the ward and after 4 consultants constantly changing meds and contradicting each other (thats another story) I have ffinally found a pead who is a Gastric Pead and knows what he is talking about.
I just want to say that our ward uses MUPS and not liquid Omeprazole and they say it is best and also my new fab pead actually said today that Reflux is all about 2 steps forward and one back and that once you accept this pattern you are half way there, you need to learn to ride the flare ups and enjoy the in between and if the meds are correct thats what you should get.
For the first time I finally feel I have a professional who can help and I understand what is going on but how sad that I had to fight so hard and my son had to get to the point of choking and going to A & E to get the support we deserve.
Thank god for this forum and long may it continue.
Wendy
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Permalink Reply by Matthew's mummy on
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Amen to that Wendy. I'm glad you've managed - finally - to get someone who understands. I'm seeing our HV tomorrow (again) as she's still coming weekly despite the fact Matthew's 7 months now. My husband's taken the day off to be here in case I go mental or something :)
All the best,
Marion x
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Permalink Reply by Yvonne Quick on
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My LO was diagnosed at 9 weeks old after i walked into A&E in a desparate state. I saw a pead within 2 hours.
As my son is my second child (and my daughter suffered with none of the awful symptoms of acid reflux) i was taken seriously. However i saw a few doctors before a senior doctor saw me to tell me she thought it was acid reflux. All the other doctors on the ward kept telling me it sounded like a bad case of colic! Ahhhhh!
These young childless doctors have no idea, they really dont. Luckily becuase i already had a child (only 19 months old) i knew that my son was experiencing horrendous pain around feeding time - i knew it was silent acid reflux but wanted the doctors to confirm it.
Any way, they did. He is no 18 weeks old and he has been in hospital four time (one time for three days) and his meds have been increased every time. He is now on 12ml of omperazole and 2.6ml of domperidone 4 times a day.
My husband, daughter and I have been through hell with this awful conditon my son has. My husband and i have nearly split up several times. Two weeks ago i took both kids to my sister because i couldnt cope with being at home anymore (it really helped.)
He was doing really well for a couple of weeks but early this week he reverted back to screaming at feeding times and i have resorted to walking him about, proping him up in front of the telly - anything to distract him to get him to feed. It amazing how 1/2 oz of milk can mean so much. He could be screaming his heart out but all i think of is 'just another ounce please.' its bloody awful and i am obsessed with his feeding. I write down every feed quantity and am obsessed with his weight gain.
I feel fortunate that he was put on meds quite early and although his weight has dropped away from his orginial centile he is still putting on some weight and so the doctors are not worried.
I totally agree with what your 'fab' pead said about '2 steps forward and one back.' It really feels like that for me and nobody has ever put it that way before but that comment has really helped me put it all into perspective.
The flare ups are awful and so depressing but learning to ride them out and then enjoy the better days is the best way of looking at it. I know not everyone is as lucky as me to have good days but sometimes the goods days are so good i forget whats wrong with him and when he has had a flare up (like at the moment) i become so unhappy and feel so desparate.
Another thing that i dont know if anyone wishes to discuss is the anger one feels towards the condition when its at its worst. I feel so guilty sometimes because although i feel sorry for my son, i also feel like i hate him at times. I could cry right now for admitting this but its a true feeling. I think because he is my second and my first was a dream baby really (especially in terms of feeding) and she is very young too (only 23 months old) i resent the time i have to spend with my son and feel like i am neglecting her. So i blame him for how bad things sometimes are. Its the worst feeling in the world because once he stops feeding and i sit him down and tickle under his arms he laughs at me and that melts my heart. But as soon as i try to get that 1/2 - 1 oz down him and he screams again - i could scream too. Believe me i have done at times because its just too much to bear.
Any way, because this has all been going on since about week 2 with my son i have learnt to control how i feel and hope and pray weaning him will help. I gave him some rice the other day and he hated it so i gave him some cow and gate baby porridge yesterday and he had two little spoonfuls. I feel like i have no choice as his feeding has hit a rough patch again and as he is over 17 weeks now i feel its the right thing to do - and also helps me 'ride out' the bad times a little better.
Any way, as this is a page to rant a little, i would like to say my HV was totally crap. I told her what was wrong with him! She just said colic!!!
My GP also said it was colic even though he saw him screaming during a feed. I mentioned reflux and he said it wasnt because he wasnt vomiting. What!!!
Two doctors at the hospital said it was colic (one doctor was on the A&E ward so fair enough but the other was a 'young' doctor on the childrens ward.)
I know the only reason i was taken seriously is because they asked the same question they ask everyone 'Is this your first baby?' Fortunaltely i could say no and could compare the two and my daughter had colilc so i knew it wasnt simply colic.
Any way, i hate this condition, it has nearly destroyed my family but i am learning to accept the bad days and remind myself that imy son has been bad for 16 weeks on and off and he is still hanging on in there. I love him to bits and i wish him and all our children a speedy recovery.
Oh yeah and i found the omeprazole suspension rubbish. My son has 12ml a day so i disolve two tablets and extract what i need. I was disgusted to read about the costs of making the suspension and one pharmacy refusing to do it. And cutting tablets in two for the sake of saving money is a disgrace. Yes this medication is supposed to be very expensive but these are babies who are bloody desparate.
Good luck allxx
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Permalink Reply by Wendy Marsh on
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Yvonne
Please don't feel bad for sometimes hating your son as believe me I have done exactly the same on numerous occasions but just like you I also love him to bits, I am in the same situation as you that Harry is my second child and my first son was a fab baby so it has been hard, I also feel he has robbed me of time with my older son who has coped remarkably well.
It does get better Harry is now 23 weeks and 3 weeks ago was in hospital but for the last week has been really settled and is even beginning to settle at night, its been the longest 5 months of my life and I hardly dare think we may be at last seeing a light at the end of this very dark tunnel. For me weaning did help so it is worth giving it a go.
It was my pead that made the comment about two steps forward and one back and you obviously felt the same enormous feeling of relief that I did when he said it, it was like it finally started to make sense. Hang in ther, you are doing so well and things will improve many people on this forum say that the stage you are at (4 months ) is often the worst and it certainly was for my lo.
PM me if you need any extra support or just keep posting as at least you know that all of us on this forum know exactly where you are coming from.
Take care
W x
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