Dorset

Comment by Kim on August 8, 2010 at 9:29

Hi all, Im Kim. I have a 3 month old little girl (Ellie) who has suffered with silent reflux from birth and is having a really tough time with it at the moment. I am a first time mum, and the journey so far has been extremely stressful for both my LO bless her and our family. Ellie was sent on an emergency admission to hospital at 7 weeks old after holding her breath in her sleep (they think it was due to the pain of the acid that was trapped in her oesophagus) and been seen by the hospital and discharged on omeperazole, domperidone and gaviscon in mik. She has now stopped breath holding- massive relief as that was very scarey, esp as it was our angel care monitor going off early hours of the morning that allerted us to it.... :-s. Anyway, we are currently waiting to go back to the hospital under another referral as Ellie has been so windy/back arching/in pain at milk times and went off her milk for a week or so. We have changed her milk again now to cow and gate comfort and she is drinking again but very windy. We have considered weaning early and did try her with a little baby rice but she wasnt that interested and was still screaming for milk but when she took her milk was windy and in pain again. Life really is a rollercoaster with a reflux baby, just when i think we are moving forward something else crops up, and i feel awful for my LO as it cant be a very happy start inlife :-( Fingers crossed things will start to settle soon....... I wondered has any one had similar experiences with their little one that they would like to share, sometimes its just nice to know your not theonly one out there and you can learn from other peoples experiences. Any advice from anyone on types of formula that they have found to be good for a baby with reflux would be greatly welcomed.... :)

Comment by Joanne Clemas on September 24, 2010 at 20:38

Hi Kim, I dont know if you still use this site. I too am a first time mum with an 11 week old daughter with reflux. She was diagnosed at 3 weeks and is currently on ranitidine and domperidone which dont seem to be doing anything. She was also on gaviscon but it constipated her! The biggest change we have seen in her is when they changed her milk to aptimil pepti for cmpa. She used to cry constantly all day and night but that has now minimised as has her wind! She is still bad, but not half as bad as she was although she has expolsive nappies still! But all the reflux symptoms are still there. She also has a movement monitor which is constantly going off which is very scary and she often suddenly gasps for breath. At the moment we are hoping to be reffered back to the hospital as the GP doesn't seem to care as Harriet is putting on weight and typically as soon as we get to the doctors she seems to stop any reflux symptoms completely! It is hard and the poor little things must feel so awful and this is all they have known life to be like :( I was wondering which hospital you visited and if you found them helpful? I was hoping that Harriet could try the omeperazole as I have read some very positive things about it on this site. If you do still visit this site I hope your daughter is doing better now. x

Comment by Kim on September 24, 2010 at 21:51

Hi Joanne, Thanks for your message, im sorry to hear your little girl is having a tough time too. I have found this site quite useful, its just nice to know im not alone- our girls cases seem very similar. Ellie is on the aptamil pepti now and its working quite well, much better than normal milk anyway! She still has bad wind and where as she never used to bring anything up, just acid (which was painful and bad enough, oor thing), shes now started to bring a lot of milk up too :( but since the omeperazole she doesnt have the gasping for breath episodes and has improved quite a bit with the screaming- i can now lay her on her back on the play mat and she doesnt scream the place down! Wahay! Its so much stress isnt it, it has brought me to tears before seeing my little girl in so much pain, and like you said its al theyve known in their little life so far- its so sad :( Are you local? I went to poole hospital as an emergency referral as i went in to see my docs and said Ellie has been holding her breath and going blue (sometimes) and he immediately referred me. Ive had the same issues with the docs and my hv though, most of them just dont seem to care as long as they are putting on weight, and Ellie does that trick of looking all happy and content the minute the doctor sees her, she just gives them a big grin and i get 'well she looks healthy doesnt she, and shes gaining weight well, tahst the main thing.....!' Typical! LOL. We are uner the paediatrician (cant spell that!) at poole hospital now, and they have been very good but basically have said she should grow out of it, the reflux has flared up due to cmp intollerance (rather than allergy) and to try weaning her (shes now 4 1/2 months old) and keepon the meds and milk and go back and see him when shes 1 for a review! So its a long road- but there is hope. On my many desperate web browsing sessions searching for reflux miracle cures and answers it seems a lot of children grow out of it by the time they are 1 year old or 18 months- it seems a long way away but im sure it will fly. I m starting to have a lot more hope than before! I hope things get better for your daughter soon. xx

Comment by Ellie Dare on October 7, 2010 at 10:46

Hi Kim and Joanne. I'm Ellie and have been searching for Mums near me (Bearwood) with babies that have reflux, we have just had a couple of days in Poole hospital with my little one George (two months today, where did that go?!) and have started with the Gaviscon, ranitidine and lactulose which luckily seem to be working for him, for the moment. Weigh in Friday so hope he's put some weight back on! It's nice to know there are others tackling reflux, although am sorry to hear that your little one's symptoms are more than George's at the mo. Just wondered if you still get out and about as normal? I suppose you get used to things as you go along, but I don't like the thought of George missing out on anything just because I'm expecting him to be sick most of the time. Any advice would be great, and maybe sometime in the future we could meet :-) Ellie

Comment by Lisa on October 7, 2010 at 15:20

Hi all, I live near Christchurch and my baby is now 7 months and we have been through some trciky times but it is getting much better and loads easier!! She still on meds and still a sensitive baby but feel that I can now get and out and about without her screaming the place down! Still sick on occasions and has been over a few instruments at rhyme time which I subtely wiped off and hopefully no one notoced! It was carrot sick as well - not nice! I just thought there should be more support for people with reflux babies as people who don't have them don't seem to understand!!! Lisa

Comment by Kim on October 7, 2010 at 20:05

Hi Ellie and Lisa, Thank you both for posting.
My Ellie has silent reflux so isnt often sick but brings acid up regularly and it stays in the back of her throat and makes her gag and scream, poor little pickle. She is generally doing better than she was at 2 months and the meds have helped enormously. You and Lisa are right though, it is so hard sometimes to get support, im lucky that my family have been very understanding but generally all the 'health professionals' have been a nightmare! Every one of them says something conflicting! Lisa, its promising to hear that your little one has improved so much and things are getting easier. I havnt been brave enough to stay at a baby group, i went to one for an hour once and my Ellie couldnt be led down on her back like the other babies on the playmats and she got really upset and stupidly I felt really self conscious and hated it and havnt been back! Its such a shame because i want her to make some friends (and i would quite like some 'mummy' friends too! LOL) but i just dread going out! I must admit though, since her colic diappeared (we had all of that too until she was 4 months-ish) things have been easier to go shopping etc without the screams, bless her.
Ellie- I hope the weigh in shows your little one has gained weight well. Im quite lucky in that my Ellie is doing very well with her weight (shes a very happy 75percentile!) Send us another post and let us know how you're both doing. :)
Lisa- i know exactly what you mean about ppl whose babies are completely healthy not understanding reflux- im sure that secretely a lot of my friends (and even family members)think i exagerate Ellies symptoms- ive even had doctors (back in the early days before diagnosis) tell me regularly that I was imaining things and Ellies just a normal baby but with a bit of colic and bad wind! Its so frustrating, it can drive you crazy! It really is a rollercoaster ride. Did you have any trouble with weaning, have you tried this yet? We were told to wean Ellie early (shes now 5 months) and it was disastrous, we were left with a very unhappy baby, lots of tears and days of tummy pain, straining, regurging, the lot. Back on the pepti milk only now and have seen a massive improvement.
Hope to hear from you both again soon, its nice to connect and have a moan and natter with other mummys in the same boat :)

Comment by Lisa on October 11, 2010 at 20:47

Hi Kim, yes we weaned at 21 weeks but did it very slowly with just baby rice for a week or so and then pear puree etc and she was fine but I wouldn't say it made a difference with reflux until she was on 3 meals a day and until she had seperate solids to milk otherwise you would end up with a milk and solid puke together!! Sometimes she does strggle to bring the sick up particulalry when its 2 hrs or so since she ate and its horrid to watch her but doesn;'t happen too often. She is still a pickle with some groups and stuff but not sure if this is anything to do with reflux or just that she is sensitive. Have you tried any of the free rhyme times at library as these are only half an hr and easy to leave if you have a baby meltdown. You can look up your local library online (not sure whereabouts you live??) and usually tells you when they're on. I started with these as didn't feel I could commit. Its a lot easier going for coffee etc and the odd lunch which could never have done before - so you will get a life back soon hopefully!!.
Let me know how the weaning goes.
Lisa

Comment by Ellie Dare on October 15, 2010 at 16:09

Hi all, thanks for your advice and reassurance, I'm learnng a little more as I go along and speak to people who know what we're going through, and George is having good days and better days :-) Putting on weight, ideally should be more but early days. xxx

Comment by Joanne Clemas on October 15, 2010 at 19:48

Hello Kim, Ellie and Lisa, I didn't realise there were more 'dorset' members, I really should check my e mails more! Been on the discussions page but didn't thing to check here!

Kim, I'm really sorry, I did type you out a long old reply ages ago but it looks like it didn't post for some reason and I can't remember what I said now!

We have been back to poole hosp and saw a paed on Monday and he basically told us that he sees hundreds of Harriets and its just a case of waiting for her to grow out of it, hopefully at 6 months and to be carefull when weaning her!! Helpful! She is still not good but docs all make me feel like I am either making it up or exagerating. Trouble is I do tend to leave saying 'oh okay, sorry to bother you?!' I need to toughen up a bit! Going on holiday on Mon - (caravaning in cornwall with some friends with an unhappy baby - could be interesting!!) but when we get back am going back to doctors - again! this time armed with videos of her to try and push again for omeprazole, got told last time she was too young and needed to be unsettled 24hrs a day to be prescribed it?! Also going to try for another milk as she has been really windy - and smelly at that, and pulling her knees back up into her tummy again and someone on here suggested that there is still too much protein in the pepti for her.

As for going out we managed one play club once, I was paranoid and sat there clutching a towel just in case! Even clinic is a nightmare! Took her to be weighed on Friday and they were busy so we had to wait for 30mins till our turn and she screamed CONSTANTLY! She was thrashing around, pulling my hair, I tried propping her up and distracting her with toys but nothing would settle her, it was so embarrasing. I felt like everyone was staring at me thinking I was a bad mum for not controlling her and one of the HV said, she's got a temper on her, so I got her weighed and then left! Don't know if it is the reflux or if I am blaming all her bad moments on it or if she is just a stroppy little madam! When I have mentioned to people that she has reflux I do tend to have comments like, 'oh so and so had that, yeah they were a bit sicky' A bit sicky is ok, its everything else that goes with it that is the problem!

How old are your babies now? Harriet is 14 weeks and we are thinking about starting to wean at 16 weeks with just a bit of rice as I have been reading Alison Scott-Wright Sensational Baby Sleep Plan and she thinks it a good idea to avoid refusal later on - although I don't think that will be a problem for her as she is a big comfort eater!

I hope you are all doing ok and that your little one are doing well at the moment. Tis not always easy!

Jo x

Comment by Lisa on October 16, 2010 at 20:28

Hi Joanne, I am really surprised you didn't get given omeprazole as we got changed to this the day we went to see paed. Who did you see - Dr Shortland?? I wouldn't bother going back to docs as waste of time as they are not allowed to prescribe it at primary care level. Best thing to do is to call Dr Shortland's secretary or that of who you saw and explain you are not coping with her etc and you have not noticed any difference and just ask to try omeprazole. Not sure if we got it as Ava was refusing her milk and so we were feeding in her sleep!! He put her on Pepti but it made her puke more and didn't see how this would help so after 2 days I called Dr Shortland's secretary and she got him to call me and asked him if I could try enfamil Anti-reflux and he said I could just buy it off shelf. Well you can get it ordered in by chemist but much more expensive so pharmicist told me to get on prescription so I Called docs and asked for it and we have had that for 4 months or so now. Does stay down a lot better. Not sure if it would make a difference with wind etc. You may find that this is more colicky symptoms and that may get better in next couple of weeks.

I offer every sympathy as its so hard when you are going through and can understand about going to clinic as getting in the car was bad enough. I personally wouldn't bother getting her weighed anymore unless you have specific concerns. Ava is just weighed at hospital and then got her 8 month check but haven't been to clinic for ages.

As for weaning, I wouldn't bother doing it too early as really don't think it'll make a differnce unless you are on 3 meals a day and it takes some time to get to that and in some ways will just make your life harder. Although you can always try a bit of baby rice and just see as no harm in stopping again if a problem.

I have to say the improvement has really been in the last couple of months so I do think once you get past 6 months it does get better. It seem a life time away when you are going through it but you will get there and I just get out and do loads now and feel quite normal but still plan everything and its all vey routined. Are you in a routine as this really helped. We used Tracey Hoggs baby whisperer. Never completly followed it but tried to.

If you want any more advice or ideas just let us know. I would suggest a dorset relux meet up but they will probably all scream too much. That's the problem with more than 1 fussy baby!

Lisa

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