8 months with Silent Reflux & Getting Worse Again - Desperate Please Help is it Reflux or Wind?

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Permalink Reply by Harriet on March 5, 2010 at 10:09pm

Hi there at least you still have sense of humour! You make sense saying that it is pain if waking when on you and screaming. My non reflux daughter wouldn't move an inch if she was asleep on me cos she wouldn't want to be put back in her own bed! Luckily my 5 month old son with reflux sleeps all night. I think he got into a pattern if it by wearing himself out screaming all day when really little. He is on ranitidine domperidone and omeprazole but I swear by a product called coliccalm. It's homeopathic and contains vegetable
charcoal (yes very black and potenially messy) but a dose of it stops
the screing when all else fails. It's an American product but i buy it on eBay here. I havnt seen anyone mention it on here but found it late night when trawling the net for inspiration. Good luck and as a friend pointed put to me be thankful to the person who invented screw tops for wine bottles ... So much easier when you have a babe in your arms and a toddler at your legs!!!

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Permalink Reply by Kerrie Fitzsimons on March 6, 2010 at 1:46pm

Thanks I'll give anything a go!! and you're right about the wine!

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Permalink Reply by a mummy on March 6, 2010 at 4:03pm

hello
gosh you are having a hard time.
You dont say if you are still giving the little one ranitidine. Maybe she needs her dose increased now she is bigger. That is maybe why the reflux is worse and not the wedge aspect of it. Worth asking your doc anyway and maybe if he thinks the omeprazole could be tried as well.
I think if the reflux is addressed first and she still wont sleep as she should you could then look into the methods like controlled crying etc and get tough with her !! Lack of sleep, light sleeping and over tiredness can cause the screaming and wriggling as well as the pain apparently.
Best of luck and keep on at the health professionals.

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Permalink Reply by Kerrie Fitzsimons on March 6, 2010 at 8:11pm

Thanks for that - meant to say in my original note that was back at docs on Monday and Ranitidine was increased from 3 x 0.6ml to 2 x 2.5ml!! A big increase - apparantly the next bracket up from 0 - 6 mths is 6mths - 2 yrs where the dosage can go up big time and this wasn't the top end of the bracket - have to go back in 2 weeks and if no better than back to the paed so will mention the omeprazole.

Not expecting any instant miracles as she also has 5 teeth cutting at the mo!! Nothing by halfs my young lady, so when that settles down I may get a better picture of what's happening. Had to do controlled crying with my son so can do the mean mamma act if required! Thanks

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Permalink Reply by Fiona H on March 6, 2010 at 8:19pm

Hi

My daughter had silent reflux and is now 14 months old and we are weaning her off all meds - but I know how terrible silent reflux is and how desperate it makes you feel. The only way to really know if she has silent reflux is to get a pH test done. It will tell you definitively whether or not she has reflux. My daughter had it done, but I have private medical through work so it was done at a private hospital. I don't know how long it would take to get the test done on the NHS. I agree with the above that she probably does need her ranitidene increased as it must be increased with weight. My daughter also had terrible wind when she had reflux. Her consultant thought that it could have been a dairy allergy causing the reflux and I guess a side effect is wind. We put her on neocate milk (as well as ranitidene, domperidone and lansoprazole) and the screaming stopped. I think that the neocate milk did a lot of the work in helping her reflux symptoms and it definitely got rid of all the wind.

The problem with GPs (and mothers in law) is that they know very little about silent reflux. If a baby is not vomitting then they say it is colic. But a baby does not scream and scream and scream and back arch for hours on end with colic. Your baby is in pain and I very much doubt she is doing it out of habit. My daughter screamed daily for 6 months but once we got the right combination of drugs and neocate lcp milk the screaming stopped. She didn't continue it just out of habit.

I would either demand to see a paediatrician (it is your right to see one so your doctor has to refer you) or take your daughter back to A&E and they can increase her medication. Doesn't your A&E dept then follow it up in a couple of weeks or make an appt for you to see a doctor after a couple of weeks? I took my daughter to our local paediatric A&E a couple of times and as well as giving me the drugs they also made appts for me to come back so they could monitor progress (I never went back because I got so desperate that I went privately, but they should follow up).

Good luck....it does get easier. I remember being told that most babies outgrow reflux by the time they are 18 months old and I remember feeling that I couldn't get through another day let alone wait 18 months. But when my daughter was 9 months old something just changed in her and she seemed to be a much happier baby. I think that the reflux started to disappear so hopefully your daughter will start to outgrow it too very soon.
Fiona

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Permalink Reply by Belinda on March 6, 2010 at 9:27pm

hi ya Kerrie/ My daughter was diagnosed at 5 weeks with silent reflux, she would stop breathing and turn blue because of it. She was given Gaviscon and ranitadine, later changing to Gaviscon,Omeprazole and Domperidone,,,,, she would scream the house down day and night, and these meds helped her calm alittle. She began to sleep in the day but nights were still a big pain. From 12 hrs old I new there was some thing wrong with milk, but having had a Lactose intolarent test done at 3 weeks old and it being negative, I thought I was barking up the wrong tree. However at 14 months old we found she was in fact dairy intolarent. And at 16 month wheat and gluten intolarent. This is when the night sleep patten began to change for the best. Yes we do have the habbit of 4.30am she wakes and gets into bed with us, but straight to sleep again. My daughter would wriggle, scream, cry. lots of dirty smelly nappies, bad breath, before she went dairy free. She always loved all food but hated milk from 5 months old.

I can say I have been where you are now and things do get better (and its no lie), your not a failure, cause if you are then there are hundreds of us on here that are as we suffer the same......your doing the best you can with a ill child. Throw the rule book out the window, dont compare your little one or your self to any one else, your child is extra special....
It took me till she was 13 month old to bond with her, I hated every minuet of it, ashamed to say I wished some times Id never had her, but always loved her to death, (it was a strange feeling), and Im a mother of three, so thought I would be a pro........ lol how wrong was I.
She's now 19 months old , and her reflux is very well controlled, she still takes a very small amount of medication, but life is more or less back to normal.x Be strong

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Permalink Reply by Kerrie Fitzsimons on March 8, 2010 at 8:26pm

Thank you all for your messages and support and blatant honesty - it really does mean alot to know that there are people out there going through the same ( and alot worse for some - you poor Mum's and babies) - isn't it strange how you can say out loud to strangers about hating your child but not to your nearest and dearest??? You are right Belinda it is a strange feeling but I hope I have turned a corner in bonding with her (fingers crossed) And also to know that you ARE RIGHT (mother-in-law still going on about how bad breath normal, waking in night habit etc on Sunday aaarghh!!)

I have some good news to report - i've had TWO nights sleep in a row and feel like a new woman (now I've gone and cursed it!) A lucky combination plus the increase in Ranitidine I think so see if it lasts - LO was feeling too rubbish with cold and teething to eat tea at 5pm so didn't bother plus cut her milk to 4oz at 6.15pm then sleepily woke her at 1.30am to give her another 4oz and hey presto!! So have resorted to TINY tea at 5pm and split bottle. She does still have bad wind though and is quite grumpy during day so might go down the Neocate route - HV coming Wed so will push for it I think.

Thanks so much for the advice both of you - very useful and HUGELY supportive. ;)

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Permalink Reply by Kerrie Fitzsimons on March 10, 2010 at 7:32pm

OK so it was just luck - back to "normal" crappy nights sleeping.................boo!

At least my HV came today (1st time since been ill) and was both very lovely and very supportive. I phoned doc back on Tuesday to try the Neocate appraoch but she didn't want to go down that line and has reffered me to paeds - how long will that take - not sure if I can keep sane that long!! Anyway - the HV phoned her today to push for an urgent refferal so see if it helps.

At least it was good to speak to a Health Professional who believed in you and what you were going through and tried to help rather than thinking you were a raving looney!! Has anyone else had a brief respite like that when increasing dosage? Does it mean it's not working again?

Kerrie

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Permalink Reply by Sian Thomas on March 10, 2010 at 8:19pm

just a thought if your waiting a long time on your peadiatric appointment, i was waiting an my appointment came through for 4 weeks time! (thats like a year when you have a reflux baby, i asked the doc who she had been referred to then, i phoned his secretary and cried my eyes out, i then got an appointment for 2 days later in a rapid access clinic, your doctor can get you in one of these if he wants, but your h/v wont have as much power, well that was the case in my situation!! Good luckl!

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Permalink Reply by Kerrie Fitzsimons on March 10, 2010 at 8:35pm

Thanks Sian - it's sad that we have to play the system like this but i'm willing to camp on the guys doorstep if it means a faster appointment!! Don't think I can make 4 weeks

Kerrie

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Permalink Reply by Wendy Marsh on March 11, 2010 at 11:02am

Kerrie

Firstly it does get better and I am not lying, my lo is nearly 11 months and I am now dropping his meds he has now been settled since just before christmas. I did have to sleep train him to finally get him to sleep at night but I was pretty sure his reflux was controlled as during the day he was an angel who became a demon at night. I don't know if you have heard of a book by Alison Scott-Wright called "The Sensational Baby Sleep Plan", Alison is an expert in reflux and on sleep and reading it really helped me and it made me realise that the crys are different and that alot of his strange behaviours were down to sleep deprevation and not reflux this all gave me the confidence to dish out a bit of tough love and the results have been fab, he is a different child and the rest of the family are so much better now we all sleep (I have a 3 year old as well). Before we did all this we did have a couple of nights that would be OK then it would be worse again then it would get better and I didn't know whether I was coming or going, I tried so many things that seemed to work and then they would fail again, by the time I found Alison's book I was desperate to try anything. The other thing that I found a godsend was a good Osteopath as he could tell me how much irritation there was in his system so when he said it was settled I trusted him and was able to try the sleep training.

I hope some of this helps, it does get better and because your little one is now sitting up you should be quite close to getting a breakthrough so hang in there, and when good meaning relatives make you feel bad try and let there comments wash over you as when you reach the other side you can give yourself a pat on the back and your older child will come round, my older one is fine now and adores his little brother despite everything.

Please feel free to message me if I can be of help.

Wendy x

Teething will make reflux worse

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Permalink Reply by Clare Good on March 11, 2010 at 11:16am

I second what Wendy said. Teething/colds/coughs make it worse and like starting all over again. But it generally really does get better. My son was teething throughout Jan (had 8 come through) and was so so poorly. But literally from Feb 1st (he was 15 months), he got loads better. And he has a cold this week so he is back to being sick again but in between, we have long periods where he is ok. And he sleeps through most nights too. Literally 2 months ago I never ever ever would have thought that was possible.
I also recommend crying on the phone to whoever you need to - like you say it is terrible to play the system. I ended up at A&E with my son and that bumped us up the list.
xx

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