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anyone have an older baby still with bad reflux?

(64 Posts)
mad4myboys Wed 14-Oct-09 10:56:24

11 month old ds2 has bad reflux and on omeperazole and domperidone plus neocate. His consultant thinks he is'turning a corner' and that his age will help over the next few months (ds1 hadit till 1)

Im seeing no improvment. The worst part of it is the night wakings. He wakes every few hours from the reflux(he was in kings hosp few weeks ago for more indepth ph study which showed his night wakings were due to reflux) so there is no 'sleep training' or anything i can do about it. I cant even think about this going on for even longer. REally taking its toll on me. sad

skybluewinking Wed 14-Oct-09 11:10:58

Poor poor you, I had the same, but my son was not so bad, as we could just about get him to hold milk down with some heavy stuff that I cant remember the name of. Sorry, but he is now 17 and 6 feet tall!
We also had gaviscon etc, but it was a hell of a battle to get it taken seriously.
My daughter had it, but grew out of it at 12 months, my son was at least 4 before I could trust that he would not puke everywhere.
It did get me down, the worry about weight gain, the impossibility of going out anywhere without 3 changes of clothes, washing a dozen muslins, terrys, sheets etc etc every day.
But one day I realised he had not been sick for 3 days, and that was that!
Now he is never sick!

mad4myboys Wed 14-Oct-09 12:03:15

his is more 'silent reflux'. My ds1 wasalways projectile vomitting all the time but ds2 its the burning thatis the problem. I watch him sleep and he sqquirms around so much, cries in his sleep and you can hear his belly churning. Weight gain has never been a problem for either of them bizarley (sp)

foxinsocks Wed 14-Oct-09 12:07:17

dd was like this and still has reflux (as do I - I think it's a family thing)

she improved a lot when she was about 15-18 months. We had her first regular full night's sleep from about 15/18 months onwards which corresponded with her walking/running and sitting up more (so stronger stomach muscles).

Even now though, she can vomit at the drop of a hat!

It is exhausting, I really feel for you. Am glad your consultant is taking it seriously though - we really battled to get anyone to listen to us (other than the doctor who did her allergy tests who was lovely).

duende Wed 14-Oct-09 15:10:05

mad4myboys, i thought i'd bump for you. i really feel for you and your DS. hope he does turn the corner soon!

mad4myboys Wed 14-Oct-09 15:56:55

thanks

katsh Wed 14-Oct-09 16:57:07

Hi - lots of sympathy. My dd was like yours - however she did start to sleep better at about 13 mths. I hope that the light at the end of the tunnel starts shining soon. I do remember the feeling of utter desperation. Is there anyone you can get to give you a big of a break, even 1 night without the disturbance?

mad4myboys Wed 14-Oct-09 19:31:16

nope. I have dh who OCCASIONALLY will help but it means sleeping on floor in ds2 bedroom and he moans about his back!

Elibean Thu 15-Oct-09 10:10:31

Hey mad4...so sorry ds is still in pain, and you sleepless. I utterly sympathize, dd2's reflux carried on until around 15-16 months, like fox's dd. She was a late walker (18mos on her own) which probably didn't help, as all the upright time is supposed to help...though I think age had as much to do with it.

This time of year, going into winter, is especially hard with sleeplessness - hopefully its the dark before the dawn for your ds. Wish I could help!

mad4myboys Thu 15-Oct-09 10:16:41

hey elibean. I only ever seem to met you on childrens health! And always my on ds's! He is looking good towards the walking. Has been cruising since about 8 months. He can walk if you hold one hand and has taken a coupld of steps so im hoping it wont be long!

VerityBrulee Fri 16-Oct-09 22:36:52

Ds1 had refux until he was almost 2 and we took him to a cranial osteopath (he had been seeing a consultant since he was 9 months and was on a variety of medications)

I was sceptical but went in desperation, and was stunned by the results.

Worth a try smile

mad4myboys Sat 17-Oct-09 07:29:57

thanx verity, have taken him to one since he was born and has never really helped. thanx though.

VerityBrulee Sat 17-Oct-09 08:03:36

Sorry to here that, it really worked for us, would you think of trying a different osteopath? The one we go to (I take ds2 to her for treatment for his asthma) is really fantastic, whereas the locum we went to once wasn't as good.

I remember so well how exhausting having a reflux baby is. Take care of yourself too.

tatt Sat 17-Oct-09 09:22:20

I'm an adult with silent reflux. Have they suggested avoiding milk? It's bad for reflux and the hypoallergenic formulas might help.

Raising the head of the nbed or cot by putting something like a piece of wood under it also helps.

mad4myboys Sat 17-Oct-09 10:10:48

verity, it is a friend of mine who i trust. He has also seen another therapist but again no improvement.

Tatt, he is on neocate which is amino acid based, not even based on hydrolysed milk or soya! His diet is very strict, no dairy. He cant digest protein food AT ALL so no meat, fish, etc. There are a few other foods that seem to make him worse like apple so alot of things are avoided.

mad4myboys Sat 17-Oct-09 10:11:21

oh and also his cot has been propped up since birth.

VerityBrulee Sat 17-Oct-09 11:24:53

Ok, well you are doing everything you can to help the reflux, maybe there are practical changes that will help you

DS slept in his car seat at one time, it was the only way to keep him comfortable.

It's really not fair if your dh doesn't do his bit, ds is his child to, and you will end up feeling really resentful of dh, which won't do anyone any good. Sit down and tell him you are at your wit's end and can't do it all yourself.

If your ds is in his own room could you fit a single bed in there as well so you and dh could then take turns, every second night of decent sleep would make a big difference to you. Some fold up beds have decent matresses and wouldn't take up as much space.

Do you have a friend/family member who can take over for a few hours during the day while you have a sleep.

I endured years of broken sleep between my 3 dc, and I have no idea how I survived it. If nothing else, try anything to get more sleep!

tatt Sat 17-Oct-09 19:01:20

when does he take the medicine? I know I was told to have mine in the morning but it works much better for me if taken at night. If it's already at night then can't think of anything else except waiting it out and trying to alternate nights "on duty" so that you each get a little rest.

mad4myboys Mon 19-Oct-09 06:18:17

do you mean the omperazole? For a week now he has taken it morning and evening. Before it was in the morning, now it has been doubled so takes morning and evening. Ive still seen no change. Last night was up every 2 hours and then awake at 5am. DH works long hours and this week he is in america, there isnt a great deal he can do more, he stays up to do the first night 'waking' which will be between 11pm-1am. He leaves early in the morning so cant expect him to be up in the night aswell really.

tatt Tue 20-Oct-09 08:53:26

Yes, that's what I meant. Anyone else who could come and help you for a few hours so you get some sleep? There is an alternate drug - lansoprazole - that you could possibly try once he's over a year. Sometimes a different drug works better even if they are supposed to do the same thing.

mad4myboys Tue 20-Oct-09 09:53:55

my MIL is coming tonight, thankd goodness. At some points in the night i was up every half hour with him. Im sure its getting worse. He was on lansoperazole at about 7 months old and he had an odd reaction to it. He had a really bad pain in tummy and screamed for hours....

i really dont know what to do know. The consultant will just say he will grow out of it and its fine as long as the reflux is being managed but i dont see how this is managed? The only other thing i was thinking perhaps a change to formula? Been on neocate since 8 weeks old. Last night i tried just giving water when he woke instead of milk, didnt affect the frequency of pain/waking BUT he wasnt as gripy/windy?

Elibean Tue 20-Oct-09 10:37:17

Ah, mad4, I don't seem to get about much these days!

Postnatal, health, occasional education threads..<memo to self: get a life grin>

Its great that ds is nearly walking, hopefully that will help. I suspect dd got so used to waking every few hours because of first reflux, then apnoea, that now she still tends to wake easily with the least cold/hunger/virus etc. I'm often up a couple of times per night, though never for long - usually just to cover her up or give a drink of water. It was far, far more tiring when I worried about her and spent ages trying to get her comfortable - really do feel for you, I've not forgotten it!

mad4myboys Tue 20-Oct-09 10:41:25

hello again. Ive started ANOTHER thread asking about alternative formulas i can try!!

nightcat Tue 20-Oct-09 10:53:00

hi mad4 again (been away so only just caught up with your updates)
Glad no damage was found, what a relief.
Milk/formula is protein-based so not surprised you are having problems. Many nutritionists say that in many cases babies don't need milk beyond weaning (esp cows milk as it's a different species) because they lose the enzymee digesting it (lactase). Casein can also be a problem. In your case, I would phase out milk altogether (I did that with my ds when he was about 2 years on advice from a nutritionist after many months of constipation agony). If you reduce dairy, you might help his digestive system to recover.
Did they check your ds for any enzyme deficiencies and/or suggested enzymes at all? He will need good protein to grow.

mad4myboys Tue 20-Oct-09 11:47:25

nightcat, hi, he doesnt have any dairy at all He is on neocate formula. No they didnt mention enzymes. Just said that the stool sample came back clear. I am taking him to an 'allergy, nutrition and biochemistry screening clinic' friday, they check for digestive enzymes etc. Maybe i'll get some help there...

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