Reflux Nightmare!! Post Reply

[lunalu]

My 10 week old son has really bad reflux and possibly dairy allergy. It's been absolute hell and he's currently on 3 meds and a special milk. I've really been struggling and would love to hear from anyone else who has had experience with this. Tips? Suggestions? Comments...ANYTHING that could possibly help! I've tried everything I can think of, seen over 6 doctors. Poor little guy is miserable Thanks

[Annabel (admin)]

How awful for you both

My daughter had reflux although only a v mild version.
We were given some powder to add to her milk and that seemed to help. Warm milk was always best too (although I guess that you're probably giving her this anyway). Hers did pass - there weren't any intolerances involved.

Hope someone else can help.

Annabel x

[MrsAmanda]

My younger son has reflux. Our GP was pretty good (eventually, I saw other GPs first, who were dismissive). We were referred to St George's, but the chap we saw there was also dismissive. He just said we should carry on as we were, with Gaviscon, and I should just get used to doing lots of laundry!

However, my son wasn't miserable all the time. If you use Gaviscon, the best way I've found it works is to make it in pretty hot formula and let it cool down a while before giving the bottle.

My son's nearly 8 months now, still on Gaviscon, but since weaning, the sicky episodes have got fewer.

[lunalu]

thank you for the replies! it's been dreadful. we first begun this reflux saga over a month ago. first stop was gp. she put him on ranitidine. then it didn't improve so we saw a ped gastro specialist who put him on nutrimagen milk as he suspected dairy allergy plus added domperidone. another week goes by not helping. gp added a 3rd medication called omeprazole. another week has gone by....not making any difference. i'm at wits end. constant screaming, crying, vomiting (usually 4-8 times after every feed). he won't sleep unless held. i cry with him a lot of the times because i just feel so useless! it is absolute agony. it's been weeks and weeks of this. he is wheezing, stuffy nose, will only take 2-3 ounces of feeds, and when drinking he chokes/gags/freaks out. he has flat lined with weight and not losing/gaining. i have seen the same gp weekly and 2 specialists and going to see another one friday. i just don't see the point of giving so many drugs to a new baby especially if it's NOT working!

[mrs_pavlova]

So sorry to hear of your problems. I know from friends that this can be a horrible nightmare. Have you tried propping up your son's cot at one end - I've heard this helps alot.

Also I just googled 'reflux support' and there are lots of support networks that might be a help to you. Such as http://www.littlerefluxers.co.uk/

Although I'm sure the Mums on here will have loads more ideas for you in the coming days.

Good luck with it all x

[ready2pop]

We had exactly the same thing with my son and I just wanted to say don't give up on the omeprazole - for us it was an absolute miracle.

The specialist who prescribed it for my son told us that we wouldn't see its effects for up to a month after starting giving it to him. This is apparently because the acid that burbles up with reflux causes their oseophagus (not sure about spelling of that one?) to become inflamed. Omeprazole works by stopping stomach acid production so that although the vomiting continues it stops hurting. The problem is that it takes a while for the existing inflammation to die down. So don't give up yet - give it a month and you should see results.

I really feel for you as when my son was like your baby is now was one of the most difficult periods of my life.

Feel free to e-mail me if you want a chat about it or just need someone to talk to who knows what you are going through.

[ready2pop]

Oh, in the meantime we found that baths really helped calm him down when he was in pain. As he was always better sitting up we bought a tummy tub - http://www.nctshop.co.uk/prodinfo.asp?number=4413 so we could bath him upright. I'd then give him a long soak whenever he got really upset.

As for feeds I found sticking to quite a strict timetable helped because he'd want to feed all the time to try and stop the burning but then throw up just making things worse.

[TXmum]

This could be me writing this post. My 9 week old suffers terribly from silent reflux. We don't have as much vomiting, but the bad side of that is that what he brings up, he also swallows back down so it burns him twice. We too have been through Ranitidine, Gaviscon and Losec. We are now on the O drug (not going to bother trying to spell it) which is just a suspension version of Losec. It does seem to be helping some, but so did the Ranitidine in the beginning. I am off dairy, and we are supplementing with Nutramigen. (a friend back in the US said this stuff was $27 per can there). I am so sick of throwing drugs down the throat of my tiny baby. We have his cot, changing table, etc. all elevated. He is miserable on his back. We keep him upright after a feed, and he often sleeps on us. We couldn't leave the house because he would scream and scream. I changed his pram from the bassinet to the seat and reclined it all the way back. He's way too small for the seat so I bought a bolster to keep him secure. This has helped tremendously in getting out and about.
There is a great thread on mumsnet that discusses coping with reflux. I've found just knowing that other families have had as difficult a time (emotionally) dealing with their LO's reflux has made it easier for me to face the day.
You're doing all the right things to help your LO be more comfortable.
What people don't understand is the emotional toll it takes on mum and dad having a baby in so much pain and you feel helpless to make it better. It is gut wrenching. I've found a few mums who have been through it too, and they have been really great to encourage me and provide support in the form of answering my millions of questions. I almost feel reflux babies should be classified as a special need since they are so very high maintenance.
Please feel free to PM me if you'd like. I don't have any answers, but I am going through it too, and know just how draining and heartbreaking it is, and can lend a sympathetic ear.

[NoMorePeppaPig]

"he is wheezing, stuffy nose, will only take 2-3 ounces of feeds, and when drinking he chokes/gags/freaks out. he has flat lined with weight and not losing/gaining."

My daughter is the same - it is a nightmare and I found a local GP practise very unhelpful and almost rude (SW11/SW12) because she was not losing weight! I was fortunate enough to be able to insist on a private referral where she was diagnosed instantly.

From what you have said, the wheezing/stuffy nose sounds like there could be a more severe dairy intolerance (or allergy) and this will be causing your son to vomit also. I found my daughter particularly bad at about 3am after prolonged lying down and she would wake gasping for breath. If this is the case then Nutramigen is not completely diary free and you need to insist that your son is changed to Neocate. It is completely synthetic and totally diary free. Your GP may be hesitant to prescribe because it is £30 a tin. I went to the chemist and bought a tin over the counter. After a couple of days she went from 1-2 oz at a feed to 4-5oz. The doctor then agreed to give it to her.

I found the best way to feed was to hold her away from me as I think we tend to hold them a bit too flat - I would put her in a baby bjorn bouncer chair and would give the bottle whilst gently bouncing. This also enabled the milk to settle after feeding. I would usually need to give 2-3oz, then give a 20 minute break follwed by an additional 2-3oz. You may find that giving a dummy throughout the feed works well as reflux babies need to suck. A dummy at all other times will be a life saver too.

You have my deepest sympathies and please do ask any other questions (especially when you approach weaning...!). My daughter is now 11 months old, still on neocate and omeprazole, but thriving in the centiles. I promise this exhaustion and frustration will seem a distant memory. Hold on in there xx

[lunalu]

thanks so much for the empathy/suggestions/thoughts etc. i really needed that yesterday after a really challenging day! i think support is so important and i will be checking out that forum and website you guys suggested.

[Latcherie]

In addition to infantt gaviscon have they tried him on ranitidine?
Is he fed NG with a tube? Maybe with nutramigen (yuck)
Have they done an endoscopy to check there is no kink in his oesophagus and the sphincters are working as they should?
Any history of it in the family?
More imprtantly is he weight faltering (used to be called failure to thrive), starting to refuse the bottle (associations)?
Does he vomit the full feed projectile anfd then cheer up, or is it silent relux (worse - double the burming).
Try clicking your fingers or puttinga mobile over his head as he soon as he has eaten, looking up can help lessen the gag reflex. Also feeding in a baby bjorn tummy outwards can help. So he is vertical.
^ doctors!! Any specialists? I woul insist in a referral to Gt. Ormond Street if he starts to loose weight and get him checked for mal absorption syndrome at the same time. Count how many wet and soiled nanpied he has a day and weight the wet ones so you can get an idea of kidney function.
And get some support for you, reflux babies often only sleep in 20 min snatches and it can be exhausting and very emotional (not to mention the cost of all that kitchen roll). Prop the legs of the cot by his head up (sure you have done). And make them take you seriously!!

[catty29a]

We went through reflux with our eldest daughter - she actually developed ot at 6 months which was a joy. She was on omeprazole for a while and it didn't help in our case although I know it's brilliant for others. One of the things though that the specialist advised about omeprazole was that it does kill all the good bacteria in the gut so getting hold of a good probiotic would really help things as well - particularily if they're having a hard time digesting. I used a powder which I added to milk (and then to food as she weaned) and it really did seem to help. there seem to be loads of brands available now. Also cranial osteopathy helps - it really does. I can recommend Adam Beaumont at Neal's Yard on Northcote road or Jo Bowyer at The Awareness Centre on Abbeville Road. Someone else mentioned Little Refluxers and I found their site brilliant - one of the things we used from the site were bolsters to keep our daughter on her side - she slept so much better like that! We also let her sleep on her stomach (controversial I know) but some nights it was the only way for any of us to get any sleep. And hopefully he'll grow out of it - hang in there.

[lunalu]

hi! thanks for the comments. i let him sleep on his tummy as like you said its the only way we sleep. i keep him in bassinet next to me though. he turns his head fine so risk of sids is quite low. although it does still make me nervous of course! but he really only wants to be on his tummy or held. none of the medicines are making any difference. neither is the milk really for that matter.

[wengen]

Gosh, it sounds just like what we have been through with our little boy. I have found the wedge with a velcro strap (from the little refuxers website) to be really helpful. His breathing is so wheezy/ crackling that the other day when I was on the phone the person thought we had a bad line- had to explain that it was my child's normal breathing pattern. We have only just started to see an improvement on the meds and he is 7 months. We only got to see a specialist when he was rushed to hospital by ambulance because he stopped breathing. It is a true nightmare and far too many people say " oh my baby had reflux and was given gaviscon because he was a bit sicky- don't worry he will grow out of it". So frustating that they play down what can be a living nightmare and effects other children within the family. I can honestly say I have questions my sanity at times. However, keep going back to your GP as much as it takes before they listen to you. Make sure your baby is def milk intolerant before you put them on the other form. We had a lot of suggestions to change his milk but were advised by a nutrienist to stick with Aptimil as this was the best form for babies. Dr.Brown bottles also helped us. We found the Domperidone gave our baby terrible cramps (common side effect) apparently. It will ease and try not to set too bigger tasks on yourself- I found keeping our days simple made them much more enjoyable. Hope this helps.

[Wfm]

Hi Lunalu,
I can really empathise with what you and others are going through. My first baby had chronic reflux - it emerged when she was 5 days old and stopped when she was 10 months old. I would say throughout that whole period, I never really relaxed. My mind was constantly on how much pain she was going through, whether she was in pain, how much she had eaten, had she eaten enough, how to speed up weaning. Friends with babies of the same age could not really relate to the impact reflux was having - for example if my daughter had missed a feed, I would go crazy with worry, whereas nowadays when she misses a feed I feel a lot more relaxed as I know there is nothing more sinister behind it.
The best advice I can offer you is a) to be strong and know that it is something she WILL grow out of, b) to not drive yourself mad if your baby misses one feed (which is what I did) but most importantly of all c) to get an excellent paed. My daughter had the most fantastic paed, who was completely on top of his game. The first paed she saw had no idea and I felt was using her as an experiment. Having said that, curing reflux is a bit experimental (re medicine dosage) so have faith in your doctor if you feel comfortable with him/her. If you would like the name of my daughter's paed (at Portland) email me and I will send to you.
Best of luck.