Reflux Support Thread

[-Betty-]

Santi is nearly seven months old and is not gaining weight. HV has advised we start to give him more solids. He has been eating solids since 17 wks.we have started making him food and liquidising it also giving him 7 month jars with lumps in. He will not eat either and if he does he begins to heave and cough. then wont eat any.
Any suggestions. looks like he is losing weight even more..
Also he has reflux

 

[trixipaws]

really sorry i cant help dont kno about reflux, i would nag my hv if i were u. good luck

 

[rhian85]

hi there well im glad to tell u i can help you hun....haave had/still have the same situation...
christopher has had/got reflux and was on comfort milk and gaviscon but has never really gained mch weight. my HV like urs told me to out him on to solids at 5 months. we did this and he took to the pureed food fine apart from citrusy/acidy foods - they caused him to scream

however when we moved to finger/lumpy jars well all hall kicked off - like u explain, christopher would always gagg/heave/chock on the lumps or any food that was very thick then he would point blank refuse to eat.

he was still loosing weight so we were refered to a consultant who told us to keep giving pureed food (he was 9mths at this point ) he told us to carry on with pureed jars but look for high calorie jars. we did this and he slowley began to gain weight.

however once we made the move to lumpy food for the second time at 10months like we were told to by consultant (according to the consultant:reflux dissapers by 10months) urrmmm not true not for us anyway. we started getting mixed msgs the health visitor was telling me i was "neglected him" by not givin the food he should be eating and consultant saying to give puree as every time we gave lumpy food he would scream and scream in pain and i mean real pain hed scream for hours on end arching his back.
anyway to cut this short christopher is now 14months and has ONLY just managed stage 2 jars, we saw the consultant on monday and he said he is doing fine gaining weight/growing fine so he is not failing to thrive. but he wants to do a belerium meal to check that there is no abnormality with the osopagus flap.

we have also been given rantadine syrup or *zantak* he has 1ml 2Xdaily ang OMG what a difference hes like a total different baby who is npw eating and gaining good weight.

i will update u on how we get on if u like (after the belerium meal)

hope u dont have the same rocky ride that we have its been awful so many hospital admission and stuck up doctors

 

[LucyBee]

That's really interesting Rhian. Tom's had reflux since he was a tiny baby and we were prescribed Ranitidine and Domperidone. He was on the Domperidone until he was about 6 months and has just come off the Ranitidine.
I have terrible trouble trying to get him to eat any finger foods though. He chokes ALL THE TIME on the smallest of things.
It hadn't occurred to me that it might be reflux-related. I think I will mention to my doctor next time I'm there.

 

[tlc1974]

My daughter has been diagnosed with refulx and is 14 weeks old, she is already on domperidone, ranitidine and infant gaviscon but she is still refusing bottles. Did/does any of you experience this? She is now not gaining weight, she is 13lbs and I am lucky if I can get her to take 20 ounces in a day but the paediatricians will not investigate further until she has dropped 2 centile lines on the growth chart. If you did/do experience this do you just feed her what she wants or do you continually try and get her to feed. I am continually trying as I don't want her to loose weight but I am finding it a real struggle as I don't leave the house as I am in a viscious circle of trying to get her to have a good sleep in the hope of having a good bottle and then trying to get her to have a good bottle in the hope she will have a good sleep.

The consultant has just started her on pepti junior as she suffered from terrible wind and he also thinks she might have an intollerance to cows milk. This milk takes 6 weeks to work if that is the problem so we are not due to go back to the hospital for 2 or 3 months, unless of course she drops the weight, which at this rate she definatly will.

 

[rhian85]

That's really interesting Rhian. Tom's had reflux since he was a tiny baby and we were prescribed Ranitidine and Domperidone. He was on the Domperidone until he was about 6 months and has just come off the Ranitidine.
I have terrible trouble trying to get him to eat any finger foods though. He chokes ALL THE TIME on the smallest of things.
It hadn't occurred to me that it might be reflux-related. I think I will mention to my doctor next time I'm there.

hi lucybee...well we seem to have a fair bit in common.....baby weight for a start as for the reflux well thankfully we were under a consultant peadiatric gastrologist from when christopher was around 2 months he was not gaining weight - i had previously spoken to my gp about christopher and finger foods but i got fobbed off by his GP and told by my HV i was neglecting him by not giving finger foods as it would delay his speech, delay all sorts but when i did give finger foods he WOULD ALWAYS CHOKE or a few hors after he would be screaming in agony as i described above (this would hapen if he had eaten any finger/thick/lumpy foods) he would suddenly start screaming so much he was almost prurple and arching his back - this would and still can last for hours and hopurs non stop - have given him medised b4 now and he has till caried on screaming.

but obviously every time we got him to the doctor whi sent us to the ward at hospital by that time he had cried him self to sleep and woken up and it had passed so the ward doctor saw us as some kind of
"over reactive parents" but a nuse who admitted him saw the whole thing and actually took me aside and told me unless the doctor sees him screaming then he would be sent home

but thankfully now we have a new consultant he is from alder hay and is brilliant he told me NOT to worry about giving pureed food at 12 months IT DOESNT delay development yet the main thing is that he weill eat it with out pain/chocking.

as i said above post we are having a belierum(SP) meal done in a few weeks to check for no osophagus problem/acid leaking. the rantadine has helped the last few weeks and he is now eating stage 2 jars but STILL no finger food.

ill update this post after we have had the belerium meal and re - seen the consultant...but TBH i had no idea that this could reapper either

does tom have problems with gagging/choking with thick food like very thick porrige? because befor the rantaine syrup christopher used to have an attack after thick cereal ?

i hope all three of us get our LO's on track soon - LUCYBEE could i ask how much tom weighs now and how long he is ? christopher is 78cm and weights 23lbs..we are finally gaining weight now

sorry for the long post - i also think there should be some helpline for mums of reflux babies/toddlers as it so so hard when there screaming/refusing to eat i have always found i have no one to turn to when im alone with him and hes having a "bad" day

 

[rhian85]

My daughter has been diagnosed with refulx and is 14 weeks old, she is already on domperidone, ranitidine and infant gaviscon but she is still refusing bottles. Did/does any of you experience this? She is now not gaining weight, she is 13lbs and I am lucky if I can get her to take 20 ounces in a day but the paediatricians will not investigate further until she has dropped 2 centile lines on the growth chart. If you did/do experience this do you just feed her what she wants or do you continually try and get her to feed. I am continually trying as I don't want her to loose weight but I am finding it a real struggle as I don't leave the house as I am in a viscious circle of trying to get her to have a good sleep in the hope of having a good bottle and then trying to get her to have a good bottle in the hope she will have a good sleep.

The consultant has just started her on pepti junior as she suffered from terrible wind and he also thinks she might have an intollerance to cows milk. This milk takes 6 weeks to work if that is the problem so we are not due to go back to the hospital for 2 or 3 months, unless of course she drops the weight, which at this rate she definatly will.

hi TLC...yes i also had this problem christopher would refuse/hardley drink any bottles i remember clearly the times i used to fight to get him to drik 20oz we were refered to a consultant pretty quick becasue christopher was such a big baby 10lbs 14.50z at birth and he had dropped three centile lines in a month i think we were reffered to hospital but as u can see it gets not better- once he went on to puree at 5 months (advised by consultant) then we had a few months where thigns were good he gained weight/eat well..but then the lumpy food as u read through this thread u will see all hell breaks loose at this stage....please dont let GP/HV fob u off with not getting a refferal get one early because thankfully we did nand now we just go direct to consultant not the GP/HV.

hope this helps a bit ? if u need any more advice please reply here or PM me

ohh just had a 4t..as christopher was not gaining weight on standard formular but was only 2-3 months he was put on a special formula from the doctor called "INFATRINI" its a high energy/high calorie milk..worked for a bit... but then he decided he hated it so we moved to solids a few months later - may be u could ask ur GP for that its thick to so its good for reflux.

 

[tlc1974]

Hi rhian85,

Thanks for the reply.

We have already seen 2 consultants and 1 or them suggested Maisie might have an intollerance to cows milk (due to all her wind) and suggested we try the pepti junior.

We have since been back to the hospital as Maisie still refusing bottles and a doctor saw her feed and said she had severe reflux and would recommend another medication to the consultant but he refused point blank to do anything for her until she loses weight. Now I am just waiting for this to happen before anyone will help us.

What meds was Christopher on?

 

[LucyBee]

Rhian, I'm SO annoyed...I just typed you a massive reply and then somehow managed to delete it by mistake!

Anyway, please please let me know how Christopher gets on with his barium meal. Has he had an ultrasound yet? Tom had one at about 3 months to check everything was ok in there. They didn't spot anything abnormal but then said that they would only see a problem if Tom was having a reflux attack at the time which he wasn't because he'd not been allowed any milk for 4 hours before the scan?!!! They did see TONS of wind in his tummy though which lead them to say he had reflux and 'delayed digestion' which is why we were put on the Domperidone as well as the Ranitidine. Forgot to say he was on Infant Gaviscon too.

I found it REALLY reassuring that your paediatrician said not to worry about continuing with the purees. Tom will take a stage 2 jar no problem now but you can forget any finger foods. He chokes/gags and is often actually sick. He just can't handle it at all. I've been persevering out of worry that it would delay his speech development and stuff but it's a nightmare as it's so nerve-wracking for me and horrible for Tom. He really struggles with thick porridge by the way. Always choking and gagging on it. I HATE breakfast as I never know what to give him. What do you give Christopher?

I haven't had Tom weighed for a good 6 weeks now but last time he was about 26lbs. He's never had a problem with not gaining weight and has always been on about the 98th centile since birth so I guess we've been lucky in that respect.

Dying to know how your barium meal goes. Poor old Christopher. Let me know how he gets on.

There is a forum on moms wearing puke site for Mums with reflux babies. I never joined but I did find it helped to read through some of the posts on there.

So glad we've found each other! Reflux Mum's Unite!

L xx

 

[LucyBee]

My daughter has been diagnosed with refulx and is 14 weeks old, she is already on domperidone, ranitidine and infant gaviscon but she is still refusing bottles. Did/does any of you experience this? She is now not gaining weight, she is 13lbs and I am lucky if I can get her to take 20 ounces in a day but the paediatricians will not investigate further until she has dropped 2 centile lines on the growth chart. If you did/do experience this do you just feed her what she wants or do you continually try and get her to feed. I am continually trying as I don't want her to loose weight but I am finding it a real struggle as I don't leave the house as I am in a viscious circle of trying to get her to have a good sleep in the hope of having a good bottle and then trying to get her to have a good bottle in the hope she will have a good sleep.

The consultant has just started her on pepti junior as she suffered from terrible wind and he also thinks she might have an intollerance to cows milk. This milk takes 6 weeks to work if that is the problem so we are not due to go back to the hospital for 2 or 3 months, unless of course she drops the weight, which at this rate she definatly will.

Poor you!
When Tom was little we had real problems getting him to take the milk. I think they associate the bottle with pain after a while so don't want to get anywhere near it. I just tried to stick to feeding 4 hourly and winded him frequently throughout the bottle.

We were prescribed Domperidone for Tom's wind. He had terrible wind too which meant he never had any solid sleep as the wind used to wake him all the time. It was a nightmare. The Domperidone sped up his digestion but did give him a terrible runny bum. I'm not entirely convinced it helped either. Actually, I think Infacol helped with the wind. I tried it when Tom was about 8 weeks and thought it was rubbish then tried again when he was about 4 months and persevered with it and it did really seem to help bring the wind up.

Have you also tried:
* Propping the cot up so it's at a 30degree angle?
* Holding her upright after a feed for at least 20 minutes?
* Winding frequently throughout bottle - every 1 or 2 oz?

It's so hard but as Rhian says, keep on at your HV and doctor and make sure you get some proper help and support through this.

Lucyx

 

[rhian85]

im sorry u are having a rocky ride with this...and its wrong that u have to wait for ur LO to loose weight b4 u can get help... we too had to go through this b4 we would get another consultant but we did in the end.

christopher was diagnosed very early 2-3 weeks old may be he was discarged from postnatak ward with me 48 hours after birth after being checked over by a pead. but when we got him home he wouldnt open his eyes/or feed so he was rushed back in that night with suspected strep B or men C. but luckily he was dehydrated and slight jaundiced..how the post natal peadiatritian didnt notice this i dont know but he was in SCBU for 2 weeks cuz every time they bottle fed him he would vomit it took 2 weeks to get his weight back up cuz in that week he jad lost a hell of a lot from 10lbs 14.5oz - almost 8lbs!!!!!!

so they diagnosed reflux - after a few different formulas at 1 month he was put on :
cow&gate comfort formula,
gavison,

3-5months
infatrine AND comfort
gaviscon

now at 14months
he is on just rantadine syrup. still give him cow and gate next steps (yellow tub) formular bcause it has more energy/fat and all the vits/mins that cows milk doesnt - as he iant eating as he should id rather he get the nutrients from formula, than become under nourished if u get me..

hope this helps u hun

 

[rhian85]

LUCYBEE.....

OMG u really are in the same situation....christopher hasnt had an ultrasound but he has a stomach x-ray during one hospital admisson bt nothing could be seen and they only took it off his intestines..the nurse did say that it woulsnt show air up on an x-ray...BUT..we have also been told that delayed digestion could be a problem for christopher as well..the barium meal should give us deeper insight to this as it will highlight the tummy/tubes with dye and air/acid will show

as for finger foods like u say with tom..christopher gaggs/vomits so much that he is also sick. he did it last sunday he was eating mashed potato and he must of found he tiniest lump because he started gagging/chocking so i grabbed him out of his hight chair and as u know "do the usual" help him clear it by patting his back etc. then he was sick but started chocking again and was not looking a healthy shade of purply/red i almost dialed 999 he was panicking and so was i. but i got him through it and the poor thing was in a right state after. he sobbed his heart out

with the breakfast situation ready break etc are out the window for us..what i tend to do is give him heinz breakfast jars like apple &mango breakfast because there not thick or im still g9iving him heinz 4mths + packet cereals just more of it..he has creamed porriage or peach yougurt or the fruit on. there all smooth no lumps or bits. i make them a little bit thick but i now know how thick is too thick if u get me. the consultant told me that him eating cereal for a 4mth old baby is no problem what so every as they have all the nutririon he needs so i make sure he has a good big bowl

im so glad im not alne with this..i have posted so many times about finger food probs but this has helped so much..i used to lie in bed woundering why my boy is going through so much with eating, why is he not eating what others his age eat. but christopher and tom are in the same boat down to a T

our consultant did say that reflux babies do take much much longer to get eating as they should because they have a "fear of food" they asscoiate it with pain..and i dont blame them either.

what are toms attacks like?

im curious to know if this has anything in common with both of thier birth weights? christopher was 10lbs 14.50z and i see tom was not far behind him

im so so glad to of found u hun - ur gna be my new best friend

 

[Nicky_Jones]

Ellie never liked lumpy food. She was fine with puree, and fine with finger food. So I just stopped pureeing and gave her the food stage skipping the lumpy food stage and she was fine. Might be worth a try.

 

[rhian85]

Ellie never liked lumpy food. She was fine with puree, and fine with finger food. So I just stopped pureeing and gave her the food stage skipping the lumpy food stage and she was fine. Might be worth a try.

reflux babies gagg/choke to much on finger food hun..we just have to battle through it until each individual babies is ready to move on to finger food at there pace..we have tried on/of since 7 months

 

[tlc1974]

My daughter has been diagnosed with refulx and is 14 weeks old, she is already on domperidone, ranitidine and infant gaviscon but she is still refusing bottles. Did/does any of you experience this? She is now not gaining weight, she is 13lbs and I am lucky if I can get her to take 20 ounces in a day but the paediatricians will not investigate further until she has dropped 2 centile lines on the growth chart. If you did/do experience this do you just feed her what she wants or do you continually try and get her to feed. I am continually trying as I don't want her to loose weight but I am finding it a real struggle as I don't leave the house as I am in a viscious circle of trying to get her to have a good sleep in the hope of having a good bottle and then trying to get her to have a good bottle in the hope she will have a good sleep.

The consultant has just started her on pepti junior as she suffered from terrible wind and he also thinks she might have an intollerance to cows milk. This milk takes 6 weeks to work if that is the problem so we are not due to go back to the hospital for 2 or 3 months, unless of course she drops the weight, which at this rate she definatly will.

Poor you!
When Tom was little we had real problems getting him to take the milk. I think they associate the bottle with pain after a while so don't want to get anywhere near it. I just tried to stick to feeding 4 hourly and winded him frequently throughout the bottle.

We were prescribed Domperidone for Tom's wind. He had terrible wind too which meant he never had any solid sleep as the wind used to wake him all the time. It was a nightmare. The Domperidone sped up his digestion but did give him a terrible runny bum. I'm not entirely convinced it helped either. Actually, I think Infacol helped with the wind. I tried it when Tom was about 8 weeks and thought it was rubbish then tried again when he was about 4 months and persevered with it and it did really seem to help bring the wind up.

Have you also tried:
* Propping the cot up so it's at a 30degree angle?
* Holding her upright after a feed for at least 20 minutes?
* Winding frequently throughout bottle - every 1 or 2 oz?

It's so hard but as Rhian says, keep on at your HV and doctor and make sure you get some proper help and support through this.

Lucyx

Lucy,

Maisie is always propped up when asleep, held upright for 30 mins after a feed and winds very well when she will have a bottle. I have noticed that since she has been on the pepti junior she is not waking every 30 minutes with wind. Since she was 4 weeks old she would only every sleep for a maximum of 30 minutes and every time she woke she would have to be winded. I don't know if it was you that suggested one of the fisher price swings but I bought one of those to see if she would sleep longer during the day in that but that didn't work either although she absolutly loves swinging!

Maisie isn't sick with her reflux I think it is the silent reflux she has as you can hear everything coming up but it just goes straight back down and it must hurt her as her eyes well up and then she refuses the bottle bless her.

The consultant told me they grow out of it by 6/7 months but neither Tom or Christopher has and they are both older than this?

I am glad I have found you and Rhian as you are both further down the line than me and just to let you both know Maisie was 6lb 14 when born so I don't think weight can have anything to do with it, it must just be one of those things!

 

[rhian85]

TLC...

we got a swing for the same reason when he was younger...but it made no different christopher also had silent reflux (even tho he had vomiting in SCBU - that stopped but the reflux never did ) as u say i could hear/see in his face the apin it caused / still causes.

as for them growing out of it arounf 6//7 months...urmm well yeah i was told this and it did settle down when he went on to puree..but as his food got thicker/lumpy well its all come back again. we were told only a few babies carry on to have problems. but im not sure about that i personally think if they have it young then it will continue it may not but u never know.

i really thought our LO had got over it once he was on solids but ...NO

i think we should have a sticky on this or our own support thread because it is hard and u need all the advice/help with this conditon

TLC ur kinda lucky cuz me and lucy have been through the tiny baby with reflux and are now coping with weaning and reflux so u have us for support any time u need it. i seem to have got to learn so much about infant reflux over the last year i could write a book on it

but TLC and Lucy if u need help/advice im always here

 

[tlc1974]

Thanks Rhian,

I agree a sticky should be made as I know other members on here have had their baby diagnosed with reflux and I think everybody needs support and information about this as other peoples babies might have it and might not have been diagnosed. (If it was your first baby you might just think this is all normal!!!!) This is my partners first baby and he thinks all babies are like this.

 

[rhian85]

ur welcome....

anybody know how we get this made to a sticky ? i agree that there are others and always will be others on here who have reflux babies and this way if we get it made into a sticky it gives other mummies/daddies the chance to read through it all and gget some advice..it is easy to think that this is normal for a first baby as u have no experience of babies - thankfully im a qualified nursery nurse and have worked with lots of babies so i knew somethign was not right with christopher/and im thankfull he was diagnosed by SCBU at an early age.
not that he is any better now tho

ill PM urchin to see how and if we could have this as a sticky

 

[LucyBee]

Hoorah! We've got a sticky! Well done Rhian!

Rhian, Tom and Christopher do sound exactly the same don't they? I have been giving Tom Organix cereal pots for breakfast lately as they are completely smooth too with no lumps.

Coincidentally, I went to meet with the Mum's I did my ante-natal class with this afternoon. One of them has a daughter who has also suffered from reflux although poor thing wasn't diagnosed until she was over 3 months. She is having EXACTLY the same problems as us. Her daughter won't take any solids and is only just on stage 2 jars. So we are not alone.

Tom still gets hiccups a lot too. Does Christopher? He had hiccups when he woke this morning before he'd had any food?

TLC...Tom's wind definitely got much better by about 6/7 months. But then again, that may just have been because he'd been on the medication for a while then. Don't worry though, things do get so much better. Those early days with the wind waking them are SO tough. I didn't know how I was going to get through it. Now Tom's almost one, he never wakes with wind. The main problem now is just getting him to eat lumps/finger foods but I think I'm just going to try and relax a bit more for a while since I've heard from you, Rhian.

I've got my 9 month check (3 months late!) with the HV on the 24th so I will ask her more then.

Shall I get us some 'REFLUX MUMS UNITE' t-shirts printed and badges done?! Big hugs girls. So glad we have each other now!

PS: TLC, Tom's got silent reflux too. He never was a sicky baby. So sad to hear that Maisie's eyes are welling up with the reflux. Poor little thing. x

 

[LucyBee]

Some good reflux related links I have from when Tom was tiny...

http://www.reflux.org.au/

http://www.momswearingpuke.com/

http://www.livingwithreflux.org/


PS: Mods...momswearingpuke and livingwithreflux do have boards. I know advertising forums on here is not allowed so feel free to remove. I am hoping, since they're specialist sites for reflux, that it will be ok as they were really helpful to me in the early days.