reflux and apnoea plz help

[erinssleepymum]

my baby girl erin is 6months old now. when she was 10 weeks my elder daughter found her in her cot blue, limp and not breathing. i had to resuscitate her and she was taken to hospital. these episodes went on for several weeks with her in and out of hospital having eeg's ecg's ect. i was then told she has silent reflux. she has been on ranitadine and gaviscon and everything was fine until last week when she had another serious episode and for the first time began vomiting. she has now been put on domperidone. my G.P has said certain foods make reflux worse but couldnt tell me which!! as she has just begun weaning, i am sure there is a link to the episodes starting again. im at my wits end with worry. can anyone help?

[dhwhoooooooo]

blimey - that's terrible. Poor you. Sorry I can't help, just wanted to bump this up. My ds had reflux at 6 weeks until about 4 or 5 months when I started weaning him. We used gaviscon. hope you get some good advice soon.

[Peggotty]

Anything acidic can make it worse - tomatoes and the like. Are you seeing a paediatrician, or even better a gastro-enterologist. If not, push for an appt. Have you had your ranitidine dosage checked recently - needs upping as she gains weight. Weaning can be a slow, messy business with a reflux baby, and I'm glad you waited til 6 months, parents of reflux babies are often advised to wean early, and imo it's a waste of time doing it early.

[castlesintheair]

Poor you, that sound's terrible. My DD had gastric reflux and was on Gaviscon & Ranitadine until she was about one. The GP used to increase her ranitadine dosage as her weight went up, which was about every 2 weeks or so. This is important as it's not effective otherwise. When she reached 9 months they slowly started reducing it. I started weaning her at 4 months as I thought it would help but it didn't. I think everything was just too acidic for her so I stuck to milk. (Am shocked that your GP can't tell you which foods make reflux worse! Can the practice nurse help? I found mine very helpful.) At 6 months I started giving her sweet potato, bananas, porridge and other bits of stodge. By 8 months she was guzzling away happily and hasn't looked back since, now aged 2.8. There are also other medications they can give your DD. A friend of mine's DD was on 5 different ones. I also used to keep her upright after feeding for a good 40 minutes especially in the evening. Good luck - it does start to get better soon .

[erinssleepymum]

thanks for your words of support. funny you should mention tomatoes, she was a firm lover of my home made spag bol last week! cant remember which day so could well be linked. she is seeing a paediatrician but he just gave the medication and issued an apnoea monitor which has just made me more paranoid listening out for the bleeping noise all the time. will defo inquire about the gastro-enterologist tho thanks. feeling better already, thought i was alone!

[tribpot]

That's so awful for you To be honest, I would hold off on weaning for now, at least until you have been seen by a specialist. I hope you get some help soon.

[DebsCee]

Poor thing. There is no need for either of you to be suffering - you just have to get the meds right, and as PP have said, ranitidine is very very weight dependant and it is the mildest form of anti-reflux meds you can get.

My DS had silent reflux from very little and similar scary episodes with many spells in various hospitals - the only thing which made a significant difference was dropping all meds to move on to Losec - a pain to administer - but he was a sifferent baby from the 2nd dose.

We had to see a gastro-paed for the prescription but it was worth it.

I would suggest asking for an urgent referral - I could recommend a private one if necessary.

[erinssleepymum]

thanks what is losec? never heard that one! how does it work? so impressed with this site already. only found it an hour ago!!

[CastsSpellsWitchySpells]

Check out this page . There's a list of foods to be careful about at the bottom.

[erinssleepymum]

thank-you cspells. brill site didnt know there were so many foods to avoid!!

[DebsCee]

Losec (omeprazole) is a Proton Pump Inhibitor, and basically shuts down the acid producers in the stomach lining before digestion occurs.

The frequency and amount of dosage differs from person to person dependant upon the severity of the reflux - but it really was a wonder drug for my DS.

The only person we saw that gave us any reassurance and took our concerns and worries seriously was the gastro-paed - and after further investigations he was happy to prescribe it - our GP/Paed didn't have enough knowledge to suggest it - in fact having read up on it I knew more than them it seemed

[erinssleepymum]

i feel like that too sometimes. i always seem to be explaining things to the one's that are supposed to be in the know! thank-you for your advice. i will defo look into it an ask for a gastro specialist. i just dont like the thought of so many different medications! 3 times a day for each flippin one. as you know its hard enough getting one down without a fight and then i forget which one shes had and so on!!!

[DebsCee]

Yep and rantitidine is yucky tasting too! That was the massive advantage of the Losec for us - once a day mushed up in apple puree and no other meds - bliss - and more importantly it worked!

[erinssleepymum]

hello all! bad week-end!! my DD was back in hospital last night. another episode. doctor is now arranging a P.H test with a gasto paed. has any one experienced this test with their baby? just wondered how invasive it is?

[fussymummy]

Have you tried SMA staydown milk?

Specially formulated for babies with reflux.

My daughter had reflux from very young.

Projectile vomiting after each feed. It was awful.

Staydown was suggested to me by my HV.

It made a difference, much better than gaviscon.

Also try giving smaller feeds, more frequently.

Instead of 2x6oz bottles, give 3x4oz bottles.

As we weaned her, things did begin to get better.

By the time she was 1 year old she'd outgrown it.

Hope this helps a bit.

[nappyaddict]

i am in the same position. children's hopsital diagnosed silent reflux. various times he would choke and stop breathing for a few seconds. he has been in hospital for a week with bronchiolitus and i told the hospital (the local one not the children's one) about the reflux and they said it couldn't possibly be connected. they have now diagnosed asthma which i told them he had from day 1 but they said they couldn't diagnose it til 6-12 mnths. they have called it "rapidbreathing" instead pmsl. now i have looked on reflux sites which say that they can lead to things like asthma and chest problems. sometimes i think nurses don't know what they are talking about!! intersting to know about the foods cos i will be weaning in a few months too. we also found omeprozale (sp?) better than ranitidine.

[erinssleepymum]

thanks for the link KZ, sounds awful!! what im worried about is putting her through that test just for a diagnosis we already know! interesting you should mention the asthma nappy adict i read an article on the connection myself and my DD is ALWAYS chesty and congested! thanks for the tip on staydown milk fussymummy. ive been to GP this morning and he has increased her ranatadine again. ijust dont know about all these meds.....really dont like it. its just really good to have so much support..new to mumsnet and until now felt alone and very, very scared.

[castlesintheair]

Erin, know how you feel. I felt so alone with DD's reflux. Wish I'd known about MN then! I too worried about all the meds (I posted earlier - DD was on Ranitadine & Gaviscon) but honestly she is now 2.9 and doesn't seem to have suffered at all! Ranitadine tastes foul but like all of them, is pretty inert. I really would recommend you keep the dosage up as her weight increases & take anything else on offer as the worst part (for me anyway) is that they are suffering so much so young when they really don't need to these days.

[erinssleepymum]

thanks castles, you know she is my third baby...no trouble with the other two. if anyone had told me their child had reflux, i would have said "poor thing" but not took it too seriously. but my god, its a terrible condition. the not breathing episodes are the most frightening thing ive ever known and going to sleep every night listening to the bleep of her breathing monitor is scary! i wouldnt wish it on anyone. what age did your DD stop? the doctors keep moving the goalposts with me!

[castlesintheair]

Hi Erin, just seen this. DD is my 2nd so it was big shock for me too after an easy-peasy DS. I think she grew out of it around one. Hard to tell really, as they started reducing her meds around 9 months and I think she was off them completely by about 14 months.

[saggarmakersbottomknocker]

erinsmum and nappy addict, sorry you're both having a tough time. Reflux is definitely linked to chest infections. If they reflux it aspirates into the lung then it can cause infection.

[erinssleepymum]

thanks, comforting to know there is a light at the end of this tunnel!! tho, cross fingers she was fine last nite and this morning!! so, happy DD happy mummy!!

[DebsCee]

ESM - My DS had to have a pH probe for 24hrs when we saw the gastro paed we were referred to - and it was the results from that which in turn led to the prescription of Losec - so IMO it was well worth it. I dont think they would have prescribed anything else without that evidence IYSWIM.

They basically passed a very thin naso-gastric tube up his nose and down his throat into his stomach, the tube had a small probe on the end. Then he was scanned to check that it was in the correct position. The tube was connected to a digital reader which recorded the levels of acid in the stomach over 24hrs and we had to keep a log of times that DS was fed during the 24hrs plus make a note of his unsettled periods when he appeared to be in pain.

They reviewed the results the next day and it showed how bad the reflux was. I know that everyone had accepted that he was suffering with reflux but until those results came back no-one had any idea of just how bad it was. As a result we got a new prescription and we never looked back. My DS was weaned off of the Losec at about 1 yr old and he hasn't suffered since. I think his reflux actually settled really quickly, but it was the damage that had been caused by the acid to his oesaphagus that made it so much worse for him.

The procedure wasn't as bad as I had feared to be honest, and once in place DS was unaware of the tube - he was about 7 months old I think. We had the procedure at Sheffield Childrens Hospital and it involved 1 overnight stay and 2 days at the hospital.

I hope that's some help to you - best of luck.