any GPS/experts in intolerances/REFLUX and throat/breathing/larynx that can help my poor newborn?

[mad4mybaby]

ds2 is 6 weeks old and has rflux. (ds1 had severe reflux and milk allergy and soya intollerance) i didnt breast feed and he was put on cow and gate comfort. he had bad tummy and wind etc and same signs as ds1 so gp put him on nutramigen and he was a bit better. saw paed at 3 weeks old who put him on neocate as she thinks he has dairy/soya intollerance. She said stay on for 1 week and then try ranitadine. He was bit better on neocate and the ranitadine helped the screaming from reflux abit. he has been on neocate 3 weeks and ranitadine 2 weeks but he is now getting worse each day, he has severe wind that only comes out in farts and just seems to get stuck and he just cant get it out. he ends up in agony. we use infacol and gripe water which helps for a short while.

he is still hiccuping alot and you still cant lay him down after feed and sleeps propped up so i know the reflux problem is there.

the other problem that he has is that since he was born hes been VERY loud breathing and snuffly/snorting and was told just newborn mucus. this carried on and day before xmas eve he couldnt breath and got odd cough like a cat spitting up a furball. next day saw gp who said he had catarrh and keep doing what we were (steaming etc) any way last sat he couldnt breath again and saw out of hours gp who said chest/lungs all clear and that the problem was in the throat upwards and suggested poss floppy laryinx and that as we were due to see gp following monday i needed to discuss it with her. Anyway saw a registra who was awful and said he just had a cold which made himstop breathing. he didnt examine him. i complained and hopefully seeing the prob paed friday. he snores very badly and wakes up all the time. He has never fed very well csince born and alot of milk comes out of mouth when feeding. he struggles to breath when feeding too. he has never increased the 3oz i make up each feed but is putting on weight fine.

We have also bought a humidifier and cant think of anything else we can do/try to help. Any suggestions of what to do or what could be wrong id be very greatful

[mad4mybaby]

the MWs all said he just had newborn mucus as did HV. gp i saw xmas eve said catarrh, gp i saw sat just gone said poss floppy layrinx..

[Elibean]

No meds, as ejb says, just regular check ups and reassurance. dd still has very loud stridor now at 2 yrs, but it did get better over the summer when she had no colds (and lots of it is from the extra pressure put on her windpipe from her tonsils). BUT the stridor didn't start when she was born, it very gradually got louder from about 4-8 weeks onwards.

If your LO has large tonsils/adenoids, that does impact more with laryngomalacia to boot...so they keep an eye on those too. ENT and paeds always agree with us having dd sleep on her side/stomach, just like ejb.

[mad4mybaby]

it'l be unfair if it is that because it interferes with his sleeping and he is always wakung up so we supposed to put up with it till he grows out of it?!

[Elibean]

I suppose it depends how much it interferes with his sleeping. dd's didn't, really, until recently - at which point the tonsil issue (they meet in the middle) has made for dreadful, awful, sleep apnoea.

If a child has severe laryngomalacia, which inteferes with breathing or eating to the point the child can't thrive (and sleep matters!) then I suppose they'd intervene surgically. And definitely, they'd work to relieve the reflux, which at 6 weeks is quite likely to be playing a major part in terms of discomfort AND breathing difficulties.....and therefore sleep.

tbh, at 6 weeks, neither of my dds slept well and dd1 (who has no issues) did'nt sleep through until 9 months, which isn't that late according to most of my friends, so I'm guessing its going to be hard to assess sleep disturbance with such a young baby??

Hope tomorrow brings answers, and support, of one kind or another - when is your appointment?

[Elibean]

ps there are no meds that help the larynx itself... only the reflux that goes with it Its surgery or nothing.

[MrsPuddleduck]

Am in a rush but will try and come back tomorrow.

My Ds suffered really bad reflux and still has it at 3.

He now takes Omeperazole - which works wonders but has to be prescribed by a consultant as it is not licensed for Children. You need to get a referral to the hospital by the sounds of things.

[mad4mybaby]

willmouse, have already had a referral, saw paediatrician at 3 weeks old who prescribed ranitadine(see OP) we are seeing paed again tomorrow.

im just feeling sick to my stomach that she'l just say he has colic or something stupid!

Elibean, when i say interfers with sleep im talking about 90% off his 'naps' or every time he goes to sleep, he is waking up probably every 10-30 mins because of it. t isnt a cuddle issue or anything like that. He is def putting on weight ok, despite not having much more than 1.5oz most feeds which is wierd. I dont understand why he cant take anymore and why it isnt increasing with his age etc.. he was 7lb 4oz at birth and is now around 10lb so he isnt tiny baby

[Woooozle100]

best of luck for yr appt tomorrow. Am sure if its following prescription for ranitidine (ie diagnosis and treatment started) you won't be fobbed off with colic

My advice would be to write down yr questions / summary of ds's discomfort patterns. Helps cos inevitably you always forget something you wished you had asked. Ask about some of the stuff mentioned on here -different meds, sleeping postions, cot positions, feeding techniques

Good news about the weight gain

It will get easier / better - really.

[Elibean]

ditto ejb

dd got steadily better (once on reflux meds, and ranitidine may not be sufficient for your LO - didn't you say your ds1 was on omeprazole?) until her tonsils grew.

She's only 10kg now, and she's 2.2

[mad4mybaby]

yeah ds1 omep and domperidone. we not seeing paed 2mo now!!! she off sick. got to wait til mon. not happy 4 more days!!

[Elibean]

How frustrating. I'll count down with you, am on tenterhoods for dd2 till her op, which is Tuesday - 3 more days for you, 4 for me!

[Elibean]

tenterhooks

[MrsPuddleduck]

My DS2 had severe reflux as a baby. He was hospitalised twice because of the damage the acid did to his windpipe - the first time I had to dial 999 because he stopped breathing and was almost choking on the acid.

DS2 started on a combination of Domperidone and Ranitidine and then moved onto Omeperazole and Domperidone which literally changed him overnight.

I can recommend these you will get use out of them anyway for when they get coughs/colds etc.

www.mothercare.com/Grobag-Baby-Bed-Blocks/dp/B000VAOXL6/sr=1-6/qid=1231506444/ref=sr_1_6/278-2940403 -3350610?%5Fencoding=UTF8&m=A2LBKNDJ2KZUGQ&n=42825041&mcb=core

And if you can afford it one of these if he has a severe case - it made me sleep easy at night and actaully worked until he was 2

www.amazon.co.uk/exec/obidos/ASIN/B000UTWKUE/nextag64-21/ref=nosim?tag=mumsnet&ascsubtag=mnforum-21

Also, if you don't already have one get a sling. We spent so much time carrying DS2 around in an apright position it was ridiculous. We always used to say that it wasn't worth it as we wouldn't be doing it much longer but ended up doing it for 18months despite the medication.

Good luck for Monday, let us know how you get on.

[mad4mybaby]

thanks guys.

i have bed blocks and als have wedge for under matress. i had an angelcare for ds1 but i broke. think i will get another. its when he in his car seat or on sofa (naughty i know but at mo only settle in day on tummy over a cushion) that i worry.

he is also now constipated..hasnt pooed since monday. doc has given liquid stuff to help. dont know if it the neocate or rnitadine...

[Elibean]

doubt its the ranitidine, but then dd always had domperidone with it which 'moves things along'...

[lory]

www.cryingoverspiltmilk.co.nz, the website of the Gastric Reflux Support Network NZ for Parents of Infants & Children

this site is absolutely fab, you will find ALL you need to know about reflux, medication, diet, diagnosis.....

DS2 has severe reflux and we tried ranitidine, gaviscon, but only lansox (Lansoprazole) helped a bit.

Do not wait too long, if your baby is miserable, give the gp evidence, such he cried 9 hours, vomited 5 times, give them numbers and facts on a sheet of paper.