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sleep routines with prem?

(10 Posts)
summerdreams Thu 12-Feb-15 21:30:13

My Sons 6 months old a 33 weeker he has severe silent reflux and blue episodes which can be caused by crying. So he wakes every hour or so through the night Never sleeps more then 3 hours but averages around 1.5 hours doesn't want to feed just uncomfortable. His mattress is raised with reflux wedge he Is held up for 30 mins after feeds is on maximum dose meds but its got to a point where I can only get 2-3 hours sleep when im holding him upright in bed which terrifies me especially with his blue episodes he sleeps with an angel care monitor. Are there any tips anyone has for reflux baby's and sleep because 6 months with out sleep is getting to me I barely get out the door any more only to hospital appointments because im so exhausted would like some normality by the summer so I could start getting out more. Any ideas greatly appreciated all though controlled crying not an option due to the blue episides.

DadDadDad Thu 12-Feb-15 22:49:41

I don't have any advice, but I was passing, so I'll say hang in there. Our 30-weeker went back into hospital because of feeding / reflux issues and following on from 6 weeks in NICU, that felt terrible. We experienced the grim nights that you describe.

My point is that it does it get easier eventually. Listen to the advice of nurses and doctors - although you might need to weed out some of the rubbish, as not everything works!

That was 12 years ago, and DS sleeps like a log now (although he's never needed as much sleep as some children).

Mamab33 Fri 13-Feb-15 04:02:33

Not much advice but going through it too flowers

Crazyqueenofthecatladies Fri 13-Feb-15 08:29:35

What meds is he on? In serious cases you need omeprazole or lansoprazole at the max dose of 5mgs per kg of body weight BUT and its a big one, those drugs cant work if your dc has the most common cause of reflux: cows milk protein allergy/intolerance. They will only do what they are prescribed to do if you also eliminate the offending food causing the intolerance. If you are bfing that means removing all traces of milk, butter, cheese, whey from your diet, and 30% need to remove all soya too. If you're formula feeding you have a problem if lo is on a prem gormula as none are dairy free

Crazyqueenofthecatladies Fri 13-Feb-15 08:35:12

Sorry posted too soon. If youre ff you will need to push for a hypoallergenic dairy free formula like neocate, possibly with a raft of vitamin supplements to fill the gap left by the prem formula. My dd was just the same - awful blue baby episodes and she could even choke on fresh air if the wind was blowing. But eliminating problem foods and getting her meds right made such a difference. At three shes still not able to eat dairy.

summerdreams Sat 14-Feb-15 21:56:08

HI thanks for replying I forgot I posted this thread and actually just came across it by mistake. [Grin] he's on omeprazole 20mg, ranitadene 1.2 mls 3 times a day gaviscon 3 times a day and has beem on neocate formula. He has a dietician and a allergist. He's been admitted to hospital twice has had a speech and language therapist check him twice, his swollowing is fine he's had a chest xray. He's been treated for milk protein allergy for 2 months with no improvements. He gets the allergy tests at his next appointment at the end of feb. The blue episodes mean we cant let him get upset as then when they're most likely to happen. He's had a heart scan and an eeg but we havn't been able to rule out the possibility of seizures or if its caused by reflux. Does anyone know any tricks to get him to sleep a little bit better and not be curled up im a ball in pain all night I feel like im missing somethings gotta give. Oh and he will be having a impedance study in a few weeks to check how much acid is coming back up.

summerdreams Sat 14-Feb-15 22:08:15

Also he seems as if he's getting worse he doesnt even open his eyes during the night so I know he's not waking for the sake of waking he has his eyes closed and his crying and moaning and doubled over this goes on all nighthe would sleep in the cot if I could hold he could be completely upright its hard to see him in such pain night after night sad

Crazyqueenofthecatladies Sun 15-Feb-15 20:01:07

Ooh poor wee scone. It sounds like you're doing all the right things which is good but frustrating as there's not much to suggest. Is dc starting solids yet? Dd was hopeless on solids, choked on everything, reacted to loads of foodstuffs (all orange veg, squashes, potatoes, baby rice, legumes, all fruit more acidic than apples). Solids can be a magic fix for some refluxers but sadly makes others worse. In the end we had to hold off finger food til she was one, and introduce one food a week to work out what was hurting her. She's three now, still Df and sf, still abit squirrelly if she eats too many potatoes, but med free and 50th centile and hilarious.

summerdreams Mon 16-Feb-15 00:20:50

Yes we've started solids and so Far so good, all though its only been a few weeks and everything being hypo allergenic till we get the allergy test results. He's dropped from 91st centile to the 50th but they're not worried just keeping an eye cos he's stiol a good size for his corrected age. The reasons we've been put under an allergist is because he had such bad eczema since leaving the nicu his face bleeds. But he has had a week on a cause of steroid cream and parafine wax ointment and its all most cleared up to my amazement. So basically we believe it all may be down to bad allergys. Thanks for telling me it does get better because I naively thought as he got to this age we'd be getting to the end of it. Could I ask what age you saw a significant change in the reflux?

Crazyqueenofthecatladies Mon 16-Feb-15 19:14:59

Gawd it's all a haze now. Her sleep was much much better than her brothers ever was by nine-12 months but she'd been strict Df and sf for a good six-9 months by then. She was a 27 weeker and I went Df sf about her due date or a month after. It takes a while for the damage to heal. Really hope you guys turn a corner soon x

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