Reflux Help & Support Thread

Hello ladies, can I join you?

My son has been in and out of hospital since he was 4 weeks old...he's now 13 weeks. They have now finally diagnosed CMPI (we were very lucky to get Neocate first based mainly on the fact that I had a dairy intolerance as a baby and his symptoms were common), Silent Reflux and Laryngomalacia (floppy windpipe). All seems to be lumped together and one thing aggravates the other.

He is on Neocate formula and 1ml Ranitidine x 4.

We're 'lucky' because he's not a crying kind of baby, he really shows his discomfort in other ways. This started by being sick (although not LOADS) and generally being very uncomfortable after feeds or when on his back but I could deal with these. Then his breathing problems started :( He frequntly stops breathing during feeding and sounds horrific during and after feeding, this is mainly because of his laryngomalacia but the reflux makes it painful.

He's generally fed well despite all of this but recently he's started refusing feeds :cry: And I'm now having to hold him down and pretty much force feed him which is horrible. í've tried just letting him let me know when he's hungry but he will quite happily go 11 hours overnight without a feed but refuse his bottle in the morning. Some feeds are fine though. Also, once he burps he just gives up (I think it's because he double burps, one is normal, the 2nd sounds like the acid coming up and going back down) so I can only get 2oz into him if he takes the bottle in the first place and the rest is such a fight.

I'm just getting so sick of hearing that because he's putting on weight I shouldn't be concerned or upset about his obvious pain & discomfort when the only reason he is putting on weight is because I literally will sit there for an hour with him forcing him to drink. Should I just let him feed little bits with 5+ hours between and let him deteriorate then?!?! Also sick of hearing "oh Francesca he's just not hungry!" Grrrrr. Although he will take feeds from me eventually, with anyone else 9 times out of 10 he will refuse completely or end up vomiting everywhere, including my husband. This is very upsetting for all of us.

We are very lucky because we got seen by paed consultants very quickly after our GP sent us straight to hospital because of his breathing problems and I know some mums fight for months to get their LOs on neocate & ranitidine but *sigh* I just feel so helpless and frustrated with it all!!!!!!!!!!
 
Hello ladies, can I join you?

My son has been in and out of hospital since he was 4 weeks old...he's now 13 weeks. They have now finally diagnosed CMPI (we were very lucky to get Neocate first based mainly on the fact that I had a dairy intolerance as a baby and his symptoms were common), Silent Reflux and Laryngomalacia (floppy windpipe). All seems to be lumped together and one thing aggravates the other.

He is on Neocate formula and 1ml Ranitidine x 4.

We're 'lucky' because he's not a crying kind of baby, he really shows his discomfort in other ways. This started by being sick (although not LOADS) and generally being very uncomfortable after feeds or when on his back but I could deal with these. Then his breathing problems started :( He frequntly stops breathing during feeding and sounds horrific during and after feeding, this is mainly because of his laryngomalacia but the reflux makes it painful.

He's generally fed well despite all of this but recently he's started refusing feeds :cry: And I'm now having to hold him down and pretty much force feed him which is horrible. í've tried just letting him let me know when he's hungry but he will quite happily go 11 hours overnight without a feed but refuse his bottle in the morning. Some feeds are fine though. Also, once he burps he just gives up (I think it's because he double burps, one is normal, the 2nd sounds like the acid coming up and going back down) so I can only get 2oz into him if he takes the bottle in the first place and the rest is such a fight.

I'm just getting so sick of hearing that because he's putting on weight I shouldn't be concerned or upset about his obvious pain & discomfort when the only reason he is putting on weight is because I literally will sit there for an hour with him forcing him to drink. Should I just let him feed little bits with 5+ hours between and let him deteriorate then?!?! Also sick of hearing "oh Francesca he's just not hungry!" Grrrrr. Although he will take feeds from me eventually, with anyone else 9 times out of 10 he will refuse completely or end up vomiting everywhere, including my husband. This is very upsetting for all of us.

We are very lucky because we got seen by paed consultants very quickly after our GP sent us straight to hospital because of his breathing problems and I know some mums fight for months to get their LOs on neocate & ranitidine but *sigh* I just feel so helpless and frustrated with it all!!!!!!!!!!

Sounds like the ranitidine isn't working, ask for a prescription for omeprazole instead. I would feed little and often - see if he'll take 2oz every 2 hours.

If it's any consolation my LO would only take 2oz Neocate every 3-4 hours
until she was 5months. She did manage to gain weight, albeit slowly.

Don't force the feeds ever, we ended up with a severe feeding aversion because I did this - she would scream before the bottle got near her mouth. She was terrified of the bottle and we went through weeks of syringe and spoon feeding her every hour as I didn't want an NG tube fitted. If he doesn't want the bottle or starts to get upset during a feed take it away and try again 30mins later. Otherwise he'll start to associate feeding with pain.

Pick him up and "dreamfeed" him in his sleep. Wait until 10-11pm when he's in a deep sleep and go through with a bottle, gently lift him and feed him trying not to wake him, it was always Macy's best feed - usually 5oz and no fighting

Have you bought one of the reflux wedges? Get one of the extreme ones that prop him up 45degrees and have a harness to hold in him place

Hope he feels better soon xx
 
I can thoroughly recommend the higher wedges and harnesses. Noahs reflux is still the worst at night but at least with the wedge and harness I don't get projectile vomit all over him, the crib, carpet etc.

Sods law bet I've bloody jinxed it now and he'll puke everywhere tonight :dohh:
 
Sounds like the ranitidine isn't working, ask for a prescription for omeprazole instead. I would feed little and often - see if he'll take 2oz every 2 hours.

If it's any consolation my LO would only take 2oz Neocate every 3-4 hours
until she was 5months. She did manage to gain weight, albeit slowly.

Don't force the feeds ever, we ended up with a severe feeding aversion because I did this - she would scream before the bottle got near her mouth. She was terrified of the bottle and we went through weeks of syringe and spoon feeding her every hour as I didn't want an NG tube fitted. If he doesn't want the bottle or starts to get upset during a feed take it away and try again 30mins later. Otherwise he'll start to associate feeding with pain.

Pick him up and "dreamfeed" him in his sleep. Wait until 10-11pm when he's in a deep sleep and go through with a bottle, gently lift him and feed him trying not to wake him, it was always Macy's best feed - usually 5oz and no fighting

Have you bought one of the reflux wedges? Get one of the extreme ones that prop him up 45degrees and have a harness to hold in him place

Hope he feels better soon xx

Hi there, thank you for the reply.

He's fed really well today because i've done what you're suggesting and just let him feed if he wants to and only what he wants to take and he's only taken about 60ml less over three feeds than he 'normally' would if I was battling him. And we're both much happier for it :thumbup:

I used to dream feed him every night and then suddenly about 2 weeks ago he just wouldn't take it anymore. I tried different times to catch him at different points in his sleep cycle and the teat would just lie in his mouth and he wouldn't suck. He'd also wake up exactly 4 hours after with wind or wanting more food. Since I gave up trying it he has been pretty much STTN. Hence why the feeding issue has been quite a stress for me as he has dropped 2 out of his usual 6 feeds a day but isn't drinking more in the day to compensate. I suppose if he is sleeping and is happy then he's getting enough food?!

His moses basket is at an incline. I'm using a wedge I got when pregnant to hold my bump when lying on my side :haha:

I think i'll keep with just the ranitidine for now and see if by just being a bit more relaxed and baby-led it will make a difference. I really don't want to force him to eat especially like you say if it will distress him further.
 
We are still using 'bed blocks' to raise DD' cot end up :thumbup:
 
gilz,

Been where you are and know how hard it is to funtion, and how vulnerable you feel. You are on the right track and must keep teling yourself every day what a great job ur doin.

hurrah for ur GP - that 20mg news has made my day - GP's like that are few and far between. I'd ask your GP for an URGENT referal to Yorkhill regardless (where do you live?), so that they can investigate further. I didn't know GP's could do this but they can. Specialists at Yorkhill might prescribe a higher dose where needed, or carry out an endoscope (smal camera, bum (TMI) to examine inflammation and check for any other contributory factors).

20mg is the max my previous paed would prescribe and he wanted to leave her on that dose for another couple of weeks to see how things went, even though I told him her symptoms were seriously worsening again. Sounds a bit like yours - didn't have a clue about reflux! Some comments were so ridiculous that I jst sat staring in disbelief. When I told him I knew higher doses could be prescribed he said it was possible, but Yorkhill would want to investigate with an Endoscope b4 doing that. I said if that was the nxt step we had to take it - she jst couldn't be left to suffer the way she was. He said he was 'out of ideas' so would refer her. I later found out that he did not put a referal through until 3+1/2wks later!!

Where do you live?? I'm in Hamilton (about 20min from Glasgow)

Are you back using the mups? What I did was dissolved them in a little round dish and kept pouring off the water, then adding more and pouring it off again, until it was mostly the wee pellets left, (just less for her to take). Then I added a little apple juice and poured it off too (to try and disguise the rotten taste a bit). I used the end of my finger to scoop up all the pellets and put my finger up against the roof of her mouth. Then I gave a few sips of colled boiled water from a bottle to wash them down. At 5mths I started mixing the meds with a little apple sauce which glues it all together and makes life much easier. Using a syringe is IMPOSSIBLE, but this worked a treat for me!!

I know every waking minute is taken up, but try to do the folowing:
1. look at www.marci-kids.com
2. Buy "colic solve" Dr Bryan Vertabedian (Amazon.co.uk £6 ish) - the reviews speak for themselves: its short and comprehensive, the guy is a paed himself and had a kid with reflux
3. Get hubby to take hols from work if at all possible - it's hard to accept, but your baby really is ill, and if he explains this well they should be able to give special leave on compassionate grounds.

Sorry so long huni - thinkin about you both xxx
 
prgirl - stardust spot on - you need omeprazole. The longer you wait, the more acid damage there will be to the oesophageus and stomach lining, and the longer it will take to heal and let the meds start working. Rantidine is not very effective and most build up a tolerence very quickly to this drug (it works by blocking some acid receptor cels). Omeprazole turns off the acid pumpd st source.
 
Thanks Steph. The past two nights doses of 20mg have made no difference so far. I've still been using the solution but will give the mups a go today.

I stay just outside Kilmarnock, used to work in motherwell so know hamilton pretty well, and was going to ask our consultant about Yorkhill but I didn't think hed refer us. I found out that the top paedi atric gastroenterologist at Yorkhill, Dr Grogan don't know if you've heard of him, consults privately out of Ross Hall so if our current paediatrician isn't helpful I'll spend the cash to go private. Also I would love someone actually properly examine Noah even if that meant the camera, as he's had no tests since they ph tested him in neonatal.

Things definitely can't continue like this anyway the past threenights I've actually been sobbing during the night feed as I know exactly how bad things will be within five minutes of it finishing.

Second batch of jags today hope they don't make things worse like last time!
 
Thanks Steph. The past two nights doses of 20mg have made no difference so far. I've still been using the solution but will give the mups a go today.

I stay just outside Kilmarnock, used to work in motherwell so know hamilton pretty well, and was going to ask our consultant about Yorkhill but I didn't think hed refer us. I found out that the top paedi atric gastroenterologist at Yorkhill, Dr Grogan don't know if you've heard of him, consults privately out of Ross Hall so if our current paediatrician isn't helpful I'll spend the cash to go private. Also I would love someone actually properly examine Noah even if that meant the camera, as he's had no tests since they ph tested him in neonatal.

Things definitely can't continue like this anyway the past threenights I've actually been sobbing during the night feed as I know exactly how bad things will be within five minutes of it finishing.

Second batch of jags today hope they don't make things worse like last time!

Hang in there! The first 5months of my LO's life were hell (I'm not kidding) but we're getting there now and I have a beautiful smiley angel :)

Have a look at things one at a time -

1. Medication. Get onto tablets, the solution isn't as effective. Give LOSEC 20mg all at once on an empty stomach at least 30mins before the next feed - very important to make sure that it's most effective! Don't crush it. Put 1 or 2 drops of water onto it and let it soften then mix it into yoghurt, fruit puree or fruit juice. Don't grind it or anything. Half a teaspoon is enough and make sure none gets spat out - every last bit counts. If he's worse overnight give it all before bed and if he's worse during the day give it all first thing in the morning. Boots own brand gripe water is just sodium bicarbonate which is an antacid (neutralises acid it comes into contact with), put 5-10ml of this in every feed. Don't think any other brands are sodium bicarbonate.

2. Feeds. What bottles are you using? We had to use Dr Brown's for ages but now Macy tolerates Avent with the anti-colic rings. I've heard slow flow teats suggested but my LO always done much better on a faster teat, in fact I now have to cut a slit in the top of the teat cos she can't get it out fast enough! Anyway, try the slower teats for a day and faster ones for a day and see what works best. Have a look at formulas. We started on Aptamil, changed to Aptamil Comfort (made things worse), SMA Staydown (helped for around 5weeks then made things much worse) back to Aptamil and then we were given Neocate. Does he fight feeds? If so, keep feeds really relaxed. Do something nice before hand and wait until he's happy and calm, put some nice music on and get snuggled up and offer him the bottle. The second he starts to fuss take it away, cuddle him for a minute and bring his wind up really gently. We used to walk around the room or gently rock Macy on our knees, also sat in front of the TV to distract her while feeding. If he fusses wait until he's calm again before offering the bottle. If he fights it try again in 30mins. If he's frightened of feeds don't make a big deal out of it - my LO ended up terrified of bottles because I kept forcing them as was worried. She'd only feed from a syringe or spoon for ages and I had to beg the paeds not to put an NG tube in! Can be a good idea to feed him in his sleep at 10-11pm too, was always my LOs best feed.

3. Probiotics. Heard lots of people say these are fantastic for formula fed babies - formula doesn't have the probiotics to aid digestion that breastmilk has. Using probiotic yoghurt on my LO from 4months seemed to help.

4. Sleep - see you already have a reflux wedge so not much I can suggest there. Was going to say tummy or side sleeping might be better (forget the sleeping rules where severe reflux is involved but check with your GP or Paediatrician first!)

5. Weaning. He's a bit young yet but when the time comes it may be your lifesafer. My LO was weaned under a paediatric dietitian at 11 weeks, since 5months she has been on a mainly solid diet and it has made a huge difference!!

6. If he's really inconsolable with pain and you can't soothe him try the happiest baby on the block - swaddle, swinging (rocking, juggling in arms or in a swing), sucking (dummy), side/stomach position, and shsshing (or white noise).

Chin up, I remember being you not so long ago!!! xx
 
Stardust - At 13wks is Noah not a bit young to mix omeprazole with yoghurt, puree etc?? Great advice though girlie, and I also have a happy smiley baby most of the time. Soph was also HELL (and I mean HELL too!) for 5mths, but maybe thats cos she wasn't gettin enough meds b4 then (?). Thats one of the biggest problems for all of us I think - always seem to be 'guessing' whats best - I made decisions only to change them 1/2hr later cos it's always so unpredictable - ur always questioning whether ur doin the right thing or not.

Also, thanks for the gripe water info - thats really useful.

When Soph was really distressed, one of the best things I found was 'marching' uo and down with big stamping feet. Later this became bending my knees suddenly (like you do with an older kid when pretending you're gonna drop them) - the 'jerky' movement seemed to really settle her. I still use this getting her off to sleep sometimes.

Sophie slept on her tummy from 5wks old as she couldn't sleep any other way. Tummy sleeping is one of the biggest 'causes' of SIDS, but there are nearly ALWAYS other contributory factors. I was mega para about this for ages, but her noisy mucousy breathing really helped cos I could always literally hear that she was breathing.

Also, 'Nelsons Teetha' powders are great, the chamomile seems to really help her reflux.

Glad Macy doin so well now, everyone around me says how Sophie is like a 'real' baby
now!
 
Thanks Steph. The past two nights doses of 20mg have made no difference so far. I've still been using the solution but will give the mups a go today.

I stay just outside Kilmarnock, used to work in motherwell so know hamilton pretty well, and was going to ask our consultant about Yorkhill but I didn't think hed refer us. I found out that the top paedi atric gastroenterologist at Yorkhill, Dr Grogan don't know if you've heard of him, consults privately out of Ross Hall so if our current paediatrician isn't helpful I'll spend the cash to go private. Also I would love someone actually properly examine Noah even if that meant the camera, as he's had no tests since they ph tested him in neonatal.

Things definitely can't continue like this anyway the past threenights I've actually been sobbing during the night feed as I know exactly how bad things will be within five minutes of it finishing.

Second batch of jags today hope they don't make things worse like last time!

I'm jst at Hamilton Racecourse - would have come through for a wee visit, but Soph gets really ill in her car seat (and remains ill the rest of the day), n don't fancy using the train with all three kids in tow. But maybe do that one day after the schools n nursery go back if you fancy? (don't worry about the state of your house - I'll bet mine was worse during the nightmare months!)

I'd defo go to Dr Grogan at Ross Hall - apparently you'll only need an initial consultation because he'll then refer you to yorkhill and you'll basically 'jump the que'. My dad has cover through his job and my mum has gone to Ross Hall for a few different things - she got seen way quisker on the NHS as a result. Madness, and against all my principles, but I'd do it in a heartbeat - jst never thougt about it at the time or I'd have done it cos I was out of my head with worry.

Also, I think they'll give Nutramigen or Neocate straight away too (for dairy allergy) - if omeprazole isn't working on the high dose it's highly likely he's CMPI despite normal pooh. I really didn't believe it would help Soph, but it was a huge breakthrough.

Keep us posted :hugs:
 
KELLY CONGRATS!!!!!!!! Somehow missed that your preggers (ya brave lass!)

Also, you make me smile n cheer me up - i'm sure others will agree -with ur positive wee comments ....

Hugs x
 
KELLY CONGRATS!!!!!!!! Somehow missed that your preggers (ya brave lass!)

Also, you make me smile n cheer me up - i'm sure others will agree -with ur positive wee comments ....

Hugs x


Thanks so much ~ So sweet of you :friends:

'Brave' is one way to look at my rather quick new pregnancy! :haha:
 
Wow girls thanks so much. Will post late in greater detail but was just so overwhelmed by all the help and support. Massive massive :hugs:
 
Ok now a proper reply :thumbup:

Noah was 15 weeks yesterday and is 8.5 weeks corrected. On paediatric advice we are weaning at 17 weeks so 10.5 weeks corrected. I was really worried about him being so young corrected age but if others have weaned as early as 11 weeks hopefully he'll be ok. Really hope it helps but I have spoken to som reflux mums where it did was cause lumpy sick. My gp told me to mix the losec mups with a weaning spoonful of fruit puree as there was no way they'd get taken otherwise as they taste rank so I had been doing that. Same thing with the omperazole solution I was giving him 1ml of puree at the same time to disguise the taste.

Didn't know about the gripe water or teething powders so I'll look into both of those. As for bottles and formulas here goes, started with tommee tippee relfux got worse so tried Dr Browns for three weeks made no difference so tried Mam again no difference so we are back to the tommee tippees. When Noah was on gaviscon we used variflow teats, when he changed to Enfamil AR we went back to size one teats and I can't get him to tolerate size twos. He either eats far too fast even if I stop every half oz or it just spills out the side of his mouth.

Milk wise in neonatal we started on aptamil. Came home used aptamil powder, reflux worsened and he started puking every bottle up, tried Aptamil comfort got puke and constipation. Realised in neonatal it was ready made Aptamil so I tried aptamil cartons and that helped for about a week, apparently the ready made stuff is easier to digest due to the protiens already having been broken down. Then the paediatrician suggested we try SMA lactose free as sometimes that helps with reflux, complete disaster he puked like a fountain and with absolutely no warning. Then they started us on Enfamil AR and that's been the best so far.

We have a sensor mat in his crib so Noah too goes down on his front if that how he needs to be to get some relief. HV went bananas about and she was promptly told to shut up unless she'd ever had to care for a baby with reflux :blush:

I'll get the referral to Ross Hall done this week week and hope Dr McGrogan isn't about to head off on his summer holidays.

Oh and one other question Noah is starting to become aware of his hands now and when his reflux is really bad at night and he's distressed he's starting to nip and pull his face. I cover his hands with socks but wanted to know if anyone elses baby had that reaction?

Steph that sounds great to meet up, since neither of our LOs are car seat fans we could meet somewhere in the middle save Sophie getting upset.
 
Oh me again :blush: just attempted to give Noah the two losec mups rather than the omeprazole solution. Added a tiny bit of pear puree as I've been doing with the solution. Five minutes later spectacularly puked back up all over me, little granules everywhere :cry: His congestion is so bad today so I don't know if that had anything to do with it but not a successful attempt tonight anyway.
 
Ok now a proper reply :thumbup:

Noah was 15 weeks yesterday and is 8.5 weeks corrected. On paediatric advice we are weaning at 17 weeks so 10.5 weeks corrected. I was really worried about him being so young corrected age but if others have weaned as early as 11 weeks hopefully he'll be ok. Really hope it helps but I have spoken to som reflux mums where it did was cause lumpy sick. My gp told me to mix the losec mups with a weaning spoonful of fruit puree as there was no way they'd get taken otherwise as they taste rank so I had been doing that. Same thing with the omperazole solution I was giving him 1ml of puree at the same time to disguise the taste.

Didn't know about the gripe water or teething powders so I'll look into both of those. As for bottles and formulas here goes, started with tommee tippee relfux got worse so tried Dr Browns for three weeks made no difference so tried Mam again no difference so we are back to the tommee tippees. When Noah was on gaviscon we used variflow teats, when he changed to Enfamil AR we went back to size one teats and I can't get him to tolerate size twos. He either eats far too fast even if I stop every half oz or it just spills out the side of his mouth.

Milk wise in neonatal we started on aptamil. Came home used aptamil powder, reflux worsened and he started puking every bottle up, tried Aptamil comfort got puke and constipation. Realised in neonatal it was ready made Aptamil so I tried aptamil cartons and that helped for about a week, apparently the ready made stuff is easier to digest due to the protiens already having been broken down. Then the paediatrician suggested we try SMA lactose free as sometimes that helps with reflux, complete disaster he puked like a fountain and with absolutely no warning. Then they started us on Enfamil AR and that's been the best so far.

We have a sensor mat in his crib so Noah too goes down on his front if that how he needs to be to get some relief. HV went bananas about and she was promptly told to shut up unless she'd ever had to care for a baby with reflux :blush:

I'll get the referral to Ross Hall done this week week and hope Dr McGrogan isn't about to head off on his summer holidays.

Oh and one other question Noah is starting to become aware of his hands now and when his reflux is really bad at night and he's distressed he's starting to nip and pull his face. I cover his hands with socks but wanted to know if anyone elses baby had that reaction?

Steph that sounds great to meet up, since neither of our LOs are car seat fans we could meet somewhere in the middle save Sophie getting upset.

Great, defo meet up soon as schools go back - Mon/Tues best 4 me cos mum n dad can do the nursery run for my middle man - otherwise we wouldn't get a word in edgeways!!:thumbup:

When Sophie was really bad she clawed her face and mine too, and her eyes kinda 'glazed over' with the pain. The position that gave her the most relief : Laying baby face down along your left forearm, with his head near your elbow and his arms hanging down either side of your arm. Your hand (of the arm he's lying on) supporting his nappy area between his legs. His side is resting against your body, or you can tilt him further so that his back is resting against your tummy. Once you feel you have a safe and secure hold of him, gently rub his back all the way from bottom to top, (even gently patting seemed to hurt her). Or you can bring the other hand between his legs and hold onto the first hand to help support his weight. I'd often distract Sophie with the TV (or kiddie DVD with tunes/bright colours) and do the 'knee dropping' thing for jerky movements. Bonus that you can easily lie Noah down on his tummy if he nods off.:sleep:

Asked my mum about Ross Hall - she said that often the consultant will give you a card with their secretries number so you can phone and book straight into his NHS clinic if you dont have full private cover.

I know you can give meds again if they're sicked up, but cant remember if it has to be within 15 mins or 30mins. Might help to give 5mls of cool boiled water from a syringe to wash them down. Best syringes come free with a bottle of 'neurofen for kids', syringe totally plastic (can sterilise), have a flat end (instead of usual 'nib'), clear markings (0.5ml increments) - well worth buying a bottle jst for syringe. Also, I'd go for a nice thick apple puree as gooey consistency holds the meds much better than thinner ones - you should be able to use a smaller amount too.

steph x

:hugs:
 
ps no advice on bottles or ff as soph still exclus bf. I only use nutramigen ff for readybrek n mixin solids...
 
Thanks for the syringe and puree advice Steph I'll get both today. As for last night absolutely no change. It's almost like clockwork. Down at 8pm, restless by 11pm, in proper pain by 12 and then chaos until 4am when he feels hungry/brave enough to eat and then screaming.

As for meeting up Monday or Tuesday is fine with me it's not like I venture out much with Noah as it rarely ends well. We can decide where nearer the time :thumbup:
 

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