Is there light at the end of the tunnel?

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Permalink Reply by Hannah K on January 8, 2010 at 13:23

When he was on the Cow and Gate Comfort he was also only drinking around 20oz a day with a struggle but at least he would drink 2-3oz in about 10 minutes and then refuse to drink anymore rather than 1hour!!! And he was "only" having two night feeds rather than waking every hour.
A lot of my friends babies are sleeping through the night. Is there ever going to be any light at the end of the tunnel? Do reflux babies ever sleep through the night??? Has anybody been through similar experiences?

Hannah x

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Permalink Reply by Sarah Moore on February 1, 2010 at 11:35

I could have almost written that post myself. Josie has had reflux since birth and we finally started to get her vaguely sorted at 4 months when she went onto Neocate. We had tried Nutramigen for 6 weeks before that to no avail. She would hardly drink but after a while of being on Neocate and with a lot of persistence we gradually built up how much she was having. She now takes 7 or 8 oz sometimes which I never believed would happen. She is also on Domperidone and omeprazole and keeping on top of the doses of these (part. domperidone) seems to have made a difference. I would say it took about 4 weeks for her to be taking a half decent amount of Neocate.

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Permalink Reply by Hannah K on February 3, 2010 at 16:48

Thanks Sarah,

I think you are right. It took around 3 weeks on Neocate before we saw a difference with James. When we put him back on Cow & Gate after 3 weeks he started to get worse. So we have put him back on Neocate and he seems to have improved again. Although he still won't take large amounts of Neocate. But I have to say he is getting better. He can manage 4-5oz now which I am happy with and the health visitor has said we can put him on 3 full meals a day.

Han x

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Permalink Reply by Sarah Moore on February 4, 2010 at 9:13

We tried going back onto Aptimil at one point when she was on Nutramigen as we were so desperate. SHe took it readily for a day or two but then the pain must have kicked in and she totally refused milk. I had to feed her in her sleep. That's when we swapped to Neocate. Her intake was never great until just before we weaned her at 6 months - she even took 28 oz one day!! Then we weaned her and as she was having less bottles her intake went back down again. Her weight stayed the same for a couple of months so the paediatrician upped her meds and she has been much better since. She even put on 1 lb in a week!! It has settled down since but she is putting on weight well at the moment.

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Permalink Reply by Kate Durham on January 9, 2010 at 8:59

Hannah,
You poor love it is so hard going I know and your not the only one to have felt so desperate I promise you but I also promise you it does get easier, slowly but he will improve. My lo is now 12 months also severe silent reflux and lactose intolerance. Only bits of advice I can offer is stick with the lactose free formula made huge difference for us and don't worry yourself too much about his formula intake, Scarlett never drank more than 4oz in a sitting her usual was 3oz and she was on about 8 to 12 oz a day from about 4 months old. She is small but has always gained slowly and the paediatrician never had a problem with her milk consumption. Some recommend early weaning I know but I never did as felt she wasn't ready but perhaps I should have, who knows. Also dietician said to put her on Abidec vitamin drops because of her low milk consumption so you might want to check with your dr or just start them. I know it's easy to say don't worry that he's not taking the bottle and I was regularly in tears over it but if he wont take more then you just have to accept that and offer another bottle 3 hrs later, sitting trying to feed for an hour will leave you so stressed and babies pick up on that v early on and that wont help his feeding either. Last bit of advice re sleeping, does he have a dummy and would you introduce one if not? Sounds like he is just satisfying his sucking reflex rather than hunger just a thought!
Last thing, when it comes to reflux babies you throw out the rule book, don't judge your baby or your parenting by anyone elses standards and unless you've had a reflux baby you can't understand that. Whatever your doing your doing brilliantly, your his Mummy!

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Permalink Reply by Belinda on January 9, 2010 at 16:40

Hi ya chuck my daughter is nearlly 18 months old and was diagnosed with server silent reflux at 5 wks old. Things do improve over time. They will eventually become easier and more normal. I felt like I couldn't cope, like i was a bad mother for not being able to comfort my baby especially when other mothers love being with their babies, and I felt guily for hating it.
My daughter has improved since 14 months old finding out she intolarent to dairy, and at 16 months shes intolarent to wheat and gluten. The reason behind 4 wks is to give you a clear indication as to wheather its suiting him. Stick with it, it can be well worth it.
Sleep was a night mare with her until 16 months old, I would cry most days because I was so tied. But for the last neally 2 months its been 100% better, she sleeps till 3.30am then wants to get in with us, but goes straight back to sleep until I have to wake her at 7.30am,,, This is a habit shes in, (Not the reflux).
It happened around a month to six weeks after being diagnosed and put on a special diet.
She still takes a little medication every day, but is improving lots.
I wouldn't worry about the volume of milk your little one is intaking as long as he is taking some.. my daughter refused milk at 5 months totally.
Have you begun weaningyet, maybe if he was having a little bit of baby food you wouldn't be so worried about the milk intake. And early weaning can help a reflux baby. I weaned at 4 months and it help us loads.
It is true what Kate says throw the rule book out with a refluxer, there totally different, I have two older children (not refluxers) and these were much easier.~ I found a dummy helped with refluxing.

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Permalink Reply by Wendy Marsh on January 10, 2010 at 18:33

Hannah

You poor love, you will find that lots of people find the 4 months period the hardest, it seems to be when the reflux is at its worst. I also agree with the dummy as it has been a godsend for us and they say that the action of sucking helps to stop the refluxing. I completely understand the waking every hour as Harry did this for months, until he was out on Omeprazole. He is now 8 months old and we are already getting some nights when he now sleeps through and the nights he doesn't replacing the dummy usually soothes him back to sleep again.

So there is light at the end of the tunnel but as the others have already said don't compare your little one with anyone whose baby doesn't have it as there is no comparison.

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Permalink Reply by Hannah K on January 11, 2010 at 13:39

Thanks Kate, Belinda and Wendy,

Those are such kind words and it is such a huge help to know other people understand what we are going through. Sooo many people just don't understand.
James does have a dummer and he loves it. The last week (since we started the neocate) has been a week from hell but he is slowly starting to drink it. I had weaned James from 3 months because I was told it could help the reflux, and he loved his food but hated his milk. However when he was put on Neocate a stopped giving him food as I didn't want him to fill himself up on his food and then refusing the milk even more. I think he is getting used to the Neocate because yesterday he had two bottles of 6oz!!! And on the other bottles he had 3-4oz!!!
He still screams out in his sleep so I'm crossing my fingers that will decrease over time. I might start giving him some purrees again now that he has started drinking the neocate. Fingers crossed.
But lack of sleep with a reflux baby is definately the main issue. When you are sooooo tired you just feel like you can't cope. At least I can hope that one day he will develop better sleeping, he's only young, so I'm crossing my fingers.

Hannah xxx

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Permalink Reply by Aisling Byrne on January 31, 2010 at 17:06

Hi Hannah,

My Daughter is now 13 months, I know exactly how you are feeling. I knew from Day one that my daughter was not behaving like a "normal baby" she would cry morning, noon and night, she would only ever take 2oz at a time and it would take us over 2 hrs to get her fed. She would only sleep for 20 minutes at a time and if we were lucky an hour at night. Eventually after going to my GP every week for about 12 weeks, I finally had enough and went to A+E where they sent her to Paeds who confirmed she had a silent reflux they put her on Zantac. This still didn't help so I took her privately to a Paed who changed her meds to Losec Mups he said that i shouldn't have to take a baby privately so he advised me to get her referred again to which i did. At 15 weeks, now at the end of my tether the new Paed changed her to Neocate as she had an intolerance to cow's milk protein and told me that it may take 6 weeks for things to settle down, he advised that we start and wean her straight away on pureed fruit and veg. It took at least 6 weeks for the Neocate to take affect but it was my saviour. It gets easier every day, she is still on Neocate with a failed attempt to reintroduce dairy to her diet. And I can tell you that we had our first full nights sleep a week before christmas but we had to do the controlled crying method to get to that point. As she was so used to sleeping in our arms she still falls asleep in our arms but now goes down in her cot shortly after,
She is now sleeping from 7.30pm to 7am and it is pure bliss, not just for us but for her she is in better form when she wakes up in the morning. I can only tell you that i understand exactly how you are feeling and would suggest that you use all available support that you have my sister would come and stay with us two nights a week and take her into the spare room to allow us to sleep. It is a very trying time but i can tell you, you will get through it and don't think you are alone, There are many of us out there.

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Permalink Reply by Wendy Marsh on January 31, 2010 at 20:10

Aisling

I am really interested that you used control crying and it worked but can I ask you how long you did it for before she started sleeping?

Thanx

Wendy

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Permalink Reply by Aisling Byrne on February 7, 2010 at 21:18

HI Wendy,

We tired the controlled crying method when she was about 8 mths, but it failed and honestly we probably didn't stick to it for long enough, but then we decided to try it again when she was 11 mths. It took us about a week for her to sleep all night. It was so hard but it paid off in the end. I think its all about the timing and getting her into a routine. All babies are different but i think when you get to a point that we where at you will try anything just for a few hrs sleep.

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Permalink Reply by Hannah K on February 3, 2010 at 16:44

Thanks Aisling,

Hearing other people who are getting through it is so helpful. We kept James on Neocate for 3 weeks. The first two weeks were hell but he really started to settle in the third week. In general he just got much more content and relaxed, although he still wasn't drinking much, but he just seemed happy. Although he still wasn't drinking much, he wasn't arching back in pain anymore at the bottle. He was so much more relaxed we have actually taking him off the Domperidone and Ranitidine (he still has the Gaviscon) and he coped fine without the medication. Becuase he still wasn't drinking much milk and his weight gain was poor the health visitor has given us the go-ahead to put him on 3 full meals a day (+ around 15oz milk he drinks).

In the fourth week we we put him back on Cow & Gate to see if him getting better was just a co-incidence or if it was milk related. He went mad and started guzzling 7oz bottles which I have never seen him do before and he was wanting his bottle every 2 hours. It was very strange. The first two days were fine although he seemed constantly hungry, but then on the third day he got very irritable and could only sit still for about 5 minutes without crying. As soon as I lay him on his back he started crying too. This went on for about a week, so I put him back on Neocate. He has become much more relaxed and content again. However he is down to only drinking 15-20oz again.

So the question is:
Is it a milk intolerance which is causing the problems and the Neocate is helping?
Or did the problems return when he was on the Cow & Gate because he was drinking such large volumes?

How can I determine which it is?

Hannah x

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