I just don't know... reflux, colic???

[Shiny95]

You get so many similar threads but i thought it best i put my situation down and see if there is anything you can suggest.
It's getting so distressing....
My DS symptoms are:
- occasionally coughing and choking on milk let down
- fussing pretty much straight after a burp at the end of a feed.
- he goes between stretching legs out so straight and strong its impossible to bend them and then quick jerky kicking movements
- back arching
- vomiting, from large amounts with or without a burp to watery milk flowing out of his mouth two hours after a feed.
- sometimes fussy throughout a feed
- no specifc time of the day crying for hours at a time, this could be straight after a feed or after a catnap.
- wanting to suck - he would feed constantly for the relief he must get from the milk running down his throat.. not interested on sucking on a dummy.
- can be a challenge to get a burp
- symptoms the same regardless of a BF or Formula bottle
- odd day where not too much crying
- may be soothed for twenty mins in swing - but no chance of moving him from swing to bed
- Only one poo a day, no chance the nappy will hold it all - very explosive and wet. He's no more relaxed after this.

The Pead recommended:
- zantac, 3 times a day
- mylanta before each feed
- feed from one breast only at each feed for no longer than 30 mins
- do not feed under three hours
- burp for ten mins after a feed
- colic hold if unsettled
- brauers as last resort if bub still upset after following that structure.

other things i'm doing
- burping every 5 mins through a feed (breast feeding)
- slightly elevated bed
- keepng him as upright as possible most of day.

He hasn't shown any sign of improvement and i've been following this structure for two weeks. It's so sad, i could probably say he's had a maximum of three hours in total over his short little life where he's been awake and not unhappy, distressed or in pain.

He is putting on weight, so whilst he's smacking his lips after his feed or within that three hour period, i would have to think he's definitely receiving enough milk.

I just don't know. I'm exhausted, it's soo draining. Will see if can get in to see GP today.

[RISA]

Hi,
Thank you for contacting our organisation. As you say, we get many similar threads, but every child is different too, and there always seems to be something unique to that child. It always helps to be able to talk about your concerns for your own child anyway, and we welcome any questions.

I hope you were able to get in to see your GP today. I think it is really important that you continue to stay in touch with your doctors and let them know your concerns, and everything that is going on.

I hope you are also getting a rest with all this- as tough as it is on him because he is so uncomfortable all the time, it also is tough on you. Coping with a reflux baby- who are often very high needs, with lots of loss of sleep, can be really overwhelming and stressful. It is really important that you are also able to look after yourself, and that you have a lot of support. Are you getting that support from family and friends (often they don't understand the problems, so may not realise they need to be more supportive)

He certainly sounds like he is displaying a lot of reflux signs, and obviously your paed has diagnosed reflux because he prescribed Zantac. Sometimes they start on a low dose of medication (trying to find the lowest dose that works)- but often they need to be increased to be effective, so that may be one possibility the dr will consider. The thing with Zantac too, is when they put on weight, their dose of Zantac may need to be increased to keep in line with that. Also perhaps the drs will consider changing him over to a different medication- such as Losec or something in that line, as they are often more effective as well.

You sound like you are already doing a lot of the things I would recommend. You have obviously done some research on this, so well done!

You say you are keeping him up as much as possible throughout the day - are you carrying him with you in a sling?? if not, that might help as lots of refluxers love to be close to mum, and that way, you can at least get something done!!

One of the things that I don't see you mention though, is the possibility of food sensitivities. Has anyone ever raised that point before? Food sensitivities, and in particular cows milk sensitivity (allergy or intolerance) is a common issue for refluxers. A medical article I read put the figure at approx half of the babies with reflux, so if you haven't thought about that, it may well be worth considering. Cows milk etc can go through breastmilk so what you eat may be important and worth looking at (with the aid of a dietitian)

A suggestion that may be worthwhile, is keeping a written record of each day (and night). Record everything in it, including sleeps (and how long he took to settle), his feeds (and what they were like), any obvious reflux behaviours, vomiting, irritability, back arching- anything at all that you think is pertinent, whether you gave him a bottle or breastfeed, the dirty nappies etc. (Are you giving him a bottle with expressed breastmilk or are you giving him a bottle of formula- sorry, just not quite sure). Since you are giving breastmilk too, it may be important to also include what you are eating on the diary (if you do it). If there are food sensitivities, it may be important to have that record. Sometimes what you eat can affect them several days later, and it can be really tough to remember. I found that using a diary can help make any patterns more clear- it may be able to make sense of why some days are a bit better or worse- and perhaps you can track it back to what you did the day before, or even 3 days before. If you are using formula, naturally include when you use that, and what you used.

Have you spoken to a breastfeeding counsellor to see if they can make any suggestions that may help?

What about the option of thickeners? Just because you are breastfeeding doesn't mean that isnt an option. I used to breastfeed and would then give my son a spoonful of thickened milk following a feed. It didnt stop him refluxing, but it did seem to help it a bit and was worth doing. It isnt the answer for all refluxers, but may be worth a try.

I think it is really important that you trust your instincts, and always do what feels right to you. If I have made a suggestion (or anyone else for that matter) that you aren't comfortable with, then please don't feel pressured into doing it. A mother's instincts are worth listening to.

Other little things that might help are things like making sure he doesn't slump when he is sitting upright (or when you are burping him) as that can put pressure on his tummy and cause reflux. Other things are those like moving his legs to the side if possible when changing his nappy, rather than lifting them up. And avoiding using tight nappies or elastic waistbands too (same reason).

It certainly sounds like his reflux is not well controlled at this point, so the best thing to do is what you are doing- talking to your doctors and letting them know whats going on, and also continuing to look for answers.

I hope that helps
Glenda

[Shiny95]

Glenda,
Thank you so much for your reply.
I didn't get in to see the GP today but hopefully this week. As you mentioned, i imagine he will look at the medication.
Food sensitivities is something i've considered. I will cut out all dairy to see if that makes a difference.
I did actually start a diary today - indicating feed times, sleeps and his behaviour (symptoms) in between. Makes it easier when i see the doctor.
The bottles he has had are formula, Nan ha gold. Just on the occassion that my husband is looking after him and i also wanted to see if his behaviour after the feed was any different.
I don't want to give up on BF just yet if there are other ways of easing his pain.
I like the sound of trying a thickener after a feed. It's worth a try.
Thank you once again. You've given me some other options to consider and try.
If only there was a simple a solution for all bubs with reflux. We shall persevere to find the right one for us.

[RISA]

Hi,
I am happy to help. There often seems to be pressure on mothers to give up breastfeeding when their child has reflux for some reason- or perhaps its just that we start to desperately look for something that will make a difference when other things dont work. It may help for you to know that there is no reason for you to give up breastfeeding though, and it is still the preferred option for a reflux child. Breastmilk is digested quicker than formula and there is less chance of refluxing from an overfull tummy (that's the theory anyway). It's also something I asked my paediatric gastroenterologist when my son was a baby (desperately looking for something i could do to help) and he said that there are no guarantees it would help, that there are lots of babies with reflux who are formula fed and that i should continue breastfeeding if that is what i wanted to do (I did).

If you do notice a change with you cutting out dairy (and it's important that you cut out all traces of dairy, not just the obvious milk on cereal etc)- please see a dietitian who is experienced in treating food sensitivities as it is essential you get your diet right- for your sake AND for bub's. It is a very confusing area.

You hit the nail on the head too- if only there was a simple solution for reflux babies!!! That would make it a whole lot easier, wouldnt it!! I discovered there were positives though- like knowing I was strong, and learning to be more assertive, and more patient and less judgemental. I honestly think my children are more caring and compassionate as a result too. It can help to look at it in that light sometimes.

You're doing a great job, and I hope you find the answers you need soon.

Glenda

[Shiny95]

I thought i'd just post my latest trials....
I saw the GP and he suggested Donnalix!?
I saw the Early Childhood centre lady today who suggested i use nothing (basically made me feel terrible about giving DS any medication at all).
All i want to do is take away his pain.
Whilst trying to minimise medication i think i'll follow my instincts (along with what i've learnt from all my internet research) and go with whatever works and makes him a happier more comfortable baby.

[RISA]

Hi,
yikes, it sounds like things didnt go quite the way you were hoping, and I'm sorry the early childhood nurse didn't offer you the support you needed. That must have been really difficult. Did she explain why she didn't think medications were necessary? Did she have any other suggestions?

I'm sorry you were made to feel bad about giving your bub medications. Obviously your paed determined they were necessary, so please don't feel as though you shouldn't have given them. As you say, you are only trying to take your baby's pain away.

Perhaps it would be worth talking to your paed again to get their opinion? That may help clarify things or at least give you a different perspective.

I'm glad you are still planning on listening to your instincts to help your baby feel more comfortable. I really believe that's very important (no matter how you were made to feel). I hope he feels better soon, and I'm sure by trusting your instincts you'll find the answers you need.

Glenda

[Shiny95]

Thank you for your support Glenda.