desperate - what do I do now?

[mumtoonebub]

Hi RISA

I have a 24 week old son who was diagnosed with silent reflux around 8 weeks old. We had to stop B'feeding at around 6 weeks as he would just pull away screaming and subsequently my supply dropped despite the help of lactation consultants and going on maxalon to try and boost the supply again. At the time they thought he wouldn't feed due t low supply but I suspect it was because of reflux. Formula feeding initially went well on Nan gold 1 HA and then all of a sudden he started all the same crazy behaviour - the back arching and hysterical screaming plus we could hear his stomach make loud noises the moment he began to swallow. A Child health nurse suspected silent reflux and after seeing a paediatrician this was confirmed as most likely and he was put on Losec 10mg twice per day. After no improvement on that cows milk protein intolerance was suspected and we tried soy milk (as recommended by his paed) for around a month with initial improvement then a rapid decline around 3 weeks on it to the point where he was refusing to feed. At this point I tried cows milk based formula again, as was not 100% convinced of the diagnosis of intolerance, but I was proven wrong as he was even worse again with dreadful wind and pain. We persevered on cows milk formula for 3 days to give it a fair go - We then switched to goats milk formula with immediate effect - he was a dream baby for 2 weeks on it, taking large volumes and then the same old symptoms started creeping in until 3 days ago when he just became unbearably bad again and to the point where he has barely fed in 48 hours now (apart from some solids yesterday after milk was refused). Today he won't feed or take any of his solids:confused:
We saw his paediatrician again yesterday who agreed for him to try pepti-junior formula and switch to Zoton - I had asked if Zoton is a more effective PPI and he said he had never seen any babies improve on it but he was happy to give it a go - to me anything is worth a go so he started at 15mg this am (half a sachet).

I am so sad at what is going on - I have suffered this for pretty much 6 months - I get my hopes up each time we try something new to have them dashed again. We also tried seeing a paediatric chiropracter - again initial slight improvments but we never got the results we had hoped for and his chiro suspects that until he gets on a correct formula his problems will continue.

I am wondering if you have any advice on how to get him to take some milk again? - we should get the pepti-junior from the chemist late this afternoon - I am concerned that if he will not even take a sip and becomes hysterical how will he realise that it (hopefully) does not hurt his tummy like the goats milk now is? My friend suggested trying it in a sippy cup - we have never used one of these yet but anything is worth a go. Solids wise - well I am just stopping as soon as he looks like he dosen't want any more - the last thing I need is him also becoming phobic about taking that as well.

The paed angered me again yesterday - he does not seem that sympathetic to our situation and puts on that sickening professional smile when I explain whats going on. He had no concern that at 3.30pm in the afternoon my son had only taken 30mls of formula since he woke up that morning! All he could keep saying was that he was still on the 10th percentile for weight and that he had always been on that from birth. I politely tried to say that what I was most concerned about was his dreadful screaming in pain at each feed. Obviously volumes are a concern as well but I do understand that a 10th percentile baby will take much less formula/ need less formula than a baby say on the 50th percentile to continue to grow and gain weight. what his paed dosen't see is that when he is feeding well he comes up off the 10th percentile and thrives then drops back down again just before we see the paed again - as we usually see the paed when things really bad like this.
I came away feeling like i'm overreacting about him not feeding and screaming at each feed - although he didn't quite say this I felt like this was what he was thinking by the way he spoke to me.

Oh forgot to mention I also have to put infancol in every single bottle or else the wind he gets becomes trapped very easy and the next feed does not go well as he is so twisted and unconfortable with the trapped wind.

Does RISA have any meetings/ mothers groups you can attend? I would think about joining if this was the case - it would be great to talk to other mums who have gone through similar situations. I live 45 mins south east of Brisbane city in the Redlands area.

Best Regards
Lynn

[RISA]

Hy Lynn,
Gosh it sounds like you are really having a hard time, and so is your bub  I’m sorry too that you aren’t feeling supported by your paediatrican. While he may be happy with your bub’s weight gain, like you say, it doesn’t reflect the journey you are on, or the battle that you have to keep them at that percentile. From what you have said, you have to work hard to make sure your bub does stay there and the dr doesn’t seem to recognise that either. I’m sure it would help if he did. I’m sorry you feel as though your paed feels you are overreacting. I think that you are doing an awesome job, if it helps any, and I think that a mother has a duty to take their bub to the dr if they are concerned - that’s exactly what you are doing, so please don’t worry about whether they think that or not. It really doesn’t matter. I remember stressing over that kind of thing myself, but the bottom line is caring for your child, and that’s all that really matters.

It sounds like you have proven his cows milk protein sensitivity, so that is a positive step. It is fairly common for children who are sensitive to cows milk to also have problems with soy products and goats milk, so that makes sense you eventually had problems with them as well. I hope the pepti-junior helps. If you still have problems, it may be worth trying Neocate or EleCare which are broken down even further.

I know some babies do better on Zoton than Losec, and some are the other way around. They are all different, so I’m sure it is worth trying. Just watch making more than one change at a time as if you do find something that works, then you are left with the puzzle of trying to figure out what it is- which helped or if both did.

I think your friends’ idea of putting the milk in the sippy cup might be worth trying. You could also try for just a cup or even a dropper if all else fails- and hopefully he will drink it. If you cant get him t drink anything from the bottle, or cup, then I would let your doctor know what is happening. You can also try offering him solids that are made up with the formula e.g. lots of custards made on his new formula, thicken rice cereal with heaps of it, and that kind of thing- it can sometimes help to sneak the formula in like that. I agre that you shouldn’t push solids, especially if he doesn’t want any more. At his age, it is all still a trial thing and not as important as the milk, so just do what you can. If feeding issues do continue, it may also help to see a speech pathologist who specialises in feeding and swallowing issues. As you say, they may not improve until the reflux is under control, but this is a really important time too, and it may be worth asking a speech pathologist to see if there is anything you can do to help- fingers crossed though there will not be any problem and he’ll take to the new formula with no worries. Hopefully the wind problems will ease up too, as that is quite possibly because of the food sensitivity.

It may also be worthwhile considering seeing a dietitian who specialises in food sensitivity- I’m sure they would be able to come up with some ideas, especially if you find solids difficult. It may be worth keeping in mind anyway.

And yes, RISA does have meetings and get togethers in Brisbane. We are Brisbane based and have a lot of members in the area. I know some of the mums are organising one shortly, and we also have a coffee morning planned for next month (on the northside of town though). We also have online parent groups, and do online chats, which are really great too. It can help just to talk to other mothers who understand, and who have gone through things like that. I’m sure they would also have lots of ideas of how to get your bub to drink his formula/eat, and it can also help n other ways, as you probably have a lot of ideas to share yourself, and can offer support. That is really therapeutic too.

Anyway, I hope that helps, and I hope he goes well with the new formula this afternoon

Glenda

[mumtoonebub]

Thanks Glenda for all your advice and suggestions - sadly he won't even touch a drop of the new pepti-junior - he tasted 1 drop and pulled a face and became hysterical - I think in the past 48 hours he has developed extreme phobia of feeding and the bottle - it became so bad with me trying to feed him that he grabbed a clump of his hair and pulled it out then cried harder. I tried everything from using his dummy to changing arms/ feeding position to changing rooms to letting him sit with his bottle and 'play' with it but he became hysterical. The sippy cup didn't work - the milk just fired out of that up his face - he just shoved it away furiously with his hands and started screaming again. I have given up and put him down for a sleep. I am not sure if this is the right thing to do but I don't feel as if I should offer him any solids as if he knows he can get them then what hope do I ever have of getting him to take a bottle of milk ever again? I am figuring that if he becomes really hungry he may try his new milk. I think if 24 hours go on and he has still had nothing i will need to take him to a Dr or the hospital. Have you ever heard of babies refusing to take it before? - I suspected this would happen as he does not know its different milk in the bottle.

As for me - this is tearing me apart - I feel physically sick at the thought of him not feeding - I want him to at least try his new milk - I am scared for his brain and eyesight development as how can he get all the nutrients he needs from some sweet potato and baby rice!?

The only feed he has taken today was a dream feed - at 10.30am! I am reluctant to do that again as do not want him to only be able to feed this way - what do you think on this? Do you know if centres like Riverton in Brisbane can help with situations like this? I have no idea where to turn for help.........

Lynn

[RISA]

Hi Lynn

I am so sorry it came to that, though I'm not totally surprised either. I was hoping that it would all be okay, but something else that may impact is the fact that it doesnt taste particularly nice (in fact awful). Have you tried feeding him since he fell asleep? If not, then it may be worth trying that, to at least get him through the night.

You can only do what you can do, and you cannot make him feed unfortunately, no matter how desperately you want him to. At the very worst, he will be able to be tube fed, at least temporarily, to get beyond the immediate period- I don't know if that helps you or not, but it may, just to know that you have options.

Riverton may be able to help (it's now called the Ellen Barron Family Centre, and is in the grounds of the Prince Charles Hospital). Other options I can think of right at the moment would be your doctor or child health nurse, your local hospital or children's hospital, speech pathologists who specialise in feeding and swallowing issues, and parenting centres.

I know a speech pathologist who we can ask for questions, so if you are happy for me to, I can ask and see what suggestions she can offer as well. It is really important to address the issue, as is quite obvious, but even if he does start to drink a little, I think it may be important to get follow up advice as well. The earlier any feeding issues like this are addressed, the better it is- and it may be a combination of getting his reflux under control and addressing his fear of eating (poor little man):(

I hope you have a decent night, and I'll check in and see how you are doing in the morning. If you could send an email to us at info @ reflux.org.au (no spaces), it might be eaiser to continue the conversation privately.

I hope that helps, and please hang in there! just take one moment at a time and don't think too far ahead.

Glenda