Helena's Page

Hi, your children are so gorgeous. Lauren started on the omeprezole at 3 weeks and whilst we did see an improvement, the main improvement has been since my consultant recommended i go on a dairy free diet (40% of babies with reflux have a dairy intolerance). This has made the biggest difference, although it is hard for me to not eat dairy and this has also taken 2 weeks to see results. She is now much improved, still not a 'normal' baby but a step in the right direction. What formula are you using, might be worth investigating a different formula.

Lauren will also only sleep on me, which is exhausting and I know what you mean about the confidence, as I am always questioning myself (am I spoiling her and that is why she won't be put down), but I have to remind myself that she needs the cuddling because of the discomfort she feels.

The medication doesn't taste nice but fortunately Lauren doesn't seem to mind it too much - I have a syringe with the omeprezole and one with the domperidone and alternate between the two as the domperidone taste quite nice!! Might be worth a try. Not sure if Alexandra is taking gaviscon but I find that I have to give max dose with every feed otherwise she gets more restless at night, and also with my son I found that it wasn't as effective when put in the bottle as half of it was left around the bottle so i always gave it seperately.

Not sure what to suggest re aversion, my son refused to feed from me at 6 weeks as he associated the breast with pain but he then took a bottle really well. I am still feeding Lauren, but she will only go on once, so as soon as she comes off the breast, usually after a couple of minutes she won't go back on again but whilst she continues to put on wait I will carry on.

Sorry I can't help more, but let me know if you have any questions and I will try to help!

Take care
Mx

Also, sure you have tried it but feeding when still asleep always worked with my son, also sounds crazy but there is a great CD on the baby reflux website. It plays household noise (washing machines, extractor fans) and it works like a switch for both my children, as soon as they hear it they stop crying and become much more settled - this has been an absolute lifesaver, also might work as a distraction whilst feeding. It is called little sleepy head. We take it everywhere with us.

Hi Helena, I feel so desperately sad reading your message as i have felt that way so many times and I cannot believe the medical profession are still making mums (and dads) feel it's them not coping rather than the fact that are children are in pain! It's not you, you are coping well because you've kept yourself together and that's hard work some days!!

In terms of the aversion - i haven't got much advice - with our eldest we couldn't get any help whilst he was a baby -we finally got referred to a specialist at Great Ormond Street because he wouldn't eat/drink - a specialist there deals with food/drink aversions caused by reflux but this didn't happen till he was about 2 and a half - we spent that long begging for help. Whilst he was a baby i was told to keep his fluids up when he refused feeds by syringing small amounts of water/milk into his mouth every 15mins so he didn't dehydrate.

Once your baby weans - you could ask to be referred to speech therapy with a feeding specialist- It sounds odd but speech therapists deal with swallowing and aversions and can support you. YOur H.V can refer. If the speech therapist is concerned enough they can then refer you on to somewhere like G.O.S.H. YOu may find they won't do this till you are weaning Alexandra though as they may want to see how she copes wiht solid food.

Sadly, my boys were not helped very much by the drugs either and I had to just ride it through. I know that is not great to hear and i hope Alexandras reflux improves quickly but if it doesn't then all i can say is it WILL get better slowly and you will cope somehow. The one consolation is that there are things you can do once they are weaned to help - are you planning on weaning at 6months or sooner?

Is your littlun worse in the day or night or about the same?

Have you tried carrying yoru littlun round in a soft sling? I also used a swinging chair. Have you also tried feeding her upright or feeding lots at night when she's drowsy? I'm sure you've heard all these before.

If you are really worried and if she starts losing weight then you could put more pressure on your consultant to review your case. My eldest did have a barium meal but as a baby it didn't show anythign and they only got to see the reflux when he was 3 - they aren't reliable tests and could suggest it's not there even though it is.

I hope you have a better day tomorrow. Send a message whenever you want - even if u just want to let off steam - god knows i was desperate to do that when all this started for me 3 and a half years ago but there was nothing like this site about then.

good luck,
Suzanne

Ditto what Suzanne says. It is hard beyond words and so frustrating that noone understands. I am finding these sites such a huge relief, just knowing there are other people in the same situation as it feels very lonely otherwise. I am not sure if you are already seeing a consultant privately, but we have paid to go private just to avoid the waiting. I would recommend him if you want a second opionion.

Hope things continue. I know every case is different but really might be worth trying a hypoallergenic formula as difference in my daughter has been amazing.

There is also a US forum - www.momswearingpuke.com which is quite useful.

Take care x

Hi

Just wanted to let you know that apart from Lauren feeding at 1am for 5 mins she has not eatern anything since 2pm yesterday, everytime i try to put her near the breast she screams like never before - as though i am torturing her, it is awful. I too am experiencing this awful aversion now and just don't know what to do.

How is Alexandra, any improvement?
x

I think i am going to have to give in and start expressing and give her a bottle, i really didn't want to stop breastfeeding, but the same happened with my son and i am thinking maybe the bottle will help her before she gets to distraught by feeding altogether - i don't know what is best? Did you breastfeed Alexandra at the beginning?

Hope you can get some help - there are two guys at the Portland who are both excellent - we saw Dr Thomson and my friend saw the other guy so both are recommended. Here are their websites:

http://www.paedgastro.com/

http://www.paediatricgastroenterologist.co.uk/home.htm

We saw him a few weeks ago and the bill was 200 pounds. It is a lot but at least he got us on the drugs she needs and told mde about the dairy free which has rreally helped.

Good luck x

Oh I am so sorry it has got so bad. I hope they will be able to do something for her tmw. I remember someone tellling me their consultant had prescribed something called sucralfate to help with the damage and aid the healing of the reflux in her little boy. I don't know anything about it but might be worth mentioning it to the consultant?

Does she settle at night? I hope you can get some rest and have a more positive day tmw.

Lauren took 2 hours to stop screaming tonight, so I really don't know, but I don't think her immunisations helped yesterday.

Hang in there. Let me know how you get on.
x

Hi Helena,
sounds like you are trying all the recommended things. I wish i could be more help.

In terms of weaning, i was told to wean my eldest son at 4months because he was projectile vomiting constantly and they thought the solids would help a bit. My youngest i was told not to wean till 6months because he has allergies - milk and soya.

I can't advise really - but i think maybe somewhere in the middle might reassure you - maybe 5months or so? My eldest weaned at 4months certainly didn't seem to have any negative effects - no allergies or anything. At times, he couldn't take any liquids because of the vomiting so solids were helpful at those times.

What do you think you'll do?

Suzanne

Hi, sorry to hear poor little Alexandra has lost more weight. Although on the positive side maybe this will help the doctors listen and prompt them to get things sorted for her.

What hospital is she in? I hope they are looking after her and your husband - is he staying there too or does he come home at night. I can't imagine what a difficult time this must be for all the family, I really hope the consultant has some answers for you tmw.

Lauren has been doing OK, although has fed really badly today, but generally she is much more settled and for the past 3 nights we have put her in her car seat at 7pm and with a lot of rocking she goes off to sleep with her dummy which is fantastic as means we have our evenings back. Particularly good timing since my husband is away with work this week and I am on my own!!

Thinking about you - how are you feeling?

take care
x

hi Helena,
I'm really sad to hear you have been having such a nightmare! Have they managed to help Alexandra? Food aversions are horrendously stressful - my son has one and is seen at Great Ormond Street - do you think they may take you on??? They are apparently the top experts.

I'm not surprised you are suffering severe stress, i felt i was crumblign at times when my eldest son was born - i felt frightened most of the time. it's truely awful and you need support, not people judging you. just remember - they have no idea what you are going through and lucky for them!

Hope to hear some good news about Alexandra!

Suzanne