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Life on reflux Rollercoaster
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Started this discussion. Last reply by Emma Jun 4, 2008.

solids taking over milk - what to do?
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Started this discussion. Last reply by Nikkiy Mar 12, 2008.

 

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Ginny Hendricks commented on Michelle's group London
"Are there any Londoners still here struggling with reflux? I see there have been no posts for years!!! My 20-month-old son is still suffering, on Oatly milk, domperidone and omeprazole splus has allergies to cow/soya protein. We live in Archway,…"
Jul 8
Ginny Hendricks joined Michelle's group
Jul 8
Molly joined Michelle's group
Aug 20, 2012
Profile Iconadina belloli and Molly joined Michelle's group
Jun 7, 2011
Catherine Robbins commented on Michelle's group London
"Monday any time or Tues afternoon is best. I work end of week so that's no good until summer holidays. C XXX p.s. I've taken it really slowly with Leon's food but he continues to eat really well and I have got loads of recipes/ideas…"
Jun 6, 2011
gaby commented on Michelle's group London
"I remember how brilliant Leon was with his food when you were here - maybe one day we will manage that too!!!!!!!!!!!! Have gone back to work very part time - which days are good for you as am sure you have gone back too??? Gabyx"
Jun 6, 2011
Catherine Robbins commented on Michelle's group London
"Hi Gaby Just online now so your message popped up...I'd be happy to meet up and chat with you about food/feeding stuff that worked for me with Leon. Let me know what suits you and we'll try and arrange something. Catherine X"
Jun 6, 2011
gaby commented on Michelle's group London
"Hi Catherine Just went through my emails and spotted yours which i hadn't opened  - sorry for appearing rude. Happy to meet up. Claudia is up and down ( you may have seen my recents posts!) but we do do more things now. Eating is tricky…"
Jun 6, 2011

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Michelle's Blog

Weaning off neocate and meds - any advice?

We just had a great holiday but before we left we had a nightmare with Laurens milk. I stupidly forget to get the neocate stocked up and we ended up having to use aptimil for a couple of days after which I decided lets just run with it and see if she could tolerate it. After a week, she was waking up screaming for hours every night. Nothing would help her and she appeared to just have so much wind and she was pooing every hour during the day and having random screaming fits during the day which… Continue

Posted on September 10, 2008 at 19:29 — 4 Comments

Any help for sleep issues

Hi



I really need some help!! My twelve week old daughter is really struggling with her sleep. We have done all the usual - raising the cot, swaddling.



The first two weeks she slept great - went down in her cot at 10pm, fed at 3am straight down in her cot again and then woke at 7:30am (the last few days of this short period she wasn't waking till 4-5am). I really though I had a dream baby!!



Then things started going downhill and she would only sleep being held… Continue

Posted on December 17, 2007 at 9:09 — 11 Comments

My reflux experience

My son, now 2 was born on 1 Nov and after his first week we realised that something was not quite right. He screamed during and after feeds and would not sleep on his own at any point. The constant screaming, refusing to feed and having to hold him all the time really took its toll, and during my 6 weeks checkup with the GP I mentioned it to him and fortunately my son had one of his screaming fits and the doctor called A&E and sent me straight there. They watched me trying to feed and told… Continue

Posted on November 23, 2007 at 21:34 — 8 Comments

Comment Wall (147 comments)

At 22:09 on October 25, 2007, Fern Bailey said…
hi, i've just found you on this website. I had my baby on the 13th October 2007. I am sure my baby is suffering from this condition and the health visitor and midwife want to wait to see what happens with the weight gain ? none as yet from the initial loss. My gp says i have a colicy baby. I cant stand the pain she is in. My gp wont refer me to a peadiatrician, any suggestions? how did you get diagnosed by a health professional?
At 3:31 on October 26, 2007, Nicki said…
My baby is 6 1/2 months now, he is still suffering from silent reflux. We have been to see a private pred'tion as my gp had no idea what was going on and kept saying it was colic...! Health vistors were useless too...! Its 4.30am and i'm up bcos i'm feeling so down. My son has been on med now for 6 wks and all the symtoms have come back (crying out in pain to burp, taking ages to burp, painful farts, refusing his milk ans sometimes solids, not sleeping or bing woken up in pain.....) This whole experiece has put me off having ne more children. My family are all in the midlands, my husband works in the city (call him a weekend dad) so hes home around 7-7.30pm which means i have to cope on my own all day. I can't take him out as hes full of wind ans won't stop crying. I feel trapped and depressed. Guess i should try ans sleep now.....! If ne1 has some advice, pls let me know
At 21:01 on October 26, 2007, Nicki said…
Hi Michelle, i was having the very same thoought..re uping his med dose, will make an app soon to see the ped'tion. I live in Buckhurst Hill, near chigwell and we have been going to Holly House Hospital. God knows how i have coped, the thing is nobody would listen to me, docs kept saying it was colic and as mentioned the health vistors are so useless, all they say is...well nicki some babys just cry.....!

So do u think my son will keep on having to take the meds for a long time, hes on Losec Mups (tablet form) and Domperidom (liquid form).

I don;t know about ur son but mine has real pain when farting and it takes him forever to burp and is usually in pain bcos of it. After he started to take the meds he did make an improvment but its just this week that hes gone down hill again, but he has increased weight (when he started the meds he was around 14lbs, hes now 16lbs).

I feel so helpless too sometimes, this is my first baby and i sometimes wonder was it something i did/ate/behaved in my preg'cy that made this happen. I then really feel for my son as i can see hes in pain.

Well its the wend now so my husband takes over to give me a break : )

Have a good wend and thanks for ur advice.x
At 7:42 on October 27, 2007, Michelle said…
Hi, isn't it a nightmare!! Just had an awful night with the new baby who will only sleep lying on us and screams after every feed and is impossible to settle back! Arghghghhg.

Your sons symptoms sound just the same as our son was. He stopped taking the medicine at 13 months - we did try to wean him off at 9 months, but it didn't work so we waited till he started walking. At six months he was taking 10 mg of Losec Mups in morning and 10 mg in the evening, plus the domperidone and infant gaviscon, but I guess every baby is different and I know it depends on weight. I don't think we changed the dose again then until he stopped taking it.

I went to the doctors thhis morning to get some gaviscon for my baby and he asked what type of gaviscon she needed - I thought well certainly not adult gaviscon - I mean what was he thinking!! They are all useless, it annoys me so much. You shouldn't have to be in private medical care in order to see a paediatrian.

Anyway, lets not get started and I hope things improve with some new meds. From my experience there is absolutely no need for them to be in any pain if they are getting the right meds.

Good luck. I hope you have friends with babies and are able to get out and about as it does make you feel better!
At 16:39 on October 31, 2007, Fern Bailey said…
Hi, thanks 4 your comment. Discharged from hospital yesyerday new problem 2day. The gaviscon has given Rebecca constipation so now screaming 4 another reason. Rang the hospital ward and was given this info. They said 2 try cutting it out but it obviously helps with the acid so i am going to try half the dose. Poor little mite. She has had 2 & a bit weeks of pain, 1 day of respite when i could change a nappy, feed and into the next cycle with no crying anow crying caused by the cure!!!
At 15:39 on November 13, 2007, Sarah said…
Thanks Michelle. I'm not sure I can be completely dairy free but could cut down a lot and see if it helps. Have been trying to take note of what I eat but it's really hard to keep track. Glad your daughter is improving. Lucie is now booked to have a stomach scan next week which should show that she is having reflux (if she will eat the barium meal!). Not sure what happens then but we'll see...
At 20:32 on November 21, 2007, Suzanne A said…
Hi Michelle
we had a similar thing - Ben improved in the day but the nights even now aren't good (he's 14months). Our eldest is 3.5 and is only now slowly improving at night but still has reflux.

Snacking is tough dairy free and i found i was starving (breastfeeding and lack of sleep make u hungrier) all the time. I have a dietician (do you see one?) who recommended eating nuts and cereal bars (some are dairy free). I also found weight watchers biscuits were dairy free, as are some nairn stuff, bourbons and rich tea are dairy free. Cakes wise - the supermarkets do a free from range or some of the own brand apple pies are ok. weight watchers brownies are ok too.

U can bake your own (using Pure sunflower spread) but i struggle to find time. Chocolate wise - After 8 Mints (in the black sachets not the sticks for some reason) and some green & blacks stuff (the orange one is lovely) is dairy free.

I'll try to think of some others...

Ben is still dairy free but i'm hoping he'll slowly become tolerant. I think he'll probably give up breastfeeding in the next few months so i can eat dairy again. He still night-feeds though (he won't eat solids properly) and i find breastfeeding easier at night.

How are you find the reflux issues? it complicates things doesn't it. Have you had much support?

Suzanne
At 21:04 on November 21, 2007, Suzanne A said…
You do lose weight - i lost 2 stone! i ended up losing too much though and had to use some artificial calorie powder stuff on my food. Are you taking calcium tablets? I take 2 a day and my GP prescribes them for me as they are expensive to buy. Will help your bones and get calcium to your littlun.

I am amazed your hubby wants more - my husband has said never again! it is so difficult, isn't it. No one knows what bad reflux is really like. Our eldest had it so bad that they thought he had a more serious condition and operated on him at 2 weeks old - only to discover it was severe reflux and they'd operated needlessly.

I'm like you - the crying is the worst bit. Seeing them so distressed and being helpless is the worst thing i've experienced in my life. My youngest cried constantly for 3 months as he'd developed colitis from the dairy allergy and no doctors would listen to me that something was wrong for that long! My eldest was 9 months before they got him on the right medication. It makes me angry to think of how they ignored me. I long for some sleep - do you get much? Running between 2 kids at night is knackering.

If i can help with any other info on the dairy thing - just ask - i get lots of my info from the dietician.

Take care,
Suzanne
At 21:24 on November 21, 2007, Michelle said…
Wow 2 stone!!! I bought some calcium tablets but will get a prescription next time am at GPs as may as well get them paid for!

I can't believe your poor son went through an op at that age for no reason - how awful for you. Apart from the specialists in reflux, I have lost all faith in the medical profession. In fact apart from my husband and my mum, no-one else seems to understand the condition. I still find myself questioning whether she is hungry, am I feeding her enough, am I fussing over her too much, all because of family and friends who put these doubts into my mind. Sometimes, I am scared to go out cause I can't bare peoples comments.

Anyway, we will get there, and it is worth it.

My consultant recommended a dietician, maybe I need to see them - more money!!!
At 20:14 on November 22, 2007, Emma said…
Hi Michelle I saw that you were thinking of getting a wedge pillow, just wanted to say I couldn't get my son into a big cot untill I bought my wedge, he soon settled much better with it. I also put it under his play gym and mat which mean't he would stay under it a bit longer before screaming.

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