Author Topic: First post so lost & confused! Reflux, Intolerance or Unhappy Baby? Long story!  (Read 3021 times)

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Offline dinkiedoo

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19 weeks ago (today) all our dreams came true our baby girl after 2 boys was born. My hubby was reluctant to have anymore kiddos as our boys are 13 & 9 and he felt we were fine as we were! The first few days were great, with baby feeding on Aptimal 1 every couple of hours and seemed to be slotting into a routine.Other than the hiccups at every feed we'd cracked it!

After a day or two she started to become fussy and I noticed that her tongue started to show signs of thrush.. We treated her with Nystatin however with being so fussy and barely getting much milk into her this was proving difficult as she would cough & gag and bring the bottle back up!  As the days progressed she started screaming nigh on 20 hours a day.. We changed her bottles to Dr Browns, made sure we were winding properly, fed her upright and kept her upright for half an hour after her feed also tried dentinox in her bottle, after her bottle, infacol before a feed (made her worse), tilted her moses basket to see if that helped. Everytime she fell asleep and we put her down she would wake up within minutes and scream the place down. She barely slept and neither did we. We contacted the doc who suggested Gaviscon didn't help, back in touch with GP prescription for Colief tried that no help!  Back to GP he suggested the hospital take a look we spent the evening there she was seen by a junior doctor who diagnosed reflux. Ranitidine prescribed and to reintroduce gaviscon into her bottles again. So off we went hoping this would work.

After a day or so I would say she was worse so we stopped it. I got back in touch with GP who prescribed Nutramigen weaned onto her that, made her worse seems her stomach was cramping and the crying was something we had never experienced before. I was at the end of my tether and took her to a Cranial Oestopath and Homeopath in the hope they could help. After 3 session and no improvement the Oestopath advised that if I wasn't seeing an improvement with her to stop coming as it obviously wasn't what I was looking for. Homeopath gave her Camomilla and that seemed to settle her tummy when she was really distressed but not for very long.

The thrush continued to be a problem so the GP prescribed Daktarin we completed the course cleared the thrush and blow me did it not reappear again!  All the while she's still screaming, spitting up, sneezing, arching, choking, gagging, really wet hiccups after every feed and sometimes between feeds, really struggling to bring her wind up, legs going ten to the dozen, thrashing on her bottle & refusing to be put down. We decided there and then if the meds weren't going to work we would try her on the Enfamil AR milk, that I have to say made a wee bit of a difference she seemed to go from all day to crying at feeds, after a feed and from 2pm-9pm (just in time for the boys coming home from school and up to bedtime). After a week or so we decided to stop the AR as she still seemed to have a sore tummy and it made her horrendously constipated & to be honest not a huge improvement with the constipation still really bothering her.

Another trip to the GP, he decided he couldn't help any further and advised he could get in touch with the hospital Paed and see what he advised. Without even seeing Isla he prescribed Omeprazole MUPS and said that he would see her at an outpatient appointment! No advise on how to give an 8 week old baby a tablet so decided not to go ahead in the hope that soon she would turn a corner and the screaming would stop. Meanwhile I weaned her from the Enfamil onto the Cow & Gate Comfort milk as I had read that is easily broken down and kinder to the tummy again the first day or so saw an improvement however she started spitting up after feeds again and over the course of a few days the crying resumed again, thrashing her legs, screaming everytime I tried to put her in her car seat she also started sneezing and had lots of congestion in her nose not to mention the gas and explosive green pea soup nappies. I phoned cow & gate helpline who advised if she was to continue being fussy & having the nappies she may benefit from Cow & Gate Pepti. I phoned the HV who put me in touch with a dietician who immediately prescribed Neocate. I''d been weaning her onto the Neocate & happended to have the paed doc appt who told me to stop the Neocate as she wasn't intolerant and to put her back on the cow & gate comfort milk.

Since the appt I've also weaned her onto Losec mups through giving them in a pear puree every morning (10mg), her spitting up has stopped and isn't near as bad as it was however she's still squirming and a nightmare to feed with no structure to our day or night as she barely sleeps! She still on manages between 4 & 5 oz per feed at a push 6 oz and still seems very windy even though she's on the Dr Brown's bottles.

 I'm so lost and confused as to what's wrong with her I can't even think straight. I feel so low at the minute I can't begin to tell you.I'm losing all my confidence and right now my boys are suffering and spend most of the time in there rooms as Isla takes up all of our time. Please if anyone can offer me any insight as to what may be wrong with her I would really appreciate. I know all of the above is not normal or is I don't know anymore. I'm sure there's lots I haven't included she's kicking off again so I'll be back soon.
« Last Edit: December 06, 2010, 14:22:06 pm by dinkiedoo »

Offline Rachel_Momto3boys

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I am so sorry to hear your struggles with your beautiful LO!  What really stands out to me is her terrible colic symptoms and green poops.  My son is 4 months old and has food alergies/intolerances... he was having green mucuosy poops, sometimes with visible blood, terrible gas and congestion, and ezcema.  I've had to cut out dairy/sory/egg/nuts/wheat from my diet (he's bf) and he is now better, no more blood, no more ezcema, green stools or congestion. 
Why does your ped think your LO does NOT have an intolerance?  Everything you've described points to it!!  How long did you try her on Neocate???  I would definitely talk to the doctor about putting your baby back on a hypoalergenic/elemental formula.  They are the best kind of formula for babies with food intolerances because it is made up of amino-acids, the protiens are completely broken down.  I will warn you though, you may not see an immediate result because often it takes 2 wks or more for the old formula to leave her system completely. 

I hope that helps, hang in there!!!  Give us an update when you can.
Rachel
Mom to 3 boys
Augustboy02 - Sensational Sensory Kid
Decemberboy04 - former reflux baby
Augustboy10 - MSPI Baby - EBF w/elimination diet

Offline Mummykim

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Hi,

Im sorry to hear the troubles you have been having and I'm hoping that they may have improved? I had a similar situation to yours with my son suffering from the symptoms you described. He has however been diagnosed with a 'cows milk protein intolerance' following a stool sample that found he wasn't digesting the sugers in his milk. I was advised to start him on Nutramigen and although I did see an improvement he was by no means fully happy, it is only now after being fed this milk for about three weeks I am seeing a huge improvement. I have also changed to DR Brown bottles which again seemed to have helped. He still has lots of wind, wet hiccups, green pea soup nappies and some tummy discomfort but is much better than he was. The worst thing about it for me was trying to give things time to see if they worked as I definately just wanted my son to be out of discomfort - We too tried reflux meds: renitadine, gaviscon and donperidon (although I always suspected it wasn't reflux), he also had pyloric stenosis which was operated on and then was hospitalised with bronchiolitus for a week! So we spent lots of time in hospital trying different things to help him.

I also was going out of my mind and wanted him to be happy, and the main thing I can say was that I had to accept that I would have to give his tummy time to adjust to the new milk/operation/illnesses so I cut out meds that I didnt believe he needed ( the reflux) and tried to give the nutramigen time to settle, along with using infacol and DR Brown bottles. It has been three weeks now and like I said before I have seen a huge improvement. My main observation about your situation is how many different meds and milks your lo has been tried on and I wonder whether she needs a longer period of time to adjust to one of them? I would agree with the earlier post and say that her symptoms suggest milk intollerance and I would be asking the doctor to reassess this, and maybe give the hypoallergenic milk another try for a longer period of time? But also it may be worth discussing weaning early with your doctor? especial;ly if the milk is really upsetting her tummy.

Anyway I hope that you manage to get some help with this as I know it can be really frustrating trying to find out what is upsetting your baby, you sound like you are doing a fantastic job and really fighting to find out what is wrong. Keep going back to the doctors until you have something sorted  :)

Offline Alou78

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Hello - I just wanted to send a message to you after reading your story. I feel so sorry for you and your LO. My DD has reflux and has had a difficult time of it so I can understand where you are coming from. It is heartbreaking to see them so distressed and it does bring your confidence levels down too. As a first time mom, I thought I was doing everything wrong!

I would agree with the previous posts. It takes time for your LO's body to get used to new milks and medications and for old milks to pass through their system. We found a good week or so. DD is now on Pepti Junior which is supposed to be very gentle on a baby's stomach. She also has excema. She does still spit up quite a lot though. She is also on Ranitidine. Gaviscon was a waste of time for our DD. It made her really constipated and in terrible discomfort.

Our health visitor said that we may have to wean DD earlier too if things don't improve.

Hang in there! I hope things start to settle for you all and especially your LO.  :)

Offline babybarr

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How are things now dinkiedoo? 

I would perhaps stick with a dairy free formula for at least a week and see what happens.  If your baby is *still* not right then push for further help.

(((((((hugs)))))))) to you.
LAURA xx




Offline slparks

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Hi,

Hugs to you.  I went through this with my DS.  He was very fussy, gassy etc. right from birth and DH and I felt like something was wrong with his tummy, however the Dr. kept telling us he was fine.  It got worse, and he was just like your DD.  Hiccups, lots of wind, spitting up, not sleeping a bit.  Finally, one day I had enough.  He was having projectile vomiting, hadn't slept in like 8 hours (at all) and I couldn't get him to take a feed.  I went to the Dr. office and saw a different Dr. than normal and she got it right.  I had spoken to 4 different health professionals for a period of 6 weeks before I finally got the diagnosis that DS was intolerant to lactose.  We had been told he had reflux, colic and also were told "it's normal for babies to fuss and spit up and not sleep".  We switched formulas to a cow's milk based formula that has no lactose.  I'm in Canada, so you might not have it there......it's Similac Sensitive - Lactose Free.  Anyway, we had tried a hypoallergenic formula and a soy formula and both of them made the spitting up worse and my DS HATED the taste of them.  So, we finally had success with the cows milk lactose free stuff.  He is like a different baby now that we have figured out what his problem was.  I hope that you get some relief for your DD.  Everything you are saying makes me believe that it's an intolerance/allergy.  If it was reflux, I think the meds that you tried and the lifestyle changes (sitting her up to feed, tilting her crib etc) would have given her some relief.

Good luck, I truly hope that you and DD get some reflief soon.