Information needed to collate statistics for my book due to be published in Jan 2010

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Permalink Reply by kelly on June 19, 2009 at 20:04

hi i would love to help you, a bit of back ground, abbie is 23 months and has a rare chromaosme disorder called trisomy 9p syndrome, quite a lot of children with her condtion suffer with reflux,
i will start by answering your ?

How long did it take and who diagnosed your baby's reflux? abbie was 4 months old, she was being sick alot did not fed well from birth had a ng tube till she was 3 weeks old, it was a neonatal nurse who thoguht she might have reflux,
Does your baby spit up, vomit or have silent reflux? abbie vomits and soitts up after every fed
Did your baby have a satisfactory weight gain or was it almost too much or maybe too slow?slow but she has never been a good feeder
Did you breast feed?no
If so for how long and how easy or difficult did you find it?
Was your baby better on breast milk or was there improvement when switching to formula?
Which formulas have you tried?sma, then nutraigen, neo cate, nutrmi pepti, then back to nutramigen
What worked best and what didn't and what formula did you end up on?
Does your baby have a lactose or cow's milk protein intolerance or even allergy?abbie is allergic to dairy, tomatos, strawberrys, eggs and fish, poss soya
What has been your path of medication steps?domperdone, ranitadine, losec, thick and easy, gaviscon,
What did you start on, use together and what combination of meds worked [or didn't!] for your baby.no medication makes any diffrence for abbie
Does your baby sleep?no she has not slept more than 3 hour since she was born
What position does your baby sleep in?now on her side but up till recentlly on her back proped up
Was the introduction of solids easy or difficult?difficult abbie chokes alot,

some more info for you,
abbie is fed all fuilds via a gastrostomy because she aspartes and she cant suck she does not know how to, she vomits on thickend fuilds and refuses to take enough, she struggles with solid food if sahe is tried and is nearlly 2 but is still on 7 mon food,
due to abbie trisomy 9p she has poor muscle tone so her stomch muscles are not good,
abbie is having the fundopication op in 6-8 weeks due to non of the medication working, abbie has had a ph study which shoed she refluxed 197 times in 20 hour, and she has had a baruim meal that showed sever reflux while on the meds,
abbie also has learning difficulties she is like a 6-7 month old baby and is only just starting to sit,
if you want anymore info i am happy to help

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Permalink Reply by Carolyn Brathwiate on June 19, 2009 at 23:23

Hi,
I will email you my story tomorrow too
C

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Permalink Reply by Victoria on June 20, 2009 at 20:47

How long did it take and who diagnosed your baby's reflux? 3 weeks old and my GP
Does your baby spit up, vomit or have silent reflux? Silent
Did your baby have a satisfactory weight gain or was it almost too much or maybe too slow? Satisfactory
Did you breast feed? Yes well expressed
If so for how long and how easy or difficult did you find it? I expressed for 8 weeks could not actually feed as she was born with tongue tie and by the time it was cut she was used to bottled but I expressed still for 8 weeks and then a little bit for 12 weeks as I introduced formula
Was your baby better on breast milk or was there improvement when switching to formula? Worse on formula
Which formulas have you tried? Aptimal, SMA LF and Pepti Junior
What worked best and what didn't and what formula did you end up on? Aptimal for both - worked best when thickened with Carobel
Does your baby have a lactose or cow's milk protein intolerance or even allergy? No
What has been your path of medication steps? Started on Ranitidine at 3 weeks, Domperdion added at 4 weeks, Gaviscon added at 10 weeks, Carobel added at 15 weeks
What did you start on, use together and what combination of meds worked [or didn't!] for your baby Nothing has worked 100% but biggest improvement was ranitidine and Carobel - Domperidon does not seem to do anything for her
Does your baby sleep? Yes quite well
What position does your baby sleep in? On back but only if swaddled
Was the introduction of solids easy or difficult? Introduced very early at 14 weeks on recommendation of paed - very easy - she loves them and would prefer them to milk - upped her milk intake too as solids were controlling acid - gave 2-3oz milk then solids then offered more milk


Hope this helps

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Permalink Reply by Alison Scott-Wright on June 20, 2009 at 21:10

Thanks so much to all of you that have replied, I have had about 20 replies so far and it really is such a help with the book. I can actually refer to 'my survey' when stating facts about reflux.
I haven't had time to read and reply to everyone yet, but I do promise I will get back to everyone personally.
Thanks again, Alison

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Permalink Reply by k smith on June 21, 2009 at 21:46

How long did it take and who diagnosed your baby's reflux?
I knew instantly after about a month but took 6 months and a trip to A&E to get ANYONE to listen to me

Does your baby spit up, vomit or have silent reflux?
Vomit...........all day

Did your baby have a satisfactory weight gain or was it almost too much or maybe too slow?
Good weight gain, hence why no-one would listen

Did you breast feed?
No, baby was 8 weeks early and couldn't latch

If so for how long and how easy or difficult did you find it?
-
Was your baby better on breast milk or was there improvement when switching to formula?
-
Which formulas have you tried?
SMA Gold

What worked best and what didn't and what formula did you end up on?
-

Does your baby have a lactose or cow's milk protein intolerance or even allergy?
Never been tested

What has been your path of medication steps?
Infant Gaviscon., Ranititdine, Carobel

What did you start on, use together and what combination of meds worked [or didn't!] for your baby.
Infant Gaviscon didnt make any difference. Ranitidine used now to control acid pain and Carobel in his milk to thicken it. Huge improvement!

Does your baby sleep?
Yes, Im lucky he always has.

What position does your baby sleep in?
On his back

Was the introduction of solids easy or difficult?
Easy, although Puree food would bounce back up but now we are onto mashed much better.



Hope this helps, any more info just ask.

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Permalink Reply by Sam on June 25, 2009 at 19:49

Hi my little one is nearly 8 months old now, was born 11 days early 8lbs 11ozs

I have known from about month old that he was suffering reflux from research on net, only just had paed appointment last week! Was getting sick of being told he was just a sicky baby by GP!

He spits up on bad days and suffers silent on good days

He has excessive weight gain, jumped two centiles since birth, hence the reason Gp didn't believe there was a problem. If i hear 'he doesn't look like he has a problem' i think i'll scream

Did not breastfeed do to problems feeding with first child

Started on Hipp organic but changed to cow and gate complete due to change in formulation and not mixing well with water. moved to cow and gate complete 2 then put onto infasoy by doc which then triggered soya intolerance. Was eventually referred to dietition who changed him to nutramigen and now neocate

Has problems with dairy but not been tested so unsure if allergy or intolerance

GP tried him on gaviscon to stop me going back, but wouldn't listened when told it wasn't working, was told to keep using. stopped it a few weeks later as no effect. reffered to paed in April after seeing yet another GP. Was started on ranitidine last week and carobel so on going to see if works.

Good sleeper after 11pm (once all food digested) ok during day now. Was terrible during day when younger so exhausted at night. Suffers bad excema so flare up disrupt sleep at night.

Sleeps raised in pram during day and on front or side raised at night.

Started solids at 14 weeks and loves his food, he cannot take any fruit and a few veg as aggrivates his reflux, this includes any juice and won't drink water. He is dairy and soya free and gluten has shown breathing and skin problems so now gluten free.

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Permalink Reply by clair ann tear on June 25, 2009 at 21:31

Hi Alison if my babies story is any help here it goes,
Other than your story, I am specifically interested in collating some facts;

How long did it take and who diagnosed your baby's reflux? after Hospital admission the GP diagnoesd a few days later and ,only after me suggesting that is what I thought it was so about a week although was vomitting since he was transferred to local hospital he was 6 weeks early
Does your baby spit up, vomit or have silent reflux? Spits and preojects
Did your baby have a satisfactory weight gain or was it almost too much or maybe too slow? 4pound 15oz at birth now gains excessively
Did you breast feed? born 100 miles from our home and the twins were seperated hence BF from day 5 but was already spitting on the formula given in Hospital
If so for how long and how easy or difficult did you find it? BF for around 4 months got very hard towards the end yet still BF his twin
Was your baby better on breast milk or was there improvement when switching to formula? awful on breast milk kept nothing down, formula seemed a little better then around week into that he was worse
Which formulas have you tried? Aptamil, C&G now Nutramigen
What worked best and what didn't and what formula did you end up on? no formula worked and still projecting on Nutramigen
Does your baby have a lactose or cow's milk protein intolerance or even allergy? think milk allergy although not been tested
What has been your path of medication steps? Gaviscon,Ranitidine,Domperidone,Carobel
What did you start on, use together and what combination of meds worked [or didn't!] for your baby. Started on Gavison and Ranitidine showed little improvement, same with Domperidone and Carobel but then back to square one so all stopped other than Gavison
Does your baby sleep? very restless, naps daytimes are short! goes down at 7pm awake by 4 for a feed
What position does your baby sleep in? raised and on his back
Was the introduction of solids easy or difficult? found this ok likes his food but very slow eater

I know there are so many questions.....there are hundreds more I would love to ask and I could write forever about reflux!
My work is endorsed and I am often referred to people by Dr Muftah Eltumi who is a paediatric gastroenterologist working out of the Portland Hospital in London.
My email adress is alisonsw@btinternet.com if any of you do find the time to drop me a line.
Thanks so much, Alison.

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Permalink Reply by ann taylor on June 30, 2009 at 20:44

Two months to diagnose
spit and vomit
very poor weight gain.
did not breast feed
all formulas and now infratrini
still debating on the lactose and dairy intolorant
gaviscon, ranitadine, then omperazole domperidone
omperoazole work not ranitadine it made her worse
baby does sleep at night not in day
at an angle she sleeps
difficuly for solids, food aversion very diffiuly to feed nearly one will not eat off a spoon


thank you ann taylor my daughtyer is one and is 161/2lbs at one point she would not eat and drank only 8 ozs in 24 hours 1 wet nappy in 24 hours it took three weeks and treats for her to be admitted to hospital, just kept offering feeding tips and she had develpoed sandifers synfrome at the time, please ensure that you state that parents with acid relflux babies are experts in feeding and when they say their is a problem they should be listened too, it is such a terrible condition and the frustration you get especially from jniour and nusrsing staff who see it as a feeding and educational issue, good luck

ann

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Permalink Reply by cara on July 8, 2009 at 22:35

Hi Alison...do you still need replies to this? If so, I'll email you over my 2 children's experiences of reflux. Good luck with the research - and as a mum who struggles to get information...thank you!
Cara

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