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Original poster

Need help desperately. Looking for a pediatric feeding clinic in the UK

35 replies

GBiddulph · 16/08/2019 09:04

Hello, I am from the Netherlands and I have a 15 month old toddler who refuses to eat anything. Nothing at all. She was on breast milk until two months ago and now my supply has died, she is basically starving. Losing weight fast and getting sick all the time.
I saw doctors here but the healthcare is so bad that not many tests have been done. They just told me it is behavioral and there is no treatment plan or suggestions from the doctors.
Me and hubby decided to travel to the UK (preferably London) and find a good clinic to understand the cause and hopefully get a good treatment

Does anybody have any recommended doctors/ clinics?

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CherryPavlova · 16/08/2019 09:11

Ask to be referred to a paediatrician. There are few specialist private feeding clinics, if any. Chances are it is behavioural but you need more reassurance and guidance on dealing with that.
Your GP should refer to paediatrics. There are private paediatricians but not many as paediatrics is usually very good on NHS. They won’t be specialist paediatricians only working in infant feeding - but that probably isn’t what you need; sounds like you want holistic review.

CherryPavlova · 16/08/2019 09:13

Sorry just seen you’re still not UK based. Look to go to one of the major children’s hospitals Great Ormandy Street or Evelina.

CherryPavlova · 16/08/2019 09:13

Ormand not Ormandy!

Original poster
GBiddulph · 16/08/2019 09:29

thank you so much!!!

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Hohofortherobbers · 17/08/2019 19:58

What does she eat? If your supply stopped 2 months ago, what has she been eating?

Original poster
GBiddulph · 17/08/2019 22:35

formula and fruit only

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Hohofortherobbers · 17/08/2019 22:53

Can you start right back at the beginning and mix some baby porridge with formula and a fruit puree,

BunnyRuddongton · 18/08/2019 10:53

I can totally understand your worries. Can I ask if she is actually losing weight or is she just not gaining weight in the way you'd expect?

Is she following her height and weight centiles from birth?

I've had a very fussy DD and it started about this age so you have my upmost sympathy and I found lots of helpful advice on here.

Can you tell us what a normal day is like in terms of food?

Do you offer her a bottle straightaway when she wakes? Do you all eat together and offer her what you're eating?

What happens if she refuses food? Do you ignore or offer her something else?

BunnyRuddongton · 18/08/2019 11:05

This book is supposed to be very good too, although it was sadly out of print when my DD was that age.

Can I ask too if anyone else looks after her without you being there? Family, father, friends, childcare? If so, will she eat for them?

Original poster
GBiddulph · 18/08/2019 20:38

I try that too but she hates it even more. She has blueberries and cheerios here and there but totally hates to be fed by anybody else

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Original poster
GBiddulph · 18/08/2019 20:42

thank you so much. It has been a long journey for us. She loved solids when we started at 5 months and around 7 months she started rejecting. Since then it has been really bad. She doesn’t accept food for 2 months and eats so much for a week and then 2-3 months of no food again.. I can’t find the reason. I’ve tried everything , every food in every form, leave her alone, let her copy us, stop breastfeeding- everything. nothing works. She loses weight when I don’t force her to eat- which I hate doing but sometimes I do by distracting her and feeding her. When I do that she gains a bit. Lately I’ve decided not to force at all and leave it to her but she won’t eat anything. So she is losing weight.. I keep offering but mostly she doesn’t take anything so right after the meal she gets a bottle. She only accepts blueberries and tangerine but she doesn’t eat much of that either. If she is just a picky eater I wonder if it can start that early at 7 months. i have no clue where it went wrong

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Original poster
GBiddulph · 18/08/2019 20:43

also, she goes to daycare but none of the teachers managed to feed her. Very rarely she eats a bread by herself

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BunnyRuddongton · 18/08/2019 20:55

If she’s actually losing weight, she needs urgent medical attention. There’s a big difference not gaining and losing weight.

Has she had her mouth, ears throat checked? Have you ever tried giving her a dose of Ibruprofen about an hour before the meal? If she’s not feeling well it might encourage her to eat.

loveautum · 18/08/2019 20:59

Hi Op,

I can't recommend anyone in London beyond what's been recommended on this thread, but agree with PP that you need a holistic review.

Has anyone checked her mouth and teeth? Is she experiencing any pain with her teeth that's causes her not to eat? With being only 15 months, she's not able to speak or tell you of pain hence wondering about teeth. It seems you've done everything you can and need some professional help or I think it's called feeding therapy or some type of therapy around food.

As a PP has said it might be they recommend taking it back to soft foods when first weaned almost starting again with simple plain foods.

The only other thing is does she suffer with any tummy issues as well I wonder and doesn't like eating if it makes her tummy feel sore, again would need further investigation. Did she have bad colic or reflux when she was a baby?

How well is she following her percentile line how many lines has she dropped?

Original poster
GBiddulph · 18/08/2019 21:11

I know, we got the ears nose throat and mouth checked. She had a tongue tie and it has been snipped but nothing changed. Actually got worse after that.

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Original poster
GBiddulph · 18/08/2019 21:15

she was 79 percentile and now around 50. still good but slowly going down. it could be teething now since her molars have been coming for a month but how about the other 7 months she hated food.. It could very well be tummy pain but I don’t know how they can diagnose it. That’s why I want to get an opinion in the UK

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loveautum · 18/08/2019 21:20

On the tummy pain have you ruled out any food groups she could be allergic too I had her tested for any food allergies, but i think the testing can be unreliable when still young.

loveautum · 18/08/2019 21:30

Just looking on the website and a PP mentioned this hospital further up the tread as well.

Evelina London Children's Hospital

Westminster Bridge Rd, Lambeth, London SE1 7EH
020 7188 7188

www.evelinalondon.nhs.uk

BunnyRuddongton · 18/08/2019 22:17

If her molars are coming through, does she have any pain relief like a teething gel or paracetamol?

Have you had the tongue tie reassessed? Did you receive any support with the tongue tie once it had been snipped?

Original poster
GBiddulph · 19/08/2019 07:55

yes we did testing she’s got no allergies that we know of

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Original poster
GBiddulph · 19/08/2019 07:57

paracetamol doesn’t help I tried. not sure if it’s due to molars really. We haven’t had a check up after the tongue tie release it might have reattached, it could be. Still my gut feeling says something else is the cause

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BumnyRuddongton · 19/08/2019 08:28

Could you try talking is through your day with her? I know it's really stressful, but you you have any set times when you offer the formula and food? What happens when she first wakes up?

Original poster
GBiddulph · 19/08/2019 09:49

yes we have a schedule. I wasn’t offering any formula until she started losing weight. We start the day at 7 and at 7.30 I try breakfast, at night she still gets boob once but that is just for comfort. at 11 I give her fruit which sha eats a bit of, then 12.30 lunch time which is usually a diseaster. Then I give a bottle qt 2pm. 4pm again snacks rice crackers and stuff- she bites a little. 6.30 dinner which is the hardest of all. Then bedtime bottle (150ml)

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JiltedJohnsJulie · 19/08/2019 21:51

Thanks for your schedule, that's really helpful. Do you mind if I ask you a couple of more questions?

Can I ask what formula you are offering? I'm just asking as the formulas with added iron can often suppress appetite.

Original poster
GBiddulph · 20/08/2019 09:26

thanks a lot, we are using aptamil and I just checked no added iron.

Today we had a check up in the dutch hospital and she's losing weight fast and her height hasn't grown in months which suggests growth is stopping.However they offered no help!
Found a private clinic in London center so I guess we will be flying to the UK to get help.
I'm so worried that I'm ready to spend all the money I have on this. In Holland we have no private system

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