feeding clinic great ormand street

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Permalink Reply by Helena on February 4, 2010 at 17:26

Hi Ann

My daughter was referred to the Feeding Disorders Team at GOSH.
Like your little one, she suffered from acid reflux and once that seemed to have settled, she practically stopped eating.
We were seen by the specialist nurse first and we are in the process of having tests done to rule out any underlying organic problem before they decide to treat it as a purely psycological problem.
The nurse we are dealing with is Una McCrann and all I can say is that she has been wonderful and incredibly helpful and professional. We are really happy with the way they're dealing with things, hopefully your experience won'y be any different.
Hope things will improve very soon.
Helena x

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Permalink Reply by ann taylor on February 4, 2010 at 19:02

thats it so nice of you to respond, thank you, my little one eats then stops then eats for other people, but when i say eat i man nibbles. i wll let you know how we get on, by thr way, my eldest is called alexandra, take are ann x

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Permalink Reply by ann taylor on February 6, 2010 at 14:27

hi there helena, we have had out appointment it is with una, too will let you knoe how we get on xxx

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Permalink Reply by Helena on February 6, 2010 at 16:23

Hi Ann

That's great news! When's your appointment?
She's been our saving grace. She was the first health professional to take Alex's problem seriously and if it wasn't for her, we wouldn't have ever got to the bottom of things. There's still a long windy road ahead of us but, boy, what a difference it makes to know you're in good hands!
Please keep me posted!
H xx

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Permalink Reply by ann taylor on February 6, 2010 at 20:28

thank you her appointment. is 25 march, i am estatic as she is in her no eating phase she must weigh about 16lb 12 oz she was 16ib 8 oz last time she was weighed. she is 18 months old so she is a worry, you mean so much to have you respond, as you feel so lonely and people think your mad, when you say, oh yeah she eats then she doenst then she does bizzare things with food, you take care ann taylor

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Permalink Reply by Karen Hickson on February 9, 2010 at 13:25

Hi there,

We have been referred to the feeding clinic at Royal London but our appointment prob wont be until end of April, may time. Would be really eally interested to know how you get on. Keewp us updated!!

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Permalink Reply by ann taylor on February 12, 2010 at 12:50

oh yes i will, could you let me know why you have been referrred as interest abi has been in hopitl her weight now is 16il11 she is now 19 months old, what is your lttle one story, but i will gladly keep you posted, thanks


ann

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Permalink Reply by Karen Hickson on February 12, 2010 at 14:07

J started refusing to drink milk at 4months old. By 6 months we were so worried about how little he took we had weaned him onto puree fruit n veg, but he started puking these up after the last couple of spoons. I know at this stage I def pushed him too much to eat and this didn't help with the aversion.
FINALLY, after going private, silent reflux was diagnosed, and after a few weeks of trialling was put put on 10mg MUPS twice a day. At this point I started getting help from a local feeding team.
We got him to the stage where he didn't scream when he went in high chair, would take milk in the morning, no breakfast, maybe 3rd stage 1 jar n maybe small yogert for lunch n dinner n some milk before bed. He was always offered finger foods at the same time n nearly always put them in his mouth n have a nibble, although rarely ate much. The food kinda acted as a diversion to us feeding him really.
Got to the stage where he'd only eat for as long as he was diverted with the finger foods n was told to have a 'special' basket of toys to use. This worked and as long as he was playing with them he'd eat.
J's reflux now only bothers him if he is ill or teething. And while all this was going on neither illness or teeth occurred and although we had to use methods to get him to eat, he was doing fairly well, always sitting just aboe the 9th.
So by Oct it was decided that as he was perfectly capable of eating finger foods he'd have to learn to sit at the table for all meals, be offered finger foods and if he didn't eat to lump it!! We went through over a week of tantrums cos he just wanted his toys at the table. At this point he decided he wouldn't let us feed him any more and would only eat if he had a few bites himself. This 'routine' went on for 3 months. During which time he had a bad virus and was hospitalised with dehydration and low glucose. A cold n cough which caused ear infection, and then just before xmas food poisening/tummy bug. Each time he was ill he'd eat NADA for days n then it would take him a week or two to go back to eating the tiny few bites he would have when he was ill.
After the tummy bug- bad sickness (def not reflux!), he just shut down n wouldn't even eat the fail safe foods like wotsits so we were back to the Gastro Pead. He said to get what down him what we could however we could and referred us to royal london feeding clinic. Unfortunatly we can't go there privately hence waitng til April- 4months!!!
About this time his third cold n cough cleared up n he had three really good weeks of eating for Jamie. He was actualy asking for food, asking for more, and feeding himself at the table. Then he came down with a cough again that has just got worse n worse and ONCE AGAIN, reflux is playing up!!!!
The only way he'll eat at the moment is if we feed him in front of the TV or sit at the table with colouring books, toys etc n he has gone right backwards as if we don't give him what he wants to play with he kicks off!!! Still, it's either give him what he wants or he doesn't eat a thing. Even when we use these techniques it takes him an AGE to eat. Mealtimes are 45-60mins n might consist of half a small tin of baked beans and half a sausage!!
He will eat things if I give them to him in the buggy, he had 1/4 sausage roll out today which is good for J but it took him nearly half an hour. It doesn't bother me at the moment as his weaight after dropping to 2nd is nearly back to 9th percentile, but I'm having a baby in 6 weeks time and it takes as long to get J to eat anything as it will do a newborn!!
It seems to me that when he is well he is a lot better. But when he is ill we have to use methods to get him to eat that he gets used to n then when he's well again it's too late n he's in bad habits. Trouble is they are ill so often at this time of year. Forgot to mention when J is ill he starts puking again which is what puts him of eating.
This the royal will do some tests into extent of damage caused by reflux and I really hope into intolerances as well. He practically lives on dairy but maybe that's the problem? Then again if it was he wouldn't have good weeks would he? He seems to almost consistantly have a chesty cough, could an intolerance cause that?
PS Jamie is also 19 months but his weigh is 22lb so just on 9th line. I'm surprised they haven't suggested tube feeding. Is she well in every other way apart from her weight?

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Permalink Reply by ann taylor on February 12, 2010 at 19:46

well abi story os this when she was born, she had some milk, then did not feed for 12 hours she was sick all the time, when the time she came out she gagged on the teat and the dummy, then she was diagnosed with reflux, the usual puking, scraming etc meds given, troble is she hates dairy i am so worried she is so tiny, we really have no formual for feeding her as she will only eat when she wants to reradless, my neighbour feeds her twice a week and then she goes to creche where is much better. she is so tine but they will not tube feed her despite my very desperate tearful attemps, she laughs and plays everytime i take her tipical, she stoors food at times in the side of her mouth she also, chews it then after a while spits it out, she covers her mouth shakes her head. i do not know what the plan is at great ormand street but i will def keep you posted as it is great to share, she too like your soon, gets worse when shes ill, then she stops eating and takes ages to get her to eat again, in her bottle of juice i put glucose powder, polycal powder vitamin drop minidex honey and then coridal and water aything to get some stuff in her. please keep in touch so glad for the great pot mine is sketchy have spent the last two days in hospital with her so am quite anxious at the moment, but really greatfeull for your post what would we do without this post, let me know if you would like my email and moble number we can keep in touch take care
ann

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