Late weaning.

Fi · Joined: 15 Dec 2007 Posts: 16 Location: London

Hi,

My daughter Alice had very severe silent reflux resulting in 3 cardio respiratory arrests due to aspiration. She was completely nil by mouth for 8 months and was fed via jejunostomy tube (her meds were put down this aswell as she would even aspirate on these).

Fortunately she grew out of this by the age of 6 months, but was diagnosed with tracheobronchomalacia (floppy windpipe) and this was thought to be affecting not only her breathing, but her feeding also.

This was corrected in March last year by an aortapexy operation and she was then started on solids and about a month later we were able to introduce oral fluids. she is now 16 months and doing very well at home. She was initially and understandably slow to start with solids and bottles, but had since done really well and were near to the removal of the jej tube (she is still fed for 5 hours at 60 mls an hour overnight).

She now refuses most things and will no longer take purees, but will not take lumpy food either. She is having finger foods, but not much and I'm beginning to wonder if this is a huge step back and we will have to increase the jej feeds once again. I also find it very difficult to decifer what is "normal" toddler behaviour. She does tend to lose weight very quickly and I'm frightened that if she carries on like this we will be back to square one.

Does anybody have any advice on feeding toddlers?!! I know that the later they are introduced to lumps, the less likely they are to accept them. She is also has a milk protein allergy to makes things harder!

Thanks,

Fixxx

Fi · Joined: 15 Dec 2007 Posts: 16 Location: London

Forgot to mention, Alice was born with exomphalos major!!

sue martin · Posted: Tue Jan 08, 2008 9:08 pm

hi Fi.

Charlie is nearly 3 and feeding him is also a huge ball of stress and he hasnt had half of the issues alice has had to deal with. I spoke to his surgeon in October about my concerns and he said it was normal toddler behaviour and he would grow out of it .......................... i'm not so sure he will? Luckily weight gain or loss has never really been a big issue for him although he was only 4lb when born. In fact i weighed him today and he is 2 st 8 (36lb which is 16.3kg) which puts him just about the 75th centile. Dont ask me how his weight hasnt suffered as he never sits still and eats like a bird! Saying that though, its me on the prozac due to the stress of it all.
keep me posted of her progress.
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Lots of love from Sue,mum to Charlie born with Gastroschisis Jan 18th 2005.

Fi · Joined: 15 Dec 2007 Posts: 16 Location: London

Hi Sue,

Thanks for your reply, I'm sorry you've had such a stressful time with Charlie and food. It's great he's gaining weight though. Every thing I offer alice gets dumped on the flooror spat out!! Except biscuits which she will happily eat (no surprise there!!). Alice is currently 9.54kgs which puts her just under the 25th centile.

We have been seeing a speech and language therapist for help with feeding and swallowing. When I spoke to her about this, she didn't seem overly concerned, but said to offer her no more than three different things at every meal and maybe try to increase her to four small meals a day rather than three. But it's such a worry when they won't have more than a mouthful isn't it?

My biggest worry is the jej tube, we are in such a hurry to get rid of it now because of the daily dressing changes, not being able to bath her when I want, risk of infection etc. And because she is older, she is far more mobile at night and we have been waking to find that the tube has disconnected with the pump at some point overnight and the pump has kept on pumping and she has had bile leaking back from her tube and her cot is soaked through.

Does Charlie wake in the night hungry?

Thanks again,

Fixxx

DonnaR · Joined: 11 Jan 2008 Posts: 5 Location: LONDON

Hello Fi

A Happy New Yr to you & yours.....(I haven't been on here in a long time).

Sorry to hear about the episode(s) your little Alice has had to cope with, hope everthing gets easier for her and quickly.

My daughter (Lailah) is also having feeding "issues" won't tolerate anything that resembles lumps or chewing but at least we've moved on slighty from purees.

We visit with a speech and language therapist as well as a paed gastroenterolgist. Her wieght at hospital yesterday was 9.64kg, which is somewhere around the 9th centile (she tends to float between 9th and 25th).

The advice given to me is to continue with finger foods, let her control what she eats, portions are to remain small, no negative comments from anyone if she hasn't finished her meal, basically "let her eat whatever she can manage to keep down". Like Sue I'm being told it's quite normal toddler behaviour, whatever that means?? I'm not so sure I agree. She wakes around three/four times a night having coughed so much that she vomits or is just unsettled....so I walk around all day yawning! Ha!Ha!

Oh, she was born with exomphalos major - liver and bowel in May 2006, developed a nasty wheeze from about the age of four months, now has bouts of bronchilitis, asthma, eczema, gastro-oesophagal reflux, multiple food allergies including milk/dairy, currently on Neocate Active. Recently upgraded from Neocate as the Neocate Active has added calcium and I must say I have noticed Lailah's thighs looking slighty thicker. She's tall 82cm but her frame is very slim. She is such a happy, chatty, confident, social 20 month old Laughing

.What is Alice like??

Alice's sounds like a little fighter and I do believe these little "blessings" that have entered our lives are indeed remarkable beings, whatever is sent their way they just cope with it.......if I hear of anything that I think may be of use to you I shall let you know until then take care, you are in our thoughts.

Donna and Lailah.

P.S sorry I wasn't any help with the feeding issue but I'm trying everyday.
xx

All the best to you both.

Fi · Joined: 15 Dec 2007 Posts: 16 Location: London

Hi Donna and Lailah,

Thanks so much for your reply and a very happy new year to you too. And thanks for your advice.

We've had another day of not really eating, although she is very willing to try any finger food offered to her. She is having Pepti Junior milk at the moment and will take between 600-700mls of it orally throughout the day and has 300mls overnight via the pump, which I know is quite a lot. How much milk does Lailah take a day?

Alice was weighed today and she has lost, she is now 9.37kgs and she is 74cm in height. She is walking and babbling and generally quite a handful!! She is still oxygen dependent and has been her whole life, but we have been steadily weaning it and she now has 8 hours a day off.

Alice used to cough, retch and vomit a lot during the night, but we later found out that this was down to her milk protein allergy combined with her jej feeds. She was also prescribed vallergen for this and it stopped her retching. You must be absolutely exhausted. Alice has started to wake at midnight due to hunger, despite the pump running!! But it's only usually once a night so I can't complain.

This Sunday (13th January) it will be a year since one of her arrests, she was being transfered from our local hospital to Gt Ormond St hospital, where she received most of her treatment. It was very scary, the paramedic had to give her mouth to mouth right in front of me. A year on though, you wouldn't know what she'd been through and if it wasn't for her nasal canula's you wouldn't know there was anything wrong with her. It's amazing, her Doctors are stunned at her progress!

Thanks once again for your kind words, you are in our thoughts also and I hope Lailah continues to thrive and the coughing and vomitting resolves itself very soon.

Lots of Love,

Fi and Alice xxxx

P.S I've probably mentioned this before, but Alice is 16 months.

georgie · Joined: 19 Dec 2007 Posts: 7

hello everybody,
i have found these posts quite useful, my daughter is 16 months now and was born with gastroschisis, she has had no problems since, except the eating thing. it has become a problem, she will only feed herself now and eats very little, she has always been small and is off the bottom of the centile chart.
i really think the eating is just being a toddler thing and am hoping that in time she'll grow out of it. its so hard not to stress about it, but when shes finished chucking her food about i just get her down from the table and don't make a big deal out of it, i can't see another way of dealing with it (although any ideas would be very gratefully received!). her surgeon seems happy as long as she gains a little bit of weight each month, which she does.
Georgie XxX

sue martin · Posted: Sun Jan 20, 2008 2:00 pm

Hi Fi,

Charlie NEVER wakes in the night hungry! In fact he's NEVER hungry!!
Everything i offer him whether it be breakfast or supper he sais "Dont Want It" Surely my cooking isnt that bad? Embarassed

I know Georgie has the right attitude but when you know they have got to have rumbling tums because they havnt eaten all day i find it almost impossible not to find myself force feeding him, my health viz reminded me that this was child abuse!! How can worrying and caring for your child be classed as abuse? Is it basic human rights gone crazy? Evil or Very Mad

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Lots of love from Sue,mum to Charlie born with Gastroschisis Jan 18th 2005.

Dean · Joined: 15 Dec 2007 Posts: 12

Eating has been the only issue we have really had with Tanisha, it`s very little for days, then she will pick and park none stop, then back to very little again.
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