has anyone heard from Caroline5?

[Fio2]

was just wondering if everything was okay? whether you had the results yet and stuff? have been worrying about you!

Hi fio - sorry haven't been in touch as usual. Haven't been on Mumsnet or the PC much recently, just so busy with work and everything else. Just got back from a week's holiday, which went pretty OK, although quite stressful! dd2 was quite grumpy for much of the time, particularly if trying to sit in a cafe, go to sleep or travel anywhere

We still haven't had any test results, cannot believe what is going on there. It seems that the geneticist is snowed under with work and doesn't reply to any communication. Dd2 has also not put on any weight again (she won't touch the Fortini milk) and is still permanently constipated, despite all medication. Her weight is off the bottom of the chart now. Beginning to get quite worried. Paed also said she was worried which was even worse. Dh still unemployed. Sorry for moaning!!!

Have been so out of touch don't even know if you have moved yet or even if you did in the end!! Hope dd and ds are settling in well to new places (if you moved!)and you too. Hope all is OK and thanks for thinking of me - a whole thread with my name on!

glad to hear from you caroline% and you are not moaning at all! Sorry you still havent got any results, I wonder whether they know how it makes you feel when you are left hanging in the balance not knowing whats going on? As for the weight thing, have they talked about the tube feeds? Is that what they are suggesting? I wouldnt worry to much about that. My sister had then through her stomach as she found maintaining weight difficult. They really arent as bad as you think. Keep well xxx

Caroline, sorry to butt in - my dd was tube fed for quite a while, we also had loads of stuff to add to her formula to increase the calories/carbs. It really helped her gain weight, so if they suggest a tube and you'd like to chat about it, give me a shout.

Thanks fio and luckymum - I guess I am a bit worried about the tube feeding, although they haven't mentioned it recently, but I can't see how much longer she can go on being the same weight (about 22lbs, age 3 ) She did eat much better on holiday, but not sure why. Thanks for the offer luckymum, I will take you up on that if it comes to it. How long did your dd have the tube for?

Caroline - she had it for 8 months, from 4 months old to a year, so younger than your dd. When she had it pulled we had to put cream in everything to keep up her calories - talk about teaching good habits! Its very stressful worrying about their weight so I hope you get it sorted. Does dd have a dietician?

Yes, but the dietitian (who's really skinny herself!) doesn't have too many ideas. dd does eat quite a good range of food, just not very much of it - she gets bored really quickly and throws it on the floor. She doesn't like anyone helping her with eating, but can't really spoon feed herself. She also gets v constipated which doesn't help. She does drink a supplement called Enlive but it's not really making a big difference. Perhaps I should try frying everything - maybe a cooked breakfast everyday!!

Is your dd OK now luckymum?

Do you think dieticians have to be thin to get the job

Dd is doing fine at the moment (she's 10 now) the only battle we are having at the moment is with the DLA people.

The ng tube saved us from whats happening to you now. She was hooked up to a pump feed overnight so I didn't stress over what she had in the day. She had slight oral aversion - possibly linked to her being ventilated for a month but also could have been a downside of the tube - so didn't like things in her mouth.

Some hospitals are going straight for the stomach tube these days - gastrostomy - as they think they get better results particularly in older children. I'm in touch with quite a few mums whose children have/had these so could get you some info if the paed decides to go that way. As Fio says they really aren't as bad as you think in fact the mums I speak to think the're bloody marvellous!!

Yes, I'm beginning to think it might be a good idea too, but our paed (a new one, the old one was in favour of gastrostomy)thinks it's a bit drastic. Glad to hear it was so good for your dd good luck with the DLA, we're about to try to get the mobility allowance - aagh!