Hi purple stars thanks for that yes she does have wheat the so called professionals said they were going to test her now they haven't even mentioned it and also a consultant even said she is thriving now you can start taking her off her meds now, i should just take her off them and then take her to a&e and say that lovely consultant told me she didn't need them any more why is she in pain i trusted her, i ended up putting a complaint about her stupid woman, its ok when she is getting expelled from school and needing loads of care from all the health professionals just because they couldn't be bothered doing their job properly, it really winds me up, it is like they don't care, what is the point, they don't listen, but saying that the last lady i saw peadiatrician was nice but what are the chances of seeing her again, it is ridiculous and they wander why mistakes are made when they don't see the same kids.......makes me wander...Sorry for rambling, i am just about to try her on some rice milk i tried it, it is quite nice. Sharon x

shazb i am so sorry you are having such a hard time with your dd, just a question does your dd have wheat?? i ask because luke can not have wheat one of the side affects i find that it has on luke is that he becomes really aggress(sp) he will also fly off the handle and scream and cry if he has it hes behaver is soo diffenert

i hope you get some help with her soon

love claire

Hi Natalies can i ask why your son is being assessed for behaviour issues? How old is he. I think my daughter needs assessing her behaviour is getting worse, she majorly tantrums and i mean major it is getting very tiring, she tantrums to getting dressed and i mean she punches scratches pulls hair and nearly throws up it is that bad and we have it every morning and night. I had to drag her out of library other day due to her nearly attacking a little boy probably her age but because she is very large for her age she towers over them, well i prevented her from doing it she then proceded to having major tantrum and everyone looking at me i just carried her out kicking and screaming, it is horrible, she has some undiagnosed allergies and reflux, she does have apnoes and what i call floppy moments during her sleep she is 21mths just, the peadiatrician said we will keep an eye on her behaviour but i have had 3 other children and none of them were ever this bad, yes kids do have tantrums but hers are to the extreme, she also pushes, nips, bites, pulls hair, kicks and this is to other children if they have a toy she wants because everything is hers and i know this is normal for her age but when she is hurting other kids and she is that bad they are literally giving her the toy to have peace, like she is a mini bully, she is also starting to throw things and large things like chairs etc in her tantrums, she also had one at 4 in the morning don't know why but she proceeded to totally take all sheets off her cot and throw them in her tantrum, it is so embarrassing and tiring as i have a 6yr old that also tantrums and it is beyond a joke. Hope all the tests have gone ok, and glad your tests have gone ok purple stars and hope you get some results soon it is just the waiting. Good luck. Sharon x

 natailes 1982 if you pm me a landline number and a could time to ring you i will ring and talk to you on the phone as there is a lot to say and i am not very good at spelling and writting this down as there were things that would of helped me had i known about them

love claire

we got back late on friday night,

we got sent to gosh as it is are nearst childrens hosptail, i have anther son under them so my local hosptail asked them to look at george next time luke went but i have spent a year being told there was nothing wrong with him it was very hard

we are now wating for the test results they did not do the ph test as we were not booked in for long enough as the 3 tests can not be done in 24 hours so i took him off his meds for no reason

thank you for all thinking of me

not sure where abouts u live hun im assuming ur in the south east area? there is also addenbroooks or bristol who speclise in children. if u nearer to one of those

does ur daughter have any diagnosis or r u being fobbed off, matthew has reflux, apnoeas, abnormal swallow, asthma, allergies, food allergies to dairy and soya and also seeing if he has a bowel condition, plus awaitng a behaviour assessement.

hugs it is very hard when u try and help ur kids and u dont get listened to

wasnt sure if u was asking me or the other lady but thought i would give u our experience, matthew started having seizures at 8 weeks and was under the paed at the hosp, alot of things where going on reflux etc, anyhow at 9 months old he diagnosed with epilepsy and put on medication to control the seizures, this was the time he was referred to GOSH as its our local main childrens hospital our local dont have the doctors who deal with that type of thing, he had other issues going on, anyhow he was seen at 13 months so took a while to get seen, but was so worth it, they decided to bring him in, and done alot of tests, we was in for 5 days, and he was diagnosed with silent reflux, failure to thrive, sleep apnoea, abnormal swallow. the rest is history. he was 1st under neurology for the seizures and apnoeas, then saw respiratory for his apnoeas and asthma then saw gastro for his reflux who also deal with his bowels.

they r a brillant hospital and if it wasnt for them i dont think matthew would be here today.

Thank you. I  hope it all went well. I feel as though they are going to laugh at me asking for a referral and think I'm some kind of over the top mum. You seem to be getting the tests and care that Annie should be getting. Do you mind if I ask why you were given a referral to GOSH and not a different hospital?

how did u get on hun? do u have any results

we got matthews date he goes up 16th for the colonoscopy on the 17th, can you give me some info on the colonoscopy please xxx

he is also haveing one up his bottom we are having a ph test thursday and he is having his other 2 on friday he is having both of them my poor little man ay lest he does not seem as bad off miss meds as i thought

thank you all

you can be referred via ur local paedatrican or sometimes your gp can refer

if you look on GOSH website it has a section on there on how to be referred.

we was referred via our local paed

good luck xxx

First of all, good luck for Thursday. I hope you get really well looked after and get some answers to your questions- I know how frustrating it can be.

I hope you don't mind me asking but I'm just wondering how you got you referral to GOSH. Annie has suffered with bowel problems since being born and we are now on our third consultant as noone seems to know what to do and they just are not listening to her symptoms which means I don't trust that they are caring for Annie as they should be. She is on so much medication to get her to poo and they are now saing she will have to stay on this unitl she is ready to be potty trained and will hopefully have developed the sensation to push (which is definitely not an issue for Annie- she pushes constantly) but I have major concerns and issues with this 'masterplan' of theirs- not least as I don't feel there is a plan other than fob us off whilst ever the medication is making her do a poo. Annie also has reflux.

I feel so frustrated and upset and tired and down and peed off. I don't know what to do. I was thinking of private but then they are no different to the doctors that work on the nhs in my eyes so I don't see that private is the answer. It is finding the right doctor that is the answer, be that nhs or private. A doctor in America has offered to care for Annie but there are obviuos problems with that- money being the biggest!!!

oh ur lo is having the endoscopy which is down the throat, matthew is having one up his bottom to check on his bowels.

what ward r u staying on?

im not sure on hotels etc i know if we have had to be there early then we have stayed in the patient hotel the night and then go to the hosp the nxt day but as its less than a week away they probably wouldnt have the room.

if u look on GOSH website they have a link there about diff hotels. b&b etc local to GOSH if u cant find it let me know and will give u the link

yes it is the ph test but he also has to have the same as your ds and a carmea down his thoat

 do you know if there is a place to saty the night before?? as i have to be in for 10 am on the thursday so looking to see if there is any were to stay on the wed night?

what test u going in for hun,sounds like the ph study if u have to be off meds for 3 days prior

we r still waiting for them to call about matthews colonoscopy hope its soon

good luck xx

Good luck with the tests.

I hope your LO isn't too bad off his meds.

Emma

they rang up this morning andsaid that they had a cancalltion and did i want it it is for next thursday i will have to stay over night but he has to be off all his reflux meds for 3 days before they do the test