I HAVE HAD ENOUGH

[Mummymoo178]

DD has been on a dairy and egg free diet for 18 months now and still having massive reactions to something. We are back at the consultant who refuses to test her in july when she is 2 yrs and if they continue to refuse testing then I am requesting a referral to Andrew Clearke who has been recommended on here. I keep a food diary for her and try to idnetify the reactions but we have had a particular bad week of approx 6 bad nappies and belly ache a day. I feel so bad for her and very frustrating that we are 18months down the line and no further forward.

Now my rant is over i feel a little less frustrated, but has anyone got any reasurring words of wisdom.

what are her symptoms?

have you considered wheat allergy/gluten intolerance?

Mummymoo no real practical advice but couldn't leave this unanswered. My dd also allergic and I understand your frustration. I don't understand why they are refusing to test her until she is 2? What reason did they give?
I'd echo lackaDaisycal with the wheat but also could be citrus? legumes? tomatoes? anything. Is it worth trying very simple diet then gradually reintroducing foods one by one - particularly the likely suspects.

Hi thanks for the answers. I have considered reducing her down to a really simple diet but she loves food and is at nursery 3 days a week and i really don't want her to feel different (I know this could be for the best but I am reluctant). The local hopsital and the consultant we are under has refused to test her until she is 4 in case she grows out of it is there view. I saw my GP to request a referral to Dr Clarke based on recommendations and my past problems with dietcian and consultant. But he said wait until she has another appointment which is next month.

Her symptoms are rash, very loose acid smelling poo and sore bum, constant chest and cold problems with occassional fever. She has pirition twice a day because she was been sent home from nursery every week and this seems to control her temperature reaction.

St marys Hospital seems be centre of excellence on this stuff. Does she have facial rash and sunlight sensitivity?

Sorry to keep plugging- but we have had reasonably good results with Aloe vera topically. Also some reports of benefits of drinking a little Aloe Vera juice daily (not infants but small children).

Where is St Mary's Hospital? Please.

Yeah is facial rash predominatly but also upper body on occasions, she dosen't have sunlight sensitivity that I have noticed. i have not heard of drinking Aloe Vera Juice.

What does it do??
Where would i get it??

Near Paddington. Health shop for Aloe vera juice and jelly. Aloe Vera is a plant with healing/soothing properties. Some people keep plant in house and if you get a burn then you cut it and apply and the results are surprisingly pleasing. But easy to buy jeppy and juice in health food shop. Likewise, the juice can reportedly soothe mouth ulcers and other internal inflammation. I have used for for son ezcema and it has helped. Can you see a butterfly/fox pattern around eyes, nose?

i meant "jelly and juice" above

Thanks for this i will look it up and see which my gp is prepared to refer me to. will def get hold of some aloe vera juice. Can not see pattern around the eyes and nose it is usually more her cheeks, under her nose and her lips occasionally swell with Dairy(no swelling recently as now dairy free now)

No problem. It is a shocker that NHS does not give out tip sheet. But I think that they don't want us to start asking for Ezcema pyjamas, dairy free food and aloe vera on NHS prescriptions so they stay clear of giving us tips?

you might want to get the cranberry flavour AV juice to make palatable by the way

God tough daddy, what a nightmare. My youngest also allergic to milk and eggs (and nuts and various pollens), but have only had reactions like you describe when she's eaten something by mistake. Someone already mentioned a possible gluten allergy / coeliac disease, there is a blood test that can determine it. there's a great forum where you can ask questions and or have a rant, it's at:

members2.boardhost.com/glutenfree/index.html?1175451679

they are very knowledgeable and would be able to help with steps to determining a gluten allergy.

If you after recipes, (and sorry to be awful person plugging her stuff), after my daughter was diagnosed with allergies I started a recipe blog, it's at:

www.piginthekitchen.blogspot.com/

Hope it's of help, and good luck with DD, it's so horrid when something is making them ill.

Pig in the Kitchen

piginthekitchen thank you for the tips. There are so many triggers between 3 children! We are now used to minimising risk but it is very hard work. School lunches, take your own to parties etc. And then they all have slightly different allergies. Good thing is that they take increasing responsibility as they grow older.

mummymoo, I'm almost loathe to post this is am I'm probably over reacting and don't want to scare you but has your DD been tested for cystic fibrosis (CF)? I only ask because the symptons can include frequent foul smelling stools, swollen painful stomach and constant chest infections. Other symptons include a large appetite but with what the professionals call 'failure to thrive' (ie slow weight gain) and often the person's skin tastes salty.

In order to rule out CF your DD would need to be referred for a sweat test which would measure the amount of salt lost through her skin. further genetice tests would then be carried out if this test was positive.

Whilst I'm sure she doesn't have this condition (it is relatively rare) early diagnosis is extremely beneficial. My 14 month DD has the condition and was luckily diagnosed at birth due to complications but is certainly benefitting from all the regular treatment she gets.

Good luck with getting your DD sorted out as it can't be easy dealing with disinterested and unhelpful medical professionals

thank you for replying to me ellymae. I had never though of it been signs of anything else i am guilty of saying it is a reaction and then realising it was something else. I am usually fairly level headed so dont worry about the post. Just really useful to have stored in case things deteriorate.
Also hoochiemammafeelgood, thanks for this i will certainly try to cut out gluten however not looking forward to it, Will pick up some of the bread when i hit the shops tomorrow.

Thanks

Cystic Fibrosis is routinely screened for in all newborns as part of the guthrie (heel prick)test in the UK now.

lou you're right, but I think its only been since the end of last year that all regions include the CF test as part of the guthrie test. mummymoo's DD is 2 (I think) so I mentioned it in case she might have missed out on it when she was born.

Ok, my mistake, I thought it was 2006.

My son is coeliac, allergic to gluten and milk and intolerant to egg so I know how you feel! It would be worth asking for the coeliac blood test because the symptoms you are describing fit the picture of coeliac disease in young children. Do not take your DD off gluten/wheat until you have had a blood test (and possible follow-up biopsy) as the result could then be a false negative. Hope you can get help (and a diagnosis of the problem) soon.