4 PEANUTS eaten by previously anaphylactic child on STOP study - there will be dancing in the streets!

[BlueBumedFly]

Hello All

Back at Addenbrookes today as DD was struggling to eat the peanut butter dose. She is totally abhorrent to the taste and it was making her heave, it is so very sticky and cloying. Bleugh.

So, change of tactic and she went up today and ate 4, yes, wait for it, 4 PEANUTS!!

She still hates the taste, I am sure the body knows you know!

Anyway, all is well, slight stomach ache but OK other than that. Next step is the 11 Nov when she will have 10 peanuts!! DH and I will have run out of cooking sherry by then with all the nerves!

LOL MT is a poet and didn't know it LOL!

ok, sorry, wording is wring maybe.....but it does come across that way when you are raning about it all, and when you rant about how hard DS1 is getting to feed when he declares he n longer 'likes' the few foods you know he is safe with.

KM, I can't really believe that you wouldn't take this opportunity if it was offered, if the risk was huge then the study wouldn't be happening. Surely it is happening because they believe it is safe and could improve things forever for that sufferer. If you could take your sons allergys away would you not?

My daughter is badly allergic to Amoxicylin. It sacares the shite out of me. If she ever needs it, it has to be under hospitalisation. BUT I would NEVER deny that happening...it may save her life after all.

This could be a breakthrough for children/people everywhere - not for your very simplistic view of parties, but for those who get touched by someone who ate peanuts on a lunch break etc.

For science to work out these things someone has to be brave enough to try it.

If a slight stomach ache is all that comes from eating it, then there will be very little/no symptoms to "made in a factory with nuts" etc. It opens up the world.

Ah yes, all researchers are evil and do not care about finding cures, just money.

Fwiw, I was planning on being a researcher - to help people.

That is your choice.

That doesn't mean that BBF is a terrible parent for making a different choice to you

but KM.....what if, in the future, it actually turns out that there is a cure, and your boys could have been helped, but thro your fears you would not let them, and now they have missed the 'window of opportunity'???

are you seriously saying that all researchers are bad and have no care for people??

what would happen about all the researchers then trying to find a cure for cancer?? or HIV......

this is a fab study....and one I would jump at. I HATE HATE HATE reacting, and having to avoid foods I love. I may joke about it with friends and profess not to care, but I do, and it makes me feel like a freak!!!!

I KNOW it is you child - you seriously prefer him living in fear of full anaphylaxis when there is a chance, if this treatment is finally tested and verified, that it works??

Do you vaccinate?

Strange that - you get paid for finding answers They aren't making up the answers....

Kerry - I don't know about this study, but there is, of course, scientific research is government funded - google Medical Research Council (dh worked there for a number of years researching CJD/degenerative brain disorders)

Fwiw, it certainly ain't as well paid as the private sector

Absoultley psyco, it's true though. It must be horrible feeling like that too.

jaffa......yup, tis the pits avoiding stuff and feeling odd!

and I always feel as tho people think I am being hysterical when I ask what is in the foods they are cooking etc.

BBF, that is indeed great news for your dd! And medically significant.

Kerry, thank god for people like BBF, eh? Without her and her dd and others who take part in such studies at unknown risk to themselves, there is no medical progress for the rest of humanity.

blue - sorry for the hijack but i have to say

Kerry - i don't get cross on mumsnet very often but you have totally pushed my buttons today your comment:

'People also forget that researchers are not doing this out of the goodness of their hearts. They are doing it for MONEY. Because they get research grants mainly from the big pharmaceutical companies and if they don't show results.....

And the pharmaceutical companies don't care about the "data" (i.e. test subjects) they just want to be able to market the "cure".'

Do you know how much academic researchers are paid? Nearly all of the researchers i work with and that is a large number, do research because they want to improve the standard of life for others, so maybe there aren't doing it out of the goodness of their hearts but because they feel that medical research is their calling in life. Most research grants DO NOT come from pharmaceutical companies they come from the government and Europe. We have to adhere to very strict guidelines and protocols to even get the ethical approval to carry out the research, this can take months to get through, hours of time is taken just writing the grants and ethics before any funding is given. Most of the companies i have worked with are more interested in the results then risking a huge lawsuit if there product doesn't work or causes injury.

In addition from what i have read of the study that blue's child is involved in, there are no 'new drugs' involved just peanuts and peanut protein, no pharma company is going to get rich quick off of the back of this study. to me it look far more like a the NHS funding something which in the long term will result in a decrease cost to the NHS and hopefully a decrease in the death rate of peanut allergy sufferers.

Ah well I do agree with KM in that I think it's wise to be a little suspicious of studies and researcher's motivations (I am one) and definitely worth being aware of how studies are funded.

But the potential benefits from this study are huge. Not from the point of view of parties as such but from being in a position where an accidental exposure wouldn't mean death.

It's up to each parent to decide whether the risks outweight the benefits. That will be a different risk for each individual and it should be up to each individual & their family to weight up the pros and cons and decide.

I'm glad its going well BBF.

KERRY - here is some info for you on your comment of:

'people also forget that researchers are not doing this out of the goodness of their hearts. They are doing it for MONEY. Because they get research grants mainly from the big pharmaceutical companies and if they don't show results.....'

'And the pharmaceutical companies don't care about the "data" (i.e. test subjects) they just want to be able to market the "cure".'

'And it is naive and trusting and desperate parents who get caught up in this....'

You don't know about this study so I will tell you. I will also tell you that I work in clinical trial communication so I am well aware it is a multi-billion dollar industry.I know how it works, I know what happens as I work with the 'evil' yet wonderfully talented researchers every day of my life.

This study is NOT FUNDED. Not a penny, doc is buying the peanut butter himself. It is not being run by a money-grabing pharma company it is being run but a hospital to improve the health of children. He is hoping for government funding next time but there is no guarantees.

Your child is different than mine and you are different than me. It would be a very dull place if we were all the same.

As for your comment on what we had to sign any medical treatment has consent forms and children over the age of 6 have to sign 'assent' forms. You cannot drag a child to a trial and make them participate, they have to be assessed by a qualified medical professional that they wish to go ahead. DD is 10 years old and conducted all the premlim visits with the doctor herself. We let her choose, she choose to participate.

Brilliant news BBF. It's interesting what you say about your DD not liking the taste of peanuts and that the body knows. My DS1 had an anaphylatic reaction to eggs when he was 2, we avoided for years and he had to have an epi pen. He is now 9 and able to eat eggs but he detests them so he avoids.

He had to take a peanut challenge test when he was 6 as other testing had shown he had a reaction to some tree nuts (almonds, hazlenuts and Brazils were the worst) He had never had peanuts befroe, and although he had no reaction he hated them too.

Glad things seem to be working for your DD.

BBF i wish your dd well on these trials and hope that they will help her to live a happy normal life in the future.