Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Allergies and intolerances

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Brilliant!! Nut trial expanded and funded!!

14 replies

BlueBumedFly · 22/02/2010 06:54

See the BBC news - Cambridge now have DOH funding and the stop study now expanded to a three year study. Wonderful, all their hard work has been worth it.

This is brilliant news guys, one step closer to a potential treatment. So very exciting!!

Cannot to the link as I am on my phone, just go to the BBC website.

Happy Monday guys!!

OP posts:
babybarrister · 22/02/2010 08:32

This reply has been deleted

Message withdrawn at poster's request.

bridewolf · 22/02/2010 10:40

its wonderful news and may be helpful to those with just peanut allergy, however its not a full cure. its just tolerance, and some life varibles may cause that tolerance to dip, such as illness.

but it does mean for those with one allergy can live a more normal life.
i am not sure if this means that they can give up on epi pens, or if they HAVE to eat a certain amount of peanuts a day to maintain a high tolerance of the peanut allergy.

still, its a hopeful, forward step towards a less stressful life that the allergic live.

on a personal note, i dont think this would be suitable for my allergic child, as he has so many allergies.

BlueBumedFly · 22/02/2010 10:46

Bridewolf, my sdd was one of the first 20 kids, it's not a cure I agree it's a treatment and it's life changing. Sdd also has other allergies and asthma and she is coping just fine.

OP posts:
ClaireOB · 22/02/2010 10:57

Brother of a friend of mine, mid 40s, peanut allergic, is very keen to find out if any adult trials are planned. Anybody know anything?

tatt · 22/02/2010 13:39

it was in the Times today too. Brilliant news, but I also want to know when it will (a) spread anywhere else and (b) include adults. By the time I persuade my teen to go for it they will probably be too old for these trials . Bridewol search the allergy threads for posts by BBF and you can follow the ups and downs (mainly ups).

EccentricaGallumbits · 22/02/2010 13:42

Saw this on the news this morning and thought of you BBF!

bridewolf · 22/02/2010 15:39

i am very cautious about this, i agree that for one or two allergies it would be fantastic to get tolerance levels down.

certainly would improve some aspects of our sons allergy life.

its still experimental, and tolerance can waver at times, there are acounts of unexplained , sudden reactions , being put down to illness , or not eating enough of the food to keep tolerance up, for some cases.
agreed a high rate of good tolerance evidence, but do to the experimental nature of this , do the children have to always carry a epi with them? in case tolerance is not at high enough level?
as its tolerance and not cure, surely this aspect of life will stay the same?

and for those with huge lists of allergies, i dont think those children would qualify.

still hopeful, and will certainly be of a help for some.

BlueBumedFly · 22/02/2010 22:42

Bridewolf. Firstly I think it's really important for me to make two points. We did not go into this lightly and not all kids suit this type of desensitization.

At the moment, this is a treatment. She could not tollerate more than an eighth to start with and at the last oral challenge she had 32 peanuts. Daily dose is 5 a day but we are working towards an exit strategy based on recent skin prick and rast tests. A clinical trial is no good without an exit strategy as that is what drives the data.

At present we know the skin prick reaction has decreased from 14mm to 4mm. This has reduced over time, waiting fir ige results as we speak. We will then formulate a plan with the docs which will see a month off all nuts (clean month) then retesting and redesensitizstion which should be a lot quicker then so on and so forth until we hope one day for a cure for want of a better term.

Yes, it's early days and yes, clinical trials are experimental. Without them we would never progress medical science. What we have here is a pioneering team of physicians who potentially could make a difference to many lives. They are lovely and caring with the kids, each step us carefully measured and monitored. Dose is taken in the morning not near bed and not during a bout of strenuous exercise. Any illness is reported and advice given on dosing. We have never had to give any dose that has not been given and monitored first in the hospital setting under the constent watch of the team.

OP posts:
tatt · 23/02/2010 15:49

bridewolf it is really worth reading some of the previous discussions. BBF's step-daughter had tree nut and peanut allergy and skin prick tests are declining for both. Remove one allergy and you might find your allergic child was slower to react to others. And the method might be used for other allergies, although they might have quite a restricted diet eating all the things they were allergic to.

And yes they do still carry epipens at the moment, because this is a professionally run trial.

My allergic teenager is now at the stage of wanting to eat out with friends/ have boyfriends and soon probably alcohol. I am leaving them alone in the house tonight and while they are very sensible I'm scared. Anything that would reduce their risks would be very welcome and might mean less premature grey hair for me.

PixieOnaLeaf · 23/02/2010 15:57

This reply has been deleted

Message withdrawn

BlueBumedFly · 23/02/2010 16:15

Tatt is correct on all she says, also some more good news then, she is not NOT allergic to Tree Nuts at all. After the last big peanut challenge her treat was a nice slice of battenburg - who'd have thought eh? Marzipan all the way at Christmas too!

Pixie - you go to Addenbrookes every 2-3 weeks for the initial desensitization then it decreases, this week was the first time SDD has been since October.

OP posts:
BlueBumedFly · 23/02/2010 18:41

Yey!! We made mn front page!

OP posts:
bridewolf · 23/02/2010 18:55

i know this is a experiment, and i am really glad that some are doing this, however, i am still aware that its TOlERANCE and not a cure.

it can bring a greater quality of life, which seems to be the goal, but for long term complete tolerance for all, for the rest of their lives, is that really possible?

what about horomone changes? periods?
and a illness?/ recovering from flu for instance? (shrug)

would tolerance be affected then?

and if did, after treatment would you still need to carry epi pens?

its huge commitment, and does contain a certain level of risk, and home risk, but then thats something we live with every day, so perhaps living with unexpected reactions, is something we already cope with.

i have heard that the treatement has the welcome side effect of lowing levels of other linked allergies, and thats a huge plus point.
however, i am sure that this treatment will not suit all allergic people, so in the end will only give a greater quality of life for some of the allergic population.

which is good, hopeful.

but its still not a cure, its still experimental, and for us, with our sons history , i am sure that he wouldnt not qualify for this.

good luck for all those willing to try.

i still find it objectionable to hear people reffer to it as a cure, one day , perhaps, but for now , its a experiment, with a lot of hope thrown in.

BlueBumedFly · 23/02/2010 19:18

I 110% understand and respect your views bridewolf.

When you live it every day it does seem very possible that within the next 10 years it may be more than just a tolerance treatment. Hope is all we have so I for one am going to hope as hard as I can.

We do carry epipens, to not would be foolish. As for illness well we have had enough of that with no ill affects. As for periods and develpment and teenage angst well be just keep swimming just keep swimming ....

OP posts:
New posts on this thread. Refresh page