Now, I said I would never come back here due to the (small) percentage of negative press that I had over the peanut desinsitization programme. However, as I know it did give many people real hope I thought I would give a year to date update.
As people may remember we were down to 5 peanuts a day as a 'dose' to ward off any unwanted reactions. Well, IgE's reduced adequately and now we are onto a weekly dose as part of the exit strategy. Other than that any food goes, no label reading, not worrying, all restaurants are OK.
Keep hoping ladies, the future is most definitely bright.
I'm pleased for you! Dd hash ad a nut allergy since the age of 11, (twice on a blue light to A&E before being diagnosed) has been again for testing age 25.
She had 24 skin prick tests and was found to be allergic to things she didn't know about, but showed no reaction to nuts. They then offered hertaste testing to 4 different nuts, starting with a half at a time, peak flow etc after 20 mins and the more nuts up to 4 whole nuts.
She showed no reaction to any nuts, and is thrilled to bits as she travels a lot and has always be worried abut nuts in things. She is in Malaysia at the moment, eat anything and everything with nuts and very happy and well.
The Royal Brompton were fantastic, spent a morning there and they even gave her lunch!
Hi BBF So glad to see you back - I am one of the many who have been greatly encouraged by your story, and your very brave DSD. That is great news - I can't believe it has been a year already! A weekly dose sounds amazing, and a huge amount less onerous than 5 a day. Long may it continue, and much appreciation for the update! Beggsie
Bumbums - sdd had anaphylaxsis to all nut and has gone from practically peanut dust to 30+ nuts in test conditions over 18 months. Was on a daily maintenance dose for over a year and now down scaled to a weekly dose to ward off any reinstatement. Scratch test down from 14mm to 4 and IgE dropped immeasurably.
This is so so good to hear! I'm really happy for you, what progress. Our DD is 18 mo and has had anaphylactic reactions to nuts since she was 9 mo. So this really is very encouraging. I'm guessing you are part of the Adenbrookes trial? I hope the news keeps getting better and better for you.
Am so glad you came back! I was looking for you a couple of months back as we were having a few problems with DS1 and his dairy desensitisation programme... so can I ask you a couple of questions?!
We're now 18 months in and he has gone from reacting at 0.75ml to having 90 ml a day, which is totally amazing. However, after two hospital admissions in the last 3 months we have discovered that he mustn't do any exercise for two hours after each dose.
Have you heard of people having this issue with exercise? and did your DD have any reactions during the protocol? if so, how did you feel about it? I always feel like I have failed him somehow but am coming to think that I may just have to accept that it is par for the course and mistakes will sometimes happen etc.
We have also had times where he is resisting carrying on. Partly because he doesn't like the taste, though we mix it with rice milk, and partly because he is scared he will have a major reaction and end up vomiting (though that hasn't happened with the exercise-triggered reactions and I keep reassuring him that we are upping the dose very gradually so it shouldn't happen).
My mum suggested bribing him and that has made a huge difference, but I was just wondering if your DD had felt like this at all and how you handled it?
So great to hear such a positive outcome! Congratulations to you all .
What age do they usually start desensitization? I'd be interested in learning more about it. DS2 is only 3, but he's allergic to a huge long list of foods. Even improving his reaction to one foodstuff would be amazing!
Oh BBF - sorry, I was so excited about you being back that I completely forgot to say how pleased I am for your DD that things have worked out so well and that it does seem to be a long-term solution...
BBF, great news! (you may remember me as SkipToMyLou or Mumfie68 from a while back) - sad that you feel you can't post here much, as what you're doing can only help us all. I hope you change your mind...