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Our newsletter piece with AAIR is iminent.(18 Posts)
You may remember when Babybarrister started a gret thread about the lack of psychological support available for DC's with allergies.
I contacted AAIR and they have agreed to produce a piece. I have (if/ when I find) our original thread with all the points mentioned. Also those who are happy for me to quote them - although the quotes obviously are anominous.
I am going to make sure that it is mentioned this stemed from Mumsnet and will report this thread to check MNHQ agree.
They may have already contacted Babybarrister? BB I forwarded the email you sent me.
Anything else to add to the piece please post here.
<Dons orange cape>
Ha ha! I left DS bowl - or he did - on the table this morning. The sun comes in the dining window during the day - so we had a bowl of rancid milk when we got home.
They only emailed me earlier so will mention you when they call. You would be great to talk to them because of your DS severe and varying allergies and also the frequency of his anaphylatic reactions.
I would just love you to mention how your DS stands on a chair and shouts.
BB have PM'd you.
OK everyone, have spoken to the PR lady from AAIR. She wanted 'DS story' for the piece but kept mentioning MN and the allergies board and the NEED for services for the children.
There is a consultant working at the hospital that does lobbying and often approaches the governement who will be hopefully contacting me soon.
When he does I'll be referring him to the threads ^^ (or all MN allergy board!) to really hammer home the daily challenges our children face.
Hopefully we'll get someone somewhere to listen.
MNHQ I mention MN a
hundred few times and how great the allergy board is for parents and how this is our counselling! where we laugh/ cry/ scream etc. I have asked them to mention it because thats where the article idea stemed from.
Hello, just posting here so I can look out for updates on this issue, I came across the threads today and it's something I'm very interested in. I used to post as SkipToMyLou a while back for those who remember me - hi all, I remember BB and whelk and a few other names, good to see you all here and still coping! I'm still slogging away on my psychology degree so hopefully one day there'll be at least one more qualified professional doing research into the psychological effects of allergy!
Out of interest, has anyone linked to this study: onlinelibrary.wiley.com/doi/10.1111/j.1398-9995.2010.02342.x/full - makes for interesting reading and may help with emphasising the need for action. And speaking of action, count me in, but I don't do orange!
Hi, great article.
BB I loved this bit in refernce to our arguemrnt that services are available to diabetic children.
"Avery et al., 2003 England Children (712 y), 20 peanut allergic and 20 IDDM children. Diagnosed in specialist clinics Researcher designed questionnaires; cameras to record impact of allergy/IDDM on QoL over 24 h Compare QoL between patients with peanut allergy and IDDM Allergic children had more fear of adverse events, more anxiety about eating than diabetic children"
This is great you are kidding. I was about to refer you to the article you have just mentioned! Basically quality of life including fear of dying and adverse events is worse in children suffering from allergies and int heir families compared to type 1 (insulin dependant) diabetic children who have to injeyc themselves daily. The support for other long term conditions in children like diabetes is also so much better than with allergies.
The unpredictability of allergies is by far one of the hardest things to cope with. I definitely use MN to get most of my info and offload anxiety/stress of day to day concerns/mountains we climb! Really great idea, can't wait to see the progress.
Thanks, I found it recently because I've been feeling really stupid about DS's allergies, and I've been panicking too much and I'm fairly sure he's picking up on it from me so thought I'd look and see if there was any general awareness of psychological issues. We have his two-yearly appointment with the consultant soon, so I was hoping to ask then since he's part of the Addenbrookes' team, if anyone has awareness it should be them they seem to be at the cutting edge of most allergy issues.
I'm so glad I thought to come back here, I've been looking through some threads and I can see I'm not the only panicky mum (with a DH who appears to not care but who in reality is trying to balance out my meltdown). It really helps to know we're not alone and nor are we going mad.
You are definitely not alone. I go from having panic attacks and being hysterical to going into information overload, I need to know everything! Being on MN has been a huge help to me, although it is only over the last fee months I've been able to start posting, everyone seems so much more experienced than me.
I agree Adenbrookes should look into this, but I guess with difficulty of funding research looking into possible treatments will understandably get more attention. Anyway I'm glad you're feeling better after reading some threads on here.
I feel like such an idiot, I just had a lightbulb moment reading this thread. DD (4) is obsessed with death and dying - has been for about 2 years, so not a passing phase - she asks when we're going to die, she's planned that we all die together ('can you put that in the diary mummy? ), and lots of her conversation is referenced back to dying. She gets a lot of from the adults she is talking to!
She is also extremely frightened of new settings and new food. Of course she is, when she's living in a world of forbidden and dangerous food, and asthma meds and attacks. Even playing at the park, she'll notice if someone has split a tiny bit of ice cream and come and tell me before she plays. She is also increasingly angry that 'nothing is friendly' when we're out (dairy and egg, rules out most over the counter treats), when it didn't used to bother her before, so I suspect this is going to get worse.
What a crap mum - I've never really thought about how this affects her psychologically. Of course it does though, doh. Watching thread with interest...
lukewarmmama, you're not crap! Kids often get obsessed with dying anyway at some stage, as long as you keep talking to her and let her know that whilst a possibility, it's a very very remote one, I'm sure she'll be fine. DS went through a similar stage and took to telling all and sundry how he was likely to die soon, but he's fine now.
As to the anger, been there too - it's also quite healthy to let her talk it through, after all it IS crap. Often I find that just by acknowledging DS's anger it deflates it, and when he's calmed down we try and find a positive angle. Sometimes there isn't one, but the heat has gone out of the situation IYSWIM so it doesn't matter as much. I realise your DD is a bit younger, but it's worth bearing in mind.
I think we're all new to the psychological impact, we're parenting the allergy generation and a lot of what we're going through is new or at least not widely understood. Hopefully by the time our kids grow up the world will be a different place and they won't have the same struggles!
I really feel for you lukewarmmama. But we have to pit their safety first and unfortunately that means making them aware that food can be dangerous for them, that's not you being a crap mum, it's you being a loving mum. If any of us knew how to deal with the psychological impact though it would be great.
I agree with mumfie in letting your DD vent of her anger will hopefully help. Sorry but my DD is 19 mo so I have no more help to offer. But definitely don't blame yourself, there is unfortunately no alternative but to hammer in how to be safe when it comes to food and allergies. I can only offer you a non MN <hug>
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