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Following the discussion about councilling for children with allergies and funding. PLEASE READ

(28 Posts)
youarekidding Mon 13-Jun-11 21:21:15

OK, many will remember the great thread babybarrister started re children with severe and multiple allergies not having access to councilling, and that similar was available for diabetic children.

You may remember I contacted AAIR Charity, (using my other name heliumballoons at that time).

They have emailed and want to ring me to chat and do an article for their newsletter.

As this wasn't my thread and many contributed to BB's thread I thought it would be great if everyone put some suggestions of what can be said, what we want here and I can pass it all on.

I also wondered whether I was allowed or should mention the chat originated from Mumsnet? MNHQ if your reading this can I or should I? grin

youarekidding Mon 13-Jun-11 23:14:55

.

babybarrister Tue 14-Jun-11 10:23:53

I think that is great - Anaphylaxis Campaign did not seem very interested as I said - please do mention the thread - I am quite happy to speak to them if they want further info. I do think that the comparison with Diabetes is very pertinent - I met a local Diabetes specialist nurse who told me that they have a specially trained psychiatrist as a part of their team!!!! There is absolutely nothing similar - not even in the very specialist paediatric allergic clinic we go to at St Thomas which I suspect is top of its game. Good luck and thanks!

greenbananas Tue 14-Jun-11 18:37:06

How did it go???

(sorry I didn't see this earlier)

youarekidding Tue 14-Jun-11 21:33:31

Had an email - they are currrently writing their newsletter and will contact me about the next one. (email was a week old but I didn't check them so missed this one -sorry!)

I will definatly mention how diabetes have a psychiatric team but nothing is available when there are similarities. Most importantly I want to point out diabetes is about a diet in moderation but allergies mean some food are completely ruled out.

I also will mention about how some dc's (as is the case with my DS) become afraid of some foods. DS is a minor case as only ketchup he can't eat but he doesn't relax at parties when its rife. Allergies to food can totally dominate DC's lives, they are always on high alert and having to check foods. This has an effect on their emotional and social wellbeing IMO.

PLEASE write anything at all you want me to mention. Any ideas you have etc. I want to use this as an oppotunity to highlight the challenges allergic children face and the consequences and there fore highlight the need for psychiatric services.

I do have to say again this is thanks to BB and her thread.

pinkorkid Wed 15-Jun-11 18:22:02

I think there is a big cross-over with atopic conditions like eczema and asthma which many of our children with allergies also suffer from.

Asthma attacks can be incredibly frightening for a child and the fear of another attack often persists and can dominate a child's thoughts and determine their behaviour even when well.

The impact of eczema in particular is often under recognised.
A few points that spring to mind:

- self-conciousness and lack of confidence because of the impact on their appearance and wariness about the comments passed by others.

- impact of chronic pain and especially chronic itchiness - I remember, when my dm was undergoing treatment for cancer, reading some of the patient literature about side-effects where chronic itching was rated more distressing than pain, hair loss and many other more "obvious" negative side-effects.

- because eczema flares are so unpredictable and skin deteriorates so quickly but takes a long time to recover, children can understandably become disheartened, even despairing.

- the treatments necessary for controlling the condition are often unappealing, at times distressing in themselves - they can sting, the creams may soak through clothing, they can be time-consuming to apply.

- a lot of the attention the child receives from their parents is "negative" attention associated with their treatment.

- because they feel over-controlled by their condition and its treatment, they may react by refusing to comply with the treatment, and by extension refusing to comply with any other demand from parents or teachers.

- they may resent feeling different/ being treated differently to their siblings/ friends - having to avoid particular foods, clothing or activities.

- they may attempt to use their condition to manipulate others.

As BB says there is no professional psychiatric support in place that is readily accessible for children with these conditions, comparable to the psychiatric nurse as part of the diabetic team. None of the allergy specialists who treated my daughter felt qualified to treat the psychological impact of the condition and so they referred her case to CAMHS - child and adolescent mental health service. However, in our experience they say their remit is to treat children with a specific mental health diagnosis or symptoms which suggest that such a diagnosis is likely. Initially they refused to assess her, instead advising us to urge dd to accept her treatment. After we and the eczema specialist queried this, they agreed to assess but there is a 9 week wait for an initial appointment and no guarantee that we will get help after that. Certainly it is by no means easy to access appropriate help.

youarekidding Wed 15-Jun-11 18:36:26

Thanks pink. AAIR the charity is allergy and asthma so definatly what you've said above about all atopic conditions is what we should be getting across.

I know originally we were talking about food which my DS doesn't have allergies too (except mild with ketchup) but I know atm alot of our children are suffereing with the pollen - which is affecting DS as he wants to play out with friends - and also I know BB DS is airbourne allergens like mine. I want to get this point across as well that with airbourne no-one can actually actively avoid them - therefore theres always the air of concern about.

I really want to hammer home (just as voice for our dc's) the effects allergies have and the lack of services to support DC's.

It's sad to hear Pink you basically got the advice to tell your DD to suck it up.

pinkorkid Wed 15-Jun-11 21:15:13

Yes, my reaction was a bit hmm "why didn't I think of that?" at their advice but not really a huge surprise as I know their resources are extremely stretched even with those children who do have a more obvious need for support. (We have experience of CAMHS with dd's older brother who has Asperger's). But it is frustrating that we're so far from the ideal of holistic treatment for our dcs.

topiarygal Thu 16-Jun-11 09:23:25

You are GREAT for doing this so my bit:
As a mum - issues are: the stress of constant oversight, the thought of losing a child, the lack of control over the problem.
I would have a panic attack about 2 weeks after my son had an allergic reaction. The stress of the event and then dealing with all the lovely people who'd want to talk about it took quite a toll on me. I was fortunate enough to have a GP who realised the stress I was under and she suggested a stress-management course for me.

As a child - issues are: why can't they eat /do what others can, why are they different, fear of needles, fear of death. My son is now 8. He is idiopathically anaphylactic, allergic to nuts and kiwi, and has had anaphylactic reactions since he was 5. I think the trauma of allergies is different for those children who have had reactions. He understands the consequences of eating the wrong foods so will actively avoid them and finds it easier to understand why he can't have certain foods even though he covets them hugely! He is terrified of needles - something I reckon we can work on. And re death, he is aware that he's come close to being lost a few times, he can't fathom it - it'll get harder as he gets older.

hope it helps

auntevil Thu 16-Jun-11 14:35:11

I have always thought that in not providing any forms of decent ongoing support for our DCs is because of the NHS's belief that our DCs will 'grow out of it' . The NHS seems to take a very short term and re-active approach to allergies and intolerances.
2 of my DS have now realised that if they pick at their food, and don't eat much, they can control their bowels for a longer period of time. How can this ever be an acceptable long term strategy? How will this affect them going into adulthood? From experience, having similar issues, is that food governs your every day. Going for a day out is a military operation. There is no normal reaction to any activity related to food.
Would it have made a difference to have had some counselling? I think that perhaps awareness and understanding courses and support groups for children would have made a difference. Growing up where you're the only one that can't have something automatically makes you feel different and sets you apart. I would have loved to have met other children that were in the same situation as me.

greenbananas Thu 16-Jun-11 16:43:13

youarekidding, well done for all this!!! Some really good points raised above.

As pinkorkid says, eczema and asthma can be very difficult for children in all sorts of ways, and counselling would be really helpful in many cases.

Also, auntevil is right about the 'they will grow out of it' attitude - not all children do grow out of their allergies and, even if they do, they still need help to deal with the allergies while they do have them.

I think that children who are at risk of anaphylaxis are in particular need of counselling. Living with a live grenade in your pocket can be extremely hard to deal with, and very allergic children also have to cope with watching their parents get scared about their safety (which is a horribly big burden for any child to bear). Continually being on 'high alert' can be ever so draining for all concerned. If funding is tight in the short term, I feel that counselling should perhaps be concentrated on dealing with children who are at risk of anaphylaxis (constant danger of death!!!), but with a view to extending the service more widely in time.

For children who have food allergies, the comparison with diabetes is a very fair one - not being able to eat the same diet as their friends, seeing food as a potential enemy... but I would argue that children who are at risk from anaphylaxis face an even greater psychological burden than diabetic children (just one bite of a particular food might land them in hospital or even kill them). Children who are at risk of anaphylaxis from contact with 'environmental' things (pollen, dogs, horses, dust) or are idiopathically allergic face an even greater challenge - they cannot even learn how to assess the risk accurately, and might live in a state of fear if their allergies are not managed quite amazingly well.

I think it could be useful to ask one of the big allergy organisations to bid for for a grant from the NHS so that they can commission some 'targeted' counselling services. This might mean recruiting specialist staff at the allergy organisation to train existing children's counsellors at the NHS, and/or perhaps providing counselling services 'in house', such as allocating a trained specialist allergy counsellor in each geographical area (plus telephone counselling for parents and good links to local support in each county).

It's a big undertaking, and youarekidding, you are amazing for trying to get the ball rolling smile smile

babybarrister Thu 16-Jun-11 17:12:28

greenbananas - I totally agree with your points. my DS sometimes has to calm me down when I am asking him if he is OK ....

for me support groups are a mixed blessing having been to a couple of things - sorry to be heartless but it is really no help to talk to parents who are even more anxious than I am as it just makes it worse for me! I have read an article about the Goldilocks approach ie not too much, not too little in terms of anxiety re risk assessment ... if only we knew what the right level was!

anyway very happy to support and I think that targeted counselling is an excellent idea

the hospital where there is a psychiatrist who is a member of the Diabetes team is Chelsea and Westminster as a matter of interest ....
Thanks again!

greenbananas Thu 16-Jun-11 17:35:52

mm babybarrister, I think I do agree about support groups. Although I have no personal experience of allergy support groups (there is nothing like that in my area), I can well imagine that if a dozen of us met up to talk seriously about our fears, we could work each other up into a right tizzy and probably do each other more harm than good!!!

The way I see it, facilitating good and useful support groups would be part of the role of (hopefully) the allergy-organisation-specialist-counsellor in each geographical area. At a typical session, she/he could let us all have a lovely, cathartic rant with each other (for half an hour or so), and then tactfully help to direct the conversations into more positive channels, such as practical coping strategies... what do you think?

auntevil Thu 16-Jun-11 20:38:44

Support groups can work well - depends on the set up. have been to one for DS1 who has SEN and that not only allows the cathartic rants, but you can pick up excellent practical advice from those that have really experienced similar situations. It also has specialist speakers who can give legal advice, education advice etc on how to handle large organisations that spend a lot of time often in loco parentis (thinking school in particular here - but also hospitals etc)

youarekidding Thu 16-Jun-11 20:46:57

Off topic - topiary My DS sounds like he may be like yours. First signs of reactions mild at 4/5 the sudden severe reactions suggestive of shock and now carries epi-pens. Normal IgE and negative RASTS. My DS is certainly now beginning to get the fear factor (he's nearly 7). I'm not sure I help though. blush

I have read all your points - thanks for contributing.

This was not my thread to start with I just happened to have contact with people who will advocate for us. smile

When I speak to T when she rings I am going to load up this thread.

Now I would like to quote some of you if you give permission? I think we all need to be heard. I'm not sure though how to get us across as parents? Should I say we are all from MN allergies threads? If so do I need MNHQ permission? How do you want to play it.

I get a fit of nervous giggles everytime I think of my 'newsletter interview' and picture myself saying 'babybarrister drew to our attention......' grin

youarekidding Thu 16-Jun-11 20:56:54

greenbananas
The way I see it, facilitating good and useful support groups would be part of the role of (hopefully) the allergy-organisation-specialist-counsellor in each geographical area. At a typical session, she/he could let us all have a lovely, cathartic rant with each other (for half an hour or so), and then tactfully help to direct the conversations into more positive channels, such as practical coping strategies... what do you think?

For children who have food allergies, the comparison with diabetes is a very fair one - not being able to eat the same diet as their friends, seeing food as a potential enemy... but I would argue that children who are at risk from anaphylaxis face an even greater psychological burden than diabetic children (just one bite of a particular food might land them in hospital or even kill them). Children who are at risk of anaphylaxis from contact with 'environmental' things (pollen, dogs, horses, dust) or are idiopathically allergic face an even greater challenge - they cannot even learn how to assess the risk accurately, and might live in a state of fear if their allergies are not managed quite amazingly well

auntevil
I have always thought that in not providing any forms of decent ongoing support for our DCs is because of the NHS's belief that our DCs will 'grow out of it' . The NHS seems to take a very short term and re-active approach to allergies and intolerances.
Growing up where you're the only one that can't have something automatically makes you feel different and sets you apart. I would have loved to have met other children that were in the same situation as me.

pinkorkid
I think there is a big cross-over with atopic conditions like eczema and asthma which many of our children with allergies also suffer from.

topiarygirl
As a mum - issues are: the stress of constant oversight, the thought of losing a child, the lack of control over the problem.
As a child - issues are: why can't they eat /do what others can, why are they different, fear of needles, fear of death.

BB
Basically everything you said in the original thread - and I do think you should speak to the lady too - this was your idea.

The above are the things that have been said over and over and are the pertinent (IMO) points to get across.

babybarrister Thu 16-Jun-11 21:17:07

I am happy to be quoted or speak to them!

youarekidding Thu 16-Jun-11 21:29:19

Good, PM'd you and sent their details to you!! Speak away. grin

Is it wrong I want to do a little song and dance about the fact we at last will be stood up and counted and heard. blush

eragon Fri 17-Jun-11 11:59:47

my son has had counselling, we went to his allergy clinc and asked for a recomendation. which our doc did, passing him on to a child psychologist (sorry sp!) who had experience of allergies in his children. He then in turn wrote a detailed report after talking to us all, which he passed on to a more local clinic near us.

our son had lots of issues , not just the time he had his first epi pen, and knowing he was dying during this severe reaction, but was also being bullied at school and we had a death in the family. it was a very hard time for us all.

he attended for months, and sometimes i didnt think his counseller 'got it' but it all helped him think in a more positive way. I wouldnt rule out sending him back if he starts to find things difficult again.

when he was younger , around 5, he was going to have his first food challenge, but the counsellor at the time, said something so stupid, i had to stop her and had to spend the remaining time explaining what ige allergies were, and that this wasnt just a fear of hosptials, he was frightened of being made to eat a food that could kill him. she said, ' just like your allergies eating a small amount will make you get better'
we left and didnt go back after that, very disapointing.
I wish we had this sort of support available to us as a family, as the impact is so huge on every member of the family. but its seems impossible for a great many of us to get near a decent allergy doc, let alone get help like this.

greenbananas Fri 17-Jun-11 12:21:46

eragon, I'm glad that counsellor did help your son to some extent. Your story is a really good example of why childen who have life-threatening allergies should have access to counsellors who have a good understanding of allergies. A counsellor who does not have a good grasp of the issues might actually place a child at more risk...

freefrommum Fri 17-Jun-11 16:57:54

This is such a great idea and so important. I agree that this should be about all atopic conditions (allergies, asthma and eczema) Here goes.

Issues for child: being 'different', not being able to do same things as other kids (eg eating out, face painting, going to friends' for tea, visiting the farm etc), bullying esp. worrying increase in 'allergy bullying' where kids are deliberately trying to expose allergic kids to allergens eg putting nuts in drinks or waving in their faces etc (some kids with anaphylaxis recently went to Downing Street to talk about their experiences of this), FEAR... of food/needles/hospital/death, social exclusion particularly as others are (understandably) reluctant to look after them (as soon as you mention epi-pens!), weight of responsibility from a young age, time spent in hospital (missing school/friends, feeling scared/bored/fed up etc), being constantly pitied or viewed as 'ill', psycholigical impact of chronic itchiness/burning skin due to eczema (difficult to sleep/eat/concentrate)

Issues for parents: CONSTANT fear/worry/anxiety/stress, having to monitor child very closely at all times, difficult to ever have a 'break' as others are reluctant to look after allergic child, having to constantly plan ahead and be thoroughly prepared at all times (no spontaneity), trying to balance the need to keep child safe with the desire for child to live a 'normal' life, constant 'battle' (eg to get diagnosis, be taken seriously, get right medication, support, advice etc), worry about being seen as neurotic and over-anxious, terrible feelings of guilt esp. when our child gets ill (blame ourselves), difficult to eat out/go on holiday, lack of sleep due to child being up in the night scratching/wheezing

I work in the disabilities field and lots of the issues are very similar to having a child with a disability. Counselling is usually offered to parents who have just received a diagnosis of severe disability for their child but nothing for anaphylaxis. Anyway, that's all I can think of for now. Feel free to quote me if you want.

youarekidding Fri 17-Jun-11 18:24:37

freefrommum I also work in SN field. I'm an LSA in PMLD/SLD school and yes your right about the comparison.

I would draw from anaphalaxis though is that its the not knowing. Theres always the worry of what if/ maybe.

I actually think I'm becomming more neurotic blush as DS seems to be better. It seems the more well he is the more I worry something will suddenly happen - perhaps if I let my guard down? - as his last reaction came out of no-where from nothing.
I actually took DS to GP tonight as again he has been snotty for a week and puffy under eyes. He is fine but a little agitated. He loses his voice throughout the day and seems to make a whistling when he breathes. Again chest fine no redness in throat/ ears etc when GP checked. GP looks at bit hmm at me and says theres are lots of colds about atm and if he seems fine then he probably is. Thing is when I took him to pharmacist for some snuffle stuff pharmacist looks at his eyes and says looks like allergy. <sigh>

<bows to collect medal for most neurotic of the week> grin

freefrommum Fri 17-Jun-11 19:40:44

youarekidding I totally agree about feeling like you can never let your guard down and oddly feeling more anxious when they seem to be better <sigh>

Have just thought of something else to add too, the effect on siblings. Again, this is very similar to siblings of disabled children: feeling like all attention is focused on the child with allergies, feeling responsible for their sibling/having to watch out for them etc, difficult to watch sibling suffering/ill/hospitalised, feeling guilty (why them not me?)

youarekidding Fri 17-Jun-11 22:04:15

Some input from parents who have more than 1 DC would be helpful for me to add comments. My DS is an only child and I'm sure BB's is too.

T from AAir has emailed to say newsletter it quarterly and next one is autumn. So will do the piece about Sept time. I think it would be handy for those of you with food allergic DC's to give me some info for article about how xmas/ party season is hard for dc's and parents.

eragon Fri 17-Jun-11 22:39:40

its the complicated collection of problems that allergic children have that impact the family.
the siblings do suffer from lack of attention, due to the whole allergy package, the eczema and asthma that lead to lots of sleepless nights, and daily ezcema routine. the time spent cooking, and shopping is more than normal.

the social impact, for instance, we stopped going to the sea side with our family for a few years, as our son would just hive up on the beach or in the sea.

all holidays had a huge element of self cattering, and when we did go to resturants , we have to be picky , and try a few before we eat iyswim.

my older boys wittnessed some of our sons severe reactions, and understood the severity of it, and were over anxious about him, which didnt improve his ability to cope! the whole family needs to have support.

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