HELP ! QUIETLY GOING CRAZY

Posted on: Thu, 03/20/2008 - 12:42pm
BINNIE's picture
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Joined: 03/20/2008 - 17:59

My 3 year old son has been diagnosed with multi-allergies and twice resulting in anaphylaxis. A school nurse gave a presentation at my son's nursery, but I practically had to fight with our health services to sit in on it.

I explained to the health services that the general presentation on anaphylaxis by the nurse, with my experience and the nursery staff experiences of my sons reactions, we could try to achieve the safest environment for my son.

The nurse giving the presentation apparantly had a child who suffered from PA, but played down the seriousness of the anaphylaxis and stated 'it probably will never happen and there is minimal risk as he is there only 2 days per week'.

I explained not to down play this and was basically accussed of being a control freak - ALL WE WANT AS PA PARENTS IS FOR OUR CHILD TO BE SAFE!

Is it just me or the health professionals NUTS?

Posted on: Thu, 03/20/2008 - 12:50pm
Newallergymom's picture
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Joined: 03/09/2008 - 15:23

I am so sorry you had to deal with that. I have noticed that a lot of non PA/TNA parents and people really do downplay the condition, and think you are "acting crazy" by asking all these questions, or trying to explain the severity of the situation. We just need to remain strong and who cares if we have to fight people or look like we are crazy or going "overboard" its our childrens lives, and we are responsible for them!

Posted on: Fri, 03/21/2008 - 7:08am
Ivycosmo's picture
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Joined: 09/18/2007 - 09:00

I just posted about an allergist that said I "went overboard" etc, because I read labels before I feed my son and because I [i]still[/i] (gasp) check on him in the middle of the night. (He had an anaphylactic reaction in the middle of the night once and LUCKILY we checked on him and had enough time to rush him to the ER)
Go with your gut. No one cares for your son the way you do. If people think you are a control freak....so be it!!!! You are just a mom who is trying to keep her little boy safe. Good for you!

Posted on: Fri, 03/21/2008 - 10:29am
Kanji's picture
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Joined: 01/30/2008 - 16:26

I'm going to breathe a sigh of relief when there comes a time when there is a standard, recognised protocol for food allergies in schools and daycare.
I'm also glad the awareness of the danger of food allergies is growing, which will make it a little easier for us!

Posted on: Sat, 03/22/2008 - 7:58am
BINNIE's picture
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Joined: 03/20/2008 - 17:59

Thank you to everyone who has replied - I stumbled across this site at 2am (We live in Glasgow, Scotland) when I could not sleep due to frustration. I no longer feel isolated being a parent of a son with allergies. Thank you for the support. xxx

Posted on: Sat, 03/22/2008 - 9:19pm
williamsmummy's picture
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Joined: 03/26/2002 - 09:00

hello Binnie
i am a poster from the UK.
I know that there is little in the way of support for those with severe allergies in scotland.
Trained school nurses just seem to cover what to do in an emergancy, and that training is patchy to say the least. Prvention or management is not an area of training.
The anaphylaxis campaign runs school nurse training courses. Get details from the campaign and pass them on to your educational authority. It wont cost them a penny and is a professional training course for nurses.
Its also worth remembering that as a teacher, you VOLUNTEER for epi pen training, and its a fine line between scaring a person who has the care of a severely allergic child, or not making the point clear about the severity. It's a tricky area.
The aim is to get the staff informed and confidant.
I would stress that your best aim is to point out your childs reactions so far, and that each child with allergies is individual.
Ask for what you want, and stress that this is what you have had to do to keep your child normal and reaction free.
Talk about 'comfort zones'that are judged on your childs previous reactions.
Add that it may change in the future, as he/she grows older, but this is what we have to do NOW.
support the staff by providing equipment, like safe empty boxes for craft work. Or by asking to provide safe cooking ingrediants etc.
Support them as much as possible, so that it's a two way working relationship. Keep it friendly, keep talking to them, and THANK THEM (real over top stuff!!) when they get it right by checking things with you.
Hope this is helpful.
sarah

Posted on: Sun, 03/23/2008 - 1:55pm
Krusty Krab's picture
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Joined: 04/20/2007 - 09:00

You're not nuts. This particular health professional was being dismissive.
[b]Keep it friendly, keep talking to them[/b]
Yep.
[b]THANK THEM (real over top stuff!!) [/b]
No way. I used to do this, but then over the years I came to realize, that it's their [i]job[/i] and I'm not going to gush over their doing what they're supposed to be doing. Sorry...JMO.

Posted on: Sun, 03/23/2008 - 11:17pm
williamsmummy's picture
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Joined: 03/26/2002 - 09:00

every one likes to be thanked for doing their job, and if you PERSONALLY take the time to do this, they are more likely to go that extra for your allergic child.
So yes friendly, yes thank them. IMO

Posted on: Mon, 03/31/2008 - 6:53am
Mrsdocrse's picture
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Joined: 01/16/2007 - 09:00

Sorry that you do not have the support that you deserve. Keep talking to them. Be polite and I agree, thank them for thier support and really ask them for there help. they tend to respond better to "asking them to help keep you child safe, rather than demanding that they do what you want". Food allergies are going so fast that I cannot imagine this problem going away any time soon. I am VERY lucky I live in a community that really tries to help all the kids... including the PA kids. The school my son attends is peanut free.. but the middle and high school are not but they do make some accomodations for this as well.

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