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 Post subject: Re: Play group situation
PostPosted: Sat Mar 12, 2011 11:28 pm 
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Joined: Fri Feb 11, 2011 7:03 pm
Posts: 22
I love the five steps and bc 2007's story of fighting the good fight. Re:
"I really must give credit for my actions to all my friends here on the forum. I was a frantic panicked, over reactive mess 3 years ago. I have learned from you all how to articulate my thoughts in a way which is beneficial for not just ds' s needs in a particular situation but in a way that will help all allergic children."

I feel like I am this mess now. My DS had a mid-level reaction to heaven's knows what yesterday and it just keeps coming back as soon as the benadryl wears off. (huge welts on scalp, dozens of tiny hives in a flushed cheek, eyelid purple and swollen) can he breathe? yes. is he scratching? no. is it slowing him down? barely. he's just cranky and out of sorts but then happy to be dancing around with his elmo doll the next instant.

Will I actually get used to living like this? Every time I see the hives coming up suddenly and multiplying, I'm right back to July 7th when it all happened so quickly and the ambulance came. Will I actually get used to having kids eat cheerios beside my kid without wanting to scoop him up and spirit him away to a safe high tower somewhere?


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 Post subject: Re: Play group situation
PostPosted: Mon Mar 14, 2011 9:08 am 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
Tiffrench,
Quote:
My DS had a mid-level reaction to heaven's knows what yesterday and it just keeps coming back as soon as the benadryl wears off. (huge welts on scalp, dozens of tiny hives in a flushed cheek, eyelid purple and swollen) can he breathe? yes. is he scratching? no. is it slowing him down? barely. he's just cranky and out of sorts but then happy to be dancing around with his elmo doll the next instant.


Poor little guy. If you ever feel that a reaction isn't under control don't hesitate to use the epipen! There are no negative side effects to giving epinephrine. Benadryl masks the symptoms of a reaction. If a reaction is returning once the benadryl wears off the reaction might be worse than it appears.

I know how hard it is when they are too young to articulate exactly what symptoms they are having and you can only go by visual. Rash/hives/flushed cheeks in my opinion kind of go together, one system so to say. Once a reaction moves onto swelling or a change in skin color it is usually a sign that further systems are now being affected. And remember, more might be going on that you can't see. Our DS also could be covered in rash/hives yet he'd also just itch and keep playing. I think when they grow up having many reactions (small I mean with itchy rash/hives) it almost becomes a norm to them and they just go on with their day. I always had to remind myself (still do) that just because he appears to be doing fine I am not aware of how he is feeling inside and can't articulate to me.

I know how hard it is to determine with some reactions when it is benedryl time and when it is epipen time. My rule of thumb now (after a few incidents when I should have used the epipen !!!) is that if there are any further symptoms past rash/hives to use the epipen. Now that might be different for each person but after a few situations where I should have used the epipen our allergiest gave me those guidelines - due to the fact that DS with every reaction (big and small gets itchy red rash/hives). Of course if he was to have a reaction with just rash/hives but I could see it was escalating with even just those two symptoms present I would go ahead and use the epipen.

And as Susan often reminds us...if you pick up the phone to ask someone if they think you should use the epipen...it is probably time to use it! This may sound funny but most of us have done this, I know I have. I had read Susan post this exact thing once and it was that week I needed to use the epipen at playgroup . I actually picked my cell up to call my husband, was just about to dial when Susan's comment registered with me. I put down my cell and administered the epipen.
Ds's symptoms were gone in literally seconds, it was instant relief.


Tiffrench, you have had a lot of information to absorb in a short period of time. You are doing a great job!
:huggy

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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 Post subject: Re: Play group situation
PostPosted: Mon Mar 14, 2011 10:30 am 
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Joined: Fri Feb 11, 2011 7:03 pm
Posts: 22
Thanks so much for your response. It is so hard to make the judgement call. It seems to be getting harder rather than easier. I am alone with him most of the time. My husband works long hours and is away most weekends. My father happened to be here at the time. He kept telling me that it was nothing. Just a couple of hives. He's better already (when I could see that he wasn't)...I think I was side-tracked by my father's opinions. They have been supportive but also super critical. I am making it seem more serious than it is, I need to expose him to allergens more to toughen him up etc. There was a terrific article in the last allergic living that summed it up for me. It said something about how we are assigned roles as children, the flake, the drama queen etc and our families listen to us talk about allergies through this filter. Thanks for the moral support and encouragement. I am beginning to realize that I may not be getting enough of it in my life.


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 Post subject: Re: Play group situation
PostPosted: Mon Mar 14, 2011 10:58 am 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
Quote:
I think I was side-tracked by my father's opinions. They have been supportive but also super critical. I am making it seem more serious than it is, I need to expose him to allergens more to toughen him up etc. There was a terrific article in the last allergic living that summed it up for me. It said something about how we are assigned roles as children, the flake, the drama queen etc and our families listen to us talk about allergies through this filter


Tiffrench - that article you are referring to was AMAZING!!! SO so so true for so many of us!
You aren't alone in having to go against the well intentioned but INACCURATE 'advice' and 'suggestions' from family/friends. I have learned I need a very thick skin in dealing with ds' allergies and that the bottom line is ds' safety, I do what I need to do. If other people get hurt feelings or roll eyes or disagree well so be it. A hard thing to do but necessary.

Go with your gut, and if it others just don't 'get it' well, they will be the ones loosing out as most likely you would never leave your ds with them unsupervised or you might have avoid certain functions depending on the issues. I would HOPE that eventually most family/friends of allergic families even kind of 'get it', I would hope!!!

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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 Post subject: Re: Play group situation
PostPosted: Mon Mar 14, 2011 11:19 am 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6476
Location: Ottawa
Tiffrench wrote:
They have been supportive but also super critical. I am making it seem more serious than it is, I need to expose him to allergens more to toughen him up etc. I am beginning to realize that I may not be getting enough of it in my life.

They don't get it! Don't listen to them. You are the one searching out information. You are the mother, and know your child best. Do what you feel you have to. Giving the epipen when it isn't needed will not harm him in anyway. (He might be jittery but that's about it) Not giving the epipen or delaying it's use can prove disaterous.

If your family want to help, the can read this: http://www.allergysafecommunities.ca/pages/default.asp

If they aren't offering you support, they aren't being supportive. It's really as simple as that, isn't it?

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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 Post subject: Re: Play group situation
PostPosted: Tue Mar 15, 2011 9:27 pm 
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Joined: Fri Feb 11, 2011 7:03 pm
Posts: 22
yep. that sums it up, susan.

thanks so much for the thoughtful responses from bc2007 and yourself. i have been doing nothing else but replaying what happened this weekend through this broadened perspective. i really hate that i almost have to "prove" to my parents when cameron is having a reaction, pretty much debate the fact. i am realizing that they may be in denial about how serious this is. not because they don't care, but maybe because they care about us so much and just want it all to go away and get better soon. but i can't be swayed by their denial. i know my son best. good advice. i think my hubbie's denial has now transitioned into escapism with his willingness to work constantly. it's so funny. before becoming a mom i never realized how much women try to manage/accommodate the feelings of everyone else around them while also dealing with their own. geesh. we are kind of awesome:)


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 Post subject: Re: Play group situation
PostPosted: Tue Mar 15, 2011 10:24 pm 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
Quote:
before becoming a mom i never realized how much women try to manage/accommodate the feelings of everyone else around them while also dealing with their own. geesh. we are kind of awesome:)


:thumbsup :huggy :thumbsup

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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 Post subject: Re: Play group situation
PostPosted: Wed Mar 16, 2011 4:21 pm 
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Joined: Mon Sep 05, 2005 12:53 am
Posts: 375
Location: Alberta
I'm not sure if it was in the same article you are referring to, but something that seems to work for many families who have close relatives in denial is to ensure that these family members are witness to the next reaction.

My son had relatively mild reactions to milk through the toddler years - sneezing, hives, runny nose, vomiting, etc. Then it changed to anaphylaxis. His 2nd anaphylaxis was really bad, and since I couldn't get hold of my husband at his work (he was in a meeting - grrr), I called his mother to see if she could pick up my younger child from the hospital as I didn't want her to have to witness all of it. My MIL had ALWAYS been supportive, but when she arrived and saw my ds hooked up to monitors, sedated, and almost purple in colour, it changed her from supportive grandma to family allergy advocate. My FIL actually cried. My MIL said it was only the 2nd time in their 45 year marriage that she's seen him cry. She described my son's reaction - especially the fact that she had never seen a human being turn that colour - to just about anyone who would listen - including the extended family. While we never ban milk at family functions, no one bats an eye when I ask to see ingredient lists, and sometimes they'll even check with me ahead of time to see which turkey / ham / recipe I could suggest to make sure ds can eat with everyone else. And I always get asked to bring dessert so that he's never "left out" of the good stuff. No one questions my MIL!!

So call someone for backup in the event your child has another reaction, then they can see for themselves.

Hopefully your family gets on board soon. It's a slow process, and requires lots of education.


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 Post subject: Re: Play group situation
PostPosted: Wed Mar 16, 2011 5:10 pm 
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Joined: Sun Nov 30, 2008 11:00 am
Posts: 1119
That really does help to have someone from the 'older' generation be an advocate!

Our extended family often has the labels stacked for us ready to read and some now read the ingredients to find the best one for my daughter 8) . For desserts, we just ask what the host is making and then bring something similar for my daughter and anyone - actually, now that she cooks, she tries out new recipes this way :banana

_________________
me: allergic to crustaceans plus environmental
teenager: allergic to hazelnuts, some other foods and environmental


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 Post subject: Re: Play group situation
PostPosted: Thu Mar 17, 2011 5:54 pm 
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Joined: Fri Feb 11, 2011 7:03 pm
Posts: 22
I think the fact that my family all have had milder allergic reactions (hives, running noses, watery eyes) all their lives actually makes it more difficult for them to get how quickly things get crazy with my ds.

What I am getting from your messages is hope. And you can never have too much of that stuff. So thanks.


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 Post subject: Re: Play group situation
PostPosted: Thu Mar 17, 2011 11:57 pm 
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Site Admin

Joined: Mon Feb 07, 2005 6:39 pm
Posts: 2948
Location: Toronto
I've been so busy with the Spring issue - literally finishing it tomorrow, that I just stopped by to see how things were going for BC2007 and Tiff.

What a thread, you women are awesome... Tiffrench, you hang in there. Go with your gut and increasingly better knowledge of food allergies.

One small suggestion: we have a helpful tool for doctors to help with diagnosis, the cell phone camera. Take shots of little fella's symptoms - I know not exactly a Kodak moment, but it's a lot easier to "show" than "tell" when it comes to rashes and hives. And keep chatting, sounds like you do need the support. You need a shoulder lady, we're happy to provide.

Good luck with the family - speaking of learning curves. sigh and :roll:

_________________
Allergic to soy, peanut, shellfish, penicillin


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 Post subject: Re: Play group situation
PostPosted: Wed Mar 23, 2011 12:05 pm 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
Went to drop in this morning, the same staff member was working today who was on the day of the incident. She feels awful but I told her it was in no way her fault, can't control stupid people. Anyway, at the early years other location (they all work at both) she recognized the same 2 women who were at ds' table.

What she decided to do was to give a little, not pretend but lets call it a 'refresher' orientation to a fellow staff member (for the benefit of the 2 ladies) during snack time right in front of these two women. Saying things like it is their job and they are allowed to check snacks, that this is a peanut/tree nut free facility ALL the time NOT just when an allergic child is present. That all children, especially those with allergies must kept as safe as possible especially during snack time. That they have the right to ask people not to eat certain foods if they are unsafe etc.. That all children are welcome no matter their issues. .
Signs are also being printed right now which will be ready soon to put on all the doors. :lol:

I am really pleased with the way she dealt with these two women. It doesn't then make it just about ds but about ALL children with allergies or other issues.
:swing

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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 Post subject: Re: Play group situation
PostPosted: Wed Mar 23, 2011 2:55 pm 
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Site Admin

Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6476
Location: Ottawa
:rofl :happydance :banana
I had a feeling that staff would find a way... Your son is a sweety and anyone who knew him would be infuriated by that woman!

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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 Post subject: Re: Play group situation
PostPosted: Wed Mar 23, 2011 6:32 pm 
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Joined: Sun Nov 30, 2008 11:00 am
Posts: 1119
That staff member should be in the Hall of Fame!

I've used that tactic many times to educate others...

_________________
me: allergic to crustaceans plus environmental
teenager: allergic to hazelnuts, some other foods and environmental


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 Post subject: Re: Play group situation
PostPosted: Thu Mar 31, 2011 7:58 am 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
A letter came in the mail yesterday from the Minister of children/youth's services office. It said that the minister (Laurel Broten) did receive my email and that it was forwarded to a rep. for response. The letter states that

"The ministry carefully selects the agencies it works with to deliver services, including the Ontario Early Years Center programs. We strive to partner with organizations which have the capacity to create safe and welcoming environments for every member of our community"

They say that they are pleased to hear that the staff have supported our son's safe participation and that aside from this one incident our visits have been positive. I made it clear that I am happy with the staff...this isn't a staff issue.

The letter says that a rep. from the ministry DID call the program director to discuss this incident as well as the protocols "with regards to children with severe allergies ....monitored so they can participate safely in programs". I know our early years staff had a huge meeting about severe allergies after my incident to talk about what more can be done, if the current protocols are enough, more awareness such as the signage they are having printed etc.. :thumbsup

It ends with "We remain committed to support every child's participation..." :happydance

I hope that there is now more awareness in ALL early years across the province (and further of course). This isn't just about my ds, it is about ALL children with severe allergies.

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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