Update...spoke to allergist(about 504)

Posted on: Thu, 03/08/2007 - 6:22am
chanda4's picture
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Joined: 12/14/2006 - 09:00

Okay, I have started the 504 process(as most of you know, I post many questions about it).

I have 2 allergists I have been working with on this...Dr A who my son has seen since age 1 up until last summer when we got new insurance(he works at Children's Hospital and National Jewish, I highly respect him). I have faxed him sample letters, examples and asked him to write a letter for Jake's 504....that was back in Dec.

Then Dr B is our new allergist(with Kaiser), not as *specialized* as the other, but I got him to sign a letter I got from this board and turned it in for the 504. He signed it, but I don't think he fully understood it!

So today I FINALLY got a call from Dr A....he appologizes that this is taking so long, but he wanted to speak with me further reguarding the 504. Basically he said he doesn't believe in them. That doing so will do more harm for my son then good. He would happily speak to the nurse or principal and explain a few necessary precautions(washing hands, cleaning off tables in the classroom etc...) but he didn't see a 504 neccessary and one expample he gave was that anaphylaxic reactions don't come from contact exposure. If my son knows not to eat something, then a severe reaction is highly unlikely etc......

After my conversation, I am still going ahead with the 504, but I did agree to have both my boys contact challenged. I did agree that being afraid of something that *might* never happen doesn't make sense. If in the challenge they can rub peanut butter and egg all over him and nothing happens....then I will let this rest, I can see it would be pointless to have a 504 in place for a problem that didn't exist. BUT.............if a reaction does happen, I will have proof, and I think that proof will help me(and the doctor and the school) understand just *what* can happen.

So.....do you think this is stupid??? I am upset he wasn't behind the 504(Dr A) but I can see his point, what if nothing happens, it would be stupid of me to have some document and team brought together to keep him safe from something that doesn't cause a reaction. I should have done a challenge before school started, then I would know *where* we stand.

I am also going to contact test my 3yr old to milk...I want to know *how* careful I need to be when he enters preschool next year, and Kindergarten the year after....will I need a 504 for him...I geuss we'll see how he reacts.

I posted this to get some feedback...do you agree, disagree...would you challenge or forget about it??? I am just curious, I need to get opinions of others who *know* food allergies, who *know* reactions and also know school settings. What would you do??? Thanks!!!!

EDIT..okay I just called DrB's office and he does not agree in doing any sort of challenge, he says they are too young and it's pretty pointless. The nurse did say the letter I had him sign needs to be respected by the school. So I don't know what to do now....two totally different opinions to consider. HELP!!! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
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Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig and EE)
Savannah-1 (milk and egg)

[This message has been edited by chanda4 (edited March 08, 2007).]

Posted on: Thu, 03/08/2007 - 6:37am
gvmom's picture
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Joined: 08/24/2005 - 09:00

[b]I did agree that being afraid of something that *might* never happen doesn't make sense.[/b]
Do you wear a seatbelt? Do your children have carseats & booster seats?
Do you want an honest opinion?

Posted on: Thu, 03/08/2007 - 6:49am
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

Honestly? What are [i]YOUR family's reasons[/i] for wanting/needing a 504?
Do you feel that allergist A understands fully what your child faces at school?
I'm inclined to think that allergist A, while perhaps well-meaning, has not been sufficiently enlightened about the issues that come up when you [i]don't [/i] have a 504. An IHP alone is [i]not enough[/i] to deal with exclusion, bullying, and a [i]HOSTILE learning environment[/i].
Without a 504, your child can [i]legally[/i] be harrassed about his allergy. Even in 'officially sanctioned' ways like blatant exclusion or humiliation by school staff. While we'd all like to [i]think[/i] that it would never happen in [i]our[/i] 'wonderful' school-- the fact remains that it happens to [i]somebody.[/i]
Do you honestly want a school administrator or classroom teacher to be the one deciding that your child needs to go sit in the hall for an unsafe class party? For a science field trip? How about for breaks during testing? NO? Then pursue the 504. The difference isn't in the 'safety' or 'accommodations.' It's in the emphasis on protecting your child's civil rights and emotional well-being. How unfortunate that your allergist (who otherwise sounds like a physician you really trust) doesn't understand that point. He may be a research hotshot... but something tells me that allergist B has spent more time in the trenches on this one.

Posted on: Thu, 03/08/2007 - 6:54am
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

I also feel the need to point out that there is a WORLD of difference between [i]"unlikely to happen"[/i] and "cannot happen."
If I walk everywhere I go, then naturally seatbelt use isn't high on my priority list. But I don't. I have been in three motor vehicle accidents in my life. One of them serious. I was wearing a seatbelt each and every time... and while my driving record would argue differently, I truly believe that every time I put my vehicle in gear, it could happen again. It's why I wear my seatbelt.
But actuarial science suggests it is probably overkill on my part. It is 'highly improbable.' But it is a precaution [i]I can take.[/i] So I do.

Posted on: Thu, 03/08/2007 - 7:18am
ajas_folks's picture
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Joined: 04/28/2000 - 09:00

Chanda -- I re-raised the great thread about why NOT getting 504 for PA child is doing him/her disservice.
Go thru it & condense down to *your* 4 most important &/or compelling reasons to have 504 protection for your child.
I took the liberty of listing #1, but only to really let you know where I stand on this as to public school & protection of PA child --
[b] #1 -- I want my child to come home ALIVE each & every day. [/b]
You go from there.
Ever asked allegist what HE would want if PA child were HIS child????????!!!!!!!!
Better quit there,
Eliz
------------------
~Eli[b]Z[/b]abeth,
Mother to 2:
DD age 5, NKA, treated as though PA/TNA
DS age 8, PA, possible TNA, Latex, legumes?
(PA diagnosed & ana reaction 1999)
Member here since 2000
[This message has been edited by ajas_folks (edited March 08, 2007).]

Posted on: Thu, 03/08/2007 - 7:32am
chanda4's picture
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Joined: 12/14/2006 - 09:00

Thank you!!! For posting so far. I will re-read the disjutice thread, I think that will help me re-focus.
------------------
Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig and EE)
Savannah-1 (milk and egg)

Posted on: Thu, 03/08/2007 - 9:13am
Carefulmom's picture
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Joined: 01/03/2002 - 09:00

I agree with everything Corvallis Mom said. I went 25 years without a car accident. I had a perfect driving record. Then one day a car on the wrong side of the road hit me. I would not be here to type this if I did not have my seatbelt on.
One more thing that really bothers me about this. The majority of life threatening food allergy reactions are from MISLABELED PRODUCTS, products that the person thought was safe but there was a mistake, or products that were may contains and not stated. It isn`t enough that your ds knows not to eat food that he should not eat. My dd has never once eaten foods that were not in her lunchbox, yet she has had several reactions. The big one (you were not on the board yet) was a Van De Kamps product that contained milk, but milk was accidentally left off the ingredient list for NINE MONTHS!! She was on the way to outgrowing milk allergy when this happened, and due to this she will probably never outgrow it. There were also several reactions to items on shared equipment and not stated (now I call manufacturers much more ever since). Reactions happen all the time from items where the manufacturer made a mistake. Does allergist A not read the FAAN Newsletters? Because there are recalls at least once a week of mislabeled products. I say get the 504. You are much more likely to have regrets over not getting it than you are over getting it.
By the way, our school was great with accomodating the pa from kindergarten through 3rd grade. But in 4th grade we got a teacher who did not take the allergies seriously at all. Without a 504, she could have done whatever she wanted. With the 504, well honestly, that 504 was the only thing that kept her in line.

Posted on: Thu, 03/08/2007 - 12:38pm
notnutty's picture
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Joined: 03/15/2004 - 09:00

Chanda: I am just thinking this through a little and the first thing that came to my mind was "why the challenge?". The thing that I have learned about contact reactions is that they don't always stay a contact reaction. For example, what if your son touches something contaminated with peanut butter...contact reaction, right? What if he then puts his hands in his mouth? Is it still a contact reaction then or does the reaction turn into something more severe.
It may be helpful to know if your son reacts to peanut butter rubbed all over him...but are they going to put it in his eyes or in his mouth just to mimic "what could happen?" KWIM?
Although an office food challenge could be helpful to understand your son's allergy better, I don't think this type of challenge could necessarily rule out any type of accommodations necessary to keep your son's room peanut (or food) free.

Posted on: Thu, 03/08/2007 - 12:43pm
chanda4's picture
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Joined: 12/14/2006 - 09:00

Quote:Originally posted by notnutty:
[b]Chanda: I am just thinking this through a little and the first thing that came to my mind was "why the challenge?". The thing that I have learned about contact reactions is that they don't always stay a contact reaction. For example, what if your son touches something contaminated with peanut butter...contact reaction, right? What if he then puts his hands in his mouth? Is it still a contact reaction then or does the reaction turn into something more severe.
It may be helpful to know if your son reacts to peanut butter rubbed all over him...but are they going to put it in his eyes or in his mouth just to mimic "what could happen?" KWIM?
Although an office food challenge could be helpful to understand your son's allergy better, I don't think this type of challenge could necessarily rule out any type of accommodations necessary to keep your son's room peanut (or food) free.
[/b]
I actually agree with you 100%! When people say *contact reaction* I often wonder myself..well, how do they know they didn't rub their eyes, or put their fingers in their mouths. My son would...if he's itchy, he rubs, when he's nervous, he sticks his fingers in his mouth(he just did tonight at the skating rink...I had him go wash a few times). So the more I mull this over, I think what is the point, unless the contact challenge would consists of an ingestion as well. For my 3yr old, if his milk levels drop, I may consider it, but for the 6yr old, I know he reacts so I am seeing it would be pointless(because most likely if he is touched with pb...he's goign to end up getting it elsewhere!)
Thanks for your opinion too, I appreciate it, this is helping!!!
------------------
Chanda(mother of 4)
Sidney-8 (beef and chocolate, grasses, molds, weeds, guinea pig & asthma)
Jake-6 (peanut, all tree nuts, eggs, trees, grasses, weeds, molds, cats, dogs, guinea pig & eczema & asthma)
Carson-3 1/2 (milk, soy, egg, beef and pork, cats, dog, guinea pig and EE)
Savannah-1 (milk and egg)

Posted on: Thu, 03/08/2007 - 11:09pm
NicoleinNH's picture
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Joined: 06/21/2003 - 09:00

Outofhere [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
[This message has been edited by NicoleinNH (edited June 09, 2007).]

Posted on: Fri, 03/09/2007 - 1:02am
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

Chanda, it really sounds like allergist A (who you have described as fairly prominent) [i]is[/i], as Nicole says, 'biased' against using 504 for severe FA.
If you are up to it, would you consider providing him with educational materials that explain [i]why[/i] it is the most appropriate means of providing accommodations? I think you'd be doing his other patients (and anyone else he encounters) a huge favor if he gained a better appreciation for legal and practical reality on the subject.
Please show him AAAAI's position statement, AAFA's webpage, and materials from OCR which specifically identify "life threatening food allergy" as a "hidden disability." I have to think that he simply doesn't understand what the law says on the matter.

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