Would you allow your child/ self to particpate in a research study?

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To compliment the thread about the cure for peanut allergy.

Would you agree to participate in or allowing your child to participate in a scientific research study (peanut allergy or other medical condition)? Why or why not.

Would there need to be certain conditions? Would you allow participation in a drug study?

Would you be willing to participate in say a research study such as an inhalation peanut challenge?

Would you undergo an invasive procedure in the name of research, such as a bronchoscopy looking at airway remodeling in asthmatics, if it meant possibly helping yourself or furthering scientific research (ie helping other people)?

Allison

On Feb 3, 2004

When my daughter was 2years old she was going to participate in an Asthma Study for Children. Can't remember everything but basically, it was to determine the effects of Flovent on children's lungs. To see if there is scar tissue with or without Flovent being used, etc etc. One group would be given a placebo and we knew that was a possibility and we wouldn't know if we had the real medicine or the placebo. However, my infant son started following in his sister's illnesses and we came to a point where we couldn't take the chance that our daughter would get the placebo and her condition would not improve.

It was a tough call, we knew she would have regular medical check ups, and the study would end if she was in any trouble. However, at the time we wanted immediately relief and so decided to opt out of the study.

The Doctor over seeing the study is a fabulour doctor, a straight forward doctor, blunt and to the point. He has since moved to the USA to continue his practice.

On Feb 3, 2004

Quote:

Originally posted by ajinnj: [b] Would you agree to participate in or allowing your child to participate in a scientific research study (peanut allergy or other medical condition)? Why or why not. [/b]

We won't even let our son have a scooter. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]We'd have to examine the study. We'd also have to discuss it with a medical professional (most likely his pediatrician) [i]not involved in and having no certain vested interests[/i] in the study. Ultimately we, My husband and I, would have the final opinion, but we would also desire input from a medical professional who has cared for our children from a very young age. We also would take into consideration our childrens' input. A "no" from our child would be an automatic "no" from us. [i]At any age.[/i]

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Originally posted by ajinnj: [b] Would there need to be certain conditions?[/b]

Absolutely.

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Originally posted by ajinnj: [b] Would you allow participation in a drug study? [/b]

We'd have to examine the Risk Vs. Benefit. There also would have to be the potential to meet a direct immediate need of the child involved, a very significant need (imminent death without intervention?), and the Benefit would have to outweigh the Risk. All other options to meet this very significant need would have to be exhausted. A qualified, licensed physician who had my childs' vested interest would also have to examine this and give us input. Maybe even consult with others of the same calliber or above, who had my child's vested interest at heart.

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Originally posted by ajinnj: [b] Would you be willing to participate in say a research study such as an inhalation peanut challenge?[/b]

My children? Purposely? [i]No.[/i] Maybe it's just me.

Quote:

Originally posted by ajinnj: [b] Would you undergo an invasive procedure in the name of research, such as a bronchoscopy looking at airway remodeling in asthmatics, if it meant possibly helping yourself or furthering scientific research (ie helping other people)? [/b]

In the name of Research, alone? My children? [i]No.[/i]

In the past several years, I had some medical [i]issues[/i]. Saw a great deal of specialists. Begged to be bronched. [i]Begged.[/i] No Pulmonologist would do it. However, there were a great deal of other diagnositic tests [i]they were willing to do[i] in search of [i]a reason/finding[/i] indicating a [i]bronchoscopy[/i] was necessary/indicated. Thousands and thousands of dollars worth of diagnositic testing. (Did find out a few things along the way.) It provided me with a little solace/reassurance/new information. The pain is more tollerable now. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Good Questions. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Disclaimer: I am not offering advice in any manner or form. Just relaying what I [i]possibly do in *my own personal/unique/highly individual situation[/i], as is *my right*. (ie: the right to choose)

[This message has been edited by MommaBear (edited February 03, 2004).]

On Feb 3, 2004

In addition to the above post by myself, I'd also have the criteria that no treatment of [i]known[/i] benefit to the condition being researched be purposely withheld/not offered as a condition of the research. WRT *my own, personal, highly individual, and unique situation.* [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

[url="http://www.eurekalert.org/pub_releases/2004-01/uocm-pct123103.php"]http://www.eurekalert.org/pub_releases/2004-01/uocm-pct123103.php[/url]

Disclaimer: i am not offering advice in any manner or form. I do not guarantee the accuracy content or currentness of the link in this post.

On Feb 3, 2004

Quote:

Originally posted by ajinnj: [B]Would you agree to participate in or allowing your child to participate in a scientific research study (peanut allergy or other medical condition)? Why or why not.

No I would not. My child is not a guinea pig.

Quote:

Would you allow participation in a drug study?

No. I do not trust drug companies at all.

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Would you be willing to participate in say a research study such as an inhalation peanut challenge?

My daughter breaks out in hives from inhaling walnuts/pecans in the store when we walk past the open barrels.

Quote:

Would you undergo an invasive procedure in the name of research, such as a bronchoscopy looking at airway remodeling in asthmatics, if it meant possibly helping yourself or furthering scientific research (ie helping other people)?

As an asthmatic I can tell you the thought frightens me. I have been controlling my asthma with herbs now for two years. No inhalers , no steroids .

On Feb 3, 2004

Probably not. I don't trust being a guinea pig. Though if for example their disease was fatal with no cure (like a cancer) I might try research trials as a last resort.

On Feb 3, 2004

How about a yes. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Im tired of negativity [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Caitlin in a pre-fda approval for Elidel when she was 11 mths old. She used it for 6 mths, and no reactions, helped her eczema. Then they got the FDA approval and that was that.

We got a $25 g/c to bread and Circus each mth for going in.

There was another study for PA children. We said no. Theres a BIG difference between a cream for eczema and peanuts. We'd pass on anything harmful sounding.

Jason Caitlin 4-17-00 Allergic to Dairy, Egg, Wheat, Bananas, Grapes, Rye, Sesame, Beef, Garlic, Mustard, Onion, Peas and Avoiding Latex and all Nuts Sara 2-13-98 NKA (avoiding nuts) Meghan 2-28-03 dx'ed Reflux - Alimentum feeder, Zantac - 1.5ml 2x/day - RAST neg. for everything. [url="http://community.webshots.com/user/jtolpin"]http://community.webshots.com/user/jtolpin[/url]

On Feb 3, 2004

Personally, I absolutely would participate in any university (not drug company) research study into peanut allergy, asthma, or autism/Asperger's.

I don't see it as a 'guinea pig' scenario. What I see, especially with the autism studies, is providing doctors and scientists with data and information in order to eventually figure out both cause and cure for these disorders. Looking for similarities in the disorder among as many people with it as they can get medical workups on. Kind of like voting, I see these kinds of research programs as being more a duty than a right. But, that's just me.

I'm not sure how I'd feel about being included or requested to be involved in any 'drug' studies. I'm not 'for' medicating unless absolutely necessary.

~Melanie

On Feb 3, 2004

Quote:

Originally posted by MeCash: [b]Personally, I absolutely would participate in any university (not drug company) research study into peanut allergy, asthma, or autism/Asperger's.

I don't see it as a 'guinea pig' scenario. What I see, especially with the autism studies, is providing doctors and scientists with data and information in order to eventually figure out both cause and cure for these disorders. [/b]

*Personally Speaking?* and regard to autism/Asperger's on *my* end of the spectrum:

[i]I don't need to be *cured*. I don't want to be *cured*. I am not broken or defective.[/i] My children are not broken or defective. Neither is my husband. You would not believe how many women wish they had a mate *like him*. (Warning: shameful plug comming on.........)

If the world was going to end today, I'd be dam^ glad he's mine. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] Mine. Mine. Mine. I'm glad either way. Ya know, he is about the most sincere, honest, trustworthy human being I know. And he is dependable to a [i]fault[/i]. [img]http://uumor.pair.com/nutalle2/peanutallergy/tongue.gif[/img] I have yet to encounter a circumstance where *he doens't come through for me*. That's called a [b]man[/b]. He loves me and *I can tell*. He is exactly like my father. My children are exactly like him. I am in *heaven*. Ya know what's cool? [b] We can argue/debate/[i]discuss[/i] an issue until the end of the world and ENJOY it.[/i] If he doesn't agree with me (doesn't happen often [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img] )......... I don't/he doesn't/we don't believe love is ending. We believe it is that much stronger.

My cubs? Well let me tell you about my cubs. They are God's opinion that we are 'OK'. I can genuinely tell you I don't anticipate my children telling me to "f" off someday. (I don't think their heart is capable of it.) I don't anticipate rebellion. I don't anticipate that "difficult stage". I anticipate them being blessed in their lives. They come [i]naturally[/i] equiped for such. I've honored my parents, (it was the easiest thing I've ever done)............ and I'm promised the same in return. Not why I did it ----- I was [i]compelled by forces God put in me.[/i] (Big Boolean Thing?)

Life was never easy, but ya know what they say about things that are *worth it*. Wouldn't-have-it-any-other-way. To he!! with "the Devil that you know". That is where he belongs.

Maybe it's not *us* the [i]Cure[/i] is meant for. [img]http://uumor.pair.com/nutalle2/peanutallergy/tongue.gif[/img]

Disclaimer: I am not offering advice in any manner or form. Just commenting on *my own unique, individual, and HIGHLY personal circumstances*. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]

On Feb 3, 2004

Article on "Neurotypicality":

[url="http://home.att.net/~ascaris1/neurotypicality.html"]http://home.att.net/~ascaris1/neurotypicality.html[/url]

Disclaimer: I am not offering advice in any manner or form. I do not guarantee the accuracy, content, or currentness of the link in this post.

On Feb 4, 2004

Oh don't get me wrong, MB. I don't want to 'cure' my son, either. However, there are many severely autistic kids out there (unlike yours and mine) who cannot speak, cannot function in society and will not be able to live on their own. It's those kids who I feel would benefit from research from kids like *ours.*

What makes our kids so special? Why are they different? How can what they have accomplished (and we, as parents, raising them) help to assist other kids with similar disorders to be able to function in society? The ultimate goal being independence of some kind.

I guess that's more my point, and I didn't go into that in my post.

I wouldn't trade in or change my son in any way. However, I definitely [b]know[/b] my son will go through a very difficult rebellious stage. I know that, because he IS rebellious. He is a perfect combination of the bizarre characters of both his father and me, and we're both people who always question authority. And there is a fine line between questioning authority and shirking it.

As for your luck in finding a good man, you're doing better than I am. If I could find a man like my Dad... My Dad is/was definitely what I'd consider hyperactive. Work 60 hours a week ~ come home, work on the house, discipline the kids ~ never leaving a job unfinished or a project not begun. No, I haven't been that lucky. Is that the kind of person you want to 'cure?' Hell no. Nor my brother, who is the same. Unruly and difficult and hyper as they come as a child, but full of humor and intelligence and the ability to start and tackle any project.

Yes, one persons 'disorder' is another persons 'order!' I don't fault you for not wanting to 'cure' your cubs or yourself. I don't want to 'cure' mine, which is why I won't medicate! I DO, however, see great value in letting my child participate in research studies, as he is giving of himself to the benefit of those much less fortunate than he is.

~Melanie

On Feb 4, 2004

Here's what I got out of MB's 'plug'

[img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] Mine. Mine. Mine.

Can you tell we've been watching too much of Finding Nemo lately (thats my FAVORITE part).

When we did the clinical study for Caitlin, yeah, we used her as a guinea pig, if you will. The cream was not approved, her skin was a mess, and we'd try anything at that point. And if we get PAID for trying it, sure, why not. Were we thinking for 'all eczema patients? No. Just us. Selfish people are [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

For peanuts though, we'd pass. We can do without them, as a family.

Jason Caitlin 4-17-00 Allergic to Dairy, Egg, Wheat, Bananas, Grapes, Rye, Sesame, Beef, Garlic, Mustard, Onion, Peas and Avoiding Latex and all Nuts Sara 2-13-98 NKA (avoiding nuts) Meghan 2-28-03 dx'ed Reflux - Alimentum feeder, Stopping Zantac - RAST neg. - Day 1 of Yo-Baby MILK challenge [url="http://community.webshots.com/user/jtolpin"]http://community.webshots.com/user/jtolpin[/url]

On Feb 4, 2004

Dear Mel, (can I call you that?)

[i]I do believe we are having what one might call "a virtual cup of coffee".[/i] [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

PS......... I gotta ask myself: Is any "cure" (that you speak of) not only going to need to include "the severely autistic" but "the neurotypical" (?severely neurotypical?) as well? [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

Disclaimer: I am not offering advice in any manner or form.

MommaBear.

On Feb 4, 2004

Quote:

Originally posted by jtolpin: [b]Here's what I got out of MB's 'plug'

[img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] Mine. Mine. Mine.

Can you tell we've been watching too much of Finding Nemo lately (thats my FAVORITE part).

[/b]

[b]That's in "Finding Nemo"??????[/b] Now I'm gonna have to watch it to see where. [img]http://uumor.pair.com/nutalle2/peanutallergy/tongue.gif[/img]

On Feb 4, 2004

I get a little peevish, MB, about Mel. Too manly, and I'm already a tomboy, so I need the feminine, if you don't mind. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]

Anyway... as for neurotypical being included in the studies, I think they should be. One study I looked into at Children's was to do MRI testing, written tests, etc., on my Aspie kid, myself, his Dad and his biological sibling (who is neurotypical, as far as we know). To me, this kind of testing gives more definitive results from the scientific factor. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] Normal vs. Not so normal. Why? What's different?

These are things I see value in finding out. If they figure out what's wrong in the brain of a severely autistic (or in the body of a PA child) and figure out how to fix it, you can then choose whether or not its something you want fixed, can't you? Of course, you can also choose not to participate in any research studies, too. But, whether or not my aim and end all goal was to have a 'cure,' which it is not, at least by doing so I am helping others somehow (a little selflessness) and teaching my child in the process to do the same.

~Melanie

On Feb 5, 2004

Quote:

Originally posted by ajinnj: [b]Would you agree to participate in or allowing your child to participate in a scientific research study (peanut allergy or other medical condition)? Why or why not.

Would there need to be certain conditions? Would you allow participation in a drug study?

Would you be willing to participate in say a research study such as an inhalation peanut challenge?

Would you undergo an invasive procedure in the name of research, such as a bronchoscopy looking at airway remodeling in asthmatics, if it meant possibly helping yourself or furthering scientific research (ie helping other people)?

Allison

[/b]

Yes we do consider it...based on a risk/benefit analysis.

We live near Washington University and our allergist is a faculty member. There've been several studies re asthma that Mariah has been invited to participate in. So far, we haven't, mostly because Mariah hasn't wanted to devote the time necessary.

However, in 1999 our allergist conducted an "inhalation challenge" for Mariah. And this past summer 2003 he also developed a "contact challege" for her. Based on the results, our allergist was comfortable making specific recommendations re safeguards (and losening some others) to the school. So, while I don't really believe any definitive information was gleaned from her participating in these 2 challenges, they were useful in getting our allergist involved with creating and supporting specific school accommodations.

I must add that in retrospect I have some misgivings about having allowed Mariah to participate. It was the means to make some progress with our school district, which we got. I really like our district safeguards, and it is because of Mariah that they were created. I just wish that it hadn't been "necessary". The cost and benefit were both significant... and I'm still weighing them.

On Feb 9, 2004

There are many types of research. When my daughter had her food challenge last year, it was part of a research project. To me there was no downside- I would have done the challenge anyway, and I didn't have to pay. Not all research is invasive- I've participated in studies which involved interviews or questionaires. I agree that its a matter of risk vs. benifit.

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