If there were a Cure for PA/TNA

Hi,
I would only give my pa son a pill daily to take the risk from having a anaphylactic reaction.
I would only take this pill if it was approved like any antihistamine or allergy drug has been.

We all have learned to live without peanuts/tree-nuts for so long that it has become our way of life. To have a drug wash out peanut or tree-nut allergies altogether so that you could eat these again, isn't even on my wishlist, must be because I don't think that would ever happen. It's like being a diabetic...you have life saving drugs to treat the diabetes but it doesn't mean you can eat sweets and get fat because of the drugs.

I'm more of a believer in Western Medicine.
Hope this makes sense, dh is vacuuming right now [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

Is anyone aware of an organization called FOOD ALLERGY INITIATIVE? Their website is [url="http://www.FOODALLERGYINITIATIVE.ORG"]www.FOODALLERGYINITIATIVE.ORG[/url] They're actually solely responsible for raising the money to find the cure. These people are wonderful. I contacted them last year concerning my daughter and they sent me enough information that I could have started a small library.lol.

lil

re-raising

Interesting topic.

I'd be more likely to accept and try a cure for my ta daughter from an alternative source than western meds.

If there were documented studies and general acceptance that it was a cure, I would accept any low-risk, non-invasive cure. Accupuncture, manual therapies, medications that are approved and tested, etc.... I would consider other methods for the prevention of anaphylaxis, but maybe after giving my dd some time to see if she outgrows it or even until she is old enough to have a say in it all.

As has been stated, we are rather used to living without nuts, and have had no reactions since ingesting them, so I feel like we are able to manage the allergy well. The "cure" would have to have the same low risk as our day to day life at the time. becca

I would probably try any treatment that was non-invasive and had clinical trials backing it. My children are not gineau pigs or crash test dummies.

------------------
Cheryl, mom to Jason (6 PA/TnA/other FAs and EAs),Joey (4 NKA) and Allison (1 suspected milk allergy)

What do you consider "non-invasive"? What about shots once a month or once a week, would that be "acceptable"?

Allison

Quote:Originally posted by Jennifer1970:
[b]
I'd be more likely to accept and try a cure for my ta daughter from an alternative source than western meds.

[/b]

Out of curiosity, is there a particular reason you would be more likely to accept an alternative meds versus traditional western meds? Would the alternative medicine need to be regulated and have scientific studies to back its effectiveness/ safety?

Allison

[quote]Originally posted by toomanynuts:
[B]If there were a Cure for PA/TNA what form would it come in? And from who?

injectable or liquid -- I bet liquid form.

Would you accept a "Cure" if it came from an Alternative Medicine Doctor or from a Western Medical Doctor?

DW would accept from AM. For Caitlin, it'd have to be a traditional doc.

And what type of cure would be acceptable pills, invasive, non invasive, a simple one time pill or a single one time Alternative Doctor treatment, a treatment at a hospital, or a treatment in a Doctors Office.

No pain (a one time shot is ok). No monthly injectables, kwim?

Chances of a risk involved ... Anaphylatic reaction or no more PA/TNA.

If chance of anaph., forget it. Deals off.

Adults if you have lived with PA/TNA all your life what would be acceptable to you?

Y'know... DW would say forget it, no matter what. Shes been PN free for so long, she can deal without them in the future.

If only your child is PA/TNA what would be acceptable to you?

At this point, its irrelevant for Caitlin. We have out plates full with other things. When shes PA/TNA, talk to me [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Answering the above question directed to me....
Why would I choose Alternative over Western ? I don't trust the FDA. They are waist deep in allowing the drug manufacturers to run thier own tests and ignoring outside studies. Case in point , the recent uproar over antidepressants and kids. [url="http://www.sfgate.com/cgi-bin/article.cgi?file=/c/a/2004/02/01/MNGB64MJSP1.DTL"]http://www.sfgate.com/cgi-bin/article.cgi?file=/c/a/2004/02/01/MNGB64MJSP1.DTL[/url]

With the exception of the epi-pen , benadryl and my migraine pain killers, we are a totally alternative med family.

Quote:Originally posted by toomanynuts:
[b]
Chances of a risk involved ... Anaphylatic reaction or no more PA/TNA.

Who would do it? Are the risks worth it?
[/b]

There is a chance of anaphylaxis with the use of any medication. It is well known that antibiodics (penicillian, etc) can cause anaphylaxis. I had an anaphylactic reaction to prilosec, a fairly "safe" medicine. Even zyrtec has had some reported allergic reactions:
[url="http://www.pfizer.com/download/uspi_zyrtec.pdf"]http://www.pfizer.com/download/uspi_zyrtec.pdf[/url]
"In foreign marketing experience or experience in the post market period,the following additional rare, but potentially severe adverse events have been reported: anaphylaxis, cholestasis, omerulonephritis, hemolytic anemia, hepatitis, orofacial dyskinesia, severe hypotension, stillbirth, thrombocytopenia, aggressive reaction and convulsions."

I know Toomanynuts has already asked this but: would you be more hesitant to try a medicine, such as Xolair (drug very similar to the tnx-901) that has had reported rare cases of anaphylaxis. If the medicine is given in a "controlled environemt" such as a hospital or doc's office, would you take the risk that you/ your child would be one of those "rare" cases. Why are many of you less willing to take a risk with this type of drug different than taking a risk with a drug like an antibiodic?

BTW I am not saying necessarily that the risk outweighs the benefit. I am just mearly asking questions.

Allison

Quote:Originally posted by ajinnj:
[b] There is a chance of anaphylaxis with the use of any medication. It is well known that antibiodics (penicillian, etc) can cause anaphylaxis. I had an anaphylactic reaction to prilosec, a fairly "safe" medicine. Even zyrtec has had some reported allergic reactions:
[url="http://www.pfizer.com/download/uspi_zyrtec.pdf"]http://www.pfizer.com/download/uspi_zyrtec.pdf[/url]
"In foreign marketing experience or experience in the post market period,the following additional rare, but potentially severe adverse events have been reported: anaphylaxis, cholestasis, omerulonephritis, hemolytic anemia, hepatitis, orofacial dyskinesia, severe hypotension, stillbirth, thrombocytopenia, aggressive reaction and convulsions."

I know Toomanynuts has already asked this but: would you be more hesitant to try a medicine, such as Xolair (drug very similar to the tnx-901) that has had reported rare cases of anaphylaxis. If the medicine is given in a "controlled environemt" such as a hospital or doc's office, would you take the risk that you/ your child would be one of those "rare" cases. Why are many of you less willing to take a risk with this type of drug different than taking a risk with a drug like an antibiodic?

BTW I am not saying necessarily that the risk outweighs the benefit. I am just mearly asking questions.

Allison[/b]

Unless a qualified, licensed physician prescribes/recommends a medication for my child out of *necessity*/with a history of potential/proven benefit, then *I* don't even consider giving my child a medication. If they were on death's door, who knows if my opinion would change? (But still within: recommended/prescribed by a qualified, licensed physician, exhausted other options scenario). Risk Benefit type of Deal. You're right. Many medications have side/untoward effects. Risk of Adverse reaction even.

Off Topic, but is anyone familiar with the term: "Mass Clinical Trial"?

Right now, my children lead a virtually *normal* (hate that word, but for lack of better............) life. *Normal*, I tell ya. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] [i]disgustingly so.[/i] [img]http://uumor.pair.com/nutalle2/peanutallergy/tongue.gif[/img] Maybe even a bit [i]exciting.[/i]. In a *Normal* sort of way.

I personally don't believe in *my* personal, highly individual and unique situation, the relative risk of them dying from their food allergies is significantly higher than other risks they encounter in their *every-day-life*, [i]considering the modifications/interventions we/they have implemented[/i]. The modifications/interventions we/they have made are relatively [i]benign[/i], and at the very most would be considered an [i]inconvienience[/i] by some.

WRT only *my own* personal, highly individual, and unique situation and family [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] : We were asked to allow our child to be part of a study (several years back) involving an injectible IGE lowering medication. We politely declined. I do believe that was our [b]right[/b]? [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

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

[This message has been edited by MommaBear (edited February 02, 2004).]

Jennifer 1970 - what did you do about vaccinations for your children?

Quote:Originally posted by MommaBear:
[b]
I personally don't believe in *my* personal, highly individual and unique situation, the relative risk of them dying from their food allergies is significantly higher than other risks they encounter in their *every-day-life*, [i]considering the modifications/interventions we/they have implemented[/i]. The modifications/interventions we/they have made are relatively [i]benign[/i], and at the very most would be considered an [i]inconvienience[/i] by some.[/b]

I agree. In my 18 years of dealing with multiple food allergies, I've had 4 anaphylactic reactions that have required the use of epi. My reactions were quite severe, involving swelling of my airways. However, knowing exactly what to do, I do not feel that I am at "higher" risk of dying. In my previous reactions, I used my epi and was fine. Yes it was scary at the time and I felt really sick after, but I survived and life goes on. The actual risk of dying from food allergies is quite small. Food allergies do not consume my life. I have been and done everything. I went to public school; I go to college (and live away from home); I

Quote:Originally posted by ajinnj:
[b]
So in answer to your question,[/b]

I did not ask such a question, so I guess you were not referring to me? Am I correct? [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] If you were referring to one of the questions that I [i]did[/i] ask, could you let me know which it was? Just clarifying. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

BTW, the study we were asked to participate in was for Asthma, not PA.

He just happened to have Asthma, [i]and[/i] PA/Nuts.

Quote:Originally posted by MommaBear:
[b] I did not ask such a question, so I guess you were not referring to me? Am I correct? [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] If you were referring to one of the questions that I [i]did[/i] ask, could you let me know which it was? Just clarifying. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

BTW, the study we were asked to participate in was for Asthma, not PA.

He just happened to have Asthma, [i]and[/i] PA/Nuts.

[/b]

MommaBear, I was referring to the original question posed by Toomanynuts about the "cure" for PA/TNA.

Also, I know we've talked about this before but I don't quite remember the details, was your son asked to be in a Xolair study or was it a different anti-Ige study? Now that the Xolair has been approved for asthma and many studies have been conducted ("proving" the drug "safe"), would you ever consider putting your son in a study testing its effect on peanut allergy? WOuld anyone else? WHy or why not.

Allison

Just reposting:

Off Topic, but is anyone familiar with the term: "Mass Clinical Trial"?

Quote:Originally posted by ajinnj:
[b]
Now that the Xolair has been approved for asthma and many studies have been conducted ("proving" the drug "safe"), would you ever consider putting your son in a study testing its effect on peanut allergy?
[/b]

This drug?:

[url="http://myhealth.barnesjewish.org/HealthNews/Reuters/NewsStory0516200322.htm"]http://myhealth.barnesjewish.org/HealthNews/Reuters/NewsStory0516200322.htm[/url]

[url="http://www.health.harvard.edu/fhg/updates/update1103c.shtml"]http://www.health.harvard.edu/fhg/updates/update1103c.shtml[/url]

quote from second article entitled:

"Patients taking Xolair were more likely to develop or experience a recurrence of cancer than those patients who received the placebo, but the rates are very low (0.5% compared to 0.2%). The maker of Xolair, Genentech, Inc., is planning long-term studies to look into the relationship between Xolair and cancer."

Any word on those long-term studies?

Anyone?

Disclaimer: I am not offering advice in any manner or form. I do not guarantee the accuracy, content, or currentness of the links in this post. Just seeking input and possible clarification.

[This message has been edited by MommaBear (edited February 02, 2004).]

Danielle , I don't wanna hijack the thread to discuss the horrors with vaccinations. Let me say that I've learned they are totally unnecessary and now that I know the ingredients it sickens me that I ever allowed my kids to have even one shot.
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[url="http://www.vaccinationnews.com"]www.vaccinationnews.com[/url]