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Posted by aggiedog
- May 12, 2012, 08:27:28 AMI voted "something else", but I have no idea what. I do not think a "cure" is anywhere close to reaching the public for at least 10 years, probably much longer, since I'm pretty sure the researchers haven't even figured out what's going on with FA's, much less how to correct that problem permanently.
Dd has done OIT, and it has been a huge game changer for her and us. But I never really looked at it like a cure. More like a medicine she may have to take forever. If she were diabetic or had some other medical condition that required daily meds to control, I'd have no problem making sure she got the meds. If she needs 1/2 tbsp PB daily to keep her allergy in check, so be it. The hope is that she builds enough tolerance that she won't need it at all, but I'm ok with that never happening. It's still a huge improvement over pre-OIT.
Dd has done OIT, and it has been a huge game changer for her and us. But I never really looked at it like a cure. More like a medicine she may have to take forever. If she were diabetic or had some other medical condition that required daily meds to control, I'd have no problem making sure she got the meds. If she needs 1/2 tbsp PB daily to keep her allergy in check, so be it. The hope is that she builds enough tolerance that she won't need it at all, but I'm ok with that never happening. It's still a huge improvement over pre-OIT.
Posted by PurpleCat
- May 12, 2012, 07:53:32 AMSomething else, but what? I have no idea and I don't believe it will be for a very long time. In my opinion, there will have to be more people with allergies to get the research beyond where it is now.
I do hope before DD has kids! That's what I hope. So she doesn't have to parent a kid with allergies since there is a chance she could pass her allergies on (although neither DH or I have them). My wish for her is not to have the added stress in her life. Sure she'd be good at it because she walks the walk. But still......
I do hope before DD has kids! That's what I hope. So she doesn't have to parent a kid with allergies since there is a chance she could pass her allergies on (although neither DH or I have them). My wish for her is not to have the added stress in her life. Sure she'd be good at it because she walks the walk. But still......
Posted by Janelle205
- May 12, 2012, 03:05:22 AMAnother on the not sure what it will be realm.
I'll admit, I'm a little bit scared of a 'cure'. Chiefly because I think that those cures, especially if they are come about through desensitization, are going to be for people with more 'mainstream' allergies, and not necessarily the small group of folks like me who have multiple and non-top 8 allergens.
While I'll be happy for those folks who can eat without worrying, I feel like it will turn into the family and friends who already don't understand things so well asking - "Why haven't you just gone and gotten the cure like everyone else?"
But I'm hoping that the cure is not desensitization based. Because as someone who personally tried environmental desensitization for years and failed, I don't really think that it's an option for me.
I'll admit, I'm a little bit scared of a 'cure'. Chiefly because I think that those cures, especially if they are come about through desensitization, are going to be for people with more 'mainstream' allergies, and not necessarily the small group of folks like me who have multiple and non-top 8 allergens.
While I'll be happy for those folks who can eat without worrying, I feel like it will turn into the family and friends who already don't understand things so well asking - "Why haven't you just gone and gotten the cure like everyone else?"
But I'm hoping that the cure is not desensitization based. Because as someone who personally tried environmental desensitization for years and failed, I don't really think that it's an option for me.
Posted by momma2boys
- May 11, 2012, 09:57:36 PMNot sure what it will be, just hope it comes quickly. I'm really sick of dealing with allergies. 
Posted by Mfamom
- May 11, 2012, 05:09:40 PMThanks for the clarification. Honestly I think I'd rather have food allergiesthan eoe. I remember dr scherer joking about the delivery method of the one treatment but that was a couple years ago do it may not still be current.
Posted by booandbrimom
- May 11, 2012, 04:49:54 PMNope, just pills, MFA! There is a thread about it further down with a picture.
I'll have to tell my son, though, about your suggested path of administration. I'm sure he feels like it's going in that way some days.
And I hear EoE is the preferred abbreviation now for esoph...thingie I can't spell. EE was causing confusion because it already stands for something. But yes - there's a risk he'll develop new allergies in his throat because of this medication. They don't expect that to happen but it is on the list of warnings.
I'll have to tell my son, though, about your suggested path of administration. I'm sure he feels like it's going in that way some days.
And I hear EoE is the preferred abbreviation now for esoph...thingie I can't spell. EE was causing confusion because it already stands for something. But yes - there's a risk he'll develop new allergies in his throat because of this medication. They don't expect that to happen but it is on the list of warnings.
Posted by CMdeux
- May 11, 2012, 03:50:44 PMEsophogeal Eosinophilia, I think. Eosinophilic disorders in general are a huge concern in all of the current (experimental) treatments for FA.
FAHF is oral at this point. I don't think that this one has ever been a suppository-- though I recall a mouse study at Sinai that involved TH1/TH2 switching using one.
FAHF is oral at this point. I don't think that this one has ever been a suppository-- though I recall a mouse study at Sinai that involved TH1/TH2 switching using one.
Posted by Mfamom
- May 11, 2012, 03:31:44 PMwhat is EoE and is FAHF the one that is a suppository?
Posted by booandbrimom
- May 11, 2012, 03:10:31 PMQuote from: CMdeux on May 11, 2012, 12:53:51 PM
Do I think that a "cure" is five years away? Not on your life.
Seeing as how I'm on my third "just five years away"...
I didn't even vote. I have no idea still what works. Obviously we're betting more on the FAHF-2 since we're doing it. They have warned us, though, that there's a risk of triggering EoE in susceptible kids. And there do seem to be side effects from the meds.
But then...nothing is risk-free. Even doing nothing carries its own risks.
Posted by CMdeux
- May 11, 2012, 12:53:51 PMI do think that FAHF-2 is a "cure" for anaphylactic responses to allergens. That one really seems to re-regulate the immune response.
On the other hand, the question that my family has wondered at with this particular treatment is an uneasy... yeah, but in TRADE FOR WHAT??
I mean, the problem is that without knowing anything about the underlying mechanism by which it affects change, it could be that patients who opt for that treatment are trading anaphylaxis vulnerability for... I dunno, liver cancer. Or non-Hodgkin's lymphoma. Or infertility. Or something else like atypical ALS.
Such things do not always show up under examination of ethnobotanical uses of a traditional remedy in Ayurvedic or TCM practices because diagnostic tools and terminology are so culturally specific-- and, to be blunt, life expectancies and medical care in some regions has been so very poor up until quite recently.
Do I think that a "cure" is five years away? Not on your life.
Ten? Maybe. For some people... or at least we'll have the impression that they can be "cured" but maybe we still won't even be able to say with certainty what we mean by using the term.
In my DD's lifetime? I hope so. But I wouldn't bet on it. I wish that I could say otherwise. I suspect that research is at least a DECADE away from even fully understanding how food anaphylaxis works from start-to-finish, and after that, how sensitization happens. Only then can we really start to untangle how true tolerance might happen, and only THEN can people who have sensitized hope to regain "normal" immune response to allergens via a true re-training of the immune system. Up to that point, everything is going to be experimental and empirical tinkering with a big black box that says "food allergy" on the side. It's like reaching your hand into a box with a complex electronic device housed within, jumbling some things about, and saying, "Well, let's see if that does the trick!" It may work some of the time, but it's probably not a good approach.
On the other hand, the question that my family has wondered at with this particular treatment is an uneasy... yeah, but in TRADE FOR WHAT??
I mean, the problem is that without knowing anything about the underlying mechanism by which it affects change, it could be that patients who opt for that treatment are trading anaphylaxis vulnerability for... I dunno, liver cancer. Or non-Hodgkin's lymphoma. Or infertility. Or something else like atypical ALS.
Such things do not always show up under examination of ethnobotanical uses of a traditional remedy in Ayurvedic or TCM practices because diagnostic tools and terminology are so culturally specific-- and, to be blunt, life expectancies and medical care in some regions has been so very poor up until quite recently.
Do I think that a "cure" is five years away? Not on your life.
Ten? Maybe. For some people... or at least we'll have the impression that they can be "cured" but maybe we still won't even be able to say with certainty what we mean by using the term.
In my DD's lifetime? I hope so. But I wouldn't bet on it. I wish that I could say otherwise. I suspect that research is at least a DECADE away from even fully understanding how food anaphylaxis works from start-to-finish, and after that, how sensitization happens. Only then can we really start to untangle how true tolerance might happen, and only THEN can people who have sensitized hope to regain "normal" immune response to allergens via a true re-training of the immune system. Up to that point, everything is going to be experimental and empirical tinkering with a big black box that says "food allergy" on the side. It's like reaching your hand into a box with a complex electronic device housed within, jumbling some things about, and saying, "Well, let's see if that does the trick!" It may work some of the time, but it's probably not a good approach.
Posted by rebekahc
- May 11, 2012, 09:41:04 AMI voted something else, because I don't think any of those things are a cure - a treatment, yes, but not a cure. And, I believe that as treatments, many/most of those are viable - some build tolerance, others prevent the allergic response, the herbal (not sure what it's mechanism is yet - perhaps it could be a "cure," but I suspect it's more likely preventing the response), but they all seem to work some of the time. <shrug>
Posted by Mfamom
- May 11, 2012, 09:12:56 AMthanks for that information. see, had I stayed current with the stuff, I would have known that.
Posted by booandbrimom
- May 11, 2012, 09:11:17 AMQuote from: Mfamom on May 11, 2012, 09:02:44 AMI guess I haven't kept up because my ds had anaphylaxis and when I first looked into some of the studies, he was exempt due to that and his age.
The only exemption from the FAHF-2 study we're in was intubation for a reaction. They expect anaphylaxis. Study age was 12-24. FYI.
Posted by Mfamom
- May 11, 2012, 09:02:44 AMI'm not sure, I haven't really kept up with the different studies. I do remember feeling very surprised when a couple of years ago Dr. Sicherer was talking about the herbal remedy having a lot of merits and I remember cracking up about the one that is taken rectally. (see I dont even know the scientific names).
I guess I haven't kept up because my ds had anaphylaxis and when I first looked into some of the studies, he was exempt due to that and his age. My dh not on board with anything that could risk his well being so I have been sort of ignoring the stuff.
I guess I haven't kept up because my ds had anaphylaxis and when I first looked into some of the studies, he was exempt due to that and his age. My dh not on board with anything that could risk his well being so I have been sort of ignoring the stuff.
Posted by booandbrimom
- May 11, 2012, 08:52:26 AMCurious as to whether conventional wisdom has changed since I've been gone, especially in light of the guru argument about whether oral desensitization is working...