We got dd's lab results back today and everything went up (not that there is much difference in a RAST score of 70 when it was 30 last year). We had investigated and ruled out doing a multi allergen clinical trial at Stanford a few years ago. The newest test results and the fact that she's 10 now have me wondering if we made the right decision. I think we did as our allergist strongly cautioned us to avoid the Stanford study as he thinks their protocol is too aggressive and that they under treat reactions.
We have also considered seeing Dr. Li in her private practice, but it is 3000 miles from us. I would do it though.
I'm just curious where the members of this board are at in their thinking about OIT or TCM these days? I always value your opinions. I'll probably be over this phase in a day or two. Today I feel like I have to do something! Thank you!
DS goes for his two-year follow up appointment this week. I am so happy we did it. It makes a world of difference to us.
http://www.nefoodallergy.org (http://www.nefoodallergy.org)
We started desensitization at the same place Hedgehog used. So far so good. I am glad we are doing it. They are claiming a 95% success rate. They are not calling it a trial but desensitization.
I think they worked out a lot of the kinks that they didn't know at first.
They advise people to not do any exercise two hours after they eat their daily dose. They are not supposed to take a hot shower or bath and hour before or two hours after. They are not supposed to take Motrin with their dose. They are supposed to eat carbs just before and right after their dose.
They found that when people didn't follow these guidelines people were more likely to react.
They also found that many people have minor reactions like an itchy mouth or a stomach ache.
I think and hope I made the right choice for my child.
I'm pretty sure you've already seen this thread, but I'll link to it to be sure.
Desensitization Programs in the US -- OIT SLIT SCIT (http://foodallergysupport.olicentral.com/index.php/topic,4269.0.html)
If you work your way backwards, you'll see some recent stuff.
The gurus are still cautioning that OIT is not ready for clinical practice.
I think it depends on which 'gurus' you ask. Mendelson is certainly in the guru category and he is one of the allergists at NE FA clinic where we are going.
Hedgehog,
How high of a daily dose did you get to? I was surprised they said they now try to get people up to 15/day rather than 1-3 a day because it helps protect against reactions better. That's a heck of a lot of peanuts!
Did you have any minor reactions along the way? So far we haven't.
No disrespect intended towards Dr. Mendelson.
I guess that I agree with Dr. Wood & Dr. Sampson that further research is needed for OIT. These docs are extremely knowledgeable and I think it's important for any newbies reading threads like this to be aware of what these docs think about this issue.
Working with my dd's docs, I am often willing to push limits and take risks (& aggressive approaches) in managing my own dd's multiple health issues ... but I guess my public posting style is somewhat conservative because I know there are many with limited medical knowledge reading. Newbies especially may not understand the very real risks involved or that those docs who feel OIT is ready for clinical practice are currently in the minority of docs.
http://www.jaci-inpractice.org/article/S2213-2198(13)00457-1/fulltext (http://www.jaci-inpractice.org/article/S2213-2198(13)00457-1/fulltext)
http://www.asthmaallergieschildren.com/2012/05/11/oral-immunotherapy-for-food-allergy-not-ready-for-prime-time/ (http://www.asthmaallergieschildren.com/2012/05/11/oral-immunotherapy-for-food-allergy-not-ready-for-prime-time/)
When we see our allergist in next couple of weeks, I'll again ask his opinion about OIT.
Most NOVA docs are still saying "not for prime time" as I understand it from other folks in area.
:yes:
There is also apparently some thought that not ALL patients will respond well to OIT-- and there is currently not a lot to separate who will from who won't. There is VERY real risk associated with OIT-- and while the percentage is a mystery since too few people have gone through well-controlled trials-- there seem to be several groups of patients in terms of responders to OIT:
1) those who establish TOLERANCE-- for real tolerance, as in 'we forced this person to no longer be allergic to this allergen.'
2) those who establish an INCREASED THRESHOLD which is STABLE-- as in, anaphylaxis is very unlikely as long as the person maintains that threshold via regular consumption, probably for good. (though again, nobody is sure)
3) those who drop out because they can't seem to establish a STABLE threshold even for dosing beyond very low levels-- these are the anaphylaxers in the treatment group, and
4) those who move unexpectedly from groups 1 or 2 to group 3-- sometimes AFTER treatment, sometimes DURING, sometimes only during illness or other immune stress, sometimes for no reason that can be determined. The problem is that even coming in allergic to specific allergen proteins, or at low threshold doses.... well, none of that seems to be a determining factor. The problem is that there ISN'T a way to know that it will/won't happen to a particular patient until you try it. The other dark side is that there seems to be a very slim, tiny minority whose thresholds are made WORSE (lower) by exposure, or who develop other IgE-related disorders. Well, actually the EoE group isn't such a tiny minority. :-/
What we were told is that about 1-2% of people have serious reactions during treatment. Many people have minor reactions. They do not encourage people who have had the most severe of reactions to do desensitization.
One of the allergists there said he was in the ICU from a nut reaction and so does not think the treatment would work for him.
I don't know how many people have to go through their program before that would be enough to make people feel the program has things down. I can't remember the exact number but I think they are now at somewhere over 430 people who have gone through the program.
As I said, they found a lot of the causes of the sudden reactions. They were from people doing things that caused a rise in their metabolism such as exercising after a dose, taking a hot bath or shower one hour before or two hours after a dose, taking Motrin with a dose, not eating carbs just before and right after eating it, being in hot weather, etc. Once those things are eliminated from what they are telling me people are not having reactions. Almost all reactions were in cases where people did some of the above things. Also, they used to get people up to 1-3 peanuts a day and now they aim to closer to 15/day because they find that people don't have unexplained reactions when they are up to higher doses than when they are only up to lower doses. They also said that if a person is going to have a reaction of any significance it tends to happen when they are on their way to 1 peanut. Once you get to 1 they say it is easy to get to 2 and then once there, easy to get to 3, and so on.
I agree that for new people it is good for them to know to read about this topic before deciding but it is also good to know that NE FA are going forward with treating people and claiming high success. One reason I didn't even look into them sooner was because of things I was reading here. I was shocked when I heard them claim a 95% success rate. That's not the impression I got from reading things here. I think that is important for people to know.
Eventually odds are my child would end up accidentally eating peanuts. I would rather he do this program first. If it doesn't end up working we will have to avoid peanuts which we are already doing. If he starts having significant stomach issues during this I will have to think carefully about EOE. So far he has had zero symptoms. It amazes me. If all we get out of it is that he doesn't have to worry about contact ingestion for peanut that alone would be huge for us.
:yes: All of that makes complete sense-- and the ONLY thing that doesn't make sense to me (or to our allergist, who, recall, used to be affiliated with some of the same physicians who are now doing desensitization clinically) is the claims of success rates topping 90%.
The reason that doesn't quite add up for us is that this is just SO far from what controlled OIT studies have found, which is more along the lines of 60-70%. The other bit that doesn't make sense is the part about serious reactions in just 1-2% of individuals. Clinical studies have demonstrated that rate to be somewhere between 5-10% of patients, depending upon the allergen. It's a big difference. Maybe it's selection bias, maybe it's less rigorous intake protocols, maybe it's a lot of the little details in refinement (noted by Lakeswimr)-- but in any event, I have to wonder how much of that stuff is coincidence or luck rather than actual causation (that is, why carbs and not something else-- and why "before" as well as after dosing... and why would illness not play a role when it seems to have done so in the controlled studies...). Less than 500 persons is still pretty small numbers when you think about how different the manifestations of atopy can be from one individual to another-- and honestly, without a negative control group (actually, SEVERAL control groups), numbers up to a thousand or two aren't even completely compelling. Yet. I also wonder if they simply don't know the reasons when people drop out of treatment and don't say why they've done so. That was one factor in the high success rates of very early OIT trials, like the one that Melissa's DS participated in at Hopkins. When participants dropped out of the experimental arm of the protocol, they weren't followed super-aggressively to determine WHY.
That's not to say that it doesn't work precisely as stated for some, maybe even "most" patients who do it.
One hesitation that our allergist in particular has had w/r/t DD doing something like this is that her immune system seems to be generally rather trigger-happy. That is, we KNOW that pushing on one thing with immunotherapy is likely to result in unpredictable, unrelated, but definitely IgE-mediated stuff popping up elsewhere. So for people like her, it can be a game of Let's Make a Deal-- I just want to know what IS behind all of those doors, myself. If one of them is something worse, then I'd like to know what those odds are, and whether or not they could be higher/enhanced for a particular individual, and how would one know that at the outset of treatment.
I think that they sound like the actively discourage people from doing it if they have had very, very severe past reactions. They also do tell people not to take the daily dose if one is ill or has a fever. Also, if people miss more than 1-2 doses you have to call them and see if you need to come in again before taking your dose or if you need the dose backed down. There are probably a few other 'refinements' that I didn't remember as well.
As for why carbs before and after, they find that it slows down the rate of absorption of protein. Ditto not exercising and not taking hot baths/shows. They find that things that raise the metabolic rate increase the absorption rate. So, while a person's body might be able to handle x amount of peanut at y rate, increasing that rate could make the person react because they can't handle the speed with which the protein is getting into the blood stream.
The initial studies--did they have the same protocols and precautions that I am mentioning here? If not, then it isn't apples to apples but some other comparison. They used to have a higher % react but once they realized the things that tended to be linked to people having sudden reactions to previously tolerated doses they found a very small % react.
I think eliminating people who are on the most sensitive end of things, going super, super slowly with those who are most sensitive of those they do treat, having people take the above precautions, etc must have greatly decreased the % who have serious reactions.
There are other things, too--we have to be careful not to let the peanut get heated. So, even when driving home in the car I had it in the A/C with us rather than in the trunk. I put it in a cool part of our house to store it. If people who did this in the past did not take care with this, they could have less potent doses and then get a new set of doses and not be ready for the dose increase.
Another reason I didn't do this program earlier is that I have a friend who did it when they first started. Her child is one who reacted a lot and had to have the epi several times. He was one who would take his dose and go exercise or take a hot shower and then react. He also was one who sometimes didn't eat first and would react. She told me that they could not get him to one peanut and keep him there reliably and eventually they dropped out. I talked to her more recently and she never told me until then that they had gone back and gotten him up to 3 peanuts a day. She stopped doing it because it was a pain to do peanuts each night but otherwise, it worked for her child. Her stories of his reactions (he was one of the very first patients 2-3 years ago now) were a huge reason for me not doing it. But now I know that his reactions stopped when he started doing the no exercise, no baths/showers after, carbs before and after, etc.
That is really great detail, Lakeswimr! Thank you so much for posting that.
It all makes complete sense-- well, that is, I can understand why the exercise thing ties in, though it's not precisely raising the rate of metabolizing the protein so much as tweaking the immune response and circulatory system, just like with SCIT (allergy shots)-- seems like fats would slow protein absorption more, but ??? who knows. Having eaten something definitely seems wise, anyway. Being careful to keep the doses at controlled temps also makes complete sense to me.
I do know of at least two people who truly tried to do all of that "right" but wound up dropping out because of frequent or severe reactions, and of course there are the EoE stories (nobody wants to think about those, for sure, even if you're doing some kind of home-brewed version of this with baked milk or egg).
It definitely seems like it gets more kids to "tolerance" than doing nothing, anyway-- though again, things are changing so fast with the cohort of kids born after 1996 that who knows, really, what percentage of them are going to be "natural outgrowers" in the end. Maybe most of them-- which might mean that this isn't really budging the natural history of the disease. Hard to say. It might be that the cohort that is not really in a position to try OIT is the portion of the cohort that won't outgrow on their own... and that THOSE numbers may well have not shifted much since 1980, and stayed relatively constant. At least as a paper napkin calculation done in my head, those numbers more or less add up for me. Kids are just outgrowing food allergies later than they used to, apparently. It's not yet clear that there are actually MORE food allergic people in young adulthood. We'll know in about five years, I guess.
Anyway. Things that I have talked about with the allergist re: our egg desensitization. It's been life-changing, for sure. I'm really glad that some of our members here have had such lovely experiences with OIT and peanut. The others that I know have done this are Hedgehog and Aggiedog (though not with the same docs)-- both with stellar results. :coolbeans:
DS's former allergist (now retired) at first advised we do desensitization before they started offering it. Then he had a milk-allergic child have a bad reaction and advised against it and felt it wasn't ready for prime time/didn't have the kinks worked out. We got a new allergist this year and he strongly recommends it. He said, "what else is there?" He said, "it's your best bet right now."
There is someone at KWFA who did desensitization for milk and egg starting with baked at home working with Dr. Wood's guidance and now instead of having a sig line that reads milk, eggs, peanuts, tree nuts, her sig line reads just peanuts and tree nuts. That makes me wish I had pushed the baked stuff faster/harder. She pushed through stomach issues, not having heard the tie to EOE, and her son is perfectly find. Milk was the most serious FA for that child and now he can all forms of it.
I don't know what is right.
I would have guessed that fewer our outgrowing and more have FAs. Kids are outgrowing later, that's for sure. I wonder why. Maybe because better labeling allows for more complete avoidance and total avoidance helps avoid reactions but also can make the allergy get stronger. maybe minor xcontam in the past helped kids outgrow.
Quote from: lakeswimr on July 08, 2014, 09:04:54 AM
Hedgehog,
How high of a daily dose did you get to? I was surprised they said they now try to get people up to 15/day rather than 1-3 a day because it helps protect against reactions better. That's a heck of a lot of peanuts!
Did you have any minor reactions along the way? So far we haven't.
DS actually goes in for his two-year follow up on Friday. He has been at three a day all this time, and I did not even know they are going up beyond that now. He had absolutely no minor reactions along the way, unless you count about five minutes of a slightly queasy stomach on the very first day. But we also very much followed they rules about eating, excerise, etc.
I agree Dr Mendelson counts as one of the gurus. I also believe that it is not ready for "prime time" yet. That is, I think there needs to be a lot of training before an allergist takes it on, rather than just reading about it and deciding to do it on their own. There is also the supply part of it. I know, that at least as of a couple of years ago, NEFATC was very particular about their peanut powder; they had one supplier that made sure that the amount of protein was very precise in each batch. So this is not just buying the powdered peanut butter in the grocery store. I do think that gradually, it will become something more available, and done right.but for now, it is best left to the gurus, or those that are personally trained by the gurus.
Hedgehog,
Thanks for the reply. I am really happy for you guys. :)
I wonder if you would talk about the differences this has made in your child's life (and yours, too). What can you do now that you couldn't before? Thanks!
Best example is our recent trip. We went to Italy, ate like everyone else, did not worry about any ingredients or x-cont that could kill DS. That is actually the story of any restaurant these days. And no place is really that much off limits. I mean, we have not tried certain ethnic cuisines, but that is as much lack of interest as anything else.
Also, I can get in and out of the grocery store so much faster. The only time it takes. An hour and a half anymore is when I am hosting a huge party, buying a cart and a half.
I don't have to worry about parties and other events. Don't have to check the food, make sure there is something safe for him, or feed him ahead and gave an exit plan in case there is too much unsafe food around.
Honestly, just avoiding blatant nut products is like normal life. I mean, normal life for those who have never dealt with LTFA.
I've been amazed at just how much it changes things to have egg/milk off the table that way. I can only imagine how much it would change our lifestyle to have NO restrictions. Egg/milk at high sensitivity means basically not eating in restaurants, and it really restricts travel to a point that is hard to convey unless you've lived it. You tend to think it terms of "emergency food" and "caloric intake" in that stash, and plan for ALL external sources to be off-limits if necessary. Fruit and local veggies, sometimes-- but you assume that protein and carbs are going to be on you, basically. You trust nobody when it comes to pre-prepared or even minimally food-service processing.
Even just taking one of a set of multiple food allergens off of the list of "major concerns" when traveling is life changing in the extreme. It's the difference between NEVER flying or traveling internationally, NEVER being able to eat in a restaurant with friends, NEVER being able to consider living in dorms/with housemates, etc. and being able to figure out ways to do all of those things.
I don't really know what DD's egg threshold is at the moment, and it doesn't matter much. It's high enough that we no longer have to be SUPER meticulous about dosing (she can skip a few days, we use commercial products which contain baked egg as a minor ingredient, etc), and while I know that it could probably provoke anaphylaxis under the wrong set of circumstances, it's just not something that we WORRY all that much about anymore. It's amazing.
I haven't had time to read the whole thread, but DS has been doing SLIT for a year and a half and I've been doing it for six months--both with improved results. We do it at Allergy Associates of La Crosse, which has been doing slit for 30+ years.
It is a slooooooow process. Much slower than oit. It is at least a four year process, and we are both getting environmental drops as well, which they've found helps the FA desens. We don't have to avoid drops during illness or worry about exercise. The dose is low. We do both have to get our vitamin d levels up, as they've noticed greater efficacy when levels are at 30 or above. Mine were dangerously low. Like really, really low.
Lakeswimmr I'm doing sesame. :)
I've not added shellfish yet. My first drops didn't have sesame or shellfish. I had a reaction during the challenge the first time--felt like i was going to pass out. So no sesame then. But just environmentals. Now sesame, but an extremely low dose. I did get spacey during the challenge so a lower dose. And initially once a day, but I've worked up to three times a day.
I don't know when I'll get to add shellfish. I suspect this prices might last beyond four years. I have a thread in OT about it. I see Dr. Mary. Both of us do.
Hedgehog,
That's amazing. Unthinkable for us with all DS's FAs. Maybe one day.
I am surprised that the 3 peanuts a day level isn't a bit more restricting than what you describe. I mean, I can think of many deserts where a person could accidentally eat 3 peanuts or more in one bite. Ditto some types of cooking that have various sauces. Peanuts are not always obvious to the eye. But it sounds like you have great freedom now! How great for you. :) I'm happy for you.
CM,
My DS can do a lot of baked milk and some baked egg and that also has made a big difference for us. It opened us to restaurants that would not have been safe before when DS was super sensitive to dairy. Glad you are finding things easier this way, too.
Macabre, that's great that you are doing sesame. That is a long process. What is the target does they get you to? What is the goal of their desensitization?
Ah--I forgot to mention that. Glad you asked. The goal is not to be able to consume but to tolerate accidental exposure.
There is a pattern after an upped dose of increased then lowered IgE. Also of increased iGg4--so like OIT.
DS' IgE has gone down to a 6. Dr Morris has similar criteria for an IOFC as Burks, whom DS used to go to.
The challenge I referred to above was a dose challenge, not an IOFC.
So, appointment was yesterday. Please forgive me if I don't get through all I want to say to say in one post. MIL is staying with us for the weekend, and I am mad at DH, so I may cut it short and come back later.
So, anyway, yes, they are doing up to 15 peanuts now. They recommended that DS go back to go up to the 15. It seems that some have had reactions to the main thence doses, even if they have followed directions (full stomach, no exercise, etc.). And with the three peanuts, they still test positive for PA, although lower than before treatment. With the 15, they no longer test positive, and then the maintenance dose gets reduced to one peanut every other day. I think, something like that anyway. DS is very on board with this. He wants to do it. We were almost going to start on the spot, but it would have meant staying an extra 45 minutes, and we had to go pick up MIL.
Also, the doctor was very interested in DS's blood work. The newer test that was not available a few years ago (can't remember the name, on the tip of my tongue). Anyway, it indicates what type of reaction he is likely to have because of how it binds with the allergen. It shows that DS is not likely to experience anaphylaxis. However he did have an anaphylactic reaction when he was little. Of course, that test did not exist then. So it is possible that the treatment is why that has has occurred, and that the results would have shown the potential for anaphylaxis before treatment. But since the test is new, and most who have undergone treatment did not have this test first, they don't know.
So, the reason I am mad at DH. At dinner I started to tell him about the visit. I did not finish the first sentence, but did get out that they go up to 15 peanuts now, and he started in with "we're not doing that! It's nuts!" And he would not hear anything I have to say after that. I already made the appointment for DS for Friday. So now I have to either convince DH, cancel the appointment, or go anyway, even though DH doesn't approve. The problem is, there is no convincing him of anything once he has made up his mind, even though I am the one who spoke to the doctor, does the research, and knows what is going on. I really want to do this, and summer is the best time scheduling-wise. And I really don't want to go behind his back. Not good for a marriage.
Oh wow. Tough position. Possibility: keep the appointment and get him to go with you and speak to the doctor. Maybe the doctor can address recurrence issues--with hard data. You all have invested a lot in the initial desens. If they've found something that better maintains it, wouldn't it be worth it? Perhaps use the Italy trip of an example of how DS' quality if life has increased.
Hedgie has your doc noticed any development of EE it other FAs after desens?
You obviously gave never met my DH. He has never, ever taken time off from work for something like an important doctir's appointment for one of the kids. In fact, he just does not take time off when he is sick, either. If he takes time off, for a vacation, or his own doctor's appointment, it must be scheduled months in advance, because the company he works for cannot do without him for any amount if time, unless arrangements we made in advance ~) . There is no way he would go. I let it drop while his mother was with us. But will talk to him tonight at dinner. DS is really on board with it, and I spoke to DD, who agrees with me. I think with all three of us agreeing, we have a shot at convincing him. I also think that if he still says no, I will tell him, "you don't have a say until you actually talk to the doctors and do the research. Until then, it is up to me." Then it will not be like I am going behind his back to do it, but even if he doesn't agree, I doubt he has much of an argument.
Good strategy. :thumbsup: Man, it's a good thing you can be a SAHM if he's not willing to do any of that stuff. Yikes. Someone's got to do it. On the other hand, you totally have the upper hand here, that's for sure. Heh, heh.
Good luck!
For those doing this, I'm curious about how the risks/benefits were explained as part of informed consent. For example, was the possibility of developing EE discussed?
Too angry to post details right now, but I lost the argument :rant:
I'm so sorry. (((((hugs))))) That really stinks when people won't listen to you and don't give you a choice or vote.
Oh, I
am sorry, Hedgie. :crossed: that your DS is probably fine anyway since you've had almost NO trouble so far.
Quote from: LinksEtc on July 14, 2014, 12:58:08 PM
For those doing this, I'm curious about how the risks/benefits were explained as part of informed consent. For example, was the possibility of developing EE discussed?
We've been doing highly heat-treated egg dosing (baked egg) for a few years now. We were
not really "warned" about EE with it-- but that was because it really wasn't (quite) recognized that it WAS a substantial risk at the time. We
were concerned with the fallout associated with tweaking DD's immune system with immunotherapy for an anaphylaxis trigger. There was a lot of very good, open communication re: that at the time-- DD's volatility in a global sense
did seem to rise that first six months.
I don't KNOW that this is the case, but I have my suspicions that we might have traded fuller pollen desensitization for the egg desensitization, much as we initially traded SCIT for a re-emergent (and potent) milk allergy when DD was 5-9 yo.
All of that is purely idiosyncratic, and much of it is highly reproducible in
her-- but NOT stuff that is seen in other patients in studies. But it's a large part of the reason that we've all concluded with some reluctance that she is not likely to be a very good candidate for nut desensitization orally. We simply don't know what we'd be trading for, and it could be REALLY big... and her threshold REALLY moves around with peanut and cashew both-- that much we already know from environmental exposures, reaction history, etc.
Dr. Awesome definitely talked to us some about how things were going-- we were lucky in that we were seeing him weekly anyway since DD was still undergoing SCIT for aeroallergens. Egg treatment
added an extra year to that, btw, because he had to step her dosing down for a few months when she started dosing with egg. Total burden seems to be a thing with her. The reason why we have NOT pushed egg dosing into "normative" range is twofold-- her personal history suggests that this is a tightrope act-- why make it
higher??-- and the possibility of EE, which seems to be more robustly associated with higher concentration regimens for OIT.
Incidentally, I do not believe that DD has developed
true "tolerance" (that is, like non-allergic, normal tolerance) for ANY food that she has ever been truly allergic to
since she outgrew wheat as a toddler. That is; she is not
highly reactive toward milk or soy, certainly, but she definitely has a limit on consumption, too. She gets those things pretty regularly, and we don't
fear them, by any means, but if it's been a while, there's a certain awareness in the backs of our heads, too. Her IgE-mediated immune system is inherently
unstable. That's all there is to it, in her case. I suspect that it's a genetic variant that will eventually be associated with very severe atopy.
I asked about it. There had been no incidence of it.
Does anyone have thoughts on this ... ? A paper from last last year shows that FAHF-2 doesn't work (under the protocol the researchers devised). Does anyone know what they're doing at Mt. Sinai now? Upping dose, extending ramp-up time?
Safety, clinical, and immunologic efficacy of a Chinese herbal medicine (Food Allergy Herbal Formula-2) for food allergy (http://"http://www.ncbi.nlm.nih.gov/pubmed/26044855")