Current thoughts on clinical trials and other treatments (Dr. Li or Stanford OIT

[hedgehog]

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.

[lakeswimr]

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!

[hedgehog]

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. 

[CMdeux]

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. 

[Macabre]

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.

[lakeswimr]

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.

[lakeswimr]

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? 

[Macabre]

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.

[hedgehog]

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.

 

[Macabre]

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?

[hedgehog]

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.

[Macabre]

Good strategy. 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!

[LinksEtc]

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?

[hedgehog]

Too angry to post details right now, but I lost the argument 

[lakeswimr]

I'm so sorry.  (((((hugs)))))  That really stinks when people won't listen to you and don't give you a choice or vote.