PA OIT update and blog

[Tina]

Hi-

I have been on this site and the prior one for a while now. I just wanted to give an update that we finished 3 years of SLIT, until we maxed out the drop dosage from WI. We just started the Dallas OIT. We have been 5 times (we are flying from out of state. ouch) and it is going really well. DD is now having a capsule of peanut powder twice a day. A little PA humor - 'That looks like may contain traces to me! DH "Seriously. Can we eat Asian now?" Of course, we can't yet, but it really is cool. She is supposed to eat a peanut in 5 weeks.

I wrote a blog post about PA for grandparents as part of a startup I am working for. I will most likely post some updates there, as well as talk about our super crazy, now we can laugh about it, NAET experience. Here is the link to my blog: mintdotdoublescoopdotnet

Best,

Tina

[booandbrimom]

Tina, question for you...

My son recently did an in-hospital challenge for peanut as part of the FAHF-2 trial. He started to react at about 1/2 a peanut and went full out at the ~3 peanut mark.

I was surprised to learn from the study coordinator that this seemed to be about the norm. Half a peanut is where most people start to have symptoms.

Given that...this seems like a lot of work to get to the same starting point we're already at. Did you guys do any type of a challenge at the start to see what your daughter's actual threshold is?

[Tina]

Hi-

We did not do a test because her testing is so off-the-charts, and because (I think) our program isn't research. We are just following a protocol that seems to be working for a lot of kids. There also isn't an expected time for a kid to react, from what I can tell. When the group was developing the protocol, and if they observed a trend, they would change the protocol (ie., if all kids reacted at xxxml of peanut, they would add an interim dose).

That being said, it is a lot of work for us because we live far away. However, if it were local, it's really not that bad. It's an hour and a half office visit every week for 4 months.

Also, I'll add that it is very strange to be doing this treatment. It is a huge change to avoid any trace of peanut, and then to be giving your kid increasing amounts very quickly. I can't really get over it, and I am of course waiting for a reaction. I will be certainly be looking out for the half-peanut.

Does that help?

[booandbrimom]

I was actually asking about the 3 years of SLIT doses you did before the trial... (If you look up in the main area, we're discussing all this.) I was surprised to find out how high my son's threshold really is. I'm just not sure what SLIT is accomplishing if it's giving doses that are *under* a child's natural threshold.

FYI, there's a young girl on Twitter who's also doing the TX desensitization - @MissBrandNewMee. Might want to look her up.

Good luck with the dosing! Every kid is different, so don't worry about the 1/2 peanut mark. Besides...if you're doing a peanut in 5 weeks, she's probably already getting half a peanut (100mg).

[tina marquis]

Got it! Yes, the SLIT seemed a little strange. The dosing from WI seems really low, but I think some of the studies are more aggressive. The one thing, though, is that both the allergists think the SLIT probably helped prepare for OIT. For SLIT, we just went to WI once, then the doses were mailed to us and given in our local allergist office. So it could be that it helped us out.

And yes, we are on 100mg, and all is well. Thanks for the tip about the other person on TX.