I would think if he's had it before, it would be ok to do again. Faith had
scopes done this last week and she was fine with it. It wasn't Krigsman but
still... a scope is a scope. I think the information you may learn would be
worth it, especially considering how much you've already invested. If you had
already started the meds, I'd say no way but I think you have a good handle on
things and if Tom goes on a small hiatus from lack of meds, you will get him
back.

That said, easier to say about your child than mine. In your shoes, I think I
would cancel just b/c the risk, while minimal statistically speaking, wouldn't
be that small if my child were to fall in that bracket, ya know? While I know I
can get my children back should a procedure cause regression, I wouldn't want to
HAVE to do that. I also wouldn't want the guilt of ignoring that small voice in
my head that said "don't do it".

Now that I've put myself in your shoes, I would cancel. How's that for
confusing information?? I know a scope is the most effective means of
evaluating the gut health, but there are so many other tests available to
determine gut information... Perhaps listing the pros and cons on a peice of
paper will help you make the choice.

I do know Suzanne, that you will do what is right for Tom. Whether that's to go
ahead or to cancel, it will be what's right based on all the information you and
your husband have at this moment. You are the most incredible parents and you
will do the best you can; and Tom will be ok if you have to take him off meds
for three weeks. His body is in great shape to get right back on the wagon, so
to speak. :)

I cannot WAIT to meet you!! Seems like we've been friends for years, now
finally we'll have faces to go with the friendship. :)

Wyndie

Wyndie

--- In foodallergyautism@yahoogroups.com, "Suzanne Midford" <szmidford@...>
wrote:
>
> Yippee! I get to meet you at the DAN! Finally, after all these years! (I've
known you online for what, almost 6 years?) Anna will be there too. I'm so
excited!
>
> I've got mixed feelings about giving Tom so much carbs after all these years
of strict carb avoidance, but he's doing well and so I'm just not sweating it.
Jenny really helped me get over that issue. We still must stay on a constant
intense antifungal rotation, but that's true no matter what diet he's on.
Tackling phenols has been huge for us in terms of gut health and overall health.
I am coming to think that much of what parents report as "yeast" problems are
actually phenol problems ... the behavioral symptoms and gut symptoms are very
similar. It certainly had us fooled for years.
>
> I am really on the fence about Krigsman. So many people I know have had their
kids go downhil badly just from the scope. We scoped once before and it went
fine, but that was before we had Tom on so many meds and supplements that are
fixing his problems. I'm really afraid to send him back to that old, bad place.
I'm afraid I might never get him back. The thing is, we want to start a trial of
steroids for his brain inflammation - he's diagnosed with Landau-Kelffner now.
Once we start steroids it's not a good idea to stop suddenly for a scope. You
have to wean slowly, and if the kid is responding you may not want to wean or
stop at all ... sometimes they never respond to steroids ever again. So we
thought we'd get the scope out of the way before we start steroids ... it might
be our only chance. But now I'm thinking that the cost might outweigh the
benefits.
>
> I'd love for anyone to weigh in on this. Rob and I are seriously considering
cancelling the scope. If we do it, we have to stop meds this Friday. I've
already warned school and therapists and everyone (he's on a behavior plan now
at school, so it would only make a bad situation worse). We've already invested
a year and a lot of effort, and at least $700 into preparations and consults
with Krigsman. Plus, our insurance has approved it (at least verbally) for
everything including the pillcam (at least out of network). I hate for all that
work and money to go to waste.
>
> Any opinions? Advice?
> Suzanne
>
>