Suzanne,

I will give you our experiences w/ Krigsman. Keep in mind that this is only our
experience.

We loved him as a person and a doctor but this was the worst thing we ever did
for our son. Our son has actually been scoped three times. First by a
mainstream Dr. When he said he was fine we thought he was crazy and went for a
2nd opinion with CHOP. They also said he was find. We were shocked. Of course
that was b/f we finally discovered biomed. No problems with either scope w/
meds or anything.

Then we found Thoughtful House. They really would not work w/ us until we went
through Krigsman first w/ a scope. I can't believe in hindsight that we agreed
to yet another scope. This was by far the worst thing we ever did. Our son has
a huge regression. I attribute it to the Miralax. Now I now most kids can
tolerate Miralax but out son cannot and did not. We lost him even more
cognitively. Also in hindsight we felt like we were being used for studies and
statistics. Again, this is truly my opinion only and Dr. K has done great
things for some...just not us. Our son is still one of the most sensitive
kiddos I know when it comes to food, supplements, meds, etc. He is still non
verbal and about 1 yr behind cognitively.

Also to consider, it sounds like Tom has made significant gains w/ Rossignol. I
LOVE Rossignol, but our son could not tolerate most things he suggested for us.

So here we are. In Dec. we struggled with making a move from SC to VA (N. VA
area). My hubby got a pretty good job offer w/ his same company (gov) and back
with previous agency. After six month of trying to decide, we moved. It has
been the best thing for our son.

Okay, this is probably going to sound really crazy to most but when all else
didn't work for us, we went the energy route. We tried a NAET practitioner in
SC and my husband thought she was a loon. We started another one in Fairfax
shortly after moving here and she is AMAZING!!!!! For the first time in his
life, he can tolerate all vitamin B's orally rather than TD. He can finally
tolerate a couple new foods, K, Iodine, liposomal glutathione, egg. We go see
her twice a week and WOW! We have a long way to go but she has truly been
amazing for us. We also just started working w/ Michael Payne and his Zyto. I
was truly amazed at what this picked up. I realize most do not do energy work
and think I am crazy, I'm sure I would have to before this life.

You may also think this is crazy but the Zyto also picked up Barium his our sons
intestines. A large amount from all the scopes. I'm sure it is trapped in
there by all the mercury. It also showed us that the DTaP was what probably
started our problems and not so much the MMR which I thought. Good to know
since we will be doing vacinnes clearings in a few months.

Anyway, just my two cents. I wish you the best of luck with your decision.

Crystal


--- 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
>
>
>
> -------------- Original message from "Wyndie" <mileski5@...>: --------------
>
> Oh Suzanne!! I am so happy to hear of the progress on the food front! How
wonderful to be able to give Tom food he likes now. :) Yay for you guys!!!
>
> I would be afraid to upset the apple cart too. Do you have to do it now or can
you reschedule so you have time to see if it's really necessary? I know the wait
list is long so that's probably a tough one to waffle around on; I understand
your hesitancy though.
>
> I will be at DAN working the Body Ecology booth. You coming?
>
> Wyndie
>
> --- In foodallergyautism@yahoogroups.com, "Suzanne Midford" <szmidford@>
wrote:
> >
> > Hi Wyndie,
> > Thanks for the info! Your ped GI sounds like a smart guy. How rare! We are
scheduled for a scope and pillcam with Krigsman in April and I'm really not
looking forward to it. Tom's doing pretty well at the moment and so now we have
to take him off all his gut meds his for 3 weeks ... then get him stable again
afterwards. I'm really thinking we might be upsetting the apple cart for no good
reason. We finally NAILED his clostridia with 9 hard-chamber HBOT dives last
August (yippee!!!), and figured out that a lot of what we had been thinking was
yeast was actually phenol issues... and addressing those two things has brought
a lot of good stuff. FAs are changing ... he's outgrown a lot of stuff and
developed some new ones, we've had to add a lot of carbs (grains, potatoes) to
compensate for calories lost when we eliminated phenolic fruits ... but overall,
he seems to be much the better for it. Added No-Fenol which partly works but
still have to avoid the big phenol offenders. He's allergic to No-Fenol so we've
got a touch of eczema, but boy his poops are lovely! Tummy's much flatter too.
And he gets to eat foods he likes now, instead of endless veggies, so he's
eating better, which makes our lives much easier too. So except for avoiding
phenols and severe allergens, we're on a much less restricted diet and happier
all around because of it. Still rotating everything, but there's a lot more to
work with.
> >
> > I'm so glad to hear your mom's doing well and digging in to corn allergies.
That's such a tough one! Good for her for getting active in managing it. I never
could say no to chocolate for very long either... when Tom developed a
choclolate sensitivity at the same time he developed his potato sensitivity, it
was a SAD day for me! To this day I eat a square or two of Lindt 85% (soy-free)
Dark chocolate almost every day!
> >
> > Hey - any chance you (or any other listmates) are going to the Atlanta DAN
conference?
> >
> >
> >
> > --
> > "Respect and value your instincts
> > about your child â€" never ignore
> > them, no matter what
> > anyone tells you. Holding a loved
> > one's life in your hands means
> > that you have to accept a
> > position of power even when you
> > don't want it. You must become an
> > advocate for your child,
> > even if it means standing alone
> > against the world." - Karen Siff
> > Exhorn
> >
> >
> > -------------- Original message from "Wyndie" <mileski5@>: --------------
> >
> > Olivia! I'm sorry it took me so long to get back with you.
> >
> > How's your baby's stools doing now? All my kids have severe FA's but I have
to tell you, my youngest is unvaxed but she has the worst FA's, I think b/c my
body got less and less able to provide nutrients while PG; well that and my
husband's antrax shots right before conception and my leaking amalgams, but I
believe maternal health affects them greatly.
> >
> > That said, my youngest is my biggest challenge. I had to exclusively BF her
b/c she was allergic to all formulas. She also would not latch so I had to pump
for 14 months and bottle feed her. That was a chore considering how often her
FA's changed! The milk bank loved me b/c I was constantly donating milk to them
that had suddenly become off limits to her! lol
> >
> > Are you giving your wee one some probiotics? That has really been key to
seeing some of their FA's reduce. They're not gone but they are improving. We
follow the Body Ecology Diet (not exclusively, we eat things not approved for
the sake of getting enough nutrition into them).
> >
> > We just saw a pediatric GI this week and he stressed to me the importance of
getting kids pooping 3x a day at least. He said his theory is that most
allergies are not allergies but rather the body's response to undigested/
uneliminated foods. He's a rather elderly guy so he's been practicing a LONG
time and he said in his practice, most children's allergies reduce or are
completely eliminated by more regular bowel movements. Not the anaphylactic
ones, but the diarrhea/constipation/tummyache/rashes type allergies.
> >
> > Let me know how I can help. i'm just spewing here as thoughts cross my mind
but I want to support you in any way possible. I know the difficulty of being on
such a limited diet when BFing. I'm here for you!
> >
> > Wyndie
> >
> > PS Suzanne, my mom is doing well. She's adjusting to life avoiding corn.
Found a wonderful support group that she reads every day and learns from. My dad
is supporting her as well so that's been a huge thing for her. She's seeing a
reduction in her breathing problems although her vice - chocolate - always
brings her a problem. She's not willing to part with that yet no matter how it
makes her feel. We all have to get to the point where we make our own choice and
she's not there yet. She'll be coming here in a week to help me with the kids
while I go to a few conferences and she'll be forced to go chocolate free then
so well see. Thank you for asking about her. You help to her was so invaluable
and I'm grateful for it! xo
> >
> > > ---
>