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/constipati on/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
> >
> > > ---
>