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 > > > ---
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...
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!...
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...
Crystal you are not alone! My son is also one of the most sensitive kids out there, and the scope with Dr. K really messed him up. Dr. K has not been able to...
Anna What kind of energy tests are you doing? Thanks Rob’smom _____ From: foodallergyautism@yahoogroups.com [mailto:foodallergyautism@yahoogroups.com] On...
We've done Zyto with Michael Payne, but mostly we see a local naturopath. Unfortunately I can't recall the name of the computerized system she uses! I know...
Manitoba Harvest Hemp Bliss. We get it at a local health food store. Whole Foods carries the sweetened kind, but it has a ton of ingredients and bad ones, like...
Crystal ... I hadn't realized you'd moved to Virginia! If I'd known I'd have warned you away because of Virginia's low ranking for services, education, and...
Crystal, I'm glad you found the move to VA a good one. I find energy work to be very important. We also have seen the really strange NAET practitioner (did I...
Hi Wyndie, I can't remember if you referred us or if I got her name from the NAET website. Lovely southern lady but not a fit for us. We did not do any trmts...
Hi Suzanne, We did our research and realized b/f we moved to VA that the svcs sucked. I only miss the in-home help I had in SC. It was wonderful. I could...
Crystal, Your SC program sounds great .. on paper. We're in one of the "best" school districts in VA too... good if you're gifted, that is. Not good if you're...
S We have two excellent energy workers. I told our dan about them and he has actually sent a couple people to one of them. How can I help you with your ...
Do they work remotely? -- "Respect and value your instincts about your child – never ignore them, no matter what anyone tells you. Holding a loved one's life...
Actually Mike Payne does treat. He is now into homeopathy also. Actually focusing more on this than other stuff. We have a three part treatment for strep...
I'll just chime in briefly since I'm in a busy stretch right now. We LOVE energy therapy too. Muscle testing is right on for my son's delayed allergies. Our...
Suzanne and Group, I'm trying to play catch-up on my lists and have been meaning to ask you if there is a reliable list of high phenolic foods in a book or on...
Suzanne \\ I hear from our very talented naet lady that there is a whole naet protocol training book on phenols alone. Look up holisticnetworker.com. used to...
Wyndie, It was AWESOME to finally meet you last Sunday at the DAN conference. It was definitely a highlight of the weekend for me after all these years. I am...
So I wondered why my email box was slowing down... I forgot to set my mail back to daily digests... lol Anyway, meeting you was a huge light in my weekend...
Wwould love to see a pic of the two of you! ellouise _____ From: foodallergyautism@yahoogroups.com [mailto:foodallergyautism@yahoogroups.com] On Behalf Of...
Nope, I never thought to take pictures either. My head was up in the clouds all weekend. When I'm on my computer this weekend I'll figure out how to set you up...
Thanks E! I got Zyto tested by Mike Payne at the DAN! conference and it seems right on target! That's a first step at least. We may be able to cut our biomed...
S I have an envelope to send you and will mail it this week. When I got zyto'd by mike, it was right on too. I interviewed a naet practitioner last week at...
Hi Beth, Sorry to be so long answering - I went to the DAN conference and am just now compiling my notes and getting things together at home after being gone 3...
Hi Suzanne, Thanks so much for responding. We're in the middle of challenging foods for phenol tolerance and we're having some trying days. It's encouraging...
Let us know how the phenol exclusion goes. I've been doing it just trial and error, but I have a lot of experience from my allergy background and a solid...
Suzanne, Could you please explain to me the connection between phenols and sulfate, how the sulfate creams benefit Tom, etc.? I know I should get this by now...