Guest guest Posted May 19, 2005 Report Share Posted May 19, 2005 Hello Andy, I would like your guidance on some of the things I've been doing on my own. I have a 7 year old daughter. She's 56 " tall and 90 lbs. She's been GF/CF since age 3 and mostly soy-protein free since then. She did get whatever soy lecithin and soybean oil was in the prepared products we allowed her to have (mostly snacks). She finally had a huge reaction to soy lecithin three months ago. She reacts to casein and soy in the same way. It starts with some sneezing and extreme nasal congestion, and progresses rather quickly to what looks like an asthma attack. The other notable outcome from ingesting soy or casein is that the autistic behaviors go from mild to extreme. Antihistamines don't do anything to alleviate, and, indeed, she tests negative to all IgE tests. The only thing that stops the reaction is Prednisone. Do you know why that is? The way she reacts to gluten is that her skin and hair become extremely dry. With continued exposure, she get psoriasis-like sores. It takes about 5 months of being gluten-free for the symptoms to disappear and the skin and hair to return to normal. She also gets reflux from it. We tried enzymes, both AFP Peptyzide and No-Phenol, with no noticeable effect either way. They neither alleviate nor stop reactions to forbidden foods. I've been giving her supplements since age 4.5. She takes the following B6 300 mg per day B-12 2,500 mcg per day Folic Acid 800 mcg Cal/Mag/Zinc/Copper 1000/400/15/1 twice daily (any less than that and she toe-walks and gets major sensory issues) Vitamin B2 100mg every other day P5P 50mg every other day Grape Seed extract 50mg twice a day Broccolive Plus, two caps a day (three caps equal 1 lb of cruciferous vegetables which she craves) ALA 100mg three times daily three days on four days off GSE tabs 150mg three times daily garlic extract as needed for yeast. I tried Beta caroteine and she reacts badly to it. I've given her Glutathione before starting the ALA and saw no results either way. She doesn't tolerate B1. I tried giving her B complex to reduce the number of pills I gave her and it caused problems (incontinence). She doesn't tolerate P5P for the same reason. I am doing this on my own. I can't afford a DAN and I'm not sure I even want one. What can/should I add to her daily supplement list? What can/should I ask her pediatrician in the way of conventional blood testing to follow her progress? Thank you for any guidance you can offer. -- Rima Regas Mom to Leah, age 7 (AS, DSI and APD) http://www.sensoryintegrationhelp.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Not Andy here. Has she been tested for celiac disease? The ALA dose and dosing schedule you use concerns me. Consider 25 mg or lower on a every 3 hours (day) and every 4 hours night schedule for 3 days on, 4 or more off. This can significantly reduce redistribution. Did you do a hair analysis? What did it show? I presume she has no mercury amalgam dental fillings...My understanding is that is not a good idea to supplement copper unless one knows the person needs it. S S <tt> Hello Andy,<BR> <BR> I would like your guidance on some of the things I've been doing on my<BR> own. I have a 7 year old daughter. She's 56 " tall and 90 lbs. She's<BR> been GF/CF since age 3 and mostly soy-protein free since then. She did<BR> get whatever soy lecithin and soybean oil was in the prepared products<BR> we allowed her to have (mostly snacks). She finally had a huge<BR> reaction to soy lecithin three months ago. She reacts to casein and<BR> soy in the same way. It starts with some sneezing and extreme nasal<BR> congestion, and progresses rather quickly to what looks like an asthma<BR> attack. The other notable outcome from ingesting soy or casein is that<BR> the autistic behaviors go from mild to extreme. Antihistamines don't<BR> do anything to alleviate, and, indeed, she tests negative to all IgE<BR> tests. The only thing that stops the reaction is Prednisone. Do you<BR> know why that is?<BR> <BR> The way she reacts to gluten is that her skin and hair become<BR> extremely dry. With continued exposure, she get psoriasis-like sores.<BR> It takes about 5 months of being gluten-free for the symptoms to<BR> disappear and the skin and hair to return to normal. She also gets<BR> reflux from it.<BR> <BR> We tried enzymes, both AFP Peptyzide and No-Phenol, with no noticeable<BR> effect either way. They neither alleviate nor stop reactions to<BR> forbidden foods.<BR> <BR> I've been giving her supplements since age 4.5. She takes the following<BR> <BR> B6 300 mg per day<BR> B-12 2,500 mcg per day<BR> Folic Acid 800 mcg<BR> Cal/Mag/Zinc/Copper 1000/400/15/1 twice daily (any less than that and<BR> she toe-walks and gets major sensory issues)<BR> Vitamin B2 100mg every other day<BR> P5P 50mg every other day<BR> Grape Seed extract 50mg twice a day<BR> Broccolive Plus, two caps a day (three caps equal 1 lb of cruciferous<BR> vegetables which she craves)<BR> <BR> ALA 100mg three times daily three days on four days off<BR> GSE tabs 150mg three times daily<BR> garlic extract as needed for yeast.<BR> <BR> I tried Beta caroteine and she reacts badly to it. I've given her<BR> Glutathione before starting the ALA and saw no results either way.<BR> <BR> She doesn't tolerate B1. I tried giving her B complex to reduce the<BR> number of pills I gave her and it caused problems (incontinence). She<BR> doesn't tolerate P5P for the same reason.<BR> <BR> I am doing this on my own. I can't afford a DAN and I'm not sure I even<BR> want one. <BR> <BR> What can/should I add to her daily supplement list? What<BR> can/should I ask her pediatrician in the way of conventional blood<BR> testing to follow her progress?<BR> <BR> Thank you for any guidance you can offer.<BR> <BR> --<BR> Rima Regas<BR> Mom to Leah, age 7 (AS, DSI and APD)<BR> <a href= " http://www.sensoryintegrationhelp.com " >http://www.sensoryintegrationhelp.c\ om</a><BR> </tt> <br><br> <tt> =======================================================<BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 > Hello Andy, > > I would like your guidance on some of the things I've been doing on my > own. I have a 7 year old daughter. She's 56 " tall and 90 lbs. She's > been GF/CF since age 3 and mostly soy-protein free since then. She did > get whatever soy lecithin and soybean oil was in the prepared products > we allowed her to have (mostly snacks). She finally had a huge > reaction to soy lecithin three months ago. She reacts to casein and > soy in the same way. It starts with some sneezing and extreme nasal > congestion, and progresses rather quickly to what looks like an asthma > attack. The other notable outcome from ingesting soy or casein is that > the autistic behaviors go from mild to extreme. Antihistamines don't > do anything to alleviate, and, indeed, she tests negative to all IgE > tests. The only thing that stops the reaction is Prednisone. Do you > know why that is? It more or less turns off inflammation. Do you have trouble keeping her diet clean? If so you might want to see if your doctor would prescribe an asthma inhaler to see if that will control the wheezing. Also if it wasn't determined as part of the allergy test, you might want to have total IgE determined next time blood tests are done for other reasons. > The way she reacts to gluten is that her skin and hair become > extremely dry. With continued exposure, she get psoriasis-like sores. > It takes about 5 months of being gluten-free for the symptoms to > disappear and the skin and hair to return to normal. She also gets > reflux from it. > > We tried enzymes, both AFP Peptyzide and No-Phenol, with no noticeable > effect either way. They neither alleviate nor stop reactions to > forbidden foods. It is pretty obvious that what is going to work is dietary restriction. Is this feasible to do with high reliability? > I've been giving her supplements since age 4.5. She takes the following > > B6 300 mg per day > B-12 2,500 mcg per day > Folic Acid 800 mcg These 3 should be 3 or 4 times a day, OK to divide it up. > Cal/Mag/Zinc/Copper 1000/400/15/1 twice daily (any less than that and > she toe-walks and gets major sensory issues) Can you leave the copper out? Use more zinc? > Vitamin B2 100mg every other day > P5P 50mg every other day These 3 should be 3 or 4 times each day. > Grape Seed extract 50mg twice a day > Broccolive Plus, two caps a day (three caps equal 1 lb of cruciferous > vegetables which she craves) Do you know her plasma cysteine? Craving sulfur foods can indicate an intolerance to them. People with high cysteine levels often have dramatic allergy like problems as you describe above. Plasma cysteine is a blood test available only through Great Smokies Laboratories. > ALA 100mg three times daily three days on four days off Stop this immediately. ALA must be given on a proper chelation schedule, every 3 hours (4 during sleep OK) or not at all. Also this is a large amoun, try 25 mg when you try it on a 3 hour schedule. > GSE tabs 150mg three times daily > garlic extract as needed for yeast. > > I tried Beta caroteine and she reacts badly to it. This could suggest chemical sensitivity - deranged phase 1 liver metabolism. Such people often have wild allergic appearing problems. > I've given her > Glutathione before starting the ALA and saw no results either way. > > She doesn't tolerate B1. I tried giving her B complex to reduce the > number of pills I gave her and it caused problems (incontinence). She > doesn't tolerate P5P for the same reason. > > I am doing this on my own. I can't afford a DAN and I'm not sure I even > want one. > > What can/should I add to her daily supplement list? Vitamins C and E. > What > can/should I ask her pediatrician in the way of conventional blood > testing to follow her progress? It is uncoventional, but plasma cysteine at great smokies laboratories would be very informative. It need only be done once. I'll put my long discussion of testing at the end of this (I have put it on the list before). Cysteine can be skipped if you are willing to to some week long dietary and supplement experiments, but the test only costs $35. > Thank you for any guidance you can offer. > > -- > Rima Regas > Mom to Leah, age 7 (AS, DSI and APD) > http://www.sensoryintegrationhelp.com Tier 1 of testing, what you learn Test What you learn, or other commentary * DDI hair element profile Heavy metals, adrenal, maybe thyroid status A CBC with diff B-12/folate, iron defc, other anemias, assorted immune abberations, viral or bacterial infection festering M Serum uric acid Marker of Mo status, goes up with Pb tox, down with mercury M Plasma sulfate Marker of Mo status, goes up if not used metabolically, down with heavy metals (including Pb) A Plasma cysteine Often deranged in heavy metal tox, use as diet indicator A Hgb A1c hypOglycemia not uncommon M IgE Is it up or not? Often unclear from s/sx. M Ferritin Deficiency common, overload sometimes M fT3 fT4 TSH Thyroid, needs to be interpreted properly, not per bogus normal ranges, and in relation to each other. Often low, also can pick up chemical sensitivity here. M * M = mainstream, people can get insurance to pay if doc has half a brain in writing order. A = alternative, coverage unlikely. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 Thank you! Responses interspersed below: I am posting this with a cc to you. On 5/22/05, andrewhallcutler <AndyCutler@...> wrote: > > tests. The only thing that stops the reaction is Prednisone. Do you > > know why that is? > > It more or less turns off inflammation. > > Do you have trouble keeping her diet clean? If so you might want to > see if your doctor would prescribe an asthma inhaler to see if that > will control the wheezing. This is only during those very rare times when she had an infraction on the diet with casein or soy. > > Also if it wasn't determined as part of the allergy test, you might > want to have total IgE determined next time blood tests are done for > other reasons. IgE tests are negative. We had two series with allergists and saw a pediatric GI who took biopsies after several weeks of challenge. Other than extreme inflamation, he could not point to any problem. > > > We tried enzymes, both AFP Peptyzide and No-Phenol, with no noticeable > > effect either way. They neither alleviate nor stop reactions to > > forbidden foods. > > It is pretty obvious that what is going to work is dietary restriction. > Is this feasible to do with high reliability? We have been doing it pretty reliably for 4.5 years. Every so often there is an accident. The extreme issues with soy are very recent and that's out completely now. > > > Cal/Mag/Zinc/Copper 1000/400/15/1 twice daily (any less than that and > > she toe-walks and gets major sensory issues) > > Can you leave the copper out? Use more zinc? I tried to give her the supps separately, with no copper and she didn't do well at all. Sensory issues were way up and she started mouthing non-food items. Now that she's back on this combo, everything's back in control. > > > Broccolive Plus, two caps a day (three caps equal 1 lb of cruciferous > > vegetables which she craves) > > Do you know her plasma cysteine? Craving sulfur foods can indicate an > intolerance to them. People with high cysteine levels often have > dramatic allergy like problems as you describe above. > > Plasma cysteine is a blood test available only through Great Smokies > Laboratories. I will go ahead and do this one. I don't know what her levels are. > Thank you!!! -- Rima Regas Mom to Leah, age 7 (AS, DSI and APD) http://www.sensoryintegrationhelp.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 > Thank you! Responses interspersed below: I am posting this with a cc to you. > > > > tests. The only thing that stops the reaction is Prednisone. Do you > > > know why that is? > > > > It more or less turns off inflammation. > > > > Do you have trouble keeping her diet clean? If so you might want to > > see if your doctor would prescribe an asthma inhaler to see if that > > will control the wheezing. > > This is only during those very rare times when she had an infraction > on the diet with casein or soy. Which means it wouild mostly sit in the cupboard unused. An albuterol or similar inhaler is a lot more benign than prednisone. Did you try it already? > > Also if it wasn't determined as part of the allergy test, you might > > want to have total IgE determined next time blood tests are done for > > other reasons. > > IgE tests are negative. We had two series with allergists and saw a > pediatric GI who took biopsies after several weeks of challenge. Other > than extreme inflamation, he could not point to any problem. This isn't what I said - have the test " serum IgE " done next time she has to be tested for other things. See what the number is. Also see if she can have salivary or fecal IgA tested, and if that is low add serum IgA to the list of tests for next time she needs a blood test. > > > We tried enzymes, both AFP Peptyzide and No-Phenol, with no noticeable > > > effect either way. They neither alleviate nor stop reactions to > > > forbidden foods. > > > > It is pretty obvious that what is going to work is dietary restriction. > > Is this feasible to do with high reliability? > > We have been doing it pretty reliably for 4.5 years. Every so often > there is an accident. The extreme issues with soy are very recent and > that's out completely now. > > > > > > Cal/Mag/Zinc/Copper 1000/400/15/1 twice daily (any less than that and > > > she toe-walks and gets major sensory issues) > > > > Can you leave the copper out? Use more zinc? > > I tried to give her the supps separately, with no copper and she > didn't do well at all. Sensory issues were way up and she started > mouthing non-food items. Now that she's back on this combo, > everything's back in control. > > > > > Broccolive Plus, two caps a day (three caps equal 1 lb of cruciferous > > > vegetables which she craves) > > > > Do you know her plasma cysteine? Craving sulfur foods can indicate an > > intolerance to them. People with high cysteine levels often have > > dramatic allergy like problems as you describe above. > > > > Plasma cysteine is a blood test available only through Great Smokies > > Laboratories. > > I will go ahead and do this one. The " doctor's office " has to call GS and get a comprehensive detoxification profile kit, which you then have the plasma vial prepared and send only that along with the order sheet marked for " plasma cysteine " but nothing else back in the enclosed mailer. The test must be drawn M-Th. Discard the rest of the kit unless you want to do the rest of the test. If you want to get sulfate, it is done from the same plasma vial as the cysteine is. See if the doctor will let you call " from his office " and set it up. That will make it happen faster. > > I don't know what her levels are. > > > > Thank you!!! > > -- > Rima Regas > Mom to Leah, age 7 (AS, DSI and APD) > http://www.sensoryintegrationhelp.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 On 5/22/05, andrewhallcutler <AndyCutler@...> wrote: > > > Do you have trouble keeping her diet clean? If so you might want to > > > see if your doctor would prescribe an asthma inhaler to see if that > > > will control the wheezing. > > > > This is only during those very rare times when she had an infraction > > on the diet with casein or soy. > > Which means it wouild mostly sit in the cupboard unused. An albuterol > or similar inhaler is a lot more benign than prednisone. Did you try > it already? Yes. We tried. What's more is that there is a huge difference in how it is delivered. She responds best (almost immediate) with an injection of Prednisone. Next, she responds, but less quickly, to the nebulized Prednisone. Pills take about an hour or so to begin having an effect. The inhaler was almost never effective. -- Rima Regas Mom to Leah, age 7 (AS, DSI and APD) http://www.sensoryintegrationhelp.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 You might want to try assorted forms of " adrenal support, " such as adrenal cortexx extract, licorice, etc. The wheezing must have been quite bad for the doc to be willing to inject prednisone. Andy . . . . . . . . > > > > Do you have trouble keeping her diet clean? If so you might want to > > > > see if your doctor would prescribe an asthma inhaler to see if that > > > > will control the wheezing. > > > > > > This is only during those very rare times when she had an infraction > > > on the diet with casein or soy. > > > > Which means it wouild mostly sit in the cupboard unused. An albuterol > > or similar inhaler is a lot more benign than prednisone. Did you try > > it already? > > Yes. We tried. What's more is that there is a huge difference in how > it is delivered. She responds best (almost immediate) with an > injection of Prednisone. Next, she responds, but less quickly, to the > nebulized Prednisone. Pills take about an hour or so to begin having > an effect. The inhaler was almost never effective. > > -- > Rima Regas > Mom to Leah, age 7 (AS, DSI and APD) > http://www.sensoryintegrationhelp.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 > You might want to try assorted forms of " adrenal support, " such as > adrenal cortexx extract, licorice, etc. > > The wheezing must have been quite bad for the doc to be willing to > inject prednisone. > so asthma, wheezing, respiratory problems can be linked with adrenal problems? Am i right in taking this inference from this posting? My son used to get bad croup/brocnhail problems that required a nebuliser and prednisone. He also had adranl problems, which now seem to be under control Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2005 Report Share Posted May 22, 2005 How did you bring the adrenal problems under control? What were the symptoms? How did you test for them in the first place (conventional doc? Dan doc?) Thanks! Rima On 5/22/05, steve_rotherham <steve.rotherham@...> wrote: > > > You might want to try assorted forms of " adrenal support, " such as > > adrenal cortexx extract, licorice, etc. > > > > The wheezing must have been quite bad for the doc to be willing to > > inject prednisone. > > > > so asthma, wheezing, respiratory problems can be linked with adrenal > problems? Am i right in taking this inference from this posting? > > My son used to get bad croup/brocnhail problems that required a > nebuliser and prednisone. He also had adranl problems, which now seem > to be under control > > Steve > > > > > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
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