Claire

Hi all, Work eased up a bit (succeeded in getting new business) so I started posting again, and now the crunch is on again--new business deadlines. So I am disappearing for a bit again. I write this because otherwise I feel non-repsonsive not answering posts. Good luck to all! Claire

Thanks Robin, They responded to my email. The eggs are low pasteurized and not raw. Also, they say the whey is casein-free. I have heard of this but never found it. That would be awesome, since I bet the whey one tastes most like milk... That would explain why your son has no reaction to the whey powder. I will order them tonight/tomorrow with the shaker then, I am pretty excited. If this goes well, I can have a healthy and easy breakfast or snack too. I will let you know if it passes the taste test of my son. Wish me luck. Thanks a million! Claire

Bean, Where did you get the capryllic acid in a liquid form? I would like to investigate that as a possibility for my son. He used to do capsules with no issue, but liquid is easier--we are down to one set of pills/day and you need antifungals 2x/day so this might help. Claire

Thanks Robin, My son can't have the whey protein (casein), but he can now have the egg protein (used to not be able to have this also!). I will try it! Do you just mix the egg protein powder in? Glad no artificial crud, including sucralose. I am checking into it now. I sent an email on whether the egg whites are from raw eggs (vs cooked). This has been shown to cause a biotin deficiency in studies, and that actually happened to my husband. http://www.jayrobb.com/eggwhitprotv.html By the way, did you ever try the soy (mixed feeling on soy supplements, but occasionally okay)? Claire

Well, I spent a while experimental. Soy cream french vanilla icecream (really good, even I could tolerate it) and rice protein powder. Then plain, orange and chocolate. The plain was okay, he disagreed. Maybe I should try it with Gotein protein powder... Claire

I am trying to address the low amino acids with more complete proteins. Great Plains sells a milk free one, but they add manganese. Maybe once in a while it is okay. Any one found any that taste good? I would prefer a mix to spending 20 hours trying to create one. Though I will try that too if I need to do so. It is so important that he gets a complete protein. I believe soy protein is one, and this claims rice protein is also: http://www.nutribiotic.com/riceprotein.htm Claire

Kim, The positive response to the antihistimines sure makes it work looking into the labcorp.com histamine/methylation test. Then possibly treat to correct the histamine levels vs just using antihistamines. My son had none of the pyrolura symptoms mentioned on the site. Dr. Walsh skips light sensitivity--that is a symptom too. The stunted growth is just due to low zinc by the way, and it doesn't affect everyone of course. I agree with Caz on the metals, especially for the son with low zinc, but I know you need a doctor's signature for that one and don't really have a cooperative doctor. I think that is the underlying cause for possibly even the majority of us here. Don't know about the other comments from Pfeiffer. To save $ just test one son and if it is positive, test the other. Claire

Spartan, Not sure whether you found a multivite without copper? What have you been taking--you say your tics are getting worse in a recent post. I have a multivite without copper that I like and ordered. Not enough zinc/cal/mag, but those can be added and it is decent for the rest, and no copper and low manganese. I am giving it to my son until our special compound one comes in, and taking it myself. http://www.kirkmanlabs.com/products/multiv...ra_hypo237.html It is important to not just do some B's but have a balance. I would take any additional cal/mag with this multivite, then take zinc at bedtime. You say 3 hours of computer a day? Has this increased lately, e.g. could it be a factor in the worsening, or did you always view that much? Do you use an LCD or CRT monitor? LCD's are better if the computer is a trigger in any way. Claire

Kim, Pfeiffer says 45% (of ASD types) are undermethylated, and 15% overmethylated. The point being that 60% have methylation issues. 3:1 under vs over. Jennifer, Nancy and my son were undermethylated, Caz's was overmethylated. Funny, there goes that 3:1 ratio. Pfeiffer usually does TMG with folinic acid for methylation, but notice 5HTP is BAD if you are undermethylated, and good if you are overmethylated. You need both the tests you mentioned, but the histamine one is most important (we did both). We just retested and will know in a month if it made an impact on his methylation issues. I do recommend the pyroluria $48 test as you know because 1) it is non invasive urine test that can be done at home, 2) it is cheap, 3) so many here tested positive and 4) it needs no doctor's signature. But you need to stop B6 and zinc for a few days first. Also, that spectracell.com test doesn't need a doctor's signature. For us, we could see that my son was at the very low end of normal on inositol. They will send you supplementation recommendations--I personally wouldn't supplement without some testing, but I am super conservative. I know they are expensive, and given that it is tax time, we are feeling a major pinch in the pocketbook, for real. I am almost glad we already did all this re-testing, or we might have had to postpone it. I have postponed my own retesting for financial issues. How funny because my son has had 3 rounds now, and me one round--shows my priorities in life. But then, I don't have symptoms that might potentially interfere with my life and work (e.g. photosensitivity). I finally retook the Spectracell vitamin deficiency test. I do know that supplementing for my son definitely corrected deficiencies. To figure out methylation, I might see if antihistimines made a difference in symptoms--for a night or two (not during school, they can make people sleepy. (for high histamine/undermethylated, they might have an impact). I worry about too many vitamins for a long time, so I was conservative in the multivites. I basically did just the normal daily requirement for many, then a bit more for things he is known to need based on some tests. I am doing enzymes to improve his nutrition absorption also. I still think that zinc is an issue for the son with a 76 score...did your doctor have an issue with you supplementing zinc? Claire

Bean, I only ordered 1 week's worth of the Nystatin in Stevia, because I figured their was a high risk my son would hate it. I personally thought it was disgusting, so when he saw my face he wouldn't go near it. I am back to using the pills. So glad I only bought 1 weeks worth. I do NOT recommend that anyone try this in the future. The compounding that I am doing for the vitamins is just normal capsules--no liquid. Claire

Great news. For the 15 vitamins I try to give daily (plus a B-complex, so 16 capsules), I probably average $2.50/day of pills (never have done the math). Anyway, this compounding is actually cheaper--it is only $1.67/day, or $150 for a 90 day supply. Plus I now will only have 5-6 capsules instead of 16 capsules! Please note that I do a calcium/magnesium chewable by Country Life. The calcium and magnesium are so bulky that compounding them doesn't buy you anything, so in my opinion it is a waste of money. So I am getting EXACTLY the vitamins I want, no iron/copper, low manganese, plus the special things he needs that aren't in normal vitamins. This compounding won't include the enzymes/fish oil/probiotics. So he will still swallow 8-9 pills a day still. Better than 19 though. And on some days I can just cut back and give him half doses without missing vital nutrients. I am really excited about this one. When to do it: AFTER you have stablized your child and know what works--otherwise you risk throwing away everything. For some things where it fluctuates, like B6/P5P and zinc, I put the base amount in the capsule and figure I can add to it if needed. I targeted amounts that he could use for the whole year. How to do it: For those of you supplementing under a doctor's direction, I would compile the list with all the current amounts they recommended, then note adjustments up or down that you would like, and fax it to your doctor. We did it over the phone one by one and I spent a small fortune for the phone consultation. This would save time. The doctor will fax the list to the pharmacy. I worked with Byron, he was sooo helpful and nice, I would ask for him. You never know when someone else might be less patient. They will give you a price and the number of capsules it reduces to before you commit. I would suggest size 0 capsules. The 00 are just big enough to make a kid gag. Claire

Kim, I asked Great Plains about the B6/pyrodoxine in the urine (my son had lots also) and they said it just meant you are supplementing, not that the body was assimilating in properly. I think the opposite is different though--a low level means that you body doesn't have enough to throw off the extra....because mine was low and my doctor said I need to supplement. Well, strep is a biggie--gotta treat that. I hope the nurse completed her statement. The body can heal itself of strep infections HOWEVER, the reason that we treat it with antibiotics is that not treating it can result in much more serious secondary issues for some of them. Even if they don't 'believe' in PANDAS, they know it is true for rheumatic fever. I had the same initial discussion with doctors before. Claire

Schubert, There are multiple tests and ways of testing, and multiple labs. These are the initial ones I recommend for ongoing tics (vs PANDAS/strep testing, for people with a sudden onset). You need an MD to order most of them. I recommend these because the vast majority of parents here who took these tests found something, so we have our own results for comparison, and these a pretty fundamental. This is not a comprehensive list, more of a starter list that should give your physician some direction. BLOOD TESTS I recommend 1. www.elisaact.com --'Comprehensive Analyses' for $600 (includes environmental) or just the foods for $300. Food 234 (includes GLUTEN, CASEIN and SALICYLATES!) Environmental Chemical 60 Mold 28 (includes candida albicans) Additive/Preservative 27 Food Coloring 14 Toxic Mineral/Metal 12 TOTAL 375 items tested http://www.elisaact.com/test/pdfs/EAB_Combos_NonHP.pdf 2. www.spectracell.com FIA 5000 blood test for $195. It will tell you both vitamin and antioxidant deficiencies. The antioxidant deficiencies can be a 'marker' for the detox/immune issues. 3. Great Smokies elemental analysis for mercury, lead cadmium blood test. www.gsdl.com If your doctor thinks that is too much blood at once, then do the first 2 first. The toxic metal testing can occur later, especially if the antioxidants do come back low. URINE TESTS I recommend 1. Great Plains Organic Acid profile. ($180 or so) Will cover yeast overgrowth, glutathione and some other factors. www.greatplainslaboratory.com 2. www.pyroluriatesting.com $48. (Pyroluria commonly causes zinc and B6 deficiency, and for some reason Spectracell doesn't always pick them up, though Spectracell is a great test in general, and covers much more than zinc and B6--they just can have a big impact). I hope that if you do this testing, you will report back any results. With no official studies, it is up to us parents to help eachother see the common issues. Good luck. Glad you found a cooperative doctor. Claire

Sherry, Glad you found a great doctor!! Yippee! www.elisaact.com --the test you are talking about is called the 'Comprehensive Analyses' for $600, as opposed to just the foods for $300. The number refers to the of items they test for in eachcategory Food 234 (includes GLUTEN, CASEIN and SALICYLATES!) Environmental Chemical 60 Mold 28 (includes candida albicans) \ Additive/Preservative 27 Food Coloring 14 Toxic Mineral/Metal 12 TOTAL 375 items tested http://www.elisaact.com/test/pdfs/EAB_Combos_NonHP.pdf If she is ordering a blood test, I also recommend the www.spectracell.com FIA 5000 blood test for $195. It will tell you both vitamin and antioxidant deficiencies. In some ways, I think the antioxidant deficiencies are almost a 'marker' for the detox/immune issues. Be sure to have your child drink lots of water the day before and day of (helps the blood draw). Also, they sell topical anesthetics for the needle over the counter now. Please let us know the results... Claire

Thanks Caz! Pfeiffer says (I sound like a broken record with that!) that just doing P5P somehow didn't work for lots of kids. That the most effective is usually some combination of the two. So we just do a combo ourselves. (Plus B2 for the P5P). So great to seem some sort of formal analysis! We just compounded a 'basic multivite' with 25 mg of each. Then I will add if needed. In fact, we spent an hour today with a 'basic program' list, and I will compound them. Ka-ching! I am curious as to the cost. Kirkman is interesting. MOST of their multivites now have a ton of B6 and/or P5P (disproportionate amount). Claire

My doctor also said no toxic levels of betacarotene (as opposed to Vit A). I didn't know if carrots are just betacarotene or vit A? Do you know? We starting cooking with expeller pressed coconut oil 6 months ago or so. I was hoping it would help my son's yeast. Never as good as extra virgin, but the extra virgin STINKS when you cook it, yuck. The refined is flavorless. Anyway, my son's yeast is horrible, so can't say it helped, though I will recheck mine soon. It is also supposed to help adrenal function and help you burn fat better. Re the color or no, Chemar cautioned me re alpha lipoic acid when my son started supplementing, and on another board someone commented that it was too much selenium. I wish there were a consensus on this, our judgements as parents is ongoing. Chemar and I had a great debate on stimming and I think it helps everyone to make better decisions. We all get along so great here, my biggest fear is if we are afraid to offer alternative viewpoints for fear of giving offense. THAT is when the learning ends, in my opinion. Ha ha re the board. My computer always gets tics! Claire

Marie, I just asked our DAN doctor re the shift in skin color from jucing carrots (a friend told me about this and I had thus carefully avoided it), and he said it was a sign of too much and should be avoided. I was asking for my own son--your situation may be different, but I am passing it on, just in case. He even gave it a name which I forgot (carotenosis???). I know that Vitamin A is toxic at high levels, but carrots make just be betacarotene, so that may not apply. We know many doctors here disagree on chelation, etc, so not stating this as a final definitive statement. Claire

Hi Marie, Thanks for the kind words. I hope you know that I was sincere in saying that juicing can only be a good thing, and that I am really glad that you continue to raise it--eventually more people will begin to understand if it makes sense for their lifestyle. You and I both know the biggest part is the parental time juicing and cleaning the juicer--not getting kids to drink it. So many of these children self-select lousy diets, and gulping a few ounces of juice takes seconds (and much less parental pressure) versus 10 minutes of chewing brocolli. Let alone the fact that they will eat a much higher quantity that way. Claire

Thanks Jennifer! The book just arrived today. My chewable zyne prime and peptizade should arrive tomorrow. Claire

Hi Marie, This is a good discussion. I do know the theories and understand the better absorption (always better with liquids and natural sources)-- but my son has drunk veggie juice for ~9 years (out of 11) and gets ~5-6 oz/day and still had all those deficiencies, per the various testing. And it didn't prevent him from craving wheat and milk only for a long time. And I make it fresh exactly when he takes it (although in preschool, I sometimes did the cubes like Alison and put it in fruit juice). So I guess what I personally would conclude for now (not having seen studies on their application for tic syndromes--since we never have the luxury of those) is that 1) juicing is great and 2) it may be sufficient for many, but not for all. e.g. It worked for your child, but not mine. Having said this, in an ideal world, I wish juicing and normal foods were all that was needed. I don't know if your child has some of the same issues as mine (yeast, toxic mercury, zinc deficiency and other vitamins, low amino acids, historical gluten/casein sensitivity). Yeast interferes with nutrient absorption tremendously, as does gluten sensitivity (think celiac). If juicing alone was enough to cure celiac/gluten sensitivity, I think we would have more success stories there. e.g. Some of our kids (both my son and I) have food sensitivities and/or do not have the enzymes for proteins. We need either betaine HCL (Caz) or the enzymes, or MT promotion possibly to store the enzymes. The pathways are so complex and each child's treatment seems individualized. I don't doubt one bit that it made a tremendous difference for your child. And your reminding people of it here is a good thing, since I took it for granted myself. Congratulations, I am a bit jealous that that is all it took for you, wish it were the same here! Claire

Hi Marie, This is a good discussion. I do know the theories and understand the better absorption (always better with liquids and natural sources)-- but my son has drunk veggie juice for ~9 years (out of 11) and gets ~5-6 oz/day and still had all those deficiencies, per the various testing. And it didn't prevent him from craving wheat and milk only for a long time. And I make it fresh exactly when he takes it (when in preschool). So I guess what I personally would conclude is that 1) juicing is great and 2) it may be sufficient for many, but not for all. e.g. It worked for your child, but not mine. Having said this, in an ideal world, I wish juicing and normal foods were all that was needed. I don't know if your child has some of the same issues as mine (yeast, toxic mercury--which I am not convinced is fully dealt with based on the blood test alone, severe zinc deficiency and other vitamins, low amino acids, historical gluten/casein sensitivity). Yeast interferes with nutrient absorption tremendously, as does gluten sensitivity (think celiac). If juicing alone was enough to cure celiac/gluten sensitivity, I think we would have more success stories there. e.g. Some of our kids (both my son and I) have food sensitivities and/or do not have the enzymes for proteins. We need either betaine HCL (Caz) or the enzymes, or MT promotion possibly to store the enzymes. The pathways are so complex and each child's treatment seems individualized. I don't doubt one bit that it made a tremendous difference for your child. And your reminding people of it here is a good thing, since I took it for granted myself. Congratulations, I am a bit jealous that that is all it took for you, wish it were the same here! Claire

Marie, I absolutely agree re juicing being great, and have been since my son was 2 (he is now 11), but vegies are not a reasonable source of amino acids. That must come from proteins. My son likes carrot and brocolli juices for veggies. Also, I am always careful about juicing with his yeast overgrowth. I have tried other vegies, but he doesn't like them. Can't force food down him! As for getting all the nutrients from juicing, I looked closely at the levels in veggies and for most B vitamins it takes way more than my son would drink. For A and C it is great. Here is the site I always use for vitamin levels of foods. http://www.fitday.com/WebFit/Index.html Also, I don't like the skin to get where you can see the color from the carrots...but that is just my own caution. I haven't read it causing harm. Chemar, I agree 100% re supplementing amino acids without direction AND testing. This is why I never supplemented, even though I knew my son was deficient. I will discuss this more with my doctor, and fortunately, he is extremely cautious--suits me just fine. In fact, I am also paying Pfeiffer to analyze the same test to get 2 opinions. Both said the balance is key. I will try more proteins, but this reminds me of when he drank 4 glasses of milk a day and was calcium deficient. It concerns me that he is low even with the Peptizade (protein) enzyme. Claire

Kim, Lots of the 'celiac symptoms' are just associated with gluten sensitivity. Many (like myself) believe this can be a temporary result of the immune depression. Many more people are gluten sensitive than celiac. If you want to test for it with no doctor's signature, many posters on the Braintalk gluten free/celiac board which I used to visit a lot suggest www.enterolab.com. It is a $99 stool test that can be done at home. They also had gene tests (for true celiac) and intestinal villi damage, but this is the cheapest route to get results. Another test is to simply remove wheat from the diet, but I don't like doing that unless I know it is an issue--too drastic a change. Best for those who can't justify the cost of the test. If your child has gluten sensitivity, theoretically the Houston Nutriceuticals AFP Peptizade enzyme can allow them to eat wheat. Not everyone though. The best thing in my opinion is to just test these out. At an case, glad your pediatrician wasn't worried about any serious mainstream issue, that must be a relief, regardless of whether you want to pursue more information. Claire

Caz, I remember your mentioning the betaine HCL now--thanks for the reminder, I will ask our DAN doctor about it this week. Do you know how that works with enzymes--do you do just the betaine HCL and no enzyme, or both in combo? Do they need to be spaced apart? Did you get my earlier PM that B6 deficiency can cause low HCL? I know you have been down this amino acid path sometime now. Are you seeing improvements from it? Franks, after a few months of enzymes I am starting to reduce my son's supplements a little also. Keep us posted if the lower dosage seems to work. Claire

We have so much focus on vitamins and specific immune tests here, but I now feel that amino acids are heavily overlooked. Caz did some testing there. For an extra $200 (not cheap!!!) you can add amino acid testing to the Great Plains OAT urine test (or buy it alone). We finally did this and uncovered deficiencies, as I mentioned. Here is a great site on amino acids. It discussed food sources, dosages, and deficiencies http://www.moondragon.org/health/nutrition...ics/aminoacids/ Anyway, my son has been battling this fatigue. I just looked up the ones he was deficient in, and I was near tears reading about the impact of deficiencies on fatigue... It is like I have this malnourished child being pushed in today's educational world (many hours of homework a night). I wish I had done this 6 months ago, but neither our DAN doctor nor Pfeiffer thought it necesssary. Ironically--after checking the protein sources--he gets those sources almost daily. So I am back to enzymes for better digesting the proteins, plus amino acid supplementation. Both our DAN doctor and Pfeiffer said supplementation wasn't so simple--the balance was key depending on this test. Both say amino acids are also known to feed yeast, where he is in bad shape right now. But they agree with the fact it is needed. I will let you know if things improve. I am writing this--especially to anyone whose child seems tired out easily even with the supplements. Claire