fightingmom

I think it's going to be okay, because I had some testing done shortly after I was on them -- (and had been on steroids a week before even) and they told me 48 hours, but I'll check. Thanks. I also don't suspect we are dealing with genuine allergies here, either. He's already been through all that testing several years back and wasn't allergic to anything except dust mites I think, like me. I believe this is a hypersensitivity, immune type reaction and if we can get it under control, "allergies" per se will not be our real issue.

This study does not explain the rapid response I saw to Pepcid, but does substantiate that histamine increases the permeability of the blood brain barrier and also the release of nitric oxide. There is definitely a link here! http://www.mendeley.com/research/role-nitric-oxide-histamineinduced-increases-permeability-bloodbrain-barrier/ This article mentions nitric oxide being responsible for brain cell death and a possible link to alzheimers, parkinson's, etc. and there is a major dopamine connection there with those diseases that is similar to PANDAS studies and research I have read through: http://mentalhealthupdate.blogspot.com/2010/07/nitric-oxide-prime-suspect-for-brain.html

Thank you!! Great info.

I have been tossing around the Vita-Mix or Blendtec for a long time. I just couldn't do it. I did score a really good deal on the Ninja 1200 Blender at Macy's that retails for about $150-180 on Amazon and I bought it during a 40% off sale with a 10% off coupon for $118.00 (Macy's always marks everything up, so their price was originally over $200 but it still worked out way cheaper). Anyway, this thing blends through the frozen fruit with such ease. I really like it. It also came with a smaller blender jar that is supposed to be good for grinding dry things like seeds, etc. but I haven't tried it yet. For the price, I have been pretty happy. It is way stronger than my cuisinart. As for tricks, I blend the spinach and juice first, then add the frozen fruit and finish off with a banana which helps make it smoother and keep the blender from getting too much of a workout.

Thanks, Nancy. I'll try to search for those older threads and if I have trouble, I'll PM you! Thank you.

This is definitely going to be tried in our house. Thanks for this!! Great idea.

YAH!! I AM connecting dots. It feels so good!!! I wish I could keep giving it to him this week to see what happens, but he's doing some allergy testing on thursday and I don't want to screw anything up. NEXT week though, I'm going to give it daily and see what I notice. He's also recently started having problems with dandruff and I can't help but wonder if he's dealing with what I have, which is dermatitis/eczema on my scalp and face - especially since my super fun allergy to hair dye developed. Maybe I'll take it myself daily and see if I notice any difference. We are both also ALWAYS battling sinus infections...perhaps it's triggered by this? I'm going to spend my evenings seeing if I can dig into a deeper link/explanation for the reason it helps with the anxiety and the causes of high histamine, etc. -- if either of you know already, feel free to save me some laptop digging till 2am the next few nights. Hehe. Have either of you testing for MTHFR? If so, would you mind sharing?

So, my DS14 complains on and off of reflux. Complains for a day or two, then fine for a few weeks, then a day or two. We've brought it up with doc before but they don't seem very concerned - did a test for h.pylori but otherwise suggested over the counter remedies. Several days ago - not sure exactly when, haven't documented it, but he was having a bad day behavior wise -- this had no relevance on the fact that I gave him Pepcid, but I gave it to him for his reflux. Hmm, an hour or two later he's acting much, much calmer and nicer to me. Something I noticed, but tucked in the back of my head because all I had given him was Pepcid and wasn't making much of a connection. Last week again, pepcid, but I gave it to him more as preventative because I have been dosing with advil as necessary and thought maybe it would help keep stomach in check. Didn't give a lot of thought, just figured it couldn't hurt, so I gave it. Well, I saw a change again. Was it advil dosing (not at same exact time - and had been giving him lower dose, 200mg just to keep it in system but not overload his liver but noticed advil was not effective at this low dose, so I won't bother with that) or was it the fact that I gave him pepcid again?? Hmmm. So, a few days ago I just gave him pepcid when he wasbeing really unmanageable. For example he had flipped out on me because I tried to give him some milk at breakfast. Seriously, I poured him a glass of milk and he flipped out telling me I'm "always changing everything". (I told you guys, he will only eat the green wrapper granola bars from Trader Joe's for breakfast, right? God help me if they ever stop making them.)Then I bought a new cat litter and he flipped out on me about "changing things" again. So...I gave him some pepcid, just for curiosity sake. About an hour later or so, he told me he made plans with his friends and nicely asked me if I needed anything before he went out. (He could normally care less about what I need lately, so this was a big change in demeanor)And, he was very receptive to me telling him what time to be home, etc. - no arguing about every little thing and a much, much better mood. So, that got me thinking. Pepcid is a H2 blocker/antihistamine. I've been really digging into this methylation pathway stuff and am seeing that histamine is actually a type of neurotransmitter and it is involved in this process. Wondering if this could all be related. Coincidentally, I have been having serious mystery allergies lately, as I have previously mentioned (hives, blistering rashes to meds, hair dye, bandaids, adhesives, etc.) and my pathology reports have all come back with my tissue as "chronic inflammation" which also coincides with my blood work, prior to surgery and over the last year. Now, this post isn't about me, it's about DS, but if there is a genetic component, I wonder if we are both dealing with high histamine. We go back to Dr. B. on thursday and I'm very anxious to see our labs and what he tested for. I would like to look into this more closely. I definitely want to have testing for MTHFR and histamine, thinking heavy metals, too. Will Dr. B. do all of these? Any of you had him do them before? Do I need to bring codes or info for these tests, or will he know what I'm asking for? Also, have any of you noticed a link to high histamine in your kids and reduction in symptoms with pepcid, or other h2 blockers or even h1 - which I haven't tried yet? Wondering if this also creates the inflammation aspect that is temporarily abated with doses of ibuprofen....and how much the methylation pathway and possible MTHFR gene could be playing a role. -- I was given a few links on facebook that seem rather convincing, but need to read them more closely. Anyone dig into this?

Hooray!!!! So glad it worked for you, too. Seriously, they are really delicious.

I have not dealt with these types of symptoms but my son responds extremely well and quickly to ibuprofen.

Oh wow, my brain scanned right over the 250mg a WEEK -- I interpreted that as daily and even thought that might be low. Good catch, EAMOM.

Best of luck. Keep us posted!

I'm finding tie after tie, link after link of connections to autism and down syndrome to mutations of this MTHFR gene. I think there is a BIG ole connection, that will give us the answers we need --- we'll find it.

It sort of make sense to me that the methionine is low while the dopamine and seratonin are high, especially knowing that the ammonia is a problem. What I have been reading all morning is that you can't really begin to supplement anything until you reduce the toxic loads of ammonia and heavy metals. If I am understanding correctly, it would make sense that if the first step of the cycle is compromised, then everything that follows will be out of whack. Ya know? That still doesn't help you in what to do, but maybe this chart will help? http://webcache.googleusercontent.com/search?q=cache:2oeeUBeravgJ:web.mac.com/autismprotocols/GeckoRanch/Protocol_files/Mutation%2520Summary%2520Group%2520Ver...xls+&cd=5&hl=en&ct=clnk&gl=us&client=firefox-a And this document summarizes things and is a much easier read with no head spinning circle charts: https://docs.google.com/viewer?a=v&q=cache:0gVAX8zpaksJ:www.vsan.org/rok-az/methylation/Genetic_Analysis_Report_summary_sheet_1.pdf+&hl=en&gl=us&pid=bl&srcid=ADGEESh2K_ZWk9zSIHnRD7-sFVolU-pgCAxXJeCKhtHi1lwZWx2ozgVBEfVMmL3sTGYLOnAmlKZq0jshNZjkxGWpnsjqjzgikC7Dp_ZhC2zkVKSHN4hfyEuqVMifdjwtYX-vpN8pNGYB&sig=AHIEtbT3BCjKrOoZfPpb-iM43MLlZvmJXg

I would get all my ducks in a row with all testing and get more antibiotics With this doc you are working with (maybe higher dose depending on age/weight of your child) and hang tight for Latimer. Being only an hour away from a doc with her reputation would be worth the wait to me.You will be looking at 6-8 weeks wait on Dr. B - by the time you wait through that you are already half way to your appt with Dr. L. Let her office know you can come on quick notice if they have a cancellation.

Wow, LLMD, great link. Okay, so my theory was so small in reality to the bigger picture. Homocysteine levels could be high or low, SAMe could help or hurt, NAC could help or hurt, Tryptophan, too. It all depends on where your child has a breach in the methyl cycle. Step1 leads to step 2, step 2 leads to step 3, etc. and there are some reverse flows in this cycle that remove toxins and help breakdown along the way. Our kids could all have a defect anywhere along the way in this cycle. If SAMe and NAC are used towards the end of the cycle in step 4 , but what if your child's mutation affects step 2 of the cycle? If step 2 isn't working properly, the other steps are thrown out of whack and some things may already be in excess or toxic within the cycle. Giving a supplement that converts in the wrong step or wrong direction could be throwing the entire cycle more out of balance and further throwing off dopamine or serotonin and other important neurotransmitters in the process. This would account for all of us that gave noticed that some supps that impact this cycle have made our kids bonkers. Also, noted that some mutations of the gene make some kids more susceptible to heavy metal toxicity, specifically aluminum and mercury (interesting). This page on the link from LLM posted explains it well but you sort of have to read the entire thing to comprehend it: http://www.heartfixer.com/AMRI-Nutrigenomics.htm#MTHFR:%A0%205,10-Methylenetetrahydrofolate%20Reductase%20(%DE%205-Methyl-Folate) So S&S, it looks like your issue is maybe with the first step with urea and sulphur - which explains the ammonia issue. LLM, you see positive results with tryptophan, maybe step 2 should be your focus? But then again I think SAMe has sulphur and perhaps you are dealing with that urea/sulphur issue too? I noticed in this link they had testing, which was expensive, but it seemed much more detailed than just the knowing which MTHFR gene mutation you are dealing with. That's good to know, but then it becomes more of a "then what?" and I think the key is in these other values listed in the sample report in that link.

It seems in some instances, yes. But, not all adelles of the MTHFR cause high homocysteine levels (I've seen in a few articles tonight that the heterozygous C677T specifically may not be high at all). So, if a person with heterozygous C677T actually has low homocysteine (homoecysteine, I believe is a precursor to methionine), supplementing with SAMe, NAC, methylcoblamin, etc. could in theory reduce the levels even further. Low homocysteine is also a bad thing and causes it's own issues. No problem. I edited my post a little bit above to say that I'm still working on trying to piece this together myself, but I think I'm headed in the right direction. I think the homocysteine levels will be a big piece of the puzzle.

It seems in some instances, yes. But, not all adelles of the MTHFR cause high homocysteine levels -- which SAMe would help decrease. I've seen in a few articles tonight that the heterozygous C677T specifically may not be high at all is not specific to hyperhomocysteine levels. So, maybe a person with heterozygous C677T actually has low homocysteine (methionine, I believe is a precursor to homocysteine and glutathione is part of this cycle too I think), supplementing with SAMe, NAC, methylcoblamin, etc. could in theory reduce the levels even further. I'm trying to figure this out, too. Just thinking outloud.

In this blogL http://itsnotmental.blogspot.com/2008/06/nutrition-genes-and-brain-dysfunctions.html I found a link to this supplement company that makes hypoallergenic supps - also the activated form of folate that it seems necessary in many cases: http://www.pureencapsulations.com/newscaps.asp?cap=20100511 "Metafolin® ((L)-5-MTHF) is stereochemically identical to naturally occurring 5-MTHF. Metafolin® does not require modification and can therefore execute the beneficial effects of folate regardless of MTHFR genotype. Metafolin® is also efficiently absorbed and assimilated. In a double-blind, randomized, placebo-controlled intervention study of 144 women, 5-MTHF supplementation resulted in a greater accumulation of 5-MTHF in red blood cells than equimolar doses of folic acid 6. Another advantage of Metafolin® is that 5-MTHF is the sole substrate for methionine synthase, which converts homocysteine to methionine to maintain vascular and neuronal health. In a placebo-controlled study of 30 women, 5-MTHF supplementation supported healthy homocysteine levels over a 3-week period 7. Contrary to folic acid, 5-MTHF readily traverses the blood-brain barrier to support neurological health. In a placebo-controlled trial of 123 individuals, 5-MTHF administered over 6 months promoted emotional well-being. 8 * "

And more: http://nwhealthcare.net/index.php?id=64 Along with this flow chart displaying related medical conditions: http://www.mindmeister.com/12694596/mthfr-related-health-problems

Denise, I posted a little bit ago on the facebook page a link to Dr. Jones' site. He is a Lyme doc, but the man knows his stuff. He gives a lot of information on the MTHFR genes, and some suggestions as to the common treatments. Here is the link: http://sites.google.com/site/drjoneskids/mthfr And, this seems to be more focused on autism, but I'm convinced some day we'll find links to all of this stuff: http://findingtherootcause.blogspot.com/

Oh, you are not alone. I'm still working on converting my husband and son, though my husband has been much more receptive (I've even converted him onto the concept of healthier food for our pets but that is an entirely different convo. Lol) -- my son still complains everytime we drive past a McDonald's or Wendy's because "he is the only one of his friends that never eats fast food". Last month, I gave in and got him a cheese burger and fries (which I gladly would have made him at home, but mine are not as good I guess) but I cringed inside as he ate it. Ten years ago I wouldn't have been bothered but I have been slowly gathering more knowledge over the years and seeing subtle changes in my own health from eating healthier. I actually starting on this path when looking for alternative treatments for my dog with cancer many moons ago. Have been slowly teaching myself and reading ever since. Someday, we will get there....I am aware of my husbands stash of twinkies next to the bed, but hey, he caves to my organic only produce rules and no meats with antibiotics or hormones, etc.-- he even loves my smoothies. So...let the man have his twinkies. Same to be said of the cookies in your house. We learn to choose out battles, lol. Like, just take your damn pills!

Look into Biotene products. I love their mouthwash very gentle, no sting: http://www.biotene.com/ "Unique oral rinse specially formulated to loosen BioFilm BioFilm is the thin film of bacteria, also known as plaque, which builds up in the mouth and attacks the teeth and gums. Biotene® PBF Oral Rinse helps loosen BioFilm for a cleaner, fresher mouth."

I didn't realize this was the concern, I was thinking along the lines of trying to get the dr. to prescribe more meds than needed for the month to save on cost. Figured that would be a big issue. BUT, what you are saying is common I think. I've even had multiple times the pharmacies run out of stuff and I have to come back for the rest of it later on. It should not be an issue for you to go back to pick up the balance due on your script if that was the worry. Sorry, I must have misunderstood.

It supports all the reading I have done over the last year or more, too. Hasn't been a silver bullet for us either, but I'm looking at a bigger picture of overall health and magnesium is part of it. I'm trying to really incorporate it through diet as much as possible. I think a lot of our current health state as humans overall could really be eliminated if we went back to the basics and ate whole foods and things were were not processed and loaded with hydrogenated crap and chemicals. Avoiding BPA's in plastics is another thing I've been trying to do. Exposure to toxins, pesticides, metals, etc. all are pounding our bodies and immune systems and I think that eating healthy and eliminating as much as we can will make a big difference. Of course this is the kind of thing that can take a long time before you notice any impact. I'm still traveling down this path as it can only help in the end.