Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 Hmmm...interesting! So I'm not crazy. This leads me now more towards benefits of natural anti inflammatory supplements - which I know that Carnosine is one of. I also found another natural anti-inflammatory/antioxidant supplement that claims to be safe and non-toxic and proven to work on children with ADD. If you read all the info about the product, it seems as though it may potentially also benefit apraxic kids (strictly my guess). Maybe someone with a more acute medical background can look at it. I'm willing to give it a shot to see what results we find. Too bad I already ordered the Carnosine. Maybe I'll try the Carnosine first and then this one if we don't see significant results. The website is www.pychealth.com > > > I thought (and believe wrote) about the same thing yrs ago..( been here at least 5 years). I also thought it was coincidental and so I do not remember if I continued with the ProEFA when they were sick as I can't recall if it was a fever with a stomach virus....nor can I remember if I gave them tylenol or motrin... > Motrin, Advil and Ibuprophen act blood thinners, I believe, as does the fish pills...so can that somehow be the link??? > Good question for the group...has anyone else seen this and if so what did your child take and did you continue with the fish pills???? > > Another interesting link?? > > kathy nj > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2006 Report Share Posted February 15, 2006 My son talks no stop after taking Motrin… I thought it was an effect of the fever or something…Very interesting!!! Giseli WA _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Something else interesting along the same lines that I just thought about this morning..(can u tell what's on my mind 24x7?) When you say " blood thinners " I think of my mother who cannot take blood thinners such as Advil, Ibuprophen, etc (Tylenol is not a blood thinner). She has a blood disorder called " Von Willebrants " (not sure if correct spelling). Anyway, turns out that because of this blood disorder, she bruises too easily. Now...I think about Dylan (verbal/oral apraxia), how he responds well to anti inflammatories from a speech perspective, and the interesting part is that neither my husband nor I remember him having a bruise! You would think that with all the falling he does and knocking around, he would have a bruise. Do any of you notice bruising on your apraxic child? Could this mean that there is something possibly lacking in their blood? I'm thinking of seeing a hemotologist, but I'll do a little more research on my own first. > > > > > > I thought (and believe wrote) about the same thing yrs ago..( > been here at least 5 years). I also thought it was coincidental and > so I do not remember if I continued with the ProEFA when they were > sick as I can't recall if it was a fever with a stomach virus....nor > can I remember if I gave them tylenol or motrin... > > Motrin, Advil and Ibuprophen act blood thinners, I believe, as > does the fish pills...so can that somehow be the link??? > > Good question for the group...has anyone else seen this and if so > what did your child take and did you continue with the fish pills???? > > > > Another interesting link?? > > > > kathy nj > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 My gosh! Meg (apraxic) does not bruise easily, and she gets many many boo- boos. I honestly cannot think of a time she had a bruise, but I'll have to think some more on that and ask around. But her sister Kate (NT so far) gets bruises all of the time (she has I think 3 right as we speak). Weird coincidence? Or something more?.... Kerri > > > > > > > > > I thought (and believe wrote) about the same thing yrs ago..( > > been here at least 5 years). I also thought it was coincidental > and > > so I do not remember if I continued with the ProEFA when they were > > sick as I can't recall if it was a fever with a stomach > virus....nor > > can I remember if I gave them tylenol or motrin... > > > Motrin, Advil and Ibuprophen act blood thinners, I believe, as > > does the fish pills...so can that somehow be the link??? > > > Good question for the group...has anyone else seen this and if > so > > what did your child take and did you continue with the fish > pills???? > > > > > > Another interesting link?? > > > > > > kathy nj > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Ibuprofen is a " COX-inhibitor " and as such inhibits prostaglandin synthesis and has an effect on platelets, thus the " blood thinner " label as you have mentioned. Yet it has mild platelet effects so is not actually used to decrease risk of clots etc. Omega 3s also have an impact on decreasing prostaglandin synthesis (so the common pathway) - thus the potential effect on " bleeding " - again a weak effect and why we don't see a huge problem with bleeding issues and omega use. However it is enough of a concern that you are recommended to stop taking in prior to surgery etc (just like motrin). This is an inflammatory pathway (that also effects platelet function) that is upregulated by many stimuli and for many reasons. It is quite possible that in some of the apraxic kids, it is upregulated...and if that's the case, a cox-inhibitor may have some benefit. A little bit of motrin is not a bad thing - but given chronically it also has its adverse effects so one needs to be careful. It can damage kidney function - and also cause stomach irritation that could lead to ulcers or a serious bleed. Remember - Vioxx is a GREAT cox-inhibitor, and although it was an excellent drug that helped alot of rheumatoid arthritis patients and others with chronic pain - its off the market for its adverse effects, and Merck is in big financial trouble. The motrin link is a very interesting observation, though and brings up the potential role inflammation could be playing...particularly in the kids with allergies & asthma - ie where their bodies are constantly in an " inflamed state " . I wouldn't put time into a visit to a hematologist for this, though. You will pretty much be wasting your time. Although they spend quite a bit of time seeing children with increased bruising - " no bruising " would be something they would tell you not to worry about, think odd as a reason for a visit, and they will know NOTHING about apraxia. There really isn't a test out there to help clarify this right now. My apraxic 2 year old son has normal bruising - as well as chronic petechiae (one of the reasons I was worried about starting omegas with him - since he already seems at increased risk for bleeding...but we don't know the cause...von Willebrand work-up negative... and really not much to do about it even if we had a test to show that his platelets weren't functioning properly. I have friends at NIH who do platelet research who have all kinds of tests they could do - since of course I've asked about it - but it would require a trip to Washington - and in the end there really isn't much in the line of treatment). Fortunately the omegas haven't caused any bleeding issues...only talking BTW we are seeing another surge after starting the pro-EPA last week. Increased clarity of some words he had before, new " K " or " C " sound - which he didn't have last week, and new 4-5 word sentenses that I can figure out (although I doubt a non-family member could understand him). Great stuff - and exponential improvement since november, but I feel like we have max'd out how high I can go with the omegas and feel comfortable about it, especially given his platelet issues. But since we've seen an impressive surge with each increase - it makes me wonder just how good he could be doing if we had the right formula or understood exactly why the omegas are working so well for him. - [ ] Re: fevers and speech Something else interesting along the same lines that I just thought about this morning..(can u tell what's on my mind 24x7?) When you say " blood thinners " I think of my mother who cannot take blood thinners such as Advil, Ibuprophen, etc (Tylenol is not a blood thinner). She has a blood disorder called " Von Willebrants " (not sure if correct spelling). Anyway, turns out that because of this blood disorder, she bruises too easily. Now...I think about Dylan (verbal/oral apraxia), how he responds well to anti inflammatories from a speech perspective, and the interesting part is that neither my husband nor I remember him having a bruise! You would think that with all the falling he does and knocking around, he would have a bruise. Do any of you notice bruising on your apraxic child? Could this mean that there is something possibly lacking in their blood? I'm thinking of seeing a hemotologist, but I'll do a little more research on my own first. > > > > > > I thought (and believe wrote) about the same thing yrs ago..( > been here at least 5 years). I also thought it was coincidental and > so I do not remember if I continued with the ProEFA when they were > sick as I can't recall if it was a fever with a stomach virus....nor > can I remember if I gave them tylenol or motrin... > > Motrin, Advil and Ibuprophen act blood thinners, I believe, as > does the fish pills...so can that somehow be the link??? > > Good question for the group...has anyone else seen this and if so > what did your child take and did you continue with the fish pills???? > > > > Another interesting link?? > > > > kathy nj > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Thanks for the insight. I'm going to try this product called " Flavay " which I'm considering a natural cox-inhibitor to see if that works. Some of the success stories are regarding improvement in speech. It's a well researched product and has been used in Europe for 50 years. It has only recently come here to the US. It also acts to remove toxic chemicals. I read that inflammation can be caused by bacteria, virus, or toxins. Therefore, I'm wondering whether removing toxins (via a chelating product, or in my case, we're going to try the mud bath), would reduce the inflammation. Does this sound like it makes sense? > > > > > > > > > I thought (and believe wrote) about the same thing yrs ago..( > > been here at least 5 years). I also thought it was coincidental > and > > so I do not remember if I continued with the ProEFA when they were > > sick as I can't recall if it was a fever with a stomach > virus....nor > > can I remember if I gave them tylenol or motrin... > > > Motrin, Advil and Ibuprophen act blood thinners, I believe, as > > does the fish pills...so can that somehow be the link??? > > > Good question for the group...has anyone else seen this and if > so > > what did your child take and did you continue with the fish > pills???? > > > > > > Another interesting link?? > > > > > > kathy nj > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 I don't know anything about flavay - looked up the web page and didn't get much info. Mud bath is pretty benign. The key is to do no harm, and hope for some benefit. There are potential adverse effects from some types of chelation as well, depending on what you are talking about. The cure should not be more dangerous than the condition its treating. Risks and benefits need to be weighed carefully - for any treatment. Not all inflammation is bad - its the body's response to infection etc. Just when its off balance - like in allergies, auto-immune disorders etc, its a bad thing. But in response to a virus or bacteria - its your immune system doing what it is supposed to be doing. - [ ] Re: fevers and speech Thanks for the insight. I'm going to try this product called " Flavay " which I'm considering a natural cox-inhibitor to see if that works. Some of the success stories are regarding improvement in speech. It's a well researched product and has been used in Europe for 50 years. It has only recently come here to the US. It also acts to remove toxic chemicals. I read that inflammation can be caused by bacteria, virus, or toxins. Therefore, I'm wondering whether removing toxins (via a chelating product, or in my case, we're going to try the mud bath), would reduce the inflammation. Does this sound like it makes sense? > > Ibuprofen is a " COX-inhibitor " and as such inhibits prostaglandin synthesis > and has an effect on platelets, thus the " blood thinner " label as you have > mentioned. Yet it has mild platelet effects so is not actually used to > decrease risk of clots etc. Omega 3s also have an impact on decreasing > prostaglandin synthesis (so the common pathway) - thus the potential effect > on " bleeding " - again a weak effect and why we don't see a huge problem with > bleeding issues and omega use. However it is enough of a concern that you > are recommended to stop taking in prior to surgery etc (just like motrin). > This is an inflammatory pathway (that also effects platelet function) that > is upregulated by many stimuli and for many reasons. It is quite possible > that in some of the apraxic kids, it is upregulated...and if that's the > case, a cox-inhibitor may have some benefit. A little bit of motrin is not > a bad thing - but given chronically it also has its adverse effects so one > needs to be careful. It can damage kidney function - and also cause stomach > irritation that could lead to ulcers or a serious bleed. Remember - Vioxx > is a GREAT cox-inhibitor, and although it was an excellent drug that helped > alot of rheumatoid arthritis patients and others with chronic pain - its off > the market for its adverse effects, and Merck is in big financial trouble. > > The motrin link is a very interesting observation, though and brings up the > potential role inflammation could be playing...particularly in the kids with > allergies & asthma - ie where their bodies are constantly in an " inflamed > state " . > > I wouldn't put time into a visit to a hematologist for this, though. You > will pretty much be wasting your time. Although they spend quite a bit of > time seeing children with increased bruising - " no bruising " would be > something they would tell you not to worry about, think odd as a reason for > a visit, and they will know NOTHING about apraxia. There really isn't a > test out there to help clarify this right now. > > My apraxic 2 year old son has normal bruising - as well as chronic petechiae > (one of the reasons I was worried about starting omegas with him - since he > already seems at increased risk for bleeding...but we don't know the > cause...von Willebrand work-up negative... and really not much to do about > it even if we had a test to show that his platelets weren't functioning > properly. I have friends at NIH who do platelet research who have all kinds > of tests they could do - since of course I've asked about it - but it would > require a trip to Washington - and in the end there really isn't much in the > line of treatment). Fortunately the omegas haven't caused any bleeding > issues...only talking BTW we are seeing another surge after starting the > pro-EPA last week. Increased clarity of some words he had before, new " K " or > " C " sound - which he didn't have last week, and new 4-5 word sentenses that > I can figure out (although I doubt a non-family member could understand > him). Great stuff - and exponential improvement since november, but I feel > like we have max'd out how high I can go with the omegas and feel > comfortable about it, especially given his platelet issues. But since we've > seen an impressive surge with each increase - it makes me wonder just how > good he could be doing if we had the right formula or understood exactly why > the omegas are working so well for him. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2006 Report Share Posted February 16, 2006 Speaking of viruses... What about the possibility of someone having a chronic low-grade infection - like roseola or herpes? Would you expect this result from Motrin? I've read some pretty amazing stories about kids with developmental issues actually having these types of infections and getting much better on Valtrex or natural anti-virals. Just throwing it out there for anyone who actually knows how this stuff works to think about (I have no clue). Kerri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 That's an interesting point which is, could there be some underlying chronic infection, bacterial or viral that is causing inflammation? Then, the inflammation is alleviated by either ibruprophen or natural supplementation that have " anti-inflammatory " effects such as the fish oils. Even more interesting (or maybe pure coincidence) is that my apraxic son has always had large lymph nodes in his neck. When he gets sick, they get much bigger (which is normal). I had him checked a while ago (over a year at least) with the dr. who said not to worry about it. But, now this leads me to believe that there is something that maybe his body might be fighting, and thereby affecting his neurological system, i.e. manifesting as apraxia. When I look up lymph nodes on the internet, it says that enlarged lymph nodes can be caused by " infection, inflammatory conditions... " There's that word again, INFLAMMATORY. What could be causing the inflammation? That is what I would like to try to remedy and see if that affects the apraxia. Possibly toxins from vaccinations or other environmental toxins that the body cannot rid itself of? I read that " pollution thru vaccinations has brought nervous instability, lack of tone, vascular irregularities... " (i.e.remember the discussion regarding bruising easily or no bruising?!). Not to say that vaccinations are the only culprit. There are so many toxins all around us from food, water, and air. My strategy to try to reduce inflammation is going to be " LLs magnetic clay bath " for removing environmental toxins (includes removing toxins from vaccinations), and this Flavay product that I've mentioned before. By the way, the website for Flavay that has A LOT of information is www.pychealth.com. If you read about these two products, it seems to be a good fit for what I'm suspecting to really help alleviate the issue with the end result of at least masking apraxia. My wheels are really turning here, and I'm sure some will disagree with my thinking along the way, but if we don't try, we'll never know. I know that when first came up with the fish oil theory, it wasn't accepted by everyone (and maybe still isn't?), but it works! I just want to do more. Shauna from NJ > > Speaking of viruses... > > What about the possibility of someone having a chronic low-grade > infection - like roseola or herpes? Would you expect this result > from Motrin? I've read some pretty amazing stories about kids with > developmental issues actually having these types of infections and > getting much better on Valtrex or natural anti-virals. > > Just throwing it out there for anyone who actually knows how this > stuff works to think about (I have no clue). > > Kerri > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Thanks for the link to flavay. I am still wanting more information on mechanism in addition to looking at a laundry-list of claims. The problem with these " nutritional supplements " is that they are not regulated AT ALL. Anyone can make any claim without much to back it up. It may end up being something very worthwhile - so don't take this the wrong way... but I would want to see the list of adverse effects and critically look at what studies have been done. (At this point too much on my plate to actually do that at the moment). But there are adverse effects to EVERYTHING. When one starts talking about modifying nitric oxide (which is my area of research) - one also has to be very careful. This is a very potent and important molecule in the body. I am just not sure how this product is doing what the claims say it is doing. I am also surprised I have never heard of it given that I have attended every international nitric oxide society meeting for the last 7 years. Just proceed with caution and make sure you have all your facts before you give any therapy to your child. We need to ask questions - risks and benefits - from any suggested therapy. That includes medicines given by your doctor too. Know that the antibiotic for the ear infection that would probably clear on its own without any intervention may cause diarrhea or a severe allergic reaction. But the ear infection will cause pain and in the case of an apraxic child - fluid collections may impact hearing - which is the last thing we want for our little guys who are already at a disadvantage with their speech. Weigh risk and benefit. Nothing is without risk - (even fish oil). Just because something is " natural " doesn't mean that it is afe. - [ ] Re: fevers and speech That's an interesting point which is, could there be some underlying chronic infection, bacterial or viral that is causing inflammation? Then, the inflammation is alleviated by either ibruprophen or natural supplementation that have " anti-inflammatory " effects such as the fish oils. Even more interesting (or maybe pure coincidence) is that my apraxic son has always had large lymph nodes in his neck. When he gets sick, they get much bigger (which is normal). I had him checked a while ago (over a year at least) with the dr. who said not to worry about it. But, now this leads me to believe that there is something that maybe his body might be fighting, and thereby affecting his neurological system, i.e. manifesting as apraxia. When I look up lymph nodes on the internet, it says that enlarged lymph nodes can be caused by " infection, inflammatory conditions... " There's that word again, INFLAMMATORY. What could be causing the inflammation? That is what I would like to try to remedy and see if that affects the apraxia. Possibly toxins from vaccinations or other environmental toxins that the body cannot rid itself of? I read that " pollution thru vaccinations has brought nervous instability, lack of tone, vascular irregularities... " (i.e.remember the discussion regarding bruising easily or no bruising?!). Not to say that vaccinations are the only culprit. There are so many toxins all around us from food, water, and air. My strategy to try to reduce inflammation is going to be " LLs magnetic clay bath " for removing environmental toxins (includes removing toxins from vaccinations), and this Flavay product that I've mentioned before. By the way, the website for Flavay that has A LOT of information is www.pychealth.com. If you read about these two products, it seems to be a good fit for what I'm suspecting to really help alleviate the issue with the end result of at least masking apraxia. My wheels are really turning here, and I'm sure some will disagree with my thinking along the way, but if we don't try, we'll never know. I know that when first came up with the fish oil theory, it wasn't accepted by everyone (and maybe still isn't?), but it works! I just want to do more. Shauna from NJ > > Speaking of viruses... > > What about the possibility of someone having a chronic low-grade > infection - like roseola or herpes? Would you expect this result > from Motrin? I've read some pretty amazing stories about kids with > developmental issues actually having these types of infections and > getting much better on Valtrex or natural anti-virals. > > Just throwing it out there for anyone who actually knows how this > stuff works to think about (I have no clue). > > Kerri > Quote Link to comment Share on other sites More sharing options...
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