Guest guest Posted July 21, 2007 Report Share Posted July 21, 2007 oh- so sorry claudia- i know that everyone including myself appreciate so much all the work you have done and we are all sorry that the medical community does not show an interest- charlotte henry ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2007 Report Share Posted July 21, 2007 I am so sorry to hear this. Thank you for all you've done and continue to do to help us all. I hope ph is doing well. claudia.morris wrote: >So far 4 for 4 rejections of grant applications for getting an apraxic >clinical trial funded looking at vit E and omega 3 in apraxia. I've >been focusing on the autism foundations...but since apraxia is not yet >truly appreciated as a significant co-morbidity for autism, its not >getting attention (But there aren't any apraxia foundations out there >funding research. They also aren't really interesting in a study that >includes kids with apraxia without autism. But if we have a treatment >that helps apraxia...regardless of whether you are on the >spectrum...looking at differences in the 2 groups may also shed some >light. Unfortunately I am new to the neurodevelopmental >world...although everyone knows me in sickle cell disease circles. Hard >to get funding when you are not part of the club. > >I am just very bummed and frustrated, since I've spent so many nights >and weekends putting grant applications together. Perhaps the time >would have been better spent with my kids - since its gotten me nowhere. > >Marilyn Agin and I will write up a case series...so that at the very >least there will be " something " published on this topic that families >and MDs can refer to. Just very frustrating. - > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2007 Report Share Posted July 21, 2007 > > So far 4 for 4 rejections of grant applications for getting an apraxic > clinical trial funded looking at vit E and omega 3 in apraxia. I've > been focusing on the autism foundations...but since apraxia is not yet > truly appreciated as a significant co-morbidity for autism, its not > getting attention (But there aren't any apraxia foundations out there > funding research. They also aren't really interesting in a study that > includes kids with apraxia without autism. But if we have a treatment > that helps apraxia...regardless of whether you are on the > spectrum...looking at differences in the 2 groups may also shed some > light. Unfortunately I am new to the neurodevelopmental > world...although everyone knows me in sickle cell disease circles. Hard > to get funding when you are not part of the club. > > I am just very bummed and frustrated, since I've spent so many nights > and weekends putting grant applications together. Perhaps the time > would have been better spent with my kids - since its gotten me nowhere. > > Marilyn Agin and I will write up a case series...so that at the very > least there will be " something " published on this topic that families > and MDs can refer to. Just very frustrating. - > , Jeanne here. I also have found a lot of political issues, too as you pointed out. I am taking a grant writing course for a few hours, but also I will try and find out if there is a way to get in touch with wealthy people who may want to invest in this wonderful project either the study or the docmentary. Will stay in touch. You are an angel to all because of your perceverance and what you are doing as a medical doctor. Do not give up hope! I know I will keep knocking down the doors, untill they hear us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2007 Report Share Posted July 21, 2007 > > > > So far 4 for 4 rejections of grant applications for getting an > apraxic > > clinical trial funded looking at vit E and omega 3 in apraxia. > I've > > been focusing on the autism foundations...but since apraxia is not > yet > > truly appreciated as a significant co-morbidity for autism, its not > > getting attention (But there aren't any apraxia foundations out > there > > funding research. They also aren't really interesting in a study > that > > includes kids with apraxia without autism. But if we have a > treatment > > that helps apraxia...regardless of whether you are on the > > spectrum...looking at differences in the 2 groups may also shed > some > > light. Unfortunately I am new to the neurodevelopmental > > world...although everyone knows me in sickle cell disease circles. > Hard > > to get funding when you are not part of the club. > > > > I am just very bummed and frustrated, since I've spent so many > nights > > and weekends putting grant applications together. Perhaps the time > > would have been better spent with my kids - since its gotten me > nowhere. > > > > Marilyn Agin and I will write up a case series...so that at the > very > > least there will be " something " published on this topic that > families > > and MDs can refer to. Just very frustrating. - > > > > , > Jeanne here. I also have found a lot of political issues, too as you > pointed out. I am taking a grant writing course for a few hours, but > also I will try and find out if there is a way to get in touch with > wealthy people who may want to invest in this wonderful project > either the study or the docmentary. Will stay in touch. You are an > angel to all because of your perceverance and what you are doing as a > medical doctor. Do not give up hope! I know I will keep knocking down > the doors, untill they hear us. P.S. I have contacted all the foundations in NJ so far and the same thing. I will look into some others universities, etc, that I didn't pursue before. The way I look at it even if I didn't get funding from the ones who rejected the applications at least they are learning about the disorder from the information sent and the websites. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2007 Report Share Posted July 21, 2007 Thanks for all you do, , towards giving our kids a voice through research. Apraxia and all the other issues our kids face is mind-boggling. It’s clear and determined voices like yours that keep me plugging away knowing I’m not alone in helping my 6 year old daughter. I hope you and your family take time to do something fun today. Warmest regards, Kitty _____ From: [mailto: ] On Behalf Of claudia.morris Sent: Saturday, July 21, 2007 12:31 AM Subject: [ ] apraxia research So far 4 for 4 rejections of grant applications for getting an apraxic clinical trial funded looking at vit E and omega 3 in apraxia. I've been focusing on the autism foundations...but since apraxia is not yet truly appreciated as a significant co-morbidity for autism, its not getting attention (But there aren't any apraxia foundations out there funding research. They also aren't really interesting in a study that includes kids with apraxia without autism. But if we have a treatment that helps apraxia...regardless of whether you are on the spectrum...looking at differences in the 2 groups may also shed some light. Unfortunately I am new to the neurodevelopmental world...although everyone knows me in sickle cell disease circles. Hard to get funding when you are not part of the club. I am just very bummed and frustrated, since I've spent so many nights and weekends putting grant applications together. Perhaps the time would have been better spent with my kids - since its gotten me nowhere. Marilyn Agin and I will write up a case series...so that at the very least there will be " something " published on this topic that families and MDs can refer to. Just very frustrating. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2007 Report Share Posted July 21, 2007 Would you consider mentioning the casin effect also in your case study? That would be great as I am amazed at the transformation in my 2.5 yr old since going casin free and mostly glutten free. The ped. do not mention to eliminate dairy or wheat at all! Now the kid doesn’t qualify for most help and will most likely be discharged from speech in 3-6 months. _____ From: [mailto: ] On Behalf Of claudia.morris Sent: Friday, July 20, 2007 11:31 PM Subject: [ ] apraxia research So far 4 for 4 rejections of grant applications for getting an apraxic clinical trial funded looking at vit E and omega 3 in apraxia. I've been focusing on the autism foundations...but since apraxia is not yet truly appreciated as a significant co-morbidity for autism, its not getting attention (But there aren't any apraxia foundations out there funding research. They also aren't really interesting in a study that includes kids with apraxia without autism. But if we have a treatment that helps apraxia...regardless of whether you are on the spectrum...looking at differences in the 2 groups may also shed some light. Unfortunately I am new to the neurodevelopmental world...although everyone knows me in sickle cell disease circles. Hard to get funding when you are not part of the club. I am just very bummed and frustrated, since I've spent so many nights and weekends putting grant applications together. Perhaps the time would have been better spent with my kids - since its gotten me nowhere. Marilyn Agin and I will write up a case series...so that at the very least there will be " something " published on this topic that families and MDs can refer to. Just very frustrating. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2007 Report Share Posted July 21, 2007 I think those of us with casein changes should write up our own " cases " of what we saw so we could set up a folder. It may be helpful to those contemplating it by showing them what to look for, etc. and especially in the beginning when you don't know if a bad change is a problem. Just an idea. I think I am going to do it in liue of answering the same email over and over. Either way, can you tell me what you saw? I'd like to compare notes as my son is the same age. Zeissler wrote: >Would you consider mentioning the casin effect also in your case study? >That would be great as I am amazed at the transformation in my 2.5 yr old >since going casin free and mostly glutten free. The ped. do not mention to >eliminate dairy or wheat at all! Now the kid doesn’t qualify for most help >and will most likely be discharged from speech in 3-6 months. > > > > > > _____ > >From: >[mailto: ] On Behalf Of claudia.morris >Sent: Friday, July 20, 2007 11:31 PM > >Subject: [ ] apraxia research > > > >So far 4 for 4 rejections of grant applications for getting an apraxic >clinical trial funded looking at vit E and omega 3 in apraxia. I've >been focusing on the autism foundations...but since apraxia is not yet >truly appreciated as a significant co-morbidity for autism, its not >getting attention (But there aren't any apraxia foundations out there >funding research. They also aren't really interesting in a study that >includes kids with apraxia without autism. But if we have a treatment >that helps apraxia...regardless of whether you are on the >spectrum...looking at differences in the 2 groups may also shed some >light. Unfortunately I am new to the neurodevelopmental >world...although everyone knows me in sickle cell disease circles. Hard >to get funding when you are not part of the club. > >I am just very bummed and frustrated, since I've spent so many nights >and weekends putting grant applications together. Perhaps the time >would have been better spent with my kids - since its gotten me nowhere. > >Marilyn Agin and I will write up a case series...so that at the very >least there will be " something " published on this topic that families >and MDs can refer to. Just very frustrating. - > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2007 Report Share Posted July 21, 2007 Same result here... 9 years of speech therapy... little progress 6 months without casien.... discharged with only minor articulation issues remaining! Janice [ ] apraxia research So far 4 for 4 rejections of grant applications for getting an apraxic clinical trial funded looking at vit E and omega 3 in apraxia. I've been focusing on the autism foundations...but since apraxia is not yet truly appreciated as a significant co-morbidity for autism, its not getting attention (But there aren't any apraxia foundations out there funding research. They also aren't really interesting in a study that includes kids with apraxia without autism. But if we have a treatment that helps apraxia...regardless of whether you are on the spectrum...looking at differences in the 2 groups may also shed some light. Unfortunately I am new to the neurodevelopmental world...although everyone knows me in sickle cell disease circles. Hard to get funding when you are not part of the club. I am just very bummed and frustrated, since I've spent so many nights and weekends putting grant applications together. Perhaps the time would have been better spent with my kids - since its gotten me nowhere. Marilyn Agin and I will write up a case series...so that at the very least there will be " something " published on this topic that families and MDs can refer to. Just very frustrating. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2007 Report Share Posted July 22, 2007 Liz The biggest change I have seen is improved bm's, which in turned improved the diaper rash; lack of irritability, better cooperation, generally better mood, very affectionate, less tantrums. Both of his speech therapists have commented on the speech improvements, we have moved to articulation therapy - which is huge as now we at least have some sort of " word " as a starting point. When he scams diary from people, a day or two later he has nasty nasty bm's (no consistency mainly grit), major mood swings, more aggression (hits, bites), less willing to imitate words or even use the words he does have, very whinny/clingly. What people do not seem to understand is a " little bit " causes these problems and it is a big deal to me. [ ] apraxia research > > > >So far 4 for 4 rejections of grant applications for getting an apraxic >clinical trial funded looking at vit E and omega 3 in apraxia. I've >been focusing on the autism foundations...but since apraxia is not yet >truly appreciated as a significant co-morbidity for autism, its not >getting attention (But there aren't any apraxia foundations out there >funding research. They also aren't really interesting in a study that >includes kids with apraxia without autism. But if we have a treatment >that helps apraxia...regardless of whether you are on the >spectrum...looking at differences in the 2 groups may also shed some >light. Unfortunately I am new to the neurodevelopmental >world...although everyone knows me in sickle cell disease circles. Hard >to get funding when you are not part of the club. > >I am just very bummed and frustrated, since I've spent so many nights >and weekends putting grant applications together. Perhaps the time >would have been better spent with my kids - since its gotten me nowhere. > >Marilyn Agin and I will write up a case series...so that at the very >least there will be " something " published on this topic that families >and MDs can refer to. Just very frustrating. - > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2007 Report Share Posted July 22, 2007 For us, it was calcium EDTA. Last July my nearly 5 year old daughter had maybe 5 consistent words. In August she started getting Calcium EDTA infusions. In June we did the 8th infusion and she's still excreting high levels of lead in her urine. She's also up to sentences up to 8 words in length. The irony of it all is that she's been in speech therapy/early intervention/preschool since 15 months. We stopped going last May before we started the infusions and before the speech started kicking in. She's been casein and gluten free most of her life because of her brother. It's important to note that the form of EDTA is calcium as other forms could be dangerous. Vicki > > Same result here... 9 years of speech therapy... little progress > > 6 months without casien.... discharged with only minor articulation issues remaining! > > Janice > > > [sPAM] RE: [ ] apraxia research > > > Would you consider mentioning the casin effect also in your case study? > That would be great as I am amazed at the transformation in my 2.5 yr old > since going casin free and mostly glutten free. The ped. do not mention to > eliminate dairy or wheat at all! Now the kid doesn't qualify for most help > and will most likely be discharged from speech in 3-6 months. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2007 Report Share Posted July 22, 2007 Thank you for working so hard to help our kids. I have recently started adding vitamin E to my sons diet and have seen changes in him. (He has apraxia, sensory issues, dyspraxic and possibly pdd-nos) Please know that your effort are very much appreciated and are helping many of us achieve positive changes in our children. I can't thank you enough! -------------- Original message -------------- From: " claudia.morris " <claudia.morris@...> So far 4 for 4 rejections of grant applications for getting an apraxic clinical trial funded looking at vit E and omega 3 in apraxia. I've been focusing on the autism foundations...but since apraxia is not yet truly appreciated as a significant co-morbidity for autism, its not getting attention (But there aren't any apraxia foundations out there funding research. They also aren't really interesting in a study that includes kids with apraxia without autism. But if we have a treatment that helps apraxia...regardless of whether you are on the spectrum...looking at differences in the 2 groups may also shed some light. Unfortunately I am new to the neurodevelopmental world...although everyone knows me in sickle cell disease circles. Hard to get funding when you are not part of the club. I am just very bummed and frustrated, since I've spent so many nights and weekends putting grant applications together. Perhaps the time would have been better spent with my kids - since its gotten me nowhere. Marilyn Agin and I will write up a case series...so that at the very least there will be " something " published on this topic that families and MDs can refer to. Just very frustrating. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2007 Report Share Posted July 22, 2007 We are living paralell lives only my guy would be more stroke-victim like if he scammed some. The best way to describe to the folks who don't get it is " Would you give a little bit of heroin to an addict? " Zeissler wrote: >Liz >The biggest change I have seen is improved bm's, which in turned improved >the diaper rash; lack of irritability, better cooperation, generally better >mood, very affectionate, less tantrums. Both of his speech therapists have >commented on the speech improvements, we have moved to articulation therapy >- which is huge as now we at least have some sort of " word " as a starting >point. > >When he scams diary from people, a day or two later he has nasty nasty bm's >(no consistency mainly grit), major mood swings, more aggression (hits, >bites), less willing to imitate words or even use the words he does have, >very whinny/clingly. > >What people do not seem to understand is a " little bit " causes these >problems and it is a big deal to me. > > > [ ] apraxia research >> >> >> >>So far 4 for 4 rejections of grant applications for getting an apraxic >>clinical trial funded looking at vit E and omega 3 in apraxia. I've >>been focusing on the autism foundations...but since apraxia is not yet >>truly appreciated as a significant co-morbidity for autism, its not >>getting attention (But there aren't any apraxia foundations out there >>funding research. They also aren't really interesting in a study that >>includes kids with apraxia without autism. But if we have a treatment >>that helps apraxia...regardless of whether you are on the >>spectrum...looking at differences in the 2 groups may also shed some >>light. Unfortunately I am new to the neurodevelopmental >>world...although everyone knows me in sickle cell disease circles. Hard >>to get funding when you are not part of the club. >> >>I am just very bummed and frustrated, since I've spent so many nights >>and weekends putting grant applications together. Perhaps the time >>would have been better spent with my kids - since its gotten me nowhere. >> >>Marilyn Agin and I will write up a case series...so that at the very >>least there will be " something " published on this topic that families >>and MDs can refer to. Just very frustrating. - >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 I think a folder on this site with our cases would be great. My husband is no way interested in doing either and we have big problems with that we need to give it a try. Kathy ________________________________________________________________________________\ ____ Get the free toolbar and rest assured with the added security of spyware protection. http://new.toolbar./toolbar/features/norton/index.php Quote Link to comment Share on other sites More sharing options...
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