Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 i have one but the problem is he needs to have pressure on the back of his noggin he had a long and narrow head and to round it back out they said to leave him on his back as much as possible since he sleeps on his belly with his head to the left side well we did that they suggested his infant carseat soo for napping i was putting him in that and now he is freaking after 3 days and wont let me put him down at all no way h is head is ever gonna change now sigh help well my son has be forced to his carseat for his napping for trying to round out his head well today he will not let me put him down and he screams when he sees his carseat any ideas?For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 Do you have a swing? I noticed Ting's head is getting whacked from her swing - but whacked in the way your need your little one's head to go! What about bribing him into the car seat? Feed him (unless you b/f - might be hard) into it. Juice with water? Pedialyte? popsicle? to distract him while you put him in it and until he settles down? Deb help well my son has be forced to his carseat for his napping for trying to round out his head well today he will not let me put him down and he screams when he sees his carseat any ideas?For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 well he isnt on food yet and i tried with his bottle , yah we had a swing but he hated it so i gave it away , and he almost never was in his carseat much haha hence how his head got all loopy, i finally was able to lay him down on his pillow on the floor but he sleeps on his belly i wonder if now that he is bigger if he would use a swing he is 16lbs i wonder for how long he could use one maybe i should buy him one? help well my son has be forced to his carseat for his napping for trying to round out his head well today he will not let me put him down and he screams when he sees his carseat any ideas?For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 I'll tell you what I did to get my son OUT of his carseat... pacifier and lots of attention. When he cried, I picked him up, soothed him and put him back down on his side in the crib. I massaged him, he likes his legs rubbed. Or I rocked him in a chair and then put him in crib when he was asleep. When Luke was an infant, my DH developed this ridiculous way to get him to sleep... swinging the carseat by the arm. Boy it was heavy too but it made Luke stop crying immediately. We developed some muscles and Luke developed flat head. Jane and Luke, 5 months Repo'ing for now Boston, MA area --- In Plagiocephaly , " Steve Barlow " <sbarlow@m...> wrote: > well my son has be forced to his carseat for his napping for trying to round out his head well today he will not let me put him down and he screams when he sees his carseat any ideas? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 hum well he hates it sitting still maybe i should try to swing it around haha it might help flatten his head i truely feel silly saying i want to flatten my kids head when soo many are here because of that reason it seems at this point like it wont work and he just live like he is i just try to reduce it getting worse i suppose he hasnt grown much soo maybe he will hit a growth spurt and it will round out on its own when to babys tyipcally have growth spurts his head was 80% at birth and its now like under the 20th it was 15inches at birth its 16 1/4th now so a bit over an inch since he was born hillary in kcmo Re: help I'll tell you what I did to get my son OUT of his carseat... pacifier and lots of attention. When he cried, I picked him up, soothed him and put him back down on his side in the crib. I massaged him, he likes his legs rubbed. Or I rocked him in a chair and then put him in crib when he was asleep.When Luke was an infant, my DH developed this ridiculous way to get him to sleep... swinging the carseat by the arm. Boy it was heavy too but it made Luke stop crying immediately. We developed some muscles and Luke developed flat head.Jane and Luke, 5 monthsRepo'ing for nowBoston, MA area> well my son has be forced to his carseat for his napping for trying to round out his head well today he will not let me put him down and he screams when he sees his carseat any ideas?For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 Hi Hillary, I am very, very far behind in reading these posts so I apologize in advance if what I am posting has already been discussed. I am certainly no expert when it comes to plagio but I wanted to comment on a couple of things. First, I believe that your son is the one with the slightly scaphy headshape. The difficult thing for comparison is if you are looking at photos of plagio children on this site. Many plagio children retain a brachycephalic configuration to their heads even after treatment for plagio. What I mean by this is that our plagio children often have heads that are shorter and wider than normal, even after treatment for plagio. Their heads after treatment are symmetrical so they look pretty good even though their heads are somewhat shorter and wider than the norm, in fact they really do not look abnormal even with this headshape. One person said to me when we were discussing this scenario about what is normal that " normal is changing " in the sense that due to backsleeping heads are becoming shorter and wider a bit (I guess because so many kids are affected to some degree). I guess my point is that comparing a headshape to the shapes on this site (even after treatment) is probably not the best measuring stick. I'm not sure if you were doing that comparison but I wanted to mention this. I did a rough measurement of your son's cephalic index(width divided by length) from his photos and it appears his index is about 73. This is on the scaphy side of things but is also within one standard deviation from the mean of 78 for 6-12 month old boys so this would likely be considered normal being only 5 from the mean. You mentioned CT told you that his head was 5 off and that insurance likely wouldn't pay unless it was more than 15. I wonder if it was the cephalic index they were talking about and not the cranial vault asymmetry. Finally, I encourage you not to use any type of inclined seat to reposition your child. Scaphy bands hold growth front and back and allow the head to widen uniformly. By just forcing a scaphy child onto his/her back it would flatten the back of the head and give a somewhat triangular look to the head when viewed from above. I'm not sure you could really reposition a scaphy headshape. Furthermore, the inclined seats may cause the back of the head to not only flatten, but to grow vertically as well, giving increased posterior head height which is not aesthetically pleasing. My son has some of this posterior height due to a bouncy seat which we thought was too soft to do damage. We were wrong :-(. I was recently in the grocery store and saw a little girl who was probably 18 months (with very little hair) and her head was somewhat long and narrow but the back of her head was flattened and pushed up. It did look a bit odd (not her longer head shape, the back of her head). I immediately assumed that she had spent a fair amount of time in swing/bouncy seat/carseat etc. Please note that all this is simply my opinion. I commend your efforts to do the best for your child. Best of luck with your appointments. The experts will certainly help you if you see plagio-knowledgeable ones. Mark ('s dad) > well my son has be forced to his carseat for his napping for trying to round out his head well today he will not let me put him down and he screams when he sees his carseat any ideas? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 thank you , big words i really did try to understand i am very new to this and have no clue about alot of this but i sort of understood what your saying and i do agree, that told me to not let him lay with his head on the side i dont think it will change i have let him go back to being happy, the dr i saw yesterday said that even if we decided to band him not to expect alot of change in the over all shape he said it wil round out a bit but he didnt think the temples will that it would only be to correct his mild forehead assymserty , but others are saying that it wont help i dont understand, i am leaning towards not doing it but at this point unsure of what i am suppose to do i suppse to just let him be but i have to say thanks soo much for your info and help i am thinking i will delete my memembership and move on but thank you very much hillary Re: help Hi Hillary,I am very, very far behind in reading these posts so I apologize in advance if what I am posting has already been discussed. I am certainly no expert when it comes to plagio but I wanted to comment on a couple of things. First, I believe that your son is the one with the slightly scaphy headshape. The difficult thing for comparison is if you are looking at photos of plagio children on this site. Many plagio children retain a brachycephalic configuration to their heads even after treatment for plagio. What I mean by this is that our plagio children often have heads that are shorter and wider than normal, even after treatment for plagio. Their heads after treatment are symmetrical so they look pretty good even though their heads are somewhat shorter and wider than the norm, in fact they really do not look abnormal even with this headshape. One person said to me when we were discussing this scenario about what is normal that "normal is changing" in the sense that due to backsleeping heads are becoming shorter and wider a bit (I guess because so many kids are affected to some degree). I guess my point is that comparing a headshape to the shapes on this site (even after treatment) is probably not the best measuring stick. I'm not sure if you were doing that comparison but I wanted to mention this. I did a rough measurement of your son's cephalic index(width divided by length) from his photos and it appears his index is about 73. This is on the scaphy side of things but is also within one standard deviation from the mean of 78 for 6-12 month old boys so this would likely be considered normal being only 5 from the mean. You mentioned CT told you that his head was 5 off and that insurance likely wouldn't pay unless it was more than 15. I wonder if it was the cephalic index they were talking about and not the cranial vault asymmetry.Finally, I encourage you not to use any type of inclined seat to reposition your child. Scaphy bands hold growth front and back and allow the head to widen uniformly. By just forcing a scaphy child onto his/her back it would flatten the back of the head and give a somewhat triangular look to the head when viewed from above. I'm not sure you could really reposition a scaphy headshape. Furthermore, the inclined seats may cause the back of the head to not only flatten, but to grow vertically as well, giving increased posterior head height which is not aesthetically pleasing. My son has some of this posterior height due to a bouncy seat which we thought was too soft to do damage. We were wrong :-(. I was recently in the grocery store and saw a little girl who was probably 18 months (with very little hair) and her head was somewhat long and narrow but the back of her head was flattened and pushed up. It did look a bit odd (not her longer head shape, the back of her head). I immediately assumed that she had spent a fair amount of time in swing/bouncy seat/carseat etc.Please note that all this is simply my opinion. I commend your efforts to do the best for your child. Best of luck with your appointments. The experts will certainly help you if you see plagio-knowledgeable ones.Mark ('s dad)> well my son has be forced to his carseat for his napping for trying to round out his head well today he will not let me put him down and he screams when he sees his carseat any ideas?For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 Hillary good luck and best wishes in whatever you decide to do. Angie and Jenna(STAR grad Missouri) Re: help Hi Hillary,I am very, very far behind in reading these posts so I apologize in advance if what I am posting has already been discussed. I am certainly no expert when it comes to plagio but I wanted to comment on a couple of things. First, I believe that your son is the one with the slightly scaphy headshape. The difficult thing for comparison is if you are looking at photos of plagio children on this site. Many plagio children retain a brachycephalic configuration to their heads even after treatment for plagio. What I mean by this is that our plagio children often have heads that are shorter and wider than normal, even after treatment for plagio. Their heads after treatment are symmetrical so they look pretty good even though their heads are somewhat shorter and wider than the norm, in fact they really do not look abnormal even with this headshape. One person said to me when we were discussing this scenario about what is normal that "normal is changing" in the sense that due to backsleeping heads are becoming shorter and wider a bit (I guess because so many kids are affected to some degree). I guess my point is that comparing a headshape to the shapes on this site (even after treatment) is probably not the best measuring stick. I'm not sure if you were doing that comparison but I wanted to mention this. I did a rough measurement of your son's cephalic index(width divided by length) from his photos and it appears his index is about 73. This is on the scaphy side of things but is also within one standard deviation from the mean of 78 for 6-12 month old boys so this would likely be considered normal being only 5 from the mean. You mentioned CT told you that his head was 5 off and that insurance likely wouldn't pay unless it was more than 15. I wonder if it was the cephalic index they were talking about and not the cranial vault asymmetry.Finally, I encourage you not to use any type of inclined seat to reposition your child. Scaphy bands hold growth front and back and allow the head to widen uniformly. By just forcing a scaphy child onto his/her back it would flatten the back of the head and give a somewhat triangular look to the head when viewed from above. I'm not sure you could really reposition a scaphy headshape. Furthermore, the inclined seats may cause the back of the head to not only flatten, but to grow vertically as well, giving increased posterior head height which is not aesthetically pleasing. My son has some of this posterior height due to a bouncy seat which we thought was too soft to do damage. We were wrong :-(. I was recently in the grocery store and saw a little girl who was probably 18 months (with very little hair) and her head was somewhat long and narrow but the back of her head was flattened and pushed up. It did look a bit odd (not her longer head shape, the back of her head). I immediately assumed that she had spent a fair amount of time in swing/bouncy seat/carseat etc.Please note that all this is simply my opinion. I commend your efforts to do the best for your child. Best of luck with your appointments. The experts will certainly help you if you see plagio-knowledgeable ones.Mark ('s dad)> well my son has be forced to his carseat for his napping for trying to round out his head well today he will not let me put him down and he screams when he sees his carseat any ideas?For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 THANKS I THINK WE WONT DO ANYTHING AT THIS POINT UNTIL AT LEAST I AM LESS CONFUSED BY ALL THE CONTRDICATION I AM GETTING FROM THE PED, CT AND THE CRAINAL DR I AM TOTALLY LOST AT THIS POINT I DONT EVEN KNOW WHO TO CONSULT ANYMORE I JUST THINK I WILL SIT AND WAIT AND HOPE ITS FOR THE BEST I TYPCIALLY AM NOT VERY MEDICALLY ACTIVE I DONT TYPICALLY USE ALOT OF ANTIBOTICS OR WHAT NOT I JUST DONT BELEIVE IN ALOT OF THINGS ANYMORE AND TOO MANY DRS DONT SEEM TO REALLY KNOW WHICH IS THEIR HEAD AND WHICH IS THEIR BUTTS I HAVE BEEN MISLEAD MEDICALLY MYENTIRE LIFE WASNT EVEN PROPERLY DIGANOISED UNTIL ADULTHOOD AND I JUST SORT OF FED UP AT THIS POINT, THE CT LADYSAID SHE DIDNT THINK HE WOULD RECEIVE MUCH BENIFIT SHE DIDNT SAY ANY I AM NOT SURE WHAT I SAID BEFORE I AM TIRED AND NOT RELAYING INFO WELL I THINK I AM TRYING TO REMEMBER IT ALL AND I CAM GETTING IT CONFUSED WITH KIDS YELLING MOMMMM MOOMMMMMM at me while i am trying to typei thought that when they said to keep him on his back that the carseat was what i should use its the only way to keep him on the back of his head, i was kidding about carseat torture he hates sitting his carseat or on his back for prolonged periods he wants to be on his belly soo i dont know if it will onlymake his head flat i dont want that, and what little time he is on his back he lays on the left back part is what the crainal dr said it why that side of his forehead protrudes but i dont see a flat spot so i dont know if he has no flat spot god i cant even try to pick this apart any moer i am way to worn out by this and worrying i am no doing something right enough people are it seems always looking for me to screw up to say see see has too many kids can look that last one poor fellow soo neglected the stupid ped nurse actually told me he was overeatin because he wanted attentiion, not that he had reflux, she said all babys have reflux he just doign that becue he likes the attention he is getting, funny as soon he started zantac and we got differnt bottles he is back to normal 4 bottles a day not 10 a day and pukeing all day long anyho w i am sorry i am ranting and venting i am lost and frustrated and sad hillary in kcmo Re: help Hi Hillary,I am very, very far behind in reading these posts so I apologize in advance if what I am posting has already been discussed. I am certainly no expert when it comes to plagio but I wanted to comment on a couple of things. First, I believe that your son is the one with the slightly scaphy headshape. The difficult thing for comparison is if you are looking at photos of plagio children on this site. Many plagio children retain a brachycephalic configuration to their heads even after treatment for plagio. What I mean by this is that our plagio children often have heads that are shorter and wider than normal, even after treatment for plagio. Their heads after treatment are symmetrical so they look pretty good even though their heads are somewhat shorter and wider than the norm, in fact they really do not look abnormal even with this headshape. One person said to me when we were discussing this scenario about what is normal that "normal is changing" in the sense that due to backsleeping heads are becoming shorter and wider a bit (I guess because so many kids are affected to some degree). I guess my point is that comparing a headshape to the shapes on this site (even after treatment) is probably not the best measuring stick. I'm not sure if you were doing that comparison but I wanted to mention this. I did a rough measurement of your son's cephalic index(width divided by length) from his photos and it appears his index is about 73. This is on the scaphy side of things but is also within one standard deviation from the mean of 78 for 6-12 month old boys so this would likely be considered normal being only 5 from the mean. You mentioned CT told you that his head was 5 off and that insurance likely wouldn't pay unless it was more than 15. I wonder if it was the cephalic index they were talking about and not the cranial vault asymmetry.Finally, I encourage you not to use any type of inclined seat to reposition your child. Scaphy bands hold growth front and back and allow the head to widen uniformly. By just forcing a scaphy child onto his/her back it would flatten the back of the head and give a somewhat triangular look to the head when viewed from above. I'm not sure you could really reposition a scaphy headshape. Furthermore, the inclined seats may cause the back of the head to not only flatten, but to grow vertically as well, giving increased posterior head height which is not aesthetically pleasing. My son has some of this posterior height due to a bouncy seat which we thought was too soft to do damage. We were wrong :-(. I was recently in the grocery store and saw a little girl who was probably 18 months (with very little hair) and her head was somewhat long and narrow but the back of her head was flattened and pushed up. It did look a bit odd (not her longer head shape, the back of her head). I immediately assumed that she had spent a fair amount of time in swing/bouncy seat/carseat etc.Please note that all this is simply my opinion. I commend your efforts to do the best for your child. Best of luck with your appointments. The experts will certainly help you if you see plagio-knowledgeable ones.Mark ('s dad)> well my son has be forced to his carseat for his napping for trying to round out his head well today he will not let me put him down and he screams when he sees his carseat any ideas?For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 ok i sort of under stand waht you mean , so why would a dr recommend by ct tell me he thinks it would i guess i am confused he looked at the same baby as she did , she didnt say it would nt work she said she didnt think he would get a beinfical correction if i beleive was her exact words and he aws soo mild isnruance wouldnt even pay i think ia gree with her as far as his over all head shape but as far as the fore head assymetry i am confuse he agreed with her on that for over all head growth he woldnt receive a huge correction as he said he asid it like this if you have a 15mm baby and you give him a 10 mm correction that is signifcate, if you had a 5 mm and you gave him a 3mm correction it not alot but its still some correction, can that 3mm change his head enough to make his eye look less? that is the question there is a theroy by some that think the two are connected plagio and eye folds, yes downs, aisa, fas baby have them as well but his isnt normal meaning his eye are mismatched, and it could in the furture as his face shifts down be moved enough to effect the vision in that eye. and require surgery to fix not a big one but he would still have to go under and that is always scary does it appear that the eye folds are like that are because of that epi thingy or is it because that side of his forhead and socket are pushed forward and causeing it to appear differnt? i think those are the questions right niow i am trying to get answered if yes it cuaseing it to appear abnormal then maybe i will band, if not its not related at all then no i wont i dont know maybe even if they tell me yes i wont, i dont know i am just trying to figure it all out that is that i am trying to look at the dr told me to go see the ct people again not th ept but the orthist i think that actually make the helmets and or wha tnot he gave me their nams and talk to them as well before i decide about what to do i wil do that i right now am doing nothing soo i think at this point i am taking up your alls time and i am sorry thanks for the help you have been very helpful in helping me try to find info thank you again hillary Re: help Hillary,The reason the person at CT said what she said is because in order for a DOCband to work it has to have holding points. In other words if a baby's head isn't "flat" enough a band won't be able to work. DOCbands are active bands they actually redirect the growth of the head through gentle pressure. It won't be able to do that it doesn't have holding points. > > well my son has be forced to his carseat for his napping for trying to round out his > head well today he will not let me put him down and he screams when he sees his > carseat any ideas?> > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 no i think he meant the ones that fit them here in kc at rehab design , i talked to someone in az today and told him what the dr said he didnt mention he thought it was wrong he infact offered to email me an article on the relation of plagio and the eye folds i havent recieved it yet but i hope maybe he will tomorrow i wil be happy to pass it on when i get it hillary Re: help Hillary,The people that make the bands are in AZ.> > > well my son has be forced to his carseat for his napping > for trying to round out his > > head well today he will not let me put him down and he > screams when he sees his > > carseat any ideas?> > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 i saw the pt lady there not the two people he mentioned julie and i think the guy was terry but i could be wrong i would have to call and ask, it wasnt who i saw i think she was one that works with the babys as well but she wasnt who he said soo when he said the oens that actually deal with the bands and the babys, but i talked to tim as well today on the phone he is the one that offered that article on the eye theroy i was thinking about who every mentioned that one , sorry i dont remember i have read thru soo many emails today i think the reason he said that bout corbyn is his isnt correct it isnt how his eye is suppose to be shaped and right now at this point it would require surgery but if as the bride of his nose moves down it can pull that down further and it could keep him from opening that one eye wide enough to see correctly and harm his vison i suppose like having a lazy eye if he cant focus it correctly to read or what it could be a problem i am only thinking outloud i couldnt find info in regaruding this other than its assocated with downs and fas and other birthdefects but that is i think what he was meaning when he said he might require surgery later for it so that it doesnt hinder his vison right now it doesnt, and as he grows its hard to say if it will move down more to be a problem sorry i cant answer better i am suppose to go back in 2mos if we dont band him for a check up iw ill be sure to ask all that then it was just alot of info in a short time i didnt ask enough questions at the time hillary Re: help Isn't that who you saw when you took Corbyn for his evaluation?I'd love to see it, please do pass it on.> > > > well my son has be forced to his carseat for his > napping > > for trying to round out his > > > head well today he will not let me put him down and he > > screams when he sees his > > > carseat any ideas?> > > > > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Hi Lynne, We live near Manchester and our son is being treated by Dr. Blecher at a hospital in London. If you would like some information, either email me; ianadele@... Or telephone; 01706 226075. Regards Ian. help > my daughter has this problem ,also tilted jaw with lopsided palete > and teeth,she also has a squint.she has been seen for this since she > was 9 weeks old as she had torticollis.as yet she has had no medical > treatment to rectify any of these problems,no i dont like the ideas > of any of the mentioned treatments,nor do i like the thought of my 2 > year old suffering later if nothing is corrected.please let me know > what help is available and if there are any complications that will > arise from not having anything done. many thanks > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi - I understand the pain you're going through. My daughter was also diagnosed at age three, after normal development for 2 1/2 years then massive regression. We still don't know what caused it, and I've been fighting this battle for 6 years now. Have tried every remedy and treatment out there, to no avail, but I'm not giving up. My DAN Dr. recently told me that for this to happen to girls, something really massive has to attack their systems, since they normally have much stronger constitutions than boys. We're still running tests, etc. etc. Sorry, I wish I could give chelation advice, but I know others will. I just wanted to sympathize - there no pain like this. I hope you find your answer! > > > My name is Chris > I am a newbie to this subject. Still weeping and typing badly as fast > as I can.I was convinced about 72 hrs ago and need a good crash > course in chelation. My daughter 3 yrs 4 months was diagnosed with > mild to moderate autism,She had better speaking skills at 1 1/2 yrs > than now .I am so angered stressed and pressed for time .My wife is > still skeptical that thimerosal caused this . I have a gut feeling it > did.My heart aches for me and mine and you and all of your loved ones > Help me please > What do I do first > Is my 5yr old daughter who seems normal at risk of regressing > I want my baby back > > I'll be here all night > > Bless you > Chris > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Chris..I too have a daughter who is now 10,with regression before age 2...You have many positives on your side: -It is 2004..there is so much more info -you found this list and are looking into biomedical help SO early..that is great (we did behavioral/sensory and didn't know about thimerosal until 2000. -get your wife to read online with you...you need to be a team..it is so hard I know to hear the word autism...but change it to " toxic " ...and RESEARCH -find a doctor to do tests--one who is knowledgable about children who regress -for your own education--get the book : Children With Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder, Second Edition - Jaquelyn McCandless--it will explain many things/test/biomedical interventions, --Amazon has it...2nd edition -stay on this list to learn more..have your questions answered -try your daughter on a gluten/casein free diet...but read about it as you get a dr appt -read the files on how to get a hair test done (mercury and other toxics--but ask questions here on how, what kind, where etc- ask questions--your daughter is ill...forget the word autism..it is meaningless -take care of each other and know that there are many who will help.......All my best.. crueton7 <crueton7@...> wrote: My name is Chris I am a newbie to this subject. Still weeping and typing badly as fast as I can.I was convinced about 72 hrs ago and need a good crash course in chelation. My daughter 3 yrs 4 months was diagnosed with mild to moderate autism,She had better speaking skills at 1 1/2 yrs than now .I am so angered stressed and pressed for time .My wife is still skeptical that thimerosal caused this . I have a gut feeling it did.My heart aches for me and mine and you and all of your loved ones Help me please What do I do first Is my 5yr old daughter who seems normal at risk of regressing I want my baby back I'll be here all night Bless you Chris ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hello Chris. My heart aches just thinking about how you are feeling right now. I can still remember when I first made the connection, too, that this is not some incurable problem that my child was " born with " per se, or just " runs in the family " . I can remember that I didn't know whether to shout for joy that I had learned something important or to cry for what had happened to my child. In terms of your wife and her skepticism. Well, for me and my dh, he's not as involved in any of this as I am and that's OK. He trusts my decisions and so at least try to get your wife to at least trust that you are making good decisions for your child. It's difficult for some people to imagine that there could be something in a vaccine that could harm the kids. Encourage her to just take some time to read on the issue. Somewhere there is a downloadable video of what thimerosal does to the myelin sheath with cultured neurons-- it erodes it right before your eyes. I'm sure someone still has links to Geier's presentation at the IOM last week... that'll open your eyes. And there'll be more information forthcoming for her to read, I'm sure. Mercury is toxic, period. Tell her to think about how it was removed from contact lens products in the 80's. Why was it removed? Because so many people had bad problems with it. It set up a response in the body and made people's eyes act like they were trying to reject the contact lens. I was one of them! I can still remember when they removed it from all solutions. And get this, they removed it from dog vaccines in the early 90's. Yes, dogs were more important to protect than our kids, I guess. Our eyes, and our dogs. We could wait an eternity for the IOM to declare that yes, there is a link. Or we could remember that we already have enough evidence before us as parents and just move on and get to the task at hand and help our kids. Let the IOM and the CDC and the FDA continue to try to protect our vaccine manufacturers from being held liable in the biggest iatrogenic problem ever put upon our children. It's *very* important that your wife understand that there are a lot of motivators out there, especially green and made of paper, to keep telling the public that thimerosal is safe. Meanwhile, let's check out all the studies that document that it was and is a real problem for people... For your 5 year old daughter who seems normal-- is she fine? Most likely... although some kids have milder " sensory " issues, some go on to develop attention span/learning problems. It's just something to watch for, but not to stress out about at this point if you are not seeing anything right now. It sounds like your main priority is your little one right now. As you learn things from the boards, you may begin to notice things with your older daughter and you can learn things that can help her too. If you have time, go to the Files section on the board and begin reading the files. Spend some time reading the Love Letters section to give yourself some hope. You always have to have hope. Many kids have been helped by chelation and other treatments for autism. What works great for some may have only barely noticeable changes for others. Each child is unique. It's important to read up as much as you can to help you make decisions about what to do. W > My name is Chris > I am a newbie to this subject. Still weeping and typing badly as fast > as I can.I was convinced about 72 hrs ago and need a good crash > course in chelation. My daughter 3 yrs 4 months was diagnosed with > mild to moderate autism,She had better speaking skills at 1 1/2 yrs > than now .I am so angered stressed and pressed for time .My wife is > still skeptical that thimerosal caused this . I have a gut feeling it > did.My heart aches for me and mine and you and all of your loved ones > Help me please > What do I do first > Is my 5yr old daughter who seems normal at risk of regressing > I want my baby back > > I'll be here all night > > Bless you > Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 , (and you) can find the Calgary video, Geiers presentation, Dr. Haley, Dr. Bradstreet, Dr. Baskin, Dr. Aposhian, Dr. Deth, Lyn Redwood, etc on http://www.NoMercury.org Also copies of Simpsonwood minutes (all 286 pages), internal CDC e-mails, WXYZ investigations by Steve , and lots more evidence and information. Lujene [ ] Re: Help Hello Chris. My heart aches just thinking about how you are feeling right now. I can still remember when I first made the connection, too, that this is not some incurable problem that my child was " born with " per se, or just " runs in the family " . I can remember that I didn't know whether to shout for joy that I had learned something important or to cry for what had happened to my child. In terms of your wife and her skepticism. Well, for me and my dh, he's not as involved in any of this as I am and that's OK. He trusts my decisions and so at least try to get your wife to at least trust that you are making good decisions for your child. It's difficult for some people to imagine that there could be something in a vaccine that could harm the kids. Encourage her to just take some time to read on the issue. Somewhere there is a downloadable video of what thimerosal does to the myelin sheath with cultured neurons-- it erodes it right before your eyes. I'm sure someone still has links to Geier's presentation at the IOM last week... that'll open your eyes. And there'll be more information forthcoming for her to read, I'm sure. Mercury is toxic, period. Tell her to think about how it was removed from contact lens products in the 80's. Why was it removed? Because so many people had bad problems with it. It set up a response in the body and made people's eyes act like they were trying to reject the contact lens. I was one of them! I can still remember when they removed it from all solutions. And get this, they removed it from dog vaccines in the early 90's. Yes, dogs were more important to protect than our kids, I guess. Our eyes, and our dogs. We could wait an eternity for the IOM to declare that yes, there is a link. Or we could remember that we already have enough evidence before us as parents and just move on and get to the task at hand and help our kids. Let the IOM and the CDC and the FDA continue to try to protect our vaccine manufacturers from being held liable in the biggest iatrogenic problem ever put upon our children. It's *very* important that your wife understand that there are a lot of motivators out there, especially green and made of paper, to keep telling the public that thimerosal is safe. Meanwhile, let's check out all the studies that document that it was and is a real problem for people... For your 5 year old daughter who seems normal-- is she fine? Most likely... although some kids have milder " sensory " issues, some go on to develop attention span/learning problems. It's just something to watch for, but not to stress out about at this point if you are not seeing anything right now. It sounds like your main priority is your little one right now. As you learn things from the boards, you may begin to notice things with your older daughter and you can learn things that can help her too. If you have time, go to the Files section on the board and begin reading the files. Spend some time reading the Love Letters section to give yourself some hope. You always have to have hope. Many kids have been helped by chelation and other treatments for autism. What works great for some may have only barely noticeable changes for others. Each child is unique. It's important to read up as much as you can to help you make decisions about what to do. W > My name is Chris > I am a newbie to this subject. Still weeping and typing badly as fast > as I can.I was convinced about 72 hrs ago and need a good crash > course in chelation. My daughter 3 yrs 4 months was diagnosed with > mild to moderate autism,She had better speaking skills at 1 1/2 yrs > than now .I am so angered stressed and pressed for time .My wife is > still skeptical that thimerosal caused this . I have a gut feeling it > did.My heart aches for me and mine and you and all of your loved ones > Help me please > What do I do first > Is my 5yr old daughter who seems normal at risk of regressing > I want my baby back > > I'll be here all night > > Bless you > Chris ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Hi Welcome to the list. As others have suggested, I'd recommend reading the files of this list, learning about hair analysis and Andy Cutler's counting rules. Consider getting a copy of " What Your Doctor May NOT Tell You About Childhood Vaccines " by Cave, MD (and grandmother of a girl with autism). Put off any vaccines for either child until you learn more about the subject. > I'd get rid of any mercury thermometers you may have in the house. We invariably hear from people on the list who know about the dangers of mercury but still have a thermometer around the house and end up breaking it. You should take them to your local hazardous waste drop site (some will give a digital or coupon for discount on one in exchange). > Find a mercury-free dentist and see that your children never get mercury amalgam dental fillings. Consider using filtered or reverse osmosis water and buying organically grown produce whenever possible (toxic metals make their way into fertilizers). > Educate yourselves on the issue and don't rely on trusting doctors without questioning them. Realize that the medical community and pharmaceutical companies have done quite a job of covering up the issue, so you've passed the first hurdle in discovering the connection and this support group. > S From: crueton7 [mailto: crueton7@...] Date: Wed, 18 Feb 2004 04:54:04 -0000 Subject: [ ] Help <html><body> <tt> My name is <BR> I am a newbie to this subject. Still weeping and typing badly as fast <BR> as I can.I was convinced about 72 hrs ago and need a good crash <BR> course in chelation. My daughter 3 yrs 4 months was diagnosed with <BR> mild to moderate autism,She had better speaking skills at 1 1/2 yrs <BR> than now .I am so angered stressed and pressed for time .My wife is <BR> still skeptical that thimerosal caused this . I have a gut feeling it <BR> did.My heart aches for me and mine and you and all of your loved ones<BR> Help me please<BR> What do I do first<BR> Is my 5yr old daughter who seems normal at risk of regressing<BR> I want my baby back<BR> <BR> I'll be here all night <BR> <BR> Bless you<BR> Chris<BR> <BR> </tt> <br><br> <tt> =======================================================<BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 > My name is Chris > I am a newbie to this subject. Still weeping and typing badly as fast > as I can.I was convinced about 72 hrs ago and need a good crash > course in chelation. My daughter 3 yrs 4 months was diagnosed with > mild to moderate autism,She had better speaking skills at 1 1/2 yrs > than now .I am so angered stressed and pressed for time .My wife is > still skeptical that thimerosal caused this . I have a gut feeling it > did.My heart aches for me and mine and you and all of your loved ones > Help me please > What do I do first > Is my 5yr old daughter who seems normal at risk of regressing If you let any doctors try to poison her, yes. No more vaccinations no matter what anyone says. > I want my baby back > > I'll be here all night Check the files section. It has much informative material. > Bless you > Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Take a deep breath. Now tell yourself that your child has a good chance of recovery since you've learned this so soon. (My son was 20.) Yes, you will grieve, but then you'll pick yourself up and educate yourself (there's tons of information in the files) and start helping your daughter get better. We've all been there. We will help you, and we will rejoice over every little step you share on this list that your child takes on her way back to normalcy. We are in this together. Keep sharing information with your wife. All of us go through the denial phase, but the sheer amount of information fitting together finally makes us take action. Your daughter is joining a fellowship of kids fighting their way back. Hey, my son (who got cerebral palsy as part of his mercury poisoning " gift " ) is now stabbing food with a fork! Little steps, but huge to those of us who never thought we'd see them. (Oh, by the way, he is also a college student who communicates using a computer.) The grieving never goes away, but the joy at watching our kids come back softens it a little. We shall overcome. Barb [ ] Help > My name is Chris > I am a newbie to this subject. Still weeping and typing badly as fast > as I can.I was convinced about 72 hrs ago and need a good crash > course in chelation. My daughter 3 yrs 4 months was diagnosed with > mild to moderate autism,She had better speaking skills at 1 1/2 yrs > than now .I am so angered stressed and pressed for time .My wife is > still skeptical that thimerosal caused this . I have a gut feeling it > did.My heart aches for me and mine and you and all of your loved ones > Help me please > What do I do first > Is my 5yr old daughter who seems normal at risk of regressing > I want my baby back > > I'll be here all night > > Bless you > Chris > > > > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 > I was convinced about 72 hrs ago and need a good crash > course in chelation. You can start with my intro page, if you want. It has links to other sites also http://www.danasview.net/chelate.htm > What do I do first > Is my 5yr old daughter who seems normal at risk of regressing Yes, especially if you allow further vaccination. You can also consider removing sources of current metal exposures from her environment, especially antimony, lead, and mercury http://www.danasview.net/metals.htm Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 > hi everyone....i want to start out saying that i am doing better and > better. i have dermatomyositis. my AP doc tested me for anti-MAG > antibodies in December and he just called me with the results > yesterday. this antibody measures antibody production against the > myelin sheeth. Do you have the specific name of the test? That might be helpful. Is your AP doc a GP, Internal Medicine, rheumatologist, alternative med doc? Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Hi , I did a little digging, and searched for anti-MAG and came up with several sites. I found the reference range, listed below. It looks like your 3100 doesn't quite meet the mild/moderately elevated level of 3200. Highly elevated would be anything equal to or over 6400. Negative would be less than or equal to 1600. Reference Range: ELISA Result Mag Autoantibody SGPG Autoantibody Category Titer Titer Negative < or = 1600 or = 800 Mild/moderately elevated 3200 1600-3200 Highly elevated > or = 6400 > or = 6400 There's also an article you can look at: http://www.neurocast.com/site/pdf/antimag_neuropathy.pdf On a personal note, I've been on Minocin on MWF and either Zithromax or Biaxin for the past 6 years. I, too have been dxed with Dermatomyositis. All symptoms are improved by 95%, with the exception of my cough...which I would give a 75% improvement. That may be due to another rheumatic disease called relapsing polychondritis and the cartilage in my throat may been damaged. One interesting thing...I had abdominal surgery this summer where a piece of mesh had to be attached to my spine, and since then I have noticed my right foot feels numb from time to time. At my neurologist appointment, an EMG was performed. Guess what!? The doc said my nerves were excellent! and she even thought that the Minocin all these years might have been the reason. From what I understand, among other things, Minocin has a nerve protecting or maybe even healing aspect. I'll take it! I also told her that I knew of people who were using Minocin for MS and for ALS, Lou Gehrigs Disease. She said that she had read some promising studies on that, too. So....the message is - maybe the Minocin is the way to go, regardless. Take care, Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Ann, there is a book called The Out Of Sync Child-- do you have that book? If not, you will probably find it helpful. Most medical docs do not diagnose SID. It is really a " therapy " diagnosis, meaning, Occupational Therapists are the people to see. You want to find one that is qualified to do the SIPT test. That is a test to measure sensory dysfunction. You need to check with your insurance to find out the process to go through to get an OT evaluation because otherwise, you may be stuck with the bill. Evaluations are not cheap. Nor is the therapy. So again, check with your insurance to make sure you understand how to go about getting the eval and any possible therapy covered. There are also some large SID boards on where you can find more help. Also, stick around on this list and consider doing the chelation treatments and other treatments that are typically " autism " treatments because they DO help SID kids, too! My son is now 7 and a half and formerly SID. You've obviously got other kids with the diagnoses, and you might want to consider also doing some biomedical treatments to help them, not just your SID kiddo. I worry less about the " labels " and more about what kinds of behaviors/characteristics are you seeing and then go from there. W > I have got so many > questions. I have not > heard of SID until just a few days ago > but the more I hear about it, the more > I wonder if my son has a mild form of > it. Is there someone that I can talk to > about this? His doctor is leaning toward > him being Bi-polar and ADHD just because > his siblings are but I really don't think > he is. There are just so many things > different about my son compared to > him but no one will listen to me. > Help. I need someone to talk to > about this. > > > AnnC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2004 Report Share Posted September 14, 2004 Try 25mg every 4 hours round the clock, poor little man can;t go on like this its cruel. Read the files section of this group also Mandi in UK We are chelating. It is not going well. The first challenge (approx 5 weeks ago) brought crying, not eating. The first 3 days on (3 times a day 250mg of DMSA brought severe constipation, screaming- writhing-crying for hours at a time, no eating. Last weekend, we did round two, some crying, some eating, some pooping. Dr Cave says stay the course. Quote Link to comment Share on other sites More sharing options...
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