Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 Use current hair samples, get the test through DDI (toxic AND essential elements) and apply the counting rules for starters. S On Mon, 07 January 2002, " deedee832 " wrote: > > <html><body> > > > <tt> > Hello, <BR> > <BR> > My name is Deanna and I live in New Castle, DE. & nbsp; I have two wonderful <BR> > children, who's 5 1/2 and who just turned 3. & nbsp; Both of <BR> > my children are developmentally delayed. & nbsp; I've never received an <BR> > official diagnosis for either one, however. & nbsp; My son was evaluated by <BR> > the Autistic School and was found to not be autistic but he does have <BR> > autistic tendancies. & nbsp; used no meaningful language until the age <BR> > of 3 years and 3 months. & nbsp; He is doing very well in his program. & nbsp; He <BR> > currently attends an inclusion Kindergarten program and does well but <BR> > still has problems with social interactions as well as expressive and <BR> > receptive language and temper control. & nbsp; He's very smart and far too <BR> > clever for his own good sometimes. & nbsp; It's as if he knows exactly what <BR> > he wants to say but just can't verbalize it. & nbsp; started her <BR> > therapies a full year earlier than which we thought would put <BR> > her ahead of where was at her age, but it didn't. & nbsp; While she has <BR> > the same language delays as , she has a lot more sensory issues. & nbsp; <BR> > She's on a brushing program now, which she loves and, in fact, we <BR> > just started her in a tight huggy vest today hoping that would give <BR> > her the input she seems to need and crave. & nbsp; She is still not using <BR> > meaningful language and is having a difficult time catching onto the <BR> > picture exchange ( picked this up right away at her age) that <BR> > they are using at school. & nbsp; She currently attends a 5 day a week <BR> > apecial ed pre-school program.<BR> > <BR> > Anyway, now that I've given a background on the kids, I need help on <BR> > what to do first to get them tested for Mercury. & nbsp; I was sick over the <BR> > weekend and while laying on the couch watching TV for a few hours I <BR> > must have seen the same commercial about 6 times. & nbsp; It was for a <BR> > lawyer who was getting a class action suit together for children who <BR> > have Autism or Autistic type symptoms due to Mercury poisoning from <BR> > childhood immunizations. & nbsp; I'm not really interested in a lawsuit but <BR> > that would explain why I have 2 children with nearly the exact same <BR> > problem which I always thought was very odd. & nbsp; I immediately began my <BR> > research online. & nbsp; It seems that testing for excessive levels of <BR> > mercury will be difficult since it's been so long since they've had <BR> > the immunizations. & nbsp; I've been trying to hunt down their hair scraps <BR> > from their 1st haircuts but haven't been able to find them yet. & nbsp; I'm <BR> > hoping they didn't get lost in our move. & nbsp; So, where do I start? & nbsp; I <BR> > have a wonderful pediatrician which I haven't spoken to about this <BR> > yet. & nbsp; But I'm sure she'll be supportive. & nbsp; Do I just ask her to send <BR> > us for blood/hair testing? & nbsp; Are there special tests we should ask <BR> > for? & nbsp; Any help would be appreciated.<BR> > <BR> > Thanks, <BR> > Deanna <BR> > Mom to 5 1/2 and 3 going on 30!<BR> > <BR> > </tt> > > <br> > > <!-- |**|begin egp html banner|**| --> > > <table border=0 cellspacing=0 cellpadding=2> > <tr bgcolor=#FFFFCC> > <td align=center><font size= " -1 " color=#003399><b> Sponsor</b></font></td> > </tr> > <tr bgcolor=#FFFFFF> > <td align=center width=470><a href= " http://rd./M=210672.1513963.3091383.1442549/D=egroupweb/S=1705061\ 616:HM/A=656841/R=0/*http://www.prostateinfo.com/piyg " ><img src= " http://us.a1.yimg.com/us.yimg.com/a/as/astrazeneca/g3.gif " width= " 468 " height= " 60 " border= " 0 " ></a></td> > </tr> > <tr><td><img alt= " " width=1 height=1 src= " http://us.adserver./l?M=210672.1513963.3091383.1442549/D=egroupmai\ l/S=1705061616:HM/A=656841/rand=701783316 " ></td></tr> > </table> > > <!-- |**|end egp html banner|**| --> > > > <br> > <tt> > =======================================================<BR> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 Hi Deanna, welcome, >Anyway, now that I've given a background on the kids, I need help on >what to do first to get them tested for Mercury. You could start by doing a DDI hair test. Please read the following files about how to do this, and how to make sense of the results: /files/Counting%2BRules /files/HOW_TO_hair_test > I was sick over the >weekend and while laying on the couch watching TV for a few hours I >must have seen the same commercial about 6 times. It was for a >lawyer who was getting a class action suit together for children who >have Autism or Autistic type symptoms due to Mercury poisoning from >childhood immunizations. I'm not really interested in a lawsuit but >that would explain why I have 2 children with nearly the exact same >problem which I always thought was very odd. I immediately began my >research online. It seems that testing for excessive levels of >mercury will be difficult since it's been so long since they've had >the immunizations. I've been trying to hunt down their hair scraps >from their 1st haircuts but haven't been able to find them yet. I'm >hoping they didn't get lost in our move. So, where do I start? see comments above about hair testing. current hair should work okay > I >have a wonderful pediatrician which I haven't spoken to about this >yet. But I'm sure she'll be supportive. Do I just ask her to send >us for blood/hair testing? Are there special tests we should ask >for? Any help would be appreciated. You could read whatever looks interesting to you in these files: /files/Mercury-Autism%20FAQ /files/Glossary /files/ANDY_INDEX Different stuff should likely look interesting over time, so revisit these again another week or month to see what is interesting then too. Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 >I need help on > what to do first to get them tested for Mercury. Use current hair samples to get a " hair element profile " run by Doctor's Data laboratories. Be careful to use that lab and to get a hair element profile and not a " toxic element screen. " Andy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Thanks to all who responded with your great information! So, in other words, I can't just ask my pediatrician for a Hair Elements screen and go to my local lab where we usually go for our regular blood draws, etc? It has to be a Doctor's Data lab so they can perform the correct test so that we can apply the counting rules, right? Am I correct in saying that Doctor's Data labs are a mail order type lab where they send you a kit and you send the samples back to them and they mail you the results? Sorry to ask so many questions but as you all know it's a long frustrating road especially with 2 developmentally delayed children and I want to do it right the first time so I don't waste time or money in getting my kids diagnosed and, if need be, treated. Thanks so much again! Keep the great information coming. Deanna Mom to 5 1/2 and 3 going on 30! > Use current hair samples, get the test through DDI (toxic AND essential elements) and apply the counting rules for starters. > S > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Hi Deanna >So, in other words, I can't just ask my pediatrician for a Hair >Elements screen and go to my local lab where we usually go for our >regular blood draws, etc? It has to be a Doctor's Data lab so they >can perform the correct test so that we can apply the counting rules, >right? yes, use Doctor's Data. > Am I correct in saying that Doctor's Data labs are a mail >order type lab where they send you a kit and you send the samples >back to them and they mail you the results? yeah, they will send a " kit " which has stuff like a little ziplock bag for the hair sample, and directions, and a funny little " scale " that you use to weigh the hair (so that you send " enough " ) and so on. You mail the hair to them. It works fine. >Sorry to ask so many questions but as you all know it's a long >frustrating road especially with 2 developmentally delayed children >and I want to do it right the first time so I don't waste time or >money in getting my kids diagnosed and, if need be, treated. very good. best wishes, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 This is going to sound really stupid but how do you get in touch with the Doctors Data lab? My child does not have autism but she has Sensory I ntegration Dysfunction? Does chelation and fatty acids, enzymes help SID? I can offer something to those parents who have a child(ren) that willnot eat. My daughter was prescribed Peri Actin.It is actually used as an anti-histamine but the side effects are increased appetite and sleepiness.It did not help her with sleeping,although it does most kids,it helped some with eating.If you get this RX for your child the directions for dosing will be for an anti-histamine. My doctor told me to put her on it a few days then off a few days then back on. What we do is twice a day for 4 days (m-th_ than off Friday, Saturday,Sunday.But all children are different so you may need to find what works best for you. This medicine is used in childrens hospitals for children who have cancer,etc. to help them gain weight.ne, mom to Gillian 18mnths Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Thank you for the e-mail on how to get in touch with Doctors data lab. I hope this helps mr daughter. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Valentina, Thank you for your reply. My daughter was diagnosed with SID when she was 11 months old. She is now 18months. She is completely normal in every way except eating and speaking. She has a tremendous fear of food. She says " dada " and that is it. I amnew to this chat room and I guess new to this whole concept of SID. How do enzymes,etc help with speech? She babbles all day, extremely lovey, gives kisses,and she understands everything you tell her she just can not communicate back with words. Also, how are these children when they are school age? Do most of them have learning disorders?Pleasa help me. I am at the end of my rope. every Dr and therapist she has does not no what to do for her anymore.She is not responding very well to therapy when it comes to eating. She is better than she was but very miniscule. Thanks, ne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 > This is going to sound really stupid but how do you get in touch with the > Doctors Data lab? /files/HOW_TO_hair_test please read text at above location Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Hi ne, My son is ASD, and we started chelation two months ago.. He had a lot of sensory problems... All his senses were messed up. I wouldn't say the same thing now. So... I guess chelation helps a lot SID. I don't know about fatty acids or enzymes, sorry... Valentina > Does chelation and fatty acids, enzymes help SID? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 I emailed them today at inquiries@.... They also have a website www.doctorsdata.com. They told me that only my doctor can order a test kit and that it's $76.00. As for chelation helping with SID, I gess it would depend on how the test came back. If he/she is positive, I would think it would help. One of the other more experienced persons on this list would be able to tell you a little better though. Neither of my children have Autism but both have global developmental delays with the exception of gross motor. They both also have some sensory issues (more so my daughter than my son). Luckily neither have significant food texture issues. I'm hoping that if their tests come back positive that chelation will help them to improve. I'm most concerned with their language (expressive and receptive) improving. I'm not getting my hopes up but I'm hoping this is the answer I've been looking for for 3 1/2 years. Deanna Mom to 5 1/2 and 3 going on 30! > This is going to sound really stupid but how do you get in touch with the > Doctors Data lab? My child does not have autism but she has Sensory I > ntegration Dysfunction? Does chelation and fatty acids, enzymes help SID? I > can offer something to those parents who have a child(ren) that willnot eat. > My daughter was prescribed Peri Actin.It is actually used as an > anti-histamine but the side effects are increased appetite and sleepiness.It > did not help her with sleeping,although it does most kids,it helped some with > eating.If you get this RX for your child the directions for dosing will be > for an anti-histamine. My doctor told me to put her on it a few days then off > a few days then back on. What we do is twice a day for 4 days (m- th_ than off > Friday, Saturday,Sunday.But all children are different so you may need to > find what works best for you. This medicine is used in childrens hospitals > for children who have cancer,etc. to help them gain weight.ne, mom to > Gillian 18mnths > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Valentina, What I mean about a tremendous fear of food is she starts cring and slapping you when you even show her food. She will eat a couple of things and that is it. As soon as you put her in her high chair she starts crying because she associates the high chair with food. We gave up on the high chair a long time ago. What is ASD and what exactly are global delays? Like I said I am new at this and have never heard of any of this until my daughter was diagnosed with SID. I live in Kentucky and not very many doctors here even think SID is a true condition. I had a pediatric gastro doctor tell me I had one spoiled child and if I stop breast feeding and starve her then she will eat when she gets hungry enough. I walked straight out of that office. I would not even no where to begin with enzyme therapy, chelation, etc. Also, here is some info that might help some of you: I started olive oil massages on my daughter twice daily. This helps with allowing her body to absorb and digest every bit of nutrition her body gets and helps with tactile stimulation. She screamed when we first started this and now she loves it. It also helps calm her. We have tried mouth massagers, electric toothbrushes, rubbing our fingers across her teeh and gums and this has not helped. I hope when she does get to school she will be o.k. I have this terrible fear that she will be the child in the class that teachers call about daily because of her issues and that she is made fun of because of her issues. I no that sounds bizarre but she is absolutely beautiful and I want her to do well with everything. Thanks, ne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Deanna, We have tried brushing protocol for 6 months and it does not help her. We are going through an organization called First Steps in Kentucky. It is free and all the therapists come to my house. She has OT,ST,DI, NUTRITIONIST.She is anemic from not eating. She takes RX iron. Everyone tells me that she is a puzzle. No one seems to no how to help her. I was told that she may need to go to Rainbow Babies in Cleveland, Ohio where they specialize in feeding disorders. ne,mom to Gillian(pronounced like Jillian) 18 months old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 I have " The Out Of Sync Child " and another book called " Unlocking The mysteries Of SID " .I can not recall the author right now.The latter book was great . It was written by two women who have children with SID. I do not no if Gillian has allergies or not. Her doctor does not seem to think it is an issue. I am switching doctors. The Out Of Sync Child is really depressing. I get so depressed thinking about what Gillian must be feeling inside. It helps me sometimes to no that Gillian does have something that is not right inside,when she is driving me crazy,but a person can only take so much. I feel like I amlosing my mind sometimes.My husband gave me a great gift-4 days in New Orleans BY MYSELF to visit some friends.I am just wooried about being away from my daughter Thanks, ne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Hi, Right now, after some rounds of chelation and a few other supplements and... God knows what other things I give to my son enzymes too, starting today he finally seems to be able to understand almost everything I tell him, but he cannot communicate back. So I kind of have the same problem as you... Just that my kid is 3 I'm not sure how I could help you... I wish I could... I am sure though you will find a lot of really nice people on this board and many good advises, warm words to make you understand that you're not alone. I don't know how other people see this problem, but I think all these developmental problems are actually because of the heavy metals our children's bodies are loaded with. I use these terms, ASD SID AS.... whatever... only to make a difference between the symptoms, but I think actually all are about how the toxic metals affect our kids' bodies. What do you mean when you say " tremendous fear of food " ? Did you try any kind of therapy with your daughter? Did you try to desensitize her mouth with an electric tooth brush maybe? Or just a regular one... I don't know much about this... My son is 3 1/2 and he just started to chew the food that he eats. Also his words are better.. they're not just... chinese anymore. I have no idea how these children will be at school age. I am sure somebody else can help you here... Mine is only 3, as I said, and... well... I don't think you are talking about kindergarten, do you? ne, I really hope you will start to feel better soon. Don't despair. There are a lot of things you can do/try you can try lots of vitamins, you can try enzymes if you think she had a digestive problem, or even a yeast/parasites problem. You can even try chelation I guess It depends... You will have to read a lot... I think Moria can tell you exactly what Hope you're well ne Valentina > Valentina, Thank you for your reply. My daughter was diagnosed with > SID when she was 11 months old. She is now 18months. She is completely > normal in every > way except eating and speaking. She has a tremendous fear of food. She > says " dada " and that is it. I amnew to this chat room and I guess new > to this whole concept of SID. How do enzymes,etc help with speech? She > babbles all > day, extremely lovey, gives kisses,and she understands everything you > tell her she just can not communicate back with words. Also, how are > these > children when they are school age? Do most of them have learning > disorders?Pleasa help me. I am at the end of my rope. every Dr and > therapist she has does not no what to do for her anymore.She is not > responding very > well to therapy when it comes to eating. She is better than she was > but very miniscule. Thanks, ne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 ne, First of all, welcome. I consider myself new to this group as well. What I found is our children are all very different but when you said, " I am at the end of my ropes " I think most if not all share your sentiment. My son Tim is 8 and amongst other issues has sensory integration sensitivities with his vision, sound, and touch. I don't have the knowledge to help with your questions, but this is a wonderful group of caring individuals that will offer their insight, share their knowledge and help ease your concerns. Sharon Etchemendy Re: [ ] Re: Intro/Where To Start? Valentina, Thank you for your reply. My daughter was diagnosed with SID when she was 11 months old. She is now 18months. She is completely normal in every way except eating and speaking. She has a tremendous fear of food. She says " dada " and that is it. I amnew to this chat room and I guess new to this whole concept of SID. How do enzymes,etc help with speech? She babbles all day, extremely lovey, gives kisses,and she understands everything you tell her she just can not communicate back with words. Also, how are these children when they are school age? Do most of them have learning disorders?Pleasa help me. I am at the end of my rope. every Dr and therapist she has does not no what to do for her anymore.She is not responding very well to therapy when it comes to eating. She is better than she was but very miniscule. Thanks, ne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 ne, Are you going through your local school district for therapy and testing? Even if your child is not school age the school district must help you. That's why you pay school taxes even when you don't have kids or your kids are not yet in school. Your school district will almost definitely have an early childhood program. I know alot of people will tell you their horor stories about their experiences with school districts but mine have been nothing but wonderful. As long as you are strong and can be an advocate for your child he/she will do just fine. What I meant by my 2 kids having global delays is that they have some type of delay in every area of development (i.e. language, fine motor, social, etc.). After doing the tremendous amount of reading that I have done over the past 3 days since I found out about the possibility of my kids having mercury or other heavy metal toxicity, I'm convincing myself that this is the reason for their delays. But I'll reserve myself until I get the test results back. I have heard alot of good things about enzymes and essential fatty acids helping kids with language delays and sensory issues. SInce your child does not eat much at all he/she is almost definitely lacking in nutrition. I would look into a good vitamin/supplement for your child like Biometics. My mother was in failing health for years and started taking a strict regimin of these supplements and she is healthier than ever. I just ordered a few things to try myself. Their website is www.biometics.com. Hope this helps. Just remember, call your school district if you haven't already! Best, Deanna Mom to 5 1/2 and 3 going on 30! P.S. Have you tried the brushing protocol with your child? This worked wonders for my son. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 ne, ASD is Autism Spectrum Disorders. Do you know if she has allergies? Have you read any books of SID? I have one called " The Out-of-Sync Child " . I'll post the author's name when I get home...don't recall it at the moment. S On Tue, 08 January 2002, AhJhawk@... wrote: > > <html><body> > > > <tt> > Valentina, What I mean about a tremendous fear of food is she starts cring <BR> > and slapping you when you even show her food. She will eat a couple of things <BR> > and that is it. As soon as you put her in her high chair she starts crying <BR> > because she associates the high chair with food. We gave up on the high chair <BR> > a long time ago. What is ASD and what exactly are global delays? Like I said <BR> > I am new at this and have never heard of any of this until my daughter was <BR> > diagnosed with SID. I live in Kentucky and not very many doctors here even <BR> > think SID is a true condition. I had a pediatric gastro doctor tell me I had <BR> > one spoiled child and if I stop breast feeding and starve her then she will <BR> > eat when she gets hungry enough. I walked straight out of that office. I <BR> > would not even no where to begin with enzyme therapy, chelation, etc. Also, <BR> > here is some info that might help some of you: I started olive oil massages <BR> > on my daughter twice daily. This helps with allowing her body to absorb and <BR> > digest every bit of nutrition her body gets and helps with tactile <BR> > stimulation. She screamed when we first started this and now she loves it. It <BR> > also helps calm her. We have tried mouth massagers, electric toothbrushes, <BR> > rubbing our fingers across her teeh and gums and this has not helped. I hope <BR> > when she does get to school she will be o.k. I have this terrible fear that <BR> > she will be the child in the class that teachers call about daily because of <BR> > her issues and that she is made fun of because of her issues. I no that <BR> > sounds bizarre but she is absolutely beautiful and I want her to do well with <BR> > everything. Thanks, ne<BR> > <BR> > <BR> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 If you go through DLS (Direct Lab Services) they will use one of their doctors to order the test for you but it will cost a little more. S On Tue, 08 January 2002, " deedee832 " wrote: > > <html><body> > > > <tt> > I emailed them today at inquiries@.... & nbsp; They also have a <BR> > website www.doctorsdata.com. & nbsp; They told me that only my doctor can <BR> > order a test kit and that it's $76.00. & nbsp; As for chelation helping with <BR> > SID, I gess it would depend on how the test came back. & nbsp; If he/she is <BR> > positive, I would think it would help. & nbsp; One of the other more <BR> > experienced persons on this list would be able to tell you a little <BR> > better though.<BR> > <BR> > Neither of my children have Autism but both have global developmental <BR> > delays with the exception of gross motor. & nbsp; They both also have some <BR> > sensory issues (more so my daughter than my son). & nbsp; Luckily neither <BR> > have significant food texture issues. & nbsp; I'm hoping that if their tests <BR> > come back positive that chelation will help them to improve. & nbsp; I'm <BR> > most concerned with their language (expressive and receptive) <BR> > improving. & nbsp; I'm not getting my hopes up but I'm hoping this is the <BR> > answer I've been looking for for 3 1/2 years.<BR> > <BR> > Deanna<BR> > Mom to 5 1/2 and 3 going on 30!<BR> > <BR> > <BR> > <BR> > & gt; This is going to sound really stupid but how do you get in touch <BR> > with the <BR> > & gt; Doctors Data lab? My child does not have autism but she has Sensory <BR> > I <BR> > & gt; ntegration Dysfunction? Does chelation and fatty acids, enzymes <BR> > help SID? I <BR> > & gt; can offer something to those parents who have a child(ren) that <BR> > willnot eat. <BR> > & gt; My daughter was prescribed Peri Actin.It is actually used as an <BR> > & gt; anti-histamine but the side effects are increased appetite and <BR> > sleepiness.It <BR> > & gt; did not help her with sleeping,although it does most kids,it helped <BR> > some with <BR> > & gt; eating.If you get this RX for your child the directions for dosing <BR> > will be <BR> > & gt; for an anti-histamine. My doctor told me to put her on it a few <BR> > days then off <BR> > & gt; a few days then back on. What we do is twice a day for 4 days (m-<BR> > th_ than off <BR> > & gt; Friday, Saturday,Sunday.But all children are different so you may <BR> > need to <BR> > & gt; find what works best for you. This medicine is used in childrens <BR> > hospitals <BR> > & gt; for children who have cancer,etc. to help them gain <BR> > weight.ne, mom to <BR> > & gt; Gillian 18mnths<BR> > & gt; <BR> > & gt; <BR> > & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 ne, Have you ever considered the gluten - and casein-free diet for your daughter?? This often tends to help those who self limit or are repulsed by food. I highlysuggestlooking into itas I believe thatithelps the majority of the children. You can talk further to me aboutthis off the listif you would like: tntpilger@... Hang there, Blakes mom Re: [ ] Re: Intro/Where To Start? Valentina, Thank you for your reply. My daughter was diagnosed with SID when she was 11 months old. She is now 18months. She is completely normal in every way except eating and speaking. She has a tremendous fear of food. She says " dada " and that is it. I amnew to this chat room and I guess new to this whole concept of SID. How do enzymes,etc help with speech? She babbles all day, extremely lovey, gives kisses,and she understands everything you tell her she just can not communicate back with words. Also, how are these children when they are school age? Do most of them have learning disorders?Pleasa help me. I am at the end of my rope. every Dr and therapist she has does not no what to do for her anymore.She is not responding very well to therapy when it comes to eating. She is better than she was but very miniscule. Thanks, ne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 I also know that some of our autie > kids won't eat anything except gluten and casein foods, because they are so > addicted to the effects. Many many of these kids would only eat a few > things, until the parents put them on a gluten-free, casein-free diet and > broke the addiction. Oh, and > he is GFCF, just for good measure. I have heard and read great things and wonderful results about the GF/CF diet. But this is not a 2 or 3 month diet that you put your child on, it's a life long commitment as those who are on it can tell you. If you start it then go back to foods with gluten and/or casein your child could have severe reactions and/or regressive behaviors. So, if you decide to do it, do your research and be ready to do it 100%. There's a great website called the gluten free mall that carries a lot of ready made items and mixes to make it a little easier. I have a few friend with ASD kids who put their whole families on it. My one friend lost about 50lbs. because she cut out carbs so much so it can benefit everyone. My children are not on the GF/CF diet but they do not eat dairy, only soy (soy milk, cheese, etc.). They especially like the chocolate soy milk. This has helped them tremendously with their delays as well as their allergies. Best of luck! Deanna Mom to 5 1/2 and 3 going on 30! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 Hi Deanna, > But this is not a 2 or 3 month diet that you put your child on, it's a > life long commitment as those who are on it can tell you. If you > start it then go back to foods with gluten and/or casein your child > could have severe reactions and/or regressive behaviors. I've seen this happening with Denis so many times... His grand parents just wouldn't understand how important this diet is. UFF!! Anyway, I think in time, with chelation, this problem can be solved. Also, we are trying some enzymes now. They are called Peptizyde (I'm sure many use them already) and they are supposed to help reduce the production of exorphin peptides (like the ones produced from casein, gluten, soy), just as the CF/GF diet is supposed to do. > My children are not on the GF/CF diet but they do not eat dairy, only > soy (soy milk, cheese, etc.). They especially like the chocolate soy > milk. I'm not sure if you know, but soy can produce peptides like the ones from casein or gluten. Valentina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 My son used to be labeled as SID. Now we just call it autism. Anyway, labels aside, he used to be very sensitive to food as a baby. It couldn't be hot or cold, just lukewarm, and he wouldn't finger feed because he couldn't stand the way it felt. I do know that SI therapists have oral motor programs to help with this now. I also know that some of our autie kids won't eat anything except gluten and casein foods, because they are so addicted to the effects. Many many of these kids would only eat a few things, until the parents put them on a gluten-free, casein-free diet and broke the addiction. Eventually, quite a number of them started expanding their choices of food. With my son, we didn't know all this then (he's 21), but we started out respecting his parameters, then gradually kept trying more things with him. Now he eats like a horse! No problem there! Oh, and he is GFCF, just for good measure. My son is also one who has trouble with speech, but understands everything we say. He's come a long ways, but he has a ways to go. Barb Re: [ ] Re: Intro/Where To Start? >Hi, > >Right now, after some rounds of chelation and a few other supplements >and... God knows what other things I give to my son enzymes too, >starting today he finally seems to be able to understand almost >everything I tell him, but he cannot communicate back. So I kind of have >the same problem as you... Just that my kid is 3 >I'm not sure how I could help you... I wish I could... >I am sure though you will find a lot of really nice people on this board >and many good advises, warm words to make you understand that you're not >alone. > >I don't know how other people see this problem, but I think all these >developmental problems are actually because of the heavy metals our >children's bodies are loaded with. I use these terms, ASD SID AS.... >whatever... only to make a difference between the symptoms, but I think >actually all are about how the toxic metals affect our kids' bodies. > >What do you mean when you say " tremendous fear of food " ? >Did you try any kind of therapy with your daughter? Did you try to >desensitize her mouth with an electric tooth brush maybe? Or just a >regular one... I don't know much about this... My son is 3 1/2 and he >just started to chew the food that he eats. Also his words are better.. >they're not just... chinese anymore. > >I have no idea how these children will be at school age. I am sure >somebody else can help you here... Mine is only 3, as I said, and... >well... I don't think you are talking about kindergarten, do you? > >ne, I really hope you will start to feel better soon. >Don't despair. There are a lot of things you can do/try you can try >lots of vitamins, you can try enzymes if you think she had a digestive >problem, or even a yeast/parasites problem. You can even try chelation I >guess It depends... You will have to read a lot... I think Moria can >tell you exactly what >Hope you're well ne > > >Valentina > > > >> Valentina, Thank you for your reply. My daughter was diagnosed with >> SID when she was 11 months old. She is now 18months. She is completely >> normal in every >> way except eating and speaking. She has a tremendous fear of food. She >> says " dada " and that is it. I amnew to this chat room and I guess new >> to this whole concept of SID. How do enzymes,etc help with speech? She >> babbles all >> day, extremely lovey, gives kisses,and she understands everything you >> tell her she just can not communicate back with words. Also, how are >> these >> children when they are school age? Do most of them have learning >> disorders?Pleasa help me. I am at the end of my rope. every Dr and >> therapist she has does not no what to do for her anymore.She is not >> responding very >> well to therapy when it comes to eating. She is better than she was >> but very miniscule. Thanks, ne > > > >======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 Sorry to reply again, but if you want to know about autie issues/mercury poisoning, look up the autism/mercury paper on the autism research institute website. (I believe it's www.autism.com/ari) That will give you the list of symptoms these kids may be dealing with. Of course, none of them have all of them; some, only a few. Barb Re: [ ] Re: Intro/Where To Start? >Valentina, What I mean about a tremendous fear of food is she starts cring >and slapping you when you even show her food. She will eat a couple of things >and that is it. As soon as you put her in her high chair she starts crying >because she associates the high chair with food. We gave up on the high chair >a long time ago. What is ASD and what exactly are global delays? Like I said >I am new at this and have never heard of any of this until my daughter was >diagnosed with SID. I live in Kentucky and not very many doctors here even >think SID is a true condition. I had a pediatric gastro doctor tell me I had >one spoiled child and if I stop breast feeding and starve her then she will >eat when she gets hungry enough. I walked straight out of that office. I >would not even no where to begin with enzyme therapy, chelation, etc. Also, >here is some info that might help some of you: I started olive oil massages >on my daughter twice daily. This helps with allowing her body to absorb and >digest every bit of nutrition her body gets and helps with tactile >stimulation. She screamed when we first started this and now she loves it. It >also helps calm her. We have tried mouth massagers, electric toothbrushes, >rubbing our fingers across her teeh and gums and this has not helped. I hope >when she does get to school she will be o.k. I have this terrible fear that >she will be the child in the class that teachers call about daily because of >her issues and that she is made fun of because of her issues. I no that >sounds bizarre but she is absolutely beautiful and I want her to do well with >everything. Thanks, ne > > > Quote Link to comment Share on other sites More sharing options...
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