Guest guest Posted June 16, 1999 Report Share Posted June 16, 1999 , Welcome to the list. I can't speak for everyone but I think many of the people who contribute to this board have seen Dr. Goldberg at some point. No, personally, we have not tried Secretin. There is no single reason but several. 1. Afraid of injecting hormones 2. Little prededence for its use for that purpose 3. Intestinal problems are not a dominate symptom 3. Description of changes/improvements I've read on the net are not better than what I am observing under current treatment. For us it ads up to-- Big risk/little gain Several aspects of your post interested me. 1. What convinced you that you were dealing with an immune problem? The reason I am interested is because I pretty much came to the same conclusion because of the many and repeated physical health problems we witnessed. Figured, we had to fix that before we got anywhere with the congitive stuff and that the two were probably related, then I heard a tape of Goldberg speaking at a DAN conference and pursued it. 2. When did you start your treatments of your son (at what age) and what did you do 3. Can you broadly describe the progression of your son's improvements... when was the transistion from Autsim to High-Functioning Autism High Functioning to Asperger's. What were his dominant symptoms? At what point did speech become established etc. This isn't an assignment. Answer when you can and if you like. Otherwise hope you enjoy and can use the information you get here. Bounds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 1999 Report Share Posted June 19, 1999 Re: (no subject) >From: Bounds <mbounds@...> > >, > >Welcome to the list. I can't speak for everyone but I think many of >the people who contribute to this board have seen Dr. Goldberg at some >point. > >No, personally, we have not tried Secretin. There is no single reason >but several. 1. Afraid of injecting hormones 2. Little prededence for >its use for that purpose 3. Intestinal problems are not a dominate >symptom 3. Description of changes/improvements I've read on the net are >not better than what I am observing under current treatment. For us it >ads up to-- Big risk/little gain > >Several aspects of your post interested me. 1. What convinced you that >you were dealing with an immune problem? The reason I am interested is >because I pretty much came to the same conclusion because of the many >and repeated physical health problems we witnessed. Figured, we had to >fix that before we got anywhere with the congitive stuff and that the >two were probably related, then I heard a tape of Goldberg speaking at >a DAN conference and pursued it. 2. When did you start your >treatments of your son (at what age) and what did you do 3. Can you >broadly describe the progression of your son's improvements... when was >the transistion from Autsim to High-Functioning Autism High Functioning >to Asperger's. What were his dominant symptoms? At what point did >speech become established etc. > >This isn't an assignment. Answer when you can and if you like. >Otherwise hope you enjoy and can use the information you get here. > > Bounds > >------------------------------------------------------------------------ >ONElist: where real people with real interests get connected. > >Join a new list today! > , Let me give you a brief history. My pregnancy was normal. The birth of my son was also(he received a 10 on the apgar). My sons hit all the developmental stages on cue, except for language. As he got older,2-21\2 we felt like he was sound sensitive, slightly tacitly defensive, and what we called a " runner " , he didnt like to sit for very long. At 10 months my son said his first word (other than da da and ma ma). At 13 months he got very sick. We were told it was a respiratory cold, but after dragging him to the doctors office every day for a week he was finally admitted into the hospital. The diagnosed was RSV. After that he was sick all the time,and his language stopped developing. He had chronic ear infections,allergies,strep, and seemed hypoglycemic. I was afraid of all the antibiotics that we had him on and decided to take him to a chiropractor. The chiropractor suggested we take him off of dairy products. It was like magic. His ear infections and hypoglycemia went away and his language improved. This happened during 2yrs and 3yrs of age. Cognitively I knew my son was O.K. because even though he didn't have any meaningful speech he knew by sight and could say the whole alphabet, numbers up to 20 and knew 8 colors at the age of 2. This also made me feel that his problems were linked to his immune system. After our chiropractic experience I started reading everything I could on natural types of healing methods. I ended up putting my son on a very strict diet with no dairy, no refined sugar, no hydrogenated fats. I also supplement with calcium, multiple vitamin, 5HTP and flaxseed oil. The stronger my sons immune system got the more his language improved and he is calm and able to sit for as long as you need him to (no more running)! My son can now occasionally eat dairy, like pizza at a birthday party. He know longer takes the flaxseed oil. I gave that to him for his asthma which has disappeared. He still has allergy problems in the late summer and early fall. The progression of his labeling went like this, preschool-Autism, Kindergarten-Highfunctioning Autism, 3rd grade-Aspergers. , Im sorry for the length of this. Hopefully it addresses your questions. I really just put together all of these things for my son on my own with alot of research and what seemed to make sense for his well being. I did alot of things that didnt work also, but thats another book! Angie I hope this is helpful to you also. Pletts P.S. A non-nutritional therapy that we did when our son was 4yrs old was the Auditory integration. This also really helped his language to develop further. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 1999 Report Share Posted July 23, 1999 Read your email; Dr. Goldbergs sees my kids in SC; he comes out once a year at least and sees all of us in SC and surrounding states at once. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 1999 Report Share Posted July 24, 1999 , I am relatively new to the list. I haven't been searching for immune issues until very recently- actually not until after the conference in Orlando. Since then we have had my son tested for measles titer (within range) and myelin antibodies- positive and an immune panel- total IG's high- everything else normal. I am wondering what your answers to the questions you posted are. In other words, what treatments are you using for immune system reapir and what have you seen as a result. My son, age 5, has had periods of improvement and regressions. He is diagnosed PDD (at age 3 1/2) but by the time he was near 5, I think if he was re-evaluated he may have been diagnosed with autism outright. This is mainly because of him stimming and sterotypies. He had language (up to 4-5 word sentenses) then went through a stuttering period was back down to one-two word phrases. He is now doing a bit better. So, if there is something I can do to help stop, or limit the regression periods, I would love to try. Also, another question, does Dr. Goldberg see patients outside of California? How does he do this? Thanks and I would appreciate any information that I can get- BTW, my son is a fraternal twin- his brother is NT. >>> Bounds <mbounds@...> 06/16/99 12:37PM >>> From: Bounds <mbounds@...> , Welcome to the list. I can't speak for everyone but I think many of the people who contribute to this board have seen Dr. Goldberg at some point. No, personally, we have not tried Secretin. There is no single reason but several. 1. Afraid of injecting hormones 2. Little prededence for its use for that purpose 3. Intestinal problems are not a dominate symptom 3. Description of changes/improvements I've read on the net are not better than what I am observing under current treatment. For us it ads up to-- Big risk/little gain Several aspects of your post interested me. 1. What convinced you that you were dealing with an immune problem? The reason I am interested is because I pretty much came to the same conclusion because of the many and repeated physical health problems we witnessed. Figured, we had to fix that before we got anywhere with the congitive stuff and that the two were probably related, then I heard a tape of Goldberg speaking at a DAN conference and pursued it. 2. When did you start your treatments of your son (at what age) and what did you do 3. Can you broadly describe the progression of your son's improvements... when was the transistion from Autsim to High-Functioning Autism High Functioning to Asperger's. What were his dominant symptoms? At what point did speech become established etc. This isn't an assignment. Answer when you can and if you like. Otherwise hope you enjoy and can use the information you get here. Bounds ------------------------------------------------------------------------ ONElist: where real people with real interests get connected. Join a new list today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1999 Report Share Posted September 28, 1999 I actually did visit www.gfcfdiet.com but couldn't find choc chips Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1999 Report Share Posted September 28, 1999 Visit www.gfcfdiet.com (no subject) From: Kkscharste@... Listmates: I've moved and can't find my special foods catalogs! Anyone know of an online co. where you can order GFCF choc. chips ? Thanks Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hi Candace, I can't help you with the feelings of sadness etc because I am going through the same thing. But I hear hopeful stories all the time and that DOES help. If possible try to find a support group in your area. My husband and I went to one last night for the first time and it was very helpful! As for dealing with everyone else, just try to explain the condition to them if you are comfortable doing so. I have found that the more people understand that my son isn't just being stubborn and that he physically can't talk they tend to be more understanding and not expect him to " perform. " My feeling is that the more educated people are the easier it is. I hope this helps...I understand your feelings!! Kori Gaddis Mom to Cole, 3.3 years and McKenna age 9 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 It does get better. MY son was very angry and frustrated in the beginning and he has an older sister who developed speech normally. I would constantly compare how I was able to go to lunch with his siter at age two and she would tell me aboutt what she saw. My son is almost 4 and is finally telling his own stories and shows us pictures in books to explain some of the things he sees. A picture board was very helpful to us and gave him an outlet for some words. We have learned to marvel in the little steps. When he blew bubbles for the first time or could even point to the picture we were talking about in the book so we knew he understood or when he held a friends hand who was crying. I am sure his sibling will understand him before anyone else does as my daughter can grasp my sons speech better that we can. When other children or adults ask questions we just acknowledge that every one learns things at a different speed and for kids we point out how hard it was for them to learn to tie shoes. Different strokes for different kids. This is not to say we do not cry sometimes but as Seth has made progress so have we I hope this helps [ ] (no subject) Hi Everyone!! I am in need of some GOOD e-mails!! I have two questions. First, please tell me as a parent how on earth do I continue to cope with this disability and still try to be positive? As tears are rolling down my face a year and a half since we have realized our son is " different " , it is still so traumatic for me!!. Tyler is three and half years old and he is a twin. His sister developed language just fine. I constantly compare. I know I shouldn't, but when it stares you in the face everyday it is devastating! Will the pain get easier? And ,of course, I ask myself is their hope out there for this little boy!? I quess I just want to know how people deal with this painful process! My second question is this: When family, friends, relatives and neighbors come by, they are always trying to get in Tyler's face to get him to talk/socialize. I am EXTREMELY UNCOMFORTABLE with this. And so is Tyler! It is both frustrating and embarressing! Any advice on how I can avoid these situations without hurting anyone's feelings or hibernating my son? My e-mail is: twins 8197@... Thank you Candace Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Dear Candace, I feel the same way you do. Sometimes when my son is sleeping at night, I lay down next to him, hold him and cry. When I first found out, I cried for 7 days straight day and night. I didnt think I'd ever stop. It is still extremely traumatic for me too and not knowing what the future holds for him makes it difficult to have a positive outlook sometimes. I know in my head that things could be worse, but in my heart I cant help but feel gut wrenching sorrow. I am, however trying to take one day at a time. The happiness I feel everytime he even attempts to say a word, whether it sounds right or wrong, makes it a little easier. ...because at least he's making some progress and the joy I see in his face when he tries to say something and we both put our arms up and say "YEAH!" or as he has recently learned "TA DA!" also makes it easier. I also, just recently found out that my 3 year old niece has Luekemia and seeing all the children at the hospital with terminal illnesses brought out in me a more positive outlook of what I have. I have a beautiful, very affectionate and loving 2.6 year old boy, who brightens my every day... and he's mine to keep. I hope that this somehow helps you, you are not alone, I understand your sorrow, I feel it every day. I am trying to stay positive, which really isnt very easy on some days. Best Wishes to you and your family. Sincerely, Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 I can certainly sympathize with you. I also have twins - they are boy/girl 5 year olds. My son has developed fine, my daughter has had significant developmental delays. She has pretty much caught up in all areas except speech. She has just recently used the words " no " , " yeah " , " mommy " and " daddy " . She has also just started to imitate some sounds. I too am constantly faced with the differences in my twins (I also have a 7 year old daughter). does very well receptively, it's the output that is the problem. She is in a special ed kindergarten and is in a " regular " kindergarten. Fortunately, so far, our home school has been the best place for , so she hasn't been separated from her siblings. In a way it is helpful to have learning the more typical things, that way I can still work with her on similar things and try to adapt them for her. She uses a picture system for communication and I guess since I'm always with her can usually figure out what she means. As for friends, family, and neighbors I guess I just try to keep everyone informed. I've never been hesitant about trying to explain 's delays to anyone. I think part of it is always the hope that somebody knows somebody that knows somebody that has experienced something similar and found something that worked. I'm sorry to be so wordy. Hang in there - you are not alone. Feel free to EMail me if you need someone to " talk " to. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2001 Report Share Posted January 19, 2001 Candace, I am new to the group,and I face the same frustrations and tears as you.My son,,will be 3 in February.In April he began speech therapy,and during the course it has been mentioned that he may have apraxia.It is so hard to listen to his friends talk and laugh,and say things to their mothers that I may never hear.I have never heard I love you,and that is the one thing I long for.I am also in need of good e-mails as well.So,I hope that some in the group can offer support,and advice to my husband and I. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2001 Report Share Posted July 29, 2001 Hi, resending this, i think it was one that wasn't received Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 Message: 1 Date: 2 Dec 1999 06:14:08 -0000 From: bbird098xxxxxxxxx (DOT) xxx Subject: welcome and question #1: when is too much not enough?? Hi guys, the reason I started this listgroup was because the e-mails on the me- list were becoming very confusing. It is difficult to explain Dr. Carbone's teachings if you have not experienced it first hand.... when you are actively involved in a lovaas type aba program. (or at least that is what I felt when Lynette tried to explain it to me before I attended a conference. Anyway, when we first started ABA the me-list was the best resource for me. It kept me intouch and up to date on the latest information. When I had a problem I could ask a question and quickly get an answer. That is my hope for this list.... that we can use it to ask programming questions and provide answers. With this in mind, I need each of you to go to the INVITE section at www.onelist.com under the community and invite anyone you can think of that is currently implimenting this type of program (both parents and professionals). There is also a CALENDAR section where you can go in and post any conference that pertains to this type of teaching. I have already referenced the Jan Dallas conference but do not have time to write the others right now. If you do, please feel free to write it in. MY FIRST QUESTION IS: How do you know how many things to start with... what is too much under one " program " and what is " not enough " . Example: Teaching categories... " Name some animals, etc. " Currently, we have 3 open. (animals, colors and community helpers). I guess you could say 4... we are also doing " name some friends at school. " Anyway, we are laying out 5 cards in the same order and gradually turning over the cards and fading the card all together. Sometimes I think Zach is getting it and then the next time I think it is too much information... I know that our problem may also lie in how we are presenting the information (though I am trying to make sure the therapists understand it must first be taught in the same order, etc.) BUT how do you keep track of the level of prompt the previous therapist stopped with? I have more questions... but this should help get a thread started. Thanks in advance. Rhonda PS Please bear with me... I am learning how to do this list... I do not know how to get an index at the top of the digest mailings... I am checking into this. Quote Link to comment Share on other sites More sharing options...
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