Guest guest Posted February 7, 2000 Report Share Posted February 7, 2000 Dear , Wow - that is pretty great progress. What techniques did you use to achieve such rapid progress? How did you keep track of 2000 words where did you get the words? Can he talk in multi-word sentences now? What are you working on now? Tell us more. At 03:00 AM 2/7/00 -0000, you wrote: >From: dbd@... > >Hi everyone! > >I am new to the list. I have been a subscriber to the ME LIST for quite awhile and have been doing ABA with my 3 year old son for about 8-9 months now. He has gone from absolutely no receptive or expressive skills to knowing all of his colors, shapes, letters (upper and lowercase), numbers, verbs, nouns, his address, telephone number, how to spell his name, and syaing well over 2,000 words!! etc. etc. I could go on. ABA has saved my little one's life. I am really looking forward to reading and contributing to this list! Are there any parents/professionals out there from Toronto, Ontario Canada? > >Talk to you all real soon! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2000 Report Share Posted July 7, 2000 Hello Tina, Many of our doctors leave the patient on the drugs they are currently taking and introduce the antibiotic slowly. Then the other drugs are gradually discontinued. The body doesn't like too many changes, too quickly. Dr. de Wet in your area is experienced with this protocol - he's on the list I sent to you or I can give you his contacts again if you'd like another opinion? Chris. >Hi, dear support group >I just joined this list for my mother. We found Dr. Brown's protol >and >very eager to try it. I hope I will get lots of support and >questions >answered here. > >my mom currently is using many medications including Salagen, >sulfasalazine, hydroco, pretozone, folic acid and vioxx and she also >do two Embrel shots every week. We ask one of the doctors on the >recommand doctor list in Houston, but she said she can't not >recommand >to stop any of those medication.... do any of you can give me or my >mom any suggestions.... > >Thank you so much > >Sincerely, > >Tina Lin > > >------------------------------------------------------------------------ >Life's too short to send boring email. Let SuperSig come to the rescue. >1/6137/0/_/532797/_/962554003/ >------------------------------------------------------------------------ > >To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2000 Report Share Posted July 24, 2000 << my autistic daughter Jen might have Mercury. How do I find out if she does? What test do I ask the doctor to do? >> Hair element analysis by Doctor's Data Laboratories (not some other place) which you interpret according to the " counting rules " previously posted, Fractionated urine porphyrins + creatinine by Kline laboratories, which you interpret according to the previously posted info for children (the test comes from the lab with adult norms on it only), Look at the pyruvate and lactate on the organic acids test - they are often elevated by mercury. Andy Cutler Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Staci, First of all let me say welcome and I'm glad that your search brought you to us. I promise you won't find a more supportive and loving group than this one! Second I want to say I understand! The information I collected from this site was overwhelming but so very, very helpful. I only wish I had found it sooner. Your baby is young and it is possible that with aggressive repositioning and plenty of tummy time that Adam's head will round out some on its own. I must stress the word possible. Most peds are very quick to give a blanket statement of " it will round out on its own " and that is not always the case! I noticed my daughter's flatness when she was almost 4 months. I pointed it out to our ped who gave the standard " it will round out on its own " response and 4 months later it was not better, it was worse. We did not get into her helmet until she was 9 months old and I am very sorry we didn't start earlier. I think you would be OK to wait for the 4 month check, but if the situation is weighing on your mind I would suggest making an earlier appointment and asking that he/she give you a referral to a specialist. (neurosurgeon, cranial facial specialist, plastic surgeon) The specialist will be more able to address your specific concerns and offer suggestions and guidance. I would not wait past the 4 month check to get a referral to a specialist as the sooner you begin therapy the better your chances of full correction. We have had some people here who have had good luck with repositioning and hopefully one of them will speak up. You may notice at least some improvement through aggressive repositioning. It is a very difficult and personal choice. I hope you will stick with us as you go through the decision making process. We will support you and offer advice and friendship no matter what you decide!! Best of luck to you, Adam and your family! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Thank you everyone for all of your advice. My husband and I have decided to take Adam to see a neurosurgeon. Hopefully the wait for an appointment won't be too long. I appreciate all of the advice and will keep the list posted to our results. Thank you again. Staci & Adam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Hi Staci, and welcome to the group! You've been given some great advice, but I also wanted to point you to www.plagiocephaly.org/support/repotech.htm There are some repositioning tips there, plus a lot of other info. I hope you will keep us up to date with what you decide. ) Kendra in CanadaFor more plagio info, go towww.plagiocephaly.org/support... ----- Original Message ----- From: stacislp@... Plagiocephaly Sent: Tuesday, June 19, 2001 9:19 AM Subject: New to the List Hi everyone. My name is Staci and my son Adam is almost 3 months old. My husband & I first noticed his "flatness" when Adam was 6 weeks old. I talked to Adam's pediatrician at his 2 month well visit. She made light of the concerns and suggested more time on his belly and his head work round out on it's own. In my heart I knew I should look into it more. An internet search brought me to this group. I don't know were to start. I feel overwhelmed by all of the information I've been reading over the past two days. I'm not sure if I should see our Dr. again befor ethe 4 month visit or if I should just continue the repositioning efforts to see if theat works or if we should see a specialist. We live in the Philadelphia area, and if anyone has any advice or suggestion about a specialist to see I would appreciate it.StaciAdam's MomFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Hi Staci, My son, n, was diagnosed at age 3 months with torticollis/plagiocephaly. Our pediatrician referred us right away to Dupont Hospital for Children to begin PT and see the neurosurgeon. Our neurosurgeon did not recommend banding and we have been being followed closely by him. We are a success story in that our sons head is moldly and rounding out nicely. We did aggressive repositioning in the beginning and n continues to be in PT. You are fortunate to live in the Philadelphia area and to be close to both CHOP and Dupont. My advice would be to seek the opinion of a neurosurgeon at either hospital. Don't wait until your 4 month visit to ask for a referrel. It takes time to get an appointment with a neurosurgeon so it is best to call ASAP. I highly recommend Dupont Hospital but I am sure the DR's at CHOP are just as good. Kathy > Hi everyone. My name is Staci and my son Adam is almost 3 months > old. My husband & I first noticed his " flatness " when Adam was 6 > weeks old. I talked to Adam's pediatrician at his 2 month well > visit. She made light of the concerns and suggested more time on his > belly and his head work round out on it's own. In my heart I knew I > should look into it more. An internet search brought me to this > group. > I don't know were to start. I feel overwhelmed by all of the > information I've been reading over the past two days. I'm not sure > if I should see our Dr. again befor ethe 4 month visit or if I should > just continue the repositioning efforts to see if theat works or if > we should see a specialist. We live in the Philadelphia area, and if > anyone has any advice or suggestion about a specialist to see I would > appreciate it. > > Staci > Adam's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Hi Staci, Welcome to the group. I too was overwhelmed when I read all about plagio, but I also became more informed about it. If you feel that you need to see a specialist, then go ahead with it. The sooner you start the process the better. Sometimes it takes a long time to get in to see a specialist. Continue with the repositioning and get an appointment for a neurosurgeon. Also, take pictures of Adam's head, this way you can go back and see if the repositioning is working. The pictures really helped me to see my son's head shape. I know how this can be difficult, but you are already getting a heads up on the issue. Let us know how things go for you. & DOC Grad > Hi everyone. My name is Staci and my son Adam is almost 3 months > old. My husband & I first noticed his " flatness " when Adam was 6 > weeks old. I talked to Adam's pediatrician at his 2 month well > visit. She made light of the concerns and suggested more time on his > belly and his head work round out on it's own. In my heart I knew I > should look into it more. An internet search brought me to this > group. > I don't know were to start. I feel overwhelmed by all of the > information I've been reading over the past two days. I'm not sure > if I should see our Dr. again befor ethe 4 month visit or if I should > just continue the repositioning efforts to see if theat works or if > we should see a specialist. We live in the Philadelphia area, and if > anyone has any advice or suggestion about a specialist to see I would > appreciate it. > > Staci > Adam's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 Staci, Glad to hear that you will be seeing a nuerosurgeon. That person will be able to explain the condition and offer treatment options. Your specialist may suggest having x-rays or a CT scan done to rule out craniosynostosis. It's possible that the neuro will recommend repositioning for a little longer just to see what kind of progress you make with that. In any case you are catching it early and have time to check out your options. I would agree with the person who suggested taking photos. That will be the only real way to determine if you are seeing progress. I would take a top view photo as well as back view and both sides. Take updated photos periodically to check progress. Good luck and I hope you will let us know when you get your appointment with the neuro. Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 Hi Staci! I hope I am not too late to respond to your post! I wanted to introduce myself. My name is Niki and I am the mom to 4 beautiful children. My 10 month old twins, Kaylie & Danny, both wear the STARbands to treat their plagiocephaly and we are seeing great progress!! Anyway, I wanted to let you know that we live in Philadelphia!! My ped kinda blew us off too when I approached him about the twins' flat heads. At our next appointment I came armed with a folder full of info that I had printed off of the internet so he knew I was informed and ready for a fight Luckily he didn't fight me and gave me the number to our nuerosurgeon. Our nuero is Dr. Samual Neff at St. 's Hospital for Children and he is really nice. He, in turn sent us to our orthotist, Harry J. Lawall & Son Orthotics and Prosthetics. I have nothing but high praises for our ortho and our STARbands! I highly recommend that you take pictures of Adam's head from all angles so you know if repositioning is working or not. And it wouldn't hurt to bring all the info you can find to you next ped appointment. That way you will have a rebuttal to every arguement they make. Good luck to you and your family! It's nice to see a 'neighbor' here! If you ever want to email me privately or instant messege me, my addy is IrishEyes175@.... Talk to you soon! Niki Kaylie & Danny (STARband 4.5.01) Phila., PA > Hi everyone. My name is Staci and my son Adam is almost 3 months > old. My husband & I first noticed his " flatness " when Adam was 6 > weeks old. I talked to Adam's pediatrician at his 2 month well > visit. She made light of the concerns and suggested more time on his > belly and his head work round out on it's own. In my heart I knew I > should look into it more. An internet search brought me to this > group. > I don't know were to start. I feel overwhelmed by all of the > information I've been reading over the past two days. I'm not sure > if I should see our Dr. again befor ethe 4 month visit or if I should > just continue the repositioning efforts to see if theat works or if > we should see a specialist. We live in the Philadelphia area, and if > anyone has any advice or suggestion about a specialist to see I would > appreciate it. > > Staci > Adam's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Welcome Amy! I think that is ?? that they didn't offer help! We first met with a social worker from EIP when Jaynie was 20 moths old and said 6 words I think. We actually were being evaluated since she isn't walking yet. I voiced concern over her lack or speech/comprehension as well and they sent us for an eval with SLP. She now is saying many more new words and her words are pretty clear when she says them. Sometimes she will say a word only one time but I will take whatever we can get! She has yet to combine any words. The ped neurologist dx her with Dyspraxia. That was only after I voiced concern over some oral issues and he said matter of factly " well she has oral dyspraxia " and that was that! LOL Um, okay! So he said he was going to order the EIP to do feeding therapy in addition to PT, OT and Speech therapy. Hi, my name is Amy and I have two children. My eldest is Cody, who is 22.5 months old. My youngest is Chloe, 7 months. Just in case you are wondering, it is Cody who brings me to this list, LOL. I took him to a speech therapist at 18 months, who recommended he get around other kids more to get him talking. Hmmm, we do that, and it isn't working. We are in the process of moving four states away, (we should be moved within 2-3 months) so when we get to Virginia I will insist on therapy ASAP. Within in the last two weeks, he started saying two words. Ma for mom and " J " for juice. Oh, I forgot... " J " for cheese. So he is almost two and he says two words. I have been researching apraxia, and once we move I am hoping to either get a diagnosis or rule out verbal apraxia. I don't think he has oral apraxia. Anyway, I have a question about EFAs...I read on the apraxia.coc website that they can be great for kids who have speech delays and apraxia. I am not sure how to word this..but are any of you worried about potential side effects with long term use of EFAs every day in small children? Are your pediatricians for or against the EFAs??? Thank you for allowing me to join your list! -Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Hi Amy, Your story sounds familiar. My son Corey was about at the same stage your Cody is at when we started intensive speech therapy. We went 3 times per week to a private therapist and once he turned 3 he started getting additional therapy through the school district. He is now 3yrs 8mths and his vocabulary has really exploded! He is still very difficult for other people to understand. But, the immediate family have learned to understand most of what he is saying. He will need therapy for quite some time to learn to get the beginning and ending consonants on his words but he has come a long way. As far as the EFA's, I personally think everyone should be taking them. I have done so much research and studying about the benefits of EFA's that I wouldn't go without mine. I actually started taking an Omega 3 supplement prior to learning that they might benefit my son with apraxia. So, I talked to the pediatrician and she said give them a try. She said there is nothing in them that would hurt him and if they help - Great! Corey has been on ProEFA for about 6 months now and we've seen remarkable improvement in him. Good luck with your move and with finding a good ST when you get there. Pam KC, MO >Anyway, I have a question about EFAs...I read on the apraxia.coc >website that they can be great for kids who have speech delays and >apraxia. I am not sure how to word this..but are any of you worried >about potential side effects with long term use of EFAs every day in >small children? Are your pediatricians for or against the EFAs??? >Thank you for allowing me to join your list! -Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Hello Amy and welcome!! I agree that when you get settled you need to have Cody tested. Most SLP's, major hospitals and Early Intervention have a FREE initial speech screening to see if you need to have further testing. If you go through an SLP make sure they are familiar with working with Preschool children with apraxia of speech. The most important advice I can give you is to trust your instincts!! Trust your gut feeling!! You are Cody's mom and you know what he needs - do not let ANYONE tell you differently or make you doubt yourself. We are all here to stand behind you and your decisions. Now, when you get to Virginia please let us know. I am starting to find contacts in all the states and will hopefully have one for Virginia when you get there. They will be able to help you find the resources and help you will need. Where in Virginia are you moving to?? Concerning EFA's - my son is taking them and his pediatrician encouraged him to. In July there was a medical/research conference on EFA's and children with neurological speech disorders -you can read more about this on www.apraxia.cc. I hope I was able to answer some of your questions - please let me know when you move and if there is anything else I can do to help you and your family!! Carnell North Carolina www.verbaldyspraxia.com > Hi, my name is Amy and I have two children. My eldest is Cody, who > is 22.5 months old. My youngest is Chloe, 7 months. Just in case > you are wondering, it is Cody who brings me to this list, LOL. I > took him to a speech therapist at 18 months, who recommended he get > around other kids more to get him talking. Hmmm, we do that, and it > isn't working. We are in the process of moving four states away, (we > should be moved within 2-3 months) so when we get to Virginia I will > insist on therapy ASAP. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Thank you all for being so welcoming! We will be moving to the Lynchburg area. -Amy > > Now, when you get to Virginia please let us know. I am starting to find > contacts in all the states and will hopefully have one for Virginia when you > get there. They will be able to help you find the resources and help you > will need. Where in Virginia are you moving to?? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Hi Lori, and welcome to the group. You will have plenty of support here as you may already know. I am one of the grandmothers here on the list. My lovable granddaughter, has verbal apraxia and she is 3 1/2. We have the highest hopes for her. She understands everything and slowly she is learning words. Good luck with and God bless. Grammy Patty to and a bunch and from Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 > Hi Lori, and welcome to the group. You will have plenty of support here as > you may already know. I am one of the grandmothers here on the list. My > lovable granddaughter, has verbal apraxia and she is 3 1/2. We have > the highest hopes for her. She understands everything and slowly she is > learning words. > Good luck with and God bless. Grammy Patty to and a bunch > and > from Ohio Thanks I really appreciate the welcome. What kind of a speech program does have. has been set up to have 1 hr. once a week and I don't know if thats enough. Anyway right now it's hard to know if anything is the right thing to do. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2001 Report Share Posted November 17, 2001 new to the list > Hi to all, > my name is , i have a 2.7month old boy(asd) who has been gfcf since April. I didnt have any tests done before starting him on the diet,i simply thought it can only be beneficial to him , it didnt have huge improvements although his eye contact and concentration seemed to improve. The initial problem of frequent and mushy nappies was and is still a problem, i should get on with my question to the list: should i start enzymes or should i see a nutritionist first ? > i feel very unsure about the whole enzyme topic and would greatly appreciate some advise > thanks in advance > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2001 Report Share Posted November 19, 2001 Welcome, ! You sound like you're in the same place as me! My son is 2y8m and has been GFCF since April.. We just started enzymes this last Tuesday, and so far it's been a very positive experience. I did not consult a nutritionist first, but that was just my choice. I didn't have any testing done before going GFCF either, just tried it to see how he'd do. ~ SAHM to: Dana (3.5, NT) and (2.5, autistic, HI) http://www.butcherfamily.freeservers.com [ ] Fw: new to the list new to the list > Hi to all, > my name is , i have a 2.7month old boy(asd) who has been gfcf since April. I didnt have any tests done before starting him on the diet,i simply thought it can only be beneficial to him , it didnt have huge improvements although his eye contact and concentration seemed to improve. The initial problem of frequent and mushy nappies was and is still a problem, i should get on with my question to the list: should i start enzymes or should i see a nutritionist first ? > i feel very unsure about the whole enzyme topic and would greatly appreciate some advise > thanks in advance > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2001 Report Share Posted December 9, 2001 Hello to everyone. Well sort of new. I was a member in the past. We had not really understood the difference between and traditional DTT done by most at that time. Now that I have attended 3 workshops through Dr. Carbone I completely understand the difference and have resigned onto the group. Any first time pointers, please forward them and as much and often as you all see fit. I have two children with autism. One is intermediate and 10 years old the other is considered an early leaner and 9 years old. We are trying to implement as much as possible. Thanks for any help. Bobbie Gallagher Brick, NJ data > > I would like some feedback on how others are taking data on intraverbal > stories and NET. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2002 Report Share Posted May 12, 2002 Hello all, I'm new to the crsupport list so I thought I should introduce myself. I'm 26yrs, currently living in a city in Sweden not too far away from the artic circle. I first heard about CR in 97 or 98. I practice som very moderate form of CR in the sense that I try to eat low cal/high nutrient density food and usually eat nothing or just a little something on Saturday or Sunday. If all goes well I'll try to make it two days a week and just eat a fruit salad or something similar on those days. Feel free to comment or ask any questions you may have. Sincerely, Ake Brannstrom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2003 Report Share Posted August 26, 2003 --- In , Tamara Easley <tkeasley@y...> wrote: > I have a 17-year-old daughter who has autism. I gave > her ONE Omega 3 capsule and she just flipped out. My son did not tolerate any EFAs until about round 60 of ALA chelation. He still does not tolerate fish, but now will tolerate flax oil. Dana Quote Link to comment Share on other sites More sharing options...
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