Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 In a message dated 6/28/2005 5:47:20 PM Eastern Daylight Time, ddomingo122@... writes: My son was different in that he had no sound but he had words (strange huh!!). He closes his mouth and his words come out of his nose Correct me if I'm wrong, but part of apraxia, has alot to do with breath support, my son was always able to do all those things as well, but he had a really hard time with breath support, and still does, and it is improving with OT/PT/ST. I believe alot of people have the same issue, especially if their children have a global apraxia as does my son. I think its quite common. please correct me if Im wrong. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 My son was different in that he had no sound but he had words (strange huh!!). He closes his mouth and his words come out of his nose. Even his SLP though that was different. She actually thought maybe he had sucked on the pacifier too long and then I told her as hard as I tried to get him to take a pacifier when he was a new born, he never used it. But you can hear him attempting to imitate through his nose. the really strange thing is he can eat, blow bubbles, blow whistles, brush his teeth, but he couldn't open his mouth to talk. What we did was, like I said before we taught him sign, which eased his frustration. Then when ever he would open his mouth and make a sound...any sound we would clap and waive our hands in the air and tell him " good using your words, Big Boy!!! " Something that his SLP does is get him playing and excited. Although they really don't realize they are talking at that point, the practice is great. He really loves bubbles so she would blow lots of them and get him all excited and he would jump and laugh. When they were gone she would say " bubbles? " and he would say " ba ba " and keep playing. It took about 2 months and now he is trying to say a lot of words. Most don't sound anything close to what they should but we use the sign with the word and then I tell him " good using your words and your signs!! " and he just thinks that is the greatest. Every day is a new day and another chance to step forward. Don't give up. I think it all boils down to what works best for your child. Our first SLP got my son to say his first word " duck " but he said it once and never said it again and still has never been able to say it. She had more of a calm focused environment and the new SLP has a fun intergetic environment that my son has responded to with amazing results. But when you have a child with no words, just focus in the begining on getting him to open his mouth and make a noise.If you say Mama and he says Ah, make a big deal about it. This all worked for my son, we still have a long way to go but I never thought he would open his mouth to talk. He honestly though he was talking. I hope this helps. le California, mother to Curtis, 2 yrs with verbal apraxia jacart2 <smoffat@...> wrote: Hi, My name is Stacey Moffat and I live in Kitchener, Ontario, Canada. My son is almost 22 months old. He was born with Pierre Robin Sequence and a cleft palate and he is not talking. We've been told that his speech delay is not related to his cleft palate which was repaired just before turned a year old. He had tubes put in his ears at 5 months of age which is a common occurence for children with clefts........ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 I don't know what " breathe support " is. My son is not globally apraxic, just verbally. It was my understanding that children with apraxia are late talkers, and then when they do begin to talk the jumble up words or drop syllables off. My son could even open his mouth. There is nothing wrong with his breathing or his facial muscles. he can do anything a child his age can, except open his mouth to talk. His new SLP (who is just fabulous) even said that it was a little different, the way he says things like " milk " with his mouth closed. If you closed your mouth and said milk with your mouth closed using only your throat and letting the sound come out of your nose, that is what my son sounds like. But now that his SLP has gotten him to open up a little bit, he says milk " dit " (thank goodness he can sign). He still talks with his mouth completely shut most of the time, but will attempt to imitate one word at a time. Sometimes a sentence, but it comes out with the same sound over and over again. Like " want to talk to dada? " (DH is deployed) Curtis says " da da da da da " . I think it actually take more breathe support to talk out of your nose than it does out of your mouth, so I am not sure on that one. I have only been living with this Dx for the last year and the only person I have known to have it is my son and all my research has been online, doctors, SLP's, and books. So I am no expert. All the kids are different. le California, mother to Curtis 2yrs with verbal apraxia mmich5569@... wrote: In a message dated 6/28/2005 5:47:20 PM Eastern Daylight Time, ddomingo122@... writes: My son was different in that he had no sound but he had words (strange huh!!). He closes his mouth and his words come out of his nose Correct me if I'm wrong, but part of apraxia, has alot to do with breath support, my son was always able to do all those things as well, but he had a really hard time with breath support, and still does, and it is improving with OT/PT/ST. I believe alot of people have the same issue, especially if their children have a global apraxia as does my son. I think its quite common. please correct me if Im wrong. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 Hi Stacey, Welcome! I am pretty new here too and have found this site invaluable! I have a 20 mos. old son and completely understand your frustration with wanting to do something and not knowing where to begin and also with people giving their well-meaning, but frustrating advice. The best thing we have done so far is to teach Colby sign language. We ordered " Signing Time " DVDs from Amazon.com and he loves them. After 7 weeks, he now uses 30+ signs and is starting to put two signs together such as " more cheese " . He wasn't crazy about the videos at the beginning but now he asks to watch them by making the sign for " signing " in front of the TV. We have purchased 5 of the 6 DVDs at this point and hope they hurry up and make more. One of the best things about teaching Colby sign language was to shut up all the " know -it- alls " who said he would talk when he had something to say. Colby has PLENTY to say... he just didn't have the means to say it verbally. It has also cut down on his frustrations when he can use a sign to tell us what he wants. You will love this mailing list.... you will learn so much and will feel " empowered " rather than helpless as you join the rest of us on this journey to giving your child the gift of speech...something so many take for granted... Best wishes to you and your son, Noelle Mommy to 20 mos. Colby...still without an official diagnosis... jacart2 <smoffat@...> wrote: Hi, My name is Stacey Moffat and I live in Kitchener, Ontario, Canada. My son is almost 22 months old. He was born with Pierre Robin Sequence and a cleft palate and he is not talking. We've been told that his speech delay is not related to his cleft palate which was repaired just before turned a year old. He had tubes put in his ears at 5 months of age which is a common occurence for children with clefts. makes a few vowel like sounds - mostly just uh, oh, and ah sounds but he has no words. has seen a speech therapist about 5 times in the last four months. We have been trying to get him to do some sign language but he is not interested to say the least. is also delayed in his fine motor skills and he sees an occupational therapist about every three weeks. He is a very happy boy and hasn't shown much frustration but we worry that as he gets older and is not understood he may develop behaviour problems. communicates by making grunting noises, using facial expressions and by using his eyes (looks at what he wants, looks toward something when asked eg. " where's the light? " ). He just started to point at things but his pointing is very random and sometimes meaningless. He also just started a bit of imitation but not of any signs that we are working on (more, drink). It is very frustrating trying to get to sign when he doesn't seem interested in signing at all. We have been working on " more " for months and he still hasn't gotten it. I tried to make a list of the words/phrases that I know that understands and I came up with about 50. I'm not sure what that means for an almost two year old but I do know that 's receptive language is at a higher level than his expressive. I am currently reading the book " The Late Talker " and have found it very informative but in all of my reading (mostly on the internet and in the book) I haven't come across anyone who has said that their child has NO words. Usually parents speak of their child having two or three words. Where do you begin with a child who has no words? What should I expect from the speech therapist? Should we continue to wait until says his first word before becoming too concerned? How long should we wait? My husband and I feel like we should be doing more for but it seems that everyone keeps saying that he is still very young. We are becoming frustrated at having to wait things out but are unsure as to where to go from here. Thank you for listening, S. Moffat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2006 Report Share Posted July 8, 2006 Hi, Check out Dr. Shoemaker's website _www.chronicneurotoxins.com_ (http://www.chronicneurotoxins.com) . You may want to take the VCS test, which is 98% accurate, to see if you have been exposed to toxins. He is in Pocomoke, MD which is long trip for you but certainly closer than some people have traveled to see him. Many people that are MCS have had exposures to mold first.I've been a patient of his for over 2 yrs.and highly recommend him. Feel free to contact me anytime. Sue hello, I'm suffering with MCS and it's getting worse by the day. i need a great doc in my area. Willing to travel. I'm in Ulster County, NY and havent found one to my satisfaction yet. Have any meds worked for you?? thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 Thank you Sue, I so appreciate your prompt reply. My closest friend sees Dr. Shomaker. I was hoping to find someone closer, maybe in manhattan,ny. I have a # to call in New Mexico that gives referrals. Have you ever heard of them?? They make a brochure on MCS. They mentioned a DR. Mazlen in Queens, ny or Long Island?? Ever hear of him?? Also, ever hear of an MSC specialist at NYU medical center?? I did a very dumb thing yesterday, I painted my front steps and feel awful today. And i've been sooo toxic! do you believe one have to detoxify using something or detoxify by just eating right and staying away from toxins. I know i'm asking a lot of questions. thank you so much for your time. I so appreciate someone to talk to. Felice From: ssr3351@... >Date: Sat Jul 08 10:34:17 CDT 2006 > >Subject: Re: [] i'm new to this site > > >Hi, >Check out Dr. Shoemaker's website _www.chronicneurotoxins.com_ >(http://www.chronicneurotoxins.com) . You may want to take the VCS test, which is 98% >accurate, to see if you have been exposed to toxins. He is in Pocomoke, MD which >is long trip for you but certainly closer than some people have traveled to >see him. Many people that are MCS have had exposures to mold first.I've been a >patient of his for over 2 yrs.and highly recommend him. >Feel free to contact me anytime. > >Sue > >hello, >I'm suffering with MCS and it's getting worse by the day. >i need a great doc in my area. Willing to travel. I'm in Ulster >County, NY and havent found one to my satisfaction yet. >Have any meds worked for you?? thanks. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 It all depends on your system. I personally don't believe in getting too isolated or taking glutathione ivs, vitamin c ivs, etc. Some doctors give people massive amounts of things like magnesium by iv and that can be dangerous. I have noticed the people who recover best eat almost normally and not one food at a time on a rotation diet. I found all that ever did was starve my body and make me more sensitive. I know because I have tried everything. By the way, not all conventional medicine is bad. My mcs doctor had to give me an injection of steriods yesterday to stop my asthma and guess what??? I am getting well and the world did not end. We have staved off taking antibiotics hopefully for a few more days. He is also having me take Transfer Factor from 4Life and that made so much difference in life. Leigh felice <anupath14@...> wrote: Thank you Sue, I so appreciate your prompt reply. My closest friend sees Dr. Shomaker. I was hoping to find someone closer, maybe in manhattan,ny. I have a # to call in New Mexico that gives referrals. Have you ever heard of them?? They make a brochure on MCS. They mentioned a DR. Mazlen in Queens, ny or Long Island?? Ever hear of him?? Also, ever hear of an MSC specialist at NYU medical center?? I did a very dumb thing yesterday, I painted my front steps and feel awful today. And i've been sooo toxic! do you believe one have to detoxify using something or detoxify by just eating right and staying away from toxins. I know i'm asking a lot of questions. thank you so much for your time. I so appreciate someone to talk to. Felice From: ssr3351@... >Date: Sat Jul 08 10:34:17 CDT 2006 > >Subject: Re: [] i'm new to this site > > >Hi, >Check out Dr. Shoemaker's website _www.chronicneurotoxins.com_ >(http://www.chronicneurotoxins.com) . You may want to take the VCS test, which is 98% >accurate, to see if you have been exposed to toxins. He is in Pocomoke, MD which >is long trip for you but certainly closer than some people have traveled to >see him. Many people that are MCS have had exposures to mold first.I've been a >patient of his for over 2 yrs.and highly recommend him. >Feel free to contact me anytime. > >Sue > >hello, >I'm suffering with MCS and it's getting worse by the day. >i need a great doc in my area. Willing to travel. I'm in Ulster >County, NY and havent found one to my satisfaction yet. >Have any meds worked for you?? thanks. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 I tried " transfer factor " too........ & it did NOTHING for me, except cost me alot of money. V. Re: [] i'm new to this site > > >Hi, >Check out Dr. Shoemaker's website _www.chronicneurotoxins.com_ >(http://www.chronicneurotoxins.com) . You may want to take the VCS test, which is 98% >accurate, to see if you have been exposed to toxins. He is in Pocomoke, MD which >is long trip for you but certainly closer than some people have traveled to >see him. Many people that are MCS have had exposures to mold first.I've been a >patient of his for over 2 yrs.and highly recommend him. >Feel free to contact me anytime. > >Sue > >hello, >I'm suffering with MCS and it's getting worse by the day. >i need a great doc in my area. Willing to travel. I'm in Ulster >County, NY and havent found one to my satisfaction yet. >Have any meds worked for you?? thanks. > > Quote Link to comment Share on other sites More sharing options...
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