Guest guest Posted August 12, 2006 Report Share Posted August 12, 2006 > My DS, , is not on the spectrum but has an undiagnosed > sydrome. has microcephaly (small head due to a small brain), > ptosis (droopy eyelids), low muscle tone, For muscle tone, try giving amino acids especially carnitine. B12 can also help, along with other B vitamins. >> global developmental > delays, clubfeet, Clubfeet can be related to metal toxicity. >> kidney issues, GERD, feeding issues, milk allergy, GERD can be related to food intolerance, and not just milk. Enzymes can help with this. > nonverbal but know a dozen signs, severe constipation, Constipation ideas http://www.danasview.net/constip.htm >> global > apraxia, Cod liver oil helps a lot of kids with this. >>petit mal siezures, very social (too social...he puts his > arms out for strangers to hold him), cannot play on his own and > demands constant attention. All these issues except seizures, describe my #4. These are ADHD issues. My #4 required anti-virals to help with these issues, altho other ADHD kids need other things. Phenol intolerance is a big one http://www.danasview.net/phenol.htm > I have looked into seeing a DAN doctor because is nonverbal > and I'm interested in the B12 shots. You can use oral/sublingual mB12, that is what I used for my kids, and no doctor is required. On this page I wrote the other things my son needed for language http://www.danasview.net/issues.htm > I'm concerned about being on Mirilax to keep him regular. If > we even miss one dose of Mirilax, he won't have a BM for at least 3 > days which affects his appetite (which is another huge issue). I > have recently read some scary articles about Mirilax and want him > off of it. Here is the info I have http://www.danasview.net/miralax.htm Try the ideas from my constipation page, see if any of those help. For my kids, magnesium was the key. >>He still gets a good portion of his > calories and nutrition from drinking Stage 2 formula from a bottle > (we have no idea how to stop the bottle). Gradually dilute it more and more, so he is not getting as many calories from the bottle. And if it is milk or soy in the bottle, add a sprinkle of AFP Peptizyde, see if that helps http://www.houstonni.com/ Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2006 Report Share Posted August 12, 2006 Hi there, Your son seems to have a great deal of issues and is would be tough to figure out where to start. I am just getting into enzymes and cant offer advice ther, but I think that your son might be greatly helped by chiropractic and/or osteopathy or cranial sacral therapy. My son has been seeing a chiropractor for several months. Initially it was twice weekly and then once weekly and now every other week. He has had really positive effects in his gross and fine motor skills, sensory issues have improved and bilateral issues are almost gone. For example he could not us scissors to cut or blow bubbles nor could he jump with two feet at the same time. Now he can do all of these things and they all came about during his chiropractic treatment automatically. My nephew is seeing an ostepath for his muscle problems in his eyes (they cross) and it is improving tremendously. Apparently they see him every other week or even once a month so it is not that intense. This is adjusting the shape of his facial structure. Its really neat to see the results. Just something to consider mainly for your son's pallette and foot issues. Good luck and progress can be made you just have to look around every corner. Elaine --------------------------------- How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 ....My lastest interest is in exploring the differnces between probiotics > to help people (and myself) understand the differnces between common > everyday probiotics... Ed, A hearty welcome. You may also wish to join theMirobial Nutrition list: nutrition/ B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 Hi, Ed! Have you read Sandor Katz's " Wild Fermentation " ? I LOVE that book! Also " Sacred and Herbal Healing Beers " which is about as much about herbs as beers. I believe kimchi according to the directions in " Wild Fermentation " cured my candida in short order. Pictures of ferments is a wonderful idea! Some get scary looking but still taste good! It makes me wish I'd taken a picture of my wild plum t'ej while it was still bubbling like crazy. > > Hi, please allow me to introduce myself. I am Ed Kasper LAc. Licensed > Acupuncturist & Herbalist in Santa Cruz, CA. I focus on probiotics > both as a treatment for restoring health as well as a prevenative. > And especially as a source for people to regain control of their own > health destiny. > > My lastest interest is in exploring the differnces between probiotics > to help people (and myself) understand the differnces between common > everyday probiotics. Within the lacto-ferment and acetic acid > ferments there are severl overlaps. Even difficulties for home > fermentors to realize the differnce. For example between Kefir, Water > Kefir, Japanese Water Crystals, Tibicos, Ginegr Beer Plant and > kombucha. > > Besides an active dialogue on these, I am looking for pictures of > ferments along with comments, of any probiotic ferment - the good, > the bad and the ugly. > > I appreciate all your help and wisdom and looking forward to a > healthy relationship. > > Ed Kasper LAc. Licensed Acupuncturist & Herbalist > Acupuncture is a jab well done > www.HappyHerbalist.com Santa Cruz, CA. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 Thanks to all for the warm welcome. Books are a great source and I have quite a few. But the internet adds value and IMO enable many more to take part. With many people having digital cameras even on their cell phones and the ease of sending them as emails can really make fermenting easier and not so frightful. and before one knows everybody be healthy... live free and healthy Ed Kasper L.Ac., Acupuncturist & Medicinal Herbalist http://HappyHerbalist.com ......original message ................... Re: Introduction Posted by: " haecklers " haecklers@... haecklers Sun Sep 3, 2006 3:51 pm (PST) Hi, Ed! Have you read Sandor Katz's " Wild Fermentation " ? I LOVE that book! Also " Sacred and Herbal Healing Beers " which is about as much about herbs as beers. I believe kimchi according to the directions in " Wild Fermentation " cured my candida in short order. Pictures of ferments is a wonderful idea! Some get scary looking but still taste good! It makes me wish I'd taken a picture of my wild plum t'ej while it was still bubbling like crazy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2006 Report Share Posted September 15, 2006 Welcome Sara!! What a wonderful Mommy you are to find a solution for Austin!!! I too had to be persistent w/ my drs to get the right treatment! T tell if there is any facial asymmetry hold your baby up to the mirror and look at his face - if there is any it will be more noticeable this way. Let us know how Monday goes!!! JEN Mommy to 4...and 1 more!!!! Luli - Tort/Plagio - Hanger Band - CA "Luli" www.babiesonline.com/babies/j/jens5th/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2006 Report Share Posted September 15, 2006 Hi Sara, welcome to the group. you seem to know a lot already. i'm glad you've found some help for Austin. My daughter is 8.5 mo and has been in her starband for almost 4 mo. There are lots of moms/babies here who started later & also had great results. From what I know I would recommend the starband over the other 2 you mentioned. I would probably also go with DOC over star if it were closer, but I agree the drive is too much. I think most babies wear starbands from 3-6 mo depending on severity and how fast they grow. If your baby has tort you will probably also need physical therapy. You said it has improved, but I'm not sure if it is gone. I would have him evaluated again by a doctor that is knowledgeable about tort. My daughter didn't have a CT scan, but many do. I think it will just depend if the doctor your seeing has doubts if it is strictly plagio or could also be cranio. they can often tell from the head shape and their experience. good luck to you and Austin. let us know how it goes monday. -christine mom to sydney/ 8.5 mo/ starband 5-31-06 > > Hi, I just wanted to introduce myself and I also have a few > questions. I want to apologize in advance for this being so long, > but I have just been obsessed with getting help for my son and this > board seems like the most knowledgeable and experienced that I have > found so far. > > Our story: > My son is 7 1/2 months old and is finally being evaluated for > plagio. He has flattness on the right side and a " bulge " on the > left. He was born 4 weeks early and always turned his head to the > right so I'm sure the softer skull from being born early had a lot > to do with it. It didn't occur to me until recently but during my > labor with him I pushed for 2 1/2 hours. During this time he > was " stuck " under my pelvic bone and was turned sideways. A few > hours after he was born I moved his hair back and the entire right > side of his head was purple from the birth. I don't know if this > had anything to do with the flattening but I thought it might > somehow be related. > > At about six weeks we noticed the flattening and like so many > stories that I've read our ped told us that it would round out on > its own once he was off his head more. This made sense to me. But > when he got to be about 5 months and it was getting even worse we > started aggressive repo and about a month and a half later it still > had hadn't improved. I then pushed it with her again and she acted > like I was crazy for mentioning a " helmet " and she said she couldn't > figure out why any child would need that. I was absolutely shocked > that she knew nothing about it and felt cheated that we had wasted > those months because I trusted a doctor who wasn't even educated > about plagio. > > At about 6 months I mentioned that he couldn't even turn his head to > the left and his doctor had us start doing some neck stretching > exercises and the condition improved almost immediately. Even > though she never really diagnosed him with torticollis or even > mentioned the term for that matter I now know that's what it was. > > Anyway, I then started non stop research so that I could figure out > what needed to be done myself. I still wasn't sure whether he > needed a helmet or not because it wasn't obvious to other people > unless I had pointed it out and he doesn't have any facial assymetry > (as far as I can tell) other than slight ear misalignment. But when > I came across a group " untreated plagio " and saw pictures of > kids who were 3 years old up to 8 years old whose heads looked just > the same as my son I realized that there was a good chance that it > was not going to correct itself. When I read about how much guilt > and hearbreak they were dealing with because they hadn't done > something when their children were younger I knew that I absolutely > had to demand treatment. > > I finally found a doctor in my area who specializes in this and we > have an appointment with her on Monday (YEAH!). I'm really hoping > that she will just write the prescription and we won't have to waste > anymore time than we already have. I was also so excited to find > out that there is an orthotist in my city who does STARbands. When > I asked about the level of experience the orthotist had with banding > she kind of laughed and said that he had 4 patients right now. I > said " he only has 4 patients with bands " and she said " Oh, no. He > has 4 in the waiting room right now. " So I feel really good about > that. I really wanted my son to have a DOCband or a STARband as to > my knowledge they are the main " active " orthotic devices (correct me > if I'm wrong) and I really think this is what would be most helpful > since we're starting so late. I would have preferred a DOCband > because I've heard only wonderful things about them, but the closest > location to us is 4 hours away and that is just not a trip that is > possible for us to make every 2 weeks especially with a baby. The > other options we have are a Danmar helmet and a Michigan > molding helmet (made by the University of Michigan) and I don't > really know if these would be better than a STARband or if it's the > other way around. > > > Anyway, I'd really appreciate it if you could answer some questions > for me: > > Is there any other work up that should be done (like CT scans, etc.) > before jumping right into the band? > > Can you tell me your experience with STARbands and any advice you > have for me regarding them? > > From your experience are there advantages to the STARband over the > other " helmets? " Which would be most effective? > > Have any of your children started treatment at this age (at least 8 > months before he's in the band) and still gotten good correction? > How long were they in it? > > > Thank you so much in advance for all the help. > > Sara > > Mom to Austin with plagio, born 02-03-06 (4 weeks early), hopefully > in a STARband within the next few weeks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2006 Report Share Posted September 16, 2006 Hello and welcome. It certainly sounds like you have done a good amount of research and you got the ball rolling, which is great! Good for you for being so proactive! My Daughter wore a Hanger Band (which is very similar to the STARband in the design and how it works). The real key to getting good correction is an experienced Orthotist, which it sounds like you have found. As long as the Orthotist has experience, the STARband is a great product and will work just as well as any other " active " band out there. There have been MANY babies out there who started their bands around 8 or 9 months (many even later than that) and they still got great correction. My Daughter got her band at 7mo, 1wk and only wore it for 11 weeks. You may also want to check out all the before and after pics in the photos section. As far as a CT scan, some Doctors do require a CT scan and/or x-rays be done before they will prescribe a band. Not all do this though. The Drs that do order a CT do it so that they can rule out craniosynostosis (premature fusing of the skull bones) before they put a baby in a band, as a band would not help a baby with cranio. My Daughter had a CT scan at 6 months and it was no big deal.... quick and easy. Good luck with the appt and with getting the band. Keep us updated. Jen (25.5 mo), tort resolved, Hanger Band Grad (4.5 years) > > Hi, I just wanted to introduce myself and I also have a few > questions. I want to apologize in advance for this being so long, > but I have just been obsessed with getting help for my son and this > board seems like the most knowledgeable and experienced that I have > found so far. > > Our story: > My son is 7 1/2 months old and is finally being evaluated for > plagio. He has flattness on the right side and a " bulge " on the > left. He was born 4 weeks early and always turned his head to the > right so I'm sure the softer skull from being born early had a lot > to do with it. It didn't occur to me until recently but during my > labor with him I pushed for 2 1/2 hours. During this time he > was " stuck " under my pelvic bone and was turned sideways. A few > hours after he was born I moved his hair back and the entire right > side of his head was purple from the birth. I don't know if this > had anything to do with the flattening but I thought it might > somehow be related. > > At about six weeks we noticed the flattening and like so many > stories that I've read our ped told us that it would round out on > its own once he was off his head more. This made sense to me. But > when he got to be about 5 months and it was getting even worse we > started aggressive repo and about a month and a half later it still > had hadn't improved. I then pushed it with her again and she acted > like I was crazy for mentioning a " helmet " and she said she couldn't > figure out why any child would need that. I was absolutely shocked > that she knew nothing about it and felt cheated that we had wasted > those months because I trusted a doctor who wasn't even educated > about plagio. > > At about 6 months I mentioned that he couldn't even turn his head to > the left and his doctor had us start doing some neck stretching > exercises and the condition improved almost immediately. Even > though she never really diagnosed him with torticollis or even > mentioned the term for that matter I now know that's what it was. > > Anyway, I then started non stop research so that I could figure out > what needed to be done myself. I still wasn't sure whether he > needed a helmet or not because it wasn't obvious to other people > unless I had pointed it out and he doesn't have any facial assymetry > (as far as I can tell) other than slight ear misalignment. But when > I came across a group " untreated plagio " and saw pictures of > kids who were 3 years old up to 8 years old whose heads looked just > the same as my son I realized that there was a good chance that it > was not going to correct itself. When I read about how much guilt > and hearbreak they were dealing with because they hadn't done > something when their children were younger I knew that I absolutely > had to demand treatment. > > I finally found a doctor in my area who specializes in this and we > have an appointment with her on Monday (YEAH!). I'm really hoping > that she will just write the prescription and we won't have to waste > anymore time than we already have. I was also so excited to find > out that there is an orthotist in my city who does STARbands. When > I asked about the level of experience the orthotist had with banding > she kind of laughed and said that he had 4 patients right now. I > said " he only has 4 patients with bands " and she said " Oh, no. He > has 4 in the waiting room right now. " So I feel really good about > that. I really wanted my son to have a DOCband or a STARband as to > my knowledge they are the main " active " orthotic devices (correct me > if I'm wrong) and I really think this is what would be most helpful > since we're starting so late. I would have preferred a DOCband > because I've heard only wonderful things about them, but the closest > location to us is 4 hours away and that is just not a trip that is > possible for us to make every 2 weeks especially with a baby. The > other options we have are a Danmar helmet and a Michigan > molding helmet (made by the University of Michigan) and I don't > really know if these would be better than a STARband or if it's the > other way around. > > > Anyway, I'd really appreciate it if you could answer some questions > for me: > > Is there any other work up that should be done (like CT scans, etc.) > before jumping right into the band? > > Can you tell me your experience with STARbands and any advice you > have for me regarding them? > > From your experience are there advantages to the STARband over the > other " helmets? " Which would be most effective? > > Have any of your children started treatment at this age (at least 8 > months before he's in the band) and still gotten good correction? > How long were they in it? > > > Thank you so much in advance for all the help. > > Sara > > Mom to Austin with plagio, born 02-03-06 (4 weeks early), hopefully > in a STARband within the next few weeks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2006 Report Share Posted September 17, 2006 Cheryl, Welcome to the group... it¹s always good to have another mind on board! I think you¹ll find great support here, and I¹m sure you¹ll have a lot to contribute as well. Caroline From: Cheryl Lowrance <c.lowrance@...> Reply-< > Date: Fri, 15 Sep 2006 19:53:16 -0700 < > Subject: Introduction I just wanted to take the time to introduce myself. My name is Cheryl and my son is Gryffin and he will be 3 in October. I have just sent his medical records to Dr. G and I'm awaiting an appointment. We live in Santa Clarita, CA. I have been lurking here for about a month and I've already learned a lot about the protocol from the list. I've been researching since we started EI and I have found that Dr. G seems to fit my ideas much better than any other. I obviously won't know how much until I see him but I'm hopeful that we will see some great things happen. My son is fortunate in that he is not very severe and I, personally, question whether he is autistic at all. He has made tremendous gains in the 5 or 6 months he's been in EI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 You are so fortunate to have found out about Dr Goldberg when your son is so young, and lucky you live so close! > > I just wanted to take the time to introduce myself. My name is > Cheryl and my son is Gryffin and he will be 3 in October. I have > just sent his medical records to Dr. G and I'm awaiting an > appointment. We live in Santa Clarita, CA. I have been lurking here > for about a month and I've already learned a lot about the > protocol from the list. > > I've been researching since we started EI and I have found that Dr. G > seems to fit my ideas much better than any other. I obviously won't > know how much until I see him but I'm hopeful that we will see some > great things happen. My son is fortunate in that he is not very > severe and I, personally, question whether he is autistic at all. He > has made tremendous gains in the 5 or 6 months he's been in EI. > > > Cheryl Lowrance (c.lowrance@...) > Mom to Gryffin10/9/03 and Tynan 10/27/05 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2006 Report Share Posted September 20, 2006 Welcome Karyn! You are in the right place! My daughter , 3, was suspected at 29 months and diagnosed at 31 months. She has made INCREDIBLE progress in 14 months, going from having a vocabulary of 5 words to speaking in 4 word sentences and having a vocabulary of about 600+ words (I've stopped counting, actually). You'llfind great discussion and a lot of knowledgable people around these parts :-) Warm regards, ****************** (Rochester, NY) Mom to , 3.4 years, Verbal Apraxia & , 1.2 years (and babbling away!) ________________________________ From: [mailto: ] On Behalf Of kvanryzin Sent: Wednesday, September 20, 2006 12:35 PM Subject: [ ] introduction I have recently subscribed to this list and just wanted to introduce myself. My name is Karyn, wife to Ken and mom to three boys and due to have a baby girl in Oct. We live in Wisconsin. Our oldest son, is 17 years old. He has down syndrome in addition to numerous other issues including PDD, apraxia and Sensory integration issues. He is adopted and came to us when he was 8 years old. Next is , 5, he is pretty typical now but as an infant he had feeding issues and had speech therapy from 3 months to 9 months of age. He was a late talker which didn't surprise us and just in the last year or so has caught up with his peers in speech. He just started Kindergarten this month. r is 2 years, 5 months old. His lack of speech caught me by surprise. When he was almost 2 I realized that he was quite silent (other than stomp his foot and yell " ah " )and the few words he had weren't developing and he wasn't using speech to communicate. He is now receiving EI services for an hour every other week. We taught him sign lang and have worked hard on speaking. He is doing much better. He now has consonant-vowel approximations for words and he is labeling things in his environment with word approximations. Apraxia has been suggested as an issue by his SLP but we both agree it is too early with him to know. As a parent it is very interesting to have seen speech issues from different angles with each of our children. is still quite difficult for strangers and acquaintances to understand and I have grown used to being his interpreter. 's issues were more oral motor and feeding which really resolved by one year and the rest we monitored. And now r who wouldn't say anything and avoided attempts if pushed. Anyway, I look forward to asking questions and sharing ideas. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2006 Report Share Posted September 20, 2006 Thanks . r has made great progress already. I am trying to prepare myself for the transition to the school district when he turns three. I am unsure of what tests the district will want to do and how to make sure that he isn't excluded from services since he is fine with receptive language. Just has problems with expressive. Thanks for the welcome. Karyn > > Welcome Karyn! > > You are in the right place! My daughter , 3, was suspected at 29 > months and diagnosed at 31 months. She has made INCREDIBLE progress in > 14 months, going from having a vocabulary of 5 words to speaking in 4 > word sentences and having a vocabulary of about 600+ words (I've stopped > counting, actually). You'llfind great discussion and a lot of > knowledgable people around these parts :-) > > Warm regards, > ****************** > (Rochester, NY) > Mom to , 3.4 years, Verbal Apraxia > & , 1.2 years (and babbling away!) > > > ________________________________ > > From: > [mailto: ] On Behalf Of kvanryzin > Sent: Wednesday, September 20, 2006 12:35 PM > > Subject: [ ] introduction > > > > I have recently subscribed to this list and just wanted to introduce > myself. My name is Karyn, wife to Ken and mom to three boys and due > to have a baby girl in Oct. We live in Wisconsin. > Our oldest son, is 17 years old. He has down syndrome in > addition to numerous other issues including PDD, apraxia and Sensory > integration issues. He is adopted and came to us when he was 8 years > old. > Next is , 5, he is pretty typical now but as an infant he had > feeding issues and had speech therapy from 3 months to 9 months of > age. He was a late talker which didn't surprise us and just in the > last year or so has caught up with his peers in speech. He just > started Kindergarten this month. > r is 2 years, 5 months old. His lack of speech caught me by > surprise. When he was almost 2 I realized that he was quite silent > (other than stomp his foot and yell " ah " )and the few words he had > weren't developing and he wasn't using speech to communicate. He is > now receiving EI services for an hour every other week. We taught him > sign lang and have worked hard on speaking. He is doing much better. > He now has consonant-vowel approximations for words and he is > labeling things in his environment with word approximations. Apraxia > has been suggested as an issue by his SLP but we both agree it is too > early with him to know. > As a parent it is very interesting to have seen speech issues from > different angles with each of our children. is still quite > difficult for strangers and acquaintances to understand and I have > grown used to being his interpreter. 's issues were more oral > motor and feeding which really resolved by one year and the rest we > monitored. And now r who wouldn't say anything and avoided > attempts if pushed. > Anyway, I look forward to asking questions and sharing ideas. > > Karyn > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Welcome Karyn! You are in the right place! My daughter , 3, was suspected at 29 months and diagnosed at 31 months. She has made INCREDIBLE progress in 14 months, going from having a vocabulary of 5 words to speaking in 4 word sentences and having a vocabulary of about 600+ words (I've stopped counting, actually). You'llfind great discussion and a lot of knowledgable people around these parts :-) Warm regards, ****************** (Rochester, NY) Mom to , 3.4 years, Verbal Apraxia & , 1.2 years (and babbling away!) ________________________________ From: [mailto: ] On Behalf Of kvanryzin Sent: Wednesday, September 20, 2006 12:35 PM Subject: [ ] introduction I have recently subscribed to this list and just wanted to introduce myself. My name is Karyn, wife to Ken and mom to three boys and due to have a baby girl in Oct. We live in Wisconsin. Our oldest son, is 17 years old. He has down syndrome in addition to numerous other issues including PDD, apraxia and Sensory integration issues. He is adopted and came to us when he was 8 years old. Next is , 5, he is pretty typical now but as an infant he had feeding issues and had speech therapy from 3 months to 9 months of age. He was a late talker which didn't surprise us and just in the last year or so has caught up with his peers in speech. He just started Kindergarten this month. r is 2 years, 5 months old. His lack of speech caught me by surprise. When he was almost 2 I realized that he was quite silent (other than stomp his foot and yell " ah " )and the few words he had weren't developing and he wasn't using speech to communicate. He is now receiving EI services for an hour every other week. We taught him sign lang and have worked hard on speaking. He is doing much better. He now has consonant-vowel approximations for words and he is labeling things in his environment with word approximations. Apraxia has been suggested as an issue by his SLP but we both agree it is too early with him to know. As a parent it is very interesting to have seen speech issues from different angles with each of our children. is still quite difficult for strangers and acquaintances to understand and I have grown used to being his interpreter. 's issues were more oral motor and feeding which really resolved by one year and the rest we monitored. And now r who wouldn't say anything and avoided attempts if pushed. Anyway, I look forward to asking questions and sharing ideas. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Thanks . r has made great progress already. I am trying to prepare myself for the transition to the school district when he turns three. I am unsure of what tests the district will want to do and how to make sure that he isn't excluded from services since he is fine with receptive language. Just has problems with expressive. Thanks for the welcome. Karyn > > Welcome Karyn! > > You are in the right place! My daughter , 3, was suspected at 29 > months and diagnosed at 31 months. She has made INCREDIBLE progress in > 14 months, going from having a vocabulary of 5 words to speaking in 4 > word sentences and having a vocabulary of about 600+ words (I've stopped > counting, actually). You'llfind great discussion and a lot of > knowledgable people around these parts :-) > > Warm regards, > ****************** > (Rochester, NY) > Mom to , 3.4 years, Verbal Apraxia > & , 1.2 years (and babbling away!) > > > ________________________________ > > From: > [mailto: ] On Behalf Of kvanryzin > Sent: Wednesday, September 20, 2006 12:35 PM > > Subject: [ ] introduction > > > > I have recently subscribed to this list and just wanted to introduce > myself. My name is Karyn, wife to Ken and mom to three boys and due > to have a baby girl in Oct. We live in Wisconsin. > Our oldest son, is 17 years old. He has down syndrome in > addition to numerous other issues including PDD, apraxia and Sensory > integration issues. He is adopted and came to us when he was 8 years > old. > Next is , 5, he is pretty typical now but as an infant he had > feeding issues and had speech therapy from 3 months to 9 months of > age. He was a late talker which didn't surprise us and just in the > last year or so has caught up with his peers in speech. He just > started Kindergarten this month. > r is 2 years, 5 months old. His lack of speech caught me by > surprise. When he was almost 2 I realized that he was quite silent > (other than stomp his foot and yell " ah " )and the few words he had > weren't developing and he wasn't using speech to communicate. He is > now receiving EI services for an hour every other week. We taught him > sign lang and have worked hard on speaking. He is doing much better. > He now has consonant-vowel approximations for words and he is > labeling things in his environment with word approximations. Apraxia > has been suggested as an issue by his SLP but we both agree it is too > early with him to know. > As a parent it is very interesting to have seen speech issues from > different angles with each of our children. is still quite > difficult for strangers and acquaintances to understand and I have > grown used to being his interpreter. 's issues were more oral > motor and feeding which really resolved by one year and the rest we > monitored. And now r who wouldn't say anything and avoided > attempts if pushed. > Anyway, I look forward to asking questions and sharing ideas. > > Karyn > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Karyn- We just went through that very same transition a few weeks ago. is very age approrpriate receptively as well. Most apraxics are. You don't need to have delays in both areas to qualify. has continued with 4 x 30 speech (1:1) weekly and 2 x 30 OT (1:1) weekly. Warm regards, ****************** (Rochester, NY) Mom to , 3.4 years, Verbal Apraxia & , 1.2 years (and babbling away!) ________________________________ From: [mailto: ] On Behalf Of kvanryzin Sent: Wednesday, September 20, 2006 10:09 PM Subject: [ ] Re: introduction Thanks . r has made great progress already. I am trying to prepare myself for the transition to the school district when he turns three. I am unsure of what tests the district will want to do and how to make sure that he isn't excluded from services since he is fine with receptive language. Just has problems with expressive. Thanks for the welcome. Karyn > > Welcome Karyn! > > You are in the right place! My daughter , 3, was suspected at 29 > months and diagnosed at 31 months. She has made INCREDIBLE progress in > 14 months, going from having a vocabulary of 5 words to speaking in 4 > word sentences and having a vocabulary of about 600+ words (I've stopped > counting, actually). You'llfind great discussion and a lot of > knowledgable people around these parts :-) > > Warm regards, > ****************** > (Rochester, NY) > Mom to , 3.4 years, Verbal Apraxia > & , 1.2 years (and babbling away!) > > > ________________________________ > > From: <mailto: %40> > [mailto: <mailto: %40> ] On Behalf Of kvanryzin > Sent: Wednesday, September 20, 2006 12:35 PM > <mailto: %40> > Subject: [ ] introduction > > > > I have recently subscribed to this list and just wanted to introduce > myself. My name is Karyn, wife to Ken and mom to three boys and due > to have a baby girl in Oct. We live in Wisconsin. > Our oldest son, is 17 years old. He has down syndrome in > addition to numerous other issues including PDD, apraxia and Sensory > integration issues. He is adopted and came to us when he was 8 years > old. > Next is , 5, he is pretty typical now but as an infant he had > feeding issues and had speech therapy from 3 months to 9 months of > age. He was a late talker which didn't surprise us and just in the > last year or so has caught up with his peers in speech. He just > started Kindergarten this month. > r is 2 years, 5 months old. His lack of speech caught me by > surprise. When he was almost 2 I realized that he was quite silent > (other than stomp his foot and yell " ah " )and the few words he had > weren't developing and he wasn't using speech to communicate. He is > now receiving EI services for an hour every other week. We taught him > sign lang and have worked hard on speaking. He is doing much better. > He now has consonant-vowel approximations for words and he is > labeling things in his environment with word approximations. Apraxia > has been suggested as an issue by his SLP but we both agree it is too > early with him to know. > As a parent it is very interesting to have seen speech issues from > different angles with each of our children. is still quite > difficult for strangers and acquaintances to understand and I have > grown used to being his interpreter. 's issues were more oral > motor and feeding which really resolved by one year and the rest we > monitored. And now r who wouldn't say anything and avoided > attempts if pushed. > Anyway, I look forward to asking questions and sharing ideas. > > Karyn > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Karyn- We just went through that very same transition a few weeks ago. is very age approrpriate receptively as well. Most apraxics are. You don't need to have delays in both areas to qualify. has continued with 4 x 30 speech (1:1) weekly and 2 x 30 OT (1:1) weekly. Warm regards, ****************** (Rochester, NY) Mom to , 3.4 years, Verbal Apraxia & , 1.2 years (and babbling away!) ________________________________ From: [mailto: ] On Behalf Of kvanryzin Sent: Wednesday, September 20, 2006 10:09 PM Subject: [ ] Re: introduction Thanks . r has made great progress already. I am trying to prepare myself for the transition to the school district when he turns three. I am unsure of what tests the district will want to do and how to make sure that he isn't excluded from services since he is fine with receptive language. Just has problems with expressive. Thanks for the welcome. Karyn > > Welcome Karyn! > > You are in the right place! My daughter , 3, was suspected at 29 > months and diagnosed at 31 months. She has made INCREDIBLE progress in > 14 months, going from having a vocabulary of 5 words to speaking in 4 > word sentences and having a vocabulary of about 600+ words (I've stopped > counting, actually). You'llfind great discussion and a lot of > knowledgable people around these parts :-) > > Warm regards, > ****************** > (Rochester, NY) > Mom to , 3.4 years, Verbal Apraxia > & , 1.2 years (and babbling away!) > > > ________________________________ > > From: <mailto: %40> > [mailto: <mailto: %40> ] On Behalf Of kvanryzin > Sent: Wednesday, September 20, 2006 12:35 PM > <mailto: %40> > Subject: [ ] introduction > > > > I have recently subscribed to this list and just wanted to introduce > myself. My name is Karyn, wife to Ken and mom to three boys and due > to have a baby girl in Oct. We live in Wisconsin. > Our oldest son, is 17 years old. He has down syndrome in > addition to numerous other issues including PDD, apraxia and Sensory > integration issues. He is adopted and came to us when he was 8 years > old. > Next is , 5, he is pretty typical now but as an infant he had > feeding issues and had speech therapy from 3 months to 9 months of > age. He was a late talker which didn't surprise us and just in the > last year or so has caught up with his peers in speech. He just > started Kindergarten this month. > r is 2 years, 5 months old. His lack of speech caught me by > surprise. When he was almost 2 I realized that he was quite silent > (other than stomp his foot and yell " ah " )and the few words he had > weren't developing and he wasn't using speech to communicate. He is > now receiving EI services for an hour every other week. We taught him > sign lang and have worked hard on speaking. He is doing much better. > He now has consonant-vowel approximations for words and he is > labeling things in his environment with word approximations. Apraxia > has been suggested as an issue by his SLP but we both agree it is too > early with him to know. > As a parent it is very interesting to have seen speech issues from > different angles with each of our children. is still quite > difficult for strangers and acquaintances to understand and I have > grown used to being his interpreter. 's issues were more oral > motor and feeding which really resolved by one year and the rest we > monitored. And now r who wouldn't say anything and avoided > attempts if pushed. > Anyway, I look forward to asking questions and sharing ideas. > > Karyn > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Mine also has age-appropriate receptive language and a delay with expressive. > > > > Welcome Karyn! > > > > You are in the right place! My daughter , 3, was suspected > at 29 > > months and diagnosed at 31 months. She has made INCREDIBLE > progress in > > 14 months, going from having a vocabulary of 5 words to speaking > in 4 > > word sentences and having a vocabulary of about 600+ words (I've > stopped > > counting, actually). You'llfind great discussion and a lot of > > knowledgable people around these parts :-) > > > > Warm regards, > > ****************** > > (Rochester, NY) > > Mom to , 3.4 years, Verbal Apraxia > > & , 1.2 years (and babbling away!) > > > > > > ________________________________ > > > > From: > <mailto: %40> > > [mailto: > <mailto: %40> ] On Behalf Of kvanryzin > > Sent: Wednesday, September 20, 2006 12:35 PM > > > <mailto: %40> > > Subject: [ ] introduction > > > > > > > > I have recently subscribed to this list and just wanted to > introduce > > myself. My name is Karyn, wife to Ken and mom to three boys and due > > to have a baby girl in Oct. We live in Wisconsin. > > Our oldest son, is 17 years old. He has down syndrome in > > addition to numerous other issues including PDD, apraxia and > Sensory > > integration issues. He is adopted and came to us when he was 8 > years > > old. > > Next is , 5, he is pretty typical now but as an infant he had > > feeding issues and had speech therapy from 3 months to 9 months of > > age. He was a late talker which didn't surprise us and just in the > > last year or so has caught up with his peers in speech. He just > > started Kindergarten this month. > > r is 2 years, 5 months old. His lack of speech caught me by > > surprise. When he was almost 2 I realized that he was quite silent > > (other than stomp his foot and yell " ah " )and the few words he had > > weren't developing and he wasn't using speech to communicate. He is > > now receiving EI services for an hour every other week. We taught > him > > sign lang and have worked hard on speaking. He is doing much > better. > > He now has consonant-vowel approximations for words and he is > > labeling things in his environment with word approximations. > Apraxia > > has been suggested as an issue by his SLP but we both agree it is > too > > early with him to know. > > As a parent it is very interesting to have seen speech issues from > > different angles with each of our children. is still quite > > difficult for strangers and acquaintances to understand and I have > > grown used to being his interpreter. 's issues were more oral > > motor and feeding which really resolved by one year and the rest we > > monitored. And now r who wouldn't say anything and avoided > > attempts if pushed. > > Anyway, I look forward to asking questions and sharing ideas. > > > > Karyn > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 Mine also has age-appropriate receptive language and a delay with expressive. > > > > Welcome Karyn! > > > > You are in the right place! My daughter , 3, was suspected > at 29 > > months and diagnosed at 31 months. She has made INCREDIBLE > progress in > > 14 months, going from having a vocabulary of 5 words to speaking > in 4 > > word sentences and having a vocabulary of about 600+ words (I've > stopped > > counting, actually). You'llfind great discussion and a lot of > > knowledgable people around these parts :-) > > > > Warm regards, > > ****************** > > (Rochester, NY) > > Mom to , 3.4 years, Verbal Apraxia > > & , 1.2 years (and babbling away!) > > > > > > ________________________________ > > > > From: > <mailto: %40> > > [mailto: > <mailto: %40> ] On Behalf Of kvanryzin > > Sent: Wednesday, September 20, 2006 12:35 PM > > > <mailto: %40> > > Subject: [ ] introduction > > > > > > > > I have recently subscribed to this list and just wanted to > introduce > > myself. My name is Karyn, wife to Ken and mom to three boys and due > > to have a baby girl in Oct. We live in Wisconsin. > > Our oldest son, is 17 years old. He has down syndrome in > > addition to numerous other issues including PDD, apraxia and > Sensory > > integration issues. He is adopted and came to us when he was 8 > years > > old. > > Next is , 5, he is pretty typical now but as an infant he had > > feeding issues and had speech therapy from 3 months to 9 months of > > age. He was a late talker which didn't surprise us and just in the > > last year or so has caught up with his peers in speech. He just > > started Kindergarten this month. > > r is 2 years, 5 months old. His lack of speech caught me by > > surprise. When he was almost 2 I realized that he was quite silent > > (other than stomp his foot and yell " ah " )and the few words he had > > weren't developing and he wasn't using speech to communicate. He is > > now receiving EI services for an hour every other week. We taught > him > > sign lang and have worked hard on speaking. He is doing much > better. > > He now has consonant-vowel approximations for words and he is > > labeling things in his environment with word approximations. > Apraxia > > has been suggested as an issue by his SLP but we both agree it is > too > > early with him to know. > > As a parent it is very interesting to have seen speech issues from > > different angles with each of our children. is still quite > > difficult for strangers and acquaintances to understand and I have > > grown used to being his interpreter. 's issues were more oral > > motor and feeding which really resolved by one year and the rest we > > monitored. And now r who wouldn't say anything and avoided > > attempts if pushed. > > Anyway, I look forward to asking questions and sharing ideas. > > > > Karyn > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 Hi my name is and mu DH is . We have a 7 year old with speech dyspraxia and would like any good advice we can get. She has speech at school (but not really trained in dyspraxia ) and a private speech therapist she sees once a week.What else can we do to help her? She say's less than 20 words and so want to help her out. Thank you L. R. PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Hi my name is and mu DH is . We have a 7 year old with speech dyspraxia and would like any good advice we can get. She has speech at school (but not really trained in dyspraxia ) and a private speech therapist she sees once a week.What else can we do to help her? She say's less than 20 words and so want to help her out. Thank you L. R. PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Hi I'm just wondering if you are in Australia as you use the name 'dyspraxia' rather than 'apraxia'? I have little information for you as I am very new to this myself (my almost 3yo son has only just been diagnosed with verbal dyspraxia) but I have found these posts very helpfull. I have started my son on the Omega's and Vitamin E as discussed here and have had a little bit of improvement so far so I intend to continue with them as from what I read, they cannot hurt to try. I have also put my eldest son (6 with no dyspraxia) on the Omegas & E and have found it has improved his reading and writing dramatically. It may be worth your reading through previous posts to decide if you want to go this way too. Although we have not started yet, I am told that my son will require intense speech therapy (3-4 sessions a week) with a specialised " Dyspraxia " therapist. Is your private therapist trained in this area as this is quite important? Are you able to increase your sessions perhaps? Sorry I'm not much help to you but I'm sure someone else here will be - keep reading the posts as they can be quite helpful and if you have any questions, I'd be pleased to try and help! Katrina Re: [ ] Introduction Hi my name is and mu DH is . We have a 7 year old with speech dyspraxia and would like any good advice we can get. She has speech at school (but not really trained in dyspraxia ) and a private speech therapist she sees once a week.What else can we do to help her? She say's less than 20 words and so want to help her out. Thank you L. R. PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Hi I'm just wondering if you are in Australia as you use the name 'dyspraxia' rather than 'apraxia'? I have little information for you as I am very new to this myself (my almost 3yo son has only just been diagnosed with verbal dyspraxia) but I have found these posts very helpfull. I have started my son on the Omega's and Vitamin E as discussed here and have had a little bit of improvement so far so I intend to continue with them as from what I read, they cannot hurt to try. I have also put my eldest son (6 with no dyspraxia) on the Omegas & E and have found it has improved his reading and writing dramatically. It may be worth your reading through previous posts to decide if you want to go this way too. Although we have not started yet, I am told that my son will require intense speech therapy (3-4 sessions a week) with a specialised " Dyspraxia " therapist. Is your private therapist trained in this area as this is quite important? Are you able to increase your sessions perhaps? Sorry I'm not much help to you but I'm sure someone else here will be - keep reading the posts as they can be quite helpful and if you have any questions, I'd be pleased to try and help! Katrina Re: [ ] Introduction Hi my name is and mu DH is . We have a 7 year old with speech dyspraxia and would like any good advice we can get. She has speech at school (but not really trained in dyspraxia ) and a private speech therapist she sees once a week.What else can we do to help her? She say's less than 20 words and so want to help her out. Thank you L. R. PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Welcome! I would suggest getting started by reading " The Late Talker " book. It's filled with a lot of great information. You may also want to do a search in the archives about Vitamin E, which many of us have just started and also " ProEfa " by Nordic Naturals. In case you haven't heard of it it's fish oil combination of Omega 3, 6, 9. Supplements are really helping these kids and there's a wealth of knowledge on this list about which ones to try, what doses, etc. They haven't helped all kids on the list but I would say a very large number. There's also good information in the archives about making sure your speech therapist knows how to treat apraxia. Ours used " PROMPT " and " Kaufman " methods.. It's really important to have someone who knows how to work with apraxia. Hopefully these are some helpful suggestions, Amy D Re: [ ] Introduction Hi my name is and mu DH is . We have a 7 year old with speech dyspraxia and would like any good advice we can get. She has speech at school (but not really trained in dyspraxia ) and a private speech therapist she sees once a week.What else can we do to help her? She say's less than 20 words and so want to help her out. Thank you L. R. PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2006 Report Share Posted October 18, 2006 Welcome! I would suggest getting started by reading " The Late Talker " book. It's filled with a lot of great information. You may also want to do a search in the archives about Vitamin E, which many of us have just started and also " ProEfa " by Nordic Naturals. In case you haven't heard of it it's fish oil combination of Omega 3, 6, 9. Supplements are really helping these kids and there's a wealth of knowledge on this list about which ones to try, what doses, etc. They haven't helped all kids on the list but I would say a very large number. There's also good information in the archives about making sure your speech therapist knows how to treat apraxia. Ours used " PROMPT " and " Kaufman " methods.. It's really important to have someone who knows how to work with apraxia. Hopefully these are some helpful suggestions, Amy D Re: [ ] Introduction Hi my name is and mu DH is . We have a 7 year old with speech dyspraxia and would like any good advice we can get. She has speech at school (but not really trained in dyspraxia ) and a private speech therapist she sees once a week.What else can we do to help her? She say's less than 20 words and so want to help her out. Thank you L. R. PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2006 Report Share Posted October 18, 2006 Go to this site and call these people and they can tell you where you closest AS place is and what you will need. They are wonderful! Now they are local for us, but Ithey can tell you what is near for you. http://www.mitchells-place.com Take Care, Josie -- ( ) Introduction Hi, I have been reading posts for about a week now and you all have already helped me. I have a 5 year old son . We had him evaluated last fall by Regional Center for AS and they said no he is fine and sent us on our way. Of course we knew he wasn't fine but most of his behavior only became obvious at home not school. He has been on Abilify for over a year because of violent meltdowns. This fall he started K and things are not going well at all. He has been sent home several times already and we have barely made it through the first month of school. He is in private school though so Regional Center doesn't want anything to do with him. We want to have him evaluated by someone else because we really feel he is AS plus it runs heavily in dh's family. DS has two cousins diagnosed with AS plus numerous undiagnosed relatives. We found out that a Neuropsyche eval. would cost between $2500 and $5000. That is a lot of money plus they told us that more than likely it would not be covered by our insurance. Can anyone tell me if that is a ok price range for an eval.? Did anyone else's insurance cover the eval? Part of me is so convinced he is AS that I think maybe we don't need an eval but then after them saying he wasn't AS last year there is always that doubt in my mind. For awhile I was looking at possibility of Bi-Polar but it doesn't really run in our family and he can be hyper but not really manic I don't think. Any thoughts would be appreciated, Hilery Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.