Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 My daughter had normal development except for speech at that age. It wasn't until she was older that things started to show up. The things that were obvious were motor planning issues. She couldn't do finger plays like other kids her age (patty cake was the first thing she couldn't do). At 5 1/2, she can't do jumping jacks like other kids. She can't clap in a rhytm like other kids. Those are all motor planning activities that did not show up at 18 months. At 18 months, we did know she was at risk for brain damage, but we didn't have that confirmed until she had an MRI at 3. Good luck, Suzi > My daughter is two years old. She began talking at about 16 months, not many > words but a few consistent ones. At 18 months she stopped. Every once in a > while she will say a word but then never says it again. We took her for a > speech evaluation and to a developmental pediatrician, thinking that it may > be apraxia. She had an MRI done which was normal. Both places don't believe > that she has apraxia because her motor skills are right on target. They were > delayed a while back but now she seems to have caught up. They recommended > EIS and private therapy 2-3 times a week. However they cannot explain why > she had speech regression. My question is, does everyone who has apraxia > also have motor skill delays? Has anyone else out there have speech > regression that is not apraxia, seizure disorder or chromosomal disorder? > > Thanks, > > Allie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 Hi Allie. My daughter is also 2.0. She has been dx w/ apraxia, but also has motor planning issues which affect her balance, coordination, fine motor, cognitive, self help, etc. I didn't know that you " had " to have motor issues in addition to speech to be dx w/ apraxia. We have had chromosomes checked (all ok) and will be doing an EEG next week. Then maybe an MRI. You are fortunate to receive private therapy 2-3x/wk, though. We only have 1x/wk and are fighting for more. Traci mom to Kennedy 2.0 and Hunter 4.6 > My daughter is two years old. She began talking at about 16 months, not many > words but a few consistent ones. At 18 months she stopped. Every once in a > while she will say a word but then never says it again. We took her for a > speech evaluation and to a developmental pediatrician, thinking that it may > be apraxia. She had an MRI done which was normal. Both places don't believe > that she has apraxia because her motor skills are right on target. They were > delayed a while back but now she seems to have caught up. They recommended > EIS and private therapy 2-3 times a week. However they cannot explain why > she had speech regression. My question is, does everyone who has apraxia > also have motor skill delays? Has anyone else out there have speech > regression that is not apraxia, seizure disorder or chromosomal disorder? > > Thanks, > > Allie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 We have no motor skill delays, aside from no running. But my son is blind and it's not likely he will want to run- maybe not ever. In fact, or gross motor and fine motor skills have been extremely advanced. But... we have no formal diagnoses for verbal apraxia as I'm told it's tricky to dx. I was told for a true dx we needed about 100 words to go on. LOL- sorry but maybe we are excited if we here any word at all at this point. My son spoke his first words at 5 months. He quickly combined. His vocabulary didn't move far outside these few words but he used them all the time. His brothers were talking even earlier than this. Our pediatrician at the time was smiling about his extreme verbal skills and babbling in conversation format from 2 months. Around 7-8 months some words that were used all the time left. A few different words came in. Then they left even quicker. We thought at the time that he was depressed. He has a disease in which he was born with vision and rapidly lost it in the first year of his life. We feel at around 7 months he lost more. He's been in glasses since 4 months. (sat alone 3 days after getting glasses) We were talked to about the possibility of some sort of tumor or serious neurological problem. We weren't worried because he'd had an MRI. His speech didn't completely go away, just sort of was odd. Never fully developed. At around 13 months he lost most common words he'd been using, which were command related or echo type words. EX: up mama, drink, mmm good, dada bye bye. He would also be a real goof bucket and say mama for dada and the reverse. He laughed and knew what he was doing. He changed his words, they were less clear and had a lot of one timers. For a short time he would say *no no mama, no more*. He would say happy as *ha ee*. At 15 months he was barely ok on the charts for his verbal skills. By 18 month he had no words at all anymore. He's never labled an object. It was hard to know what was blindness related and what was really a problem. We have had more verbalizing the last 4 days since starting him on efalex. We have even had a few words. Of all things he is saying lion. He's attempting a few more and says Hi now. A friend told me today he was happier than she had ever seen him, more *with it* and was shocked at his babbling. Sorry for going on - but it just came out. Lynn [ ] Apraxia? My daughter is two years old. She began talking at about 16 months, not many words but a few consistent ones. At 18 months she stopped. Every once in a while she will say a word but then never says it again. We took her for a speech evaluation and to a developmental pediatrician, thinking that it may be apraxia. She had an MRI done which was normal. Both places don't believe that she has apraxia because her motor skills are right on target. They were delayed a while back but now she seems to have caught up. They recommended EIS and private therapy 2-3 times a week. However they cannot explain why she had speech regression. My question is, does everyone who has apraxia also have motor skill delays? Has anyone else out there have speech regression that is not apraxia, seizure disorder or chromosomal disorder? Thanks, Allie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 Hi Lynn, Has your child's myelin been checked? I'm sure it has been -I'm just curious from what you have posted to us. Apraxia is tricky to diagnose -and you need at least 100 words to diagnose? What if your child only goes up to about 15 or 20 words by the age of 15 or 20 -like some of the other parents who have told us about this in our group? This person isn't suggesting you wait to begin appropriate therapy are they? Here are typical words from my son Tanner when he was three and a half and started to attempt sentences on his own without a model -he could do better with a model like most apraxic children. this is to tight = " die die die " (point to pants) I want to go outside = " die die die die die " (pointing to outside) I don't know = " na na no " where is mommy = " ma ma mommy? " where is daddy = " da da daddy? " Dakota = " bobo " Auntie = " doodoo " and of course my favorite when we went to Alba Vineyards one year for the grape festival and my three and a half year old Tanner politely asked for a cookie and everyone turned when he did when he loudly said ... " do do doodie? " twice...(and pointed to the cookies) that was until his Ortega CCC SLP, his therapist taught him the " t " sound was a better approximation than the " d " for the letter " c " sound that he couldn't yet do. " to to tootie " sounds more like " I want a cookie " . What sounds count as words with an apraxic child? Back then like most parents of apraxic children -we were counting everything - " ba " for ball counted as a word for ball if he was pointing at the ball, and " ba " for bath counted as a word for bath if he was pointing at the bathtub -even still, we were no where near 100 words when Tanner was diagnosed as apraxic. Tanner was diagnosed as apraxic numerous times by speech pathologists as well as a pediatric neurologist and a developmental pediatrician (Dr. Agin) Both neurodevelopmental doctors, including Dr. Agin, diagnosed Tanner's apraxia and hypotonia in one normal office visit. If you know what apraxia looks like - especially if your child has oral apraxia too -it's not at all difficult to spot. Oral apraxia is not hard to figure out and can be diagnosed quite young. A typical 10 month old knows how to " on command " blow bubbles -which means that if your two year old doesn't know how to pucker up and blow out the candles on his birthday cake and is also still not talking, you probably don't want to wait till he's " up to 100 words " for the diagnosis to know something is going on. Here is some information on apraxia from our late talker handout that was overseen by a Tallal PhD, Marilyn Agin MD, and Cheryl SLS MA Educational Consultant (let me know if you guys want me to post the whole thing) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ " Most parents, and even most pediatricians, are not concerned when faced with a two-year-old who passes all of his developmental milestones on time - except speech and language. However, they should be. It is vitally important to identify and treat speech and language challenges as early as possible in a child's life, with a strong emphasis on the early intervention years of birth to three. At this age the brain is undergoing the most rapid development. No harm will come from therapeutic services. " Early intervention services are benign in their delivery but can be extremely beneficial. Don't wait. Six months for a 2 year old is equivalent to a quarter of their lifetime developmentally " as Dr. Judy Flax says, who is a Research Coordinator of the Tallal Lab and a Senior Research Speech Pathologist for the Infancy Studies Laboratory at the Center for Molecular and Behavioral Neuroscience (CMBN) of Rutgers University, Newark, NJ " ... " Some speech disorders can overlap, or be misdiagnosed. For example, " Verbal apraxia, a disorder of central nervous system (CNS) processing, and dysarthria, a disorder of output, are commonly confused " , says Dr. , chief of child development at the Chicago College of Medicine. " Experts are able to differentiate between these two disorders by listening carefully to a child's speech and by identifying certain physical clues " , says Dr. , but adds, " These disorders are poorly understood by physicians and by a lot of speech therapists as well. " It is possible for phonological disorders, apraxia and dysarthria to all occur together in the same child. Speech Language Impairments, which is connected to language based learning difficulties may also be present. And the severity of each may vary. Apraxia is perhaps the most misunderstood of all the speech disorders. So, what is apraxia? Verbal Apraxia is a neurological motor speech impairment that involves a breakdown in the transmission of messages from the brain to the muscles in the jaw, cheeks, lips, tongue and palate that facilitate speech. There is no obvious weakness in these muscles and the child may well be able to move them quite happily when not trying to speak. Apraxic children, who are usually seen as " just late talkers " when young, are able to comprehend language at an age appropriate level, however have difficulty expressing themselves using speech. With apraxia, a child knows what he wants to say but there is a road block obstructing the signal from the brain to the mouth. For any child with a speech disorder, but especially with apraxia, the earlier therapy is begun, the better the results for your child and their social-emotional development. " ... ~~~~~~~~~~~~~~~~~~~~~ Apraxia can stand alone, however based on the large amount of children in this NJ area with apraxia we have the chance to see that most have hypotonia/sensory integration dysfunction or both - and " some " have motor planning issues in the body. I can tell you that most of the children blend and may pass early developmental milestones on time -therefore we highly recommend the neurodevelopmental examinations not because all are so knowledgeable about apraxia -but to rule out or confirm the other neurological soft signs I just mentioned. Adapted from Clinical Practice Guidelines Communication Disorders III 22-25 In addition, the policy statement from the neurology journal Neurology, (August, 2000), states that Absolute Indications for Immediate Evaluation include, · No babbling or pointing or other gestures by twelve months · No single words by sixteen months · No two-word spontaneous phrases by twenty-four months · Any loss of any language or social skills at any age. Here is some information on Sight and Language from the CHERAB website: " I have been spending some time thinking about the discussion we had last week. Most of my observations about muscle tone have come from working with children over the course of many years. The basic understanding I have is that it takes a lot more focused energy for young children with apraxia to use their eyes and head together. It is really asking a lot to ask kids to work their eyes and head and also to ask them to learn to talk at the same time. Activities that are effortless for us require an enormous amount of motor planning skill on the part of children, especially children with any kind of apraxia. It must be like trying to learn French at the same time you're trying to learn how to swim. No wonder the kids get frustrated! Add to this the challenge of low muscle tone and weakness, and then the challenges seem almost overwhelming. The key to understanding this is understanding that kids use the abilities they have in different ways than we do. So we're not just talking about differences in ability, we are talking about differences in the way the abilities are used. For example, kids have a variety of different visual abilities. Even most blind kids have some kind of visual ability, even if it is very limited. They may be able to see light, and this will help them get around in their house. So their ability is different from typical kids. The second layer of issue is to ask: what is the child using her vision for? This might seem like a dumb question, but it's not. This is where the low muscle tone issue comes into play. Many kids I know who have low muscle tone, especially in early development, use their vision to help them maintain their posture. By this I mean that they focus on a point in the distance and use their line of sight to fix their body position. So this is a critical difference in the way vision is used by a child with low tone as compared to a child with normal tone. A child can have 20/20 vision, but if she uses her vision to maintain her posture, it is not available for her to use for any close, fine-motor work. When the child breaks her gaze at distance to try to refocus at nearer, she loses her body equilibrium. That is why it's so very important to work on fine motor tasks with the child in a totally supported position. This allows the child to learn the fine motor skill because the vision is freed up to for use at near point. Now don't get me wrong, I'm not saying that kids should not strengthen their bodies. I don't think kids should be sitting around supported positions all day. But I have found that the supported position allows the child to focus their energy on speaking and/or looking. The critical analytical skill here is to understand that there may be a difference in ability to coupled with a difference in functional use of vision. To try to present close work to a child who is focused at distance without providing that child with the support they need to be successful at near point is useless. And I don't know how many times I've seen teachers do just that, turn to me with an exasperated look, and say, " I just can't get this kid to pay attention! " " Well, " I say, " he's using his vision and all his energy to just stay upright! " So that's really do just of what I have to say. I have just bought the Dragon Naturally Speaking software, so I've dictated this entire memorandum. If things look weird, that is why. It makes one feel very powerful to see one's words coming up on the screen as soon as one says them! So I'm going to try to figure out how to e-mail this to you now that I've dictated it and hopefully you will get it in the next day or so. Maybe we can find a middle point where we could meet for lunch someday. It would be good to get a chance to talk some of the stuff over with you in person. Take care, " Hope this helps a bit. ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 <<<My question is, does everyone who has apraxia also have motor skill delays? >>> My son has DVD and he has no other skill delays. His fine motor as well as gross motor are excellent and in fact he held a pen/pencil and eating utensils correctly right out the box! So no, not all have motor skill delays. Vivian in Hot ole Phoenix Mom to DJ (5 yrs. old, moderate verbal apraxia and that's it) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 Hi, For what it is worth .....!!!!!!!!!! My son was talking and babbling well and had passed all his developmental milestones - he had normal motor skills . He stopped talking and babbling when given the MMR and began to loose social skills over the next few months developing temper tantrums and some repetitive bahaviours. he also developed a tendency to loose stools and lost interest in potty training. He started to restrict his diet. he was diaganosed with autistic spectrum disorder six months later and then with dispraxia about two years later . Just my experience ! Regards Deborah. > My daughter is two years old. She began talking at about 16 months, not many > words but a few consistent ones. At 18 months she stopped. Every once in a > while she will say a word but then never says it again. We took her for a > speech evaluation and to a developmental pediatrician, thinking that it may > be apraxia. She had an MRI done which was normal. Both places don't believe > that she has apraxia because her motor skills are right on target. They were > delayed a while back but now she seems to have caught up. They recommended > EIS and private therapy 2-3 times a week. However they cannot explain why > she had speech regression. My question is, does everyone who has apraxia > also have motor skill delays? Has anyone else out there have speech > regression that is not apraxia, seizure disorder or chromosomal disorder? > > Thanks, > > Allie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 , While I was somewhat put-off by the suggestion of 100 words, just seemed so far-fetched and ridiculous... I do think that the cautious approach at further labeling my son is probably a good one. The ST that we had through ECI was really good. She treated his lack of talking as apraxic. I noticed a difficulty with my son early on and as soon as we knew he was blind I called ECI for a formal evaluation. At the time I had the oddest concerns about him being behind. They gave me some guidlines and charts for what normal children should be doing at certain ages. My older 2 boys did mind-boggling things at early ages, such as reading, really really reading, not reciting, at age just turned 2. So, I kept thinking I needed to stop comparing. It's hard to not mentally think oh, this one did that at this age. Realizing how far behind certain skills were. I was also handed a chart for blind children and their typical skills per age. My son was off the charts there and about normal otherwise. Many of my sons speech patterns seem very much like verbal apraxia. He has great difficulty speaking and getting a word out. He may say something as many as 2 times in a row, then he can no longer say it. Or, he will say a word for a month or two, then can no longer use it. The ease of a word has never been there. His speech was never really good when he did talk but it was usually good enough that you could figure out what he wanted. Plus he didn't use complicated speech. His few words were mostly food and command related, the kind of things us mom develop ESP over anyway. Drink was *dinh* daddy was *da e*, mmm good = mmm goo, hat= ha, even his current new word of lion= ion, with a weird over kill on the n sound some of the time. he said night night the other night as *nut* nut*. Many of his words that hang around for a short time, change during that time at sound different. He has had no real words since he was about 18 months. They have all gone. He occassionally moves his mouth to speak and nothing comes out. He clinches his fist and teeth and jumps, but nothing comes out not even a squeak. Although he was babbling at about 4-6 weeks, I'm thrilled just to have that back now! I have his early babbling on video, it was on our web page. He was having a conversation with his older brother. It's just nutty. I'm not sure I care what his label is. I think that you all have helped me so much by the whole diet/nutrition thing. I know that his diet is missing all of these things you all are talking about. He eats no meat or veggies. He has EXTREME DSI. He still eats baby food, vanilla custard and fruits. I can get him to eat ritz crackers, cheerios and pretzels. We are up to a yogurt with no chunks as well. No, we have had no testing on the apraxia. I just dropped ECI while I research insurance coverage of agressive speech therapy, which ECI doesn't cover and he desperately needs. He hasn't had much therapy due to an extremely jealous 5 year old and his last year before going off to school. I'm doing the leg work now and due to my sons extreme ability to hum entire songs in pitch (i know sounds autistic), i am searching for a music/speech therapist. What is that test and should we start with a neurologist? He has had a MRI, but that was at 8 months. We really swore off testing him any further after we had his rods and cones tested. BTW- have you noticed the link to the retina in all of this EFA stuff? My nutrition while pregnant with him was horrible. (guilt) I would love to have a list of the vitamins and nutrients he should be getting to analyze what else he is missing. I have looked for the carnosine and will be getting it online today since GNC didn't have it. I know he needs that, as I said he eats NO MEAT. He's as of yesterday, getting a multi-vitamin and the Efalex. He is also anemic. Lynn From: kiddietalk Sent: Wednesday, May 22, 2002 8:10 PM Subject: [ ] Re: Apraxia? Hi Lynn, Has your child's myelin been checked? I'm sure it has been -I'm just curious from what you have posted to us. Apraxia is tricky to diagnose -and you need at least 100 words to diagnose? What if your child only goes up to about 15 or 20 words by the age of 15 or 20 -like some of the other parents who have told us about this in our group? This person isn't suggesting you wait to begin appropriate therapy are they? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 Hi, Sighs ........ he is eating only gluten,dairy and fruit in a very restricted diet? Have you considered investigeting gluten and dairy intolerance - especially as he has lost speech/ skills ( like my son). Most of " our " kids ( intolerant) struggle with iron deficiency . I am curious about your humming/autistic link . I know about thirty autistic kids and don't know one that can do that ! Although the little chaps do sometimes have surprising abilities. ! Regards Deborah --- In @y..., Lynn McClendon <mamapudd@s...> wrote: > , > > > Although he was babbling at about 4-6 weeks, I'm thrilled just to have that back now! I have his early babbling on video, it was on our web page. He was having a conversation with his older brother. It's just nutty. I'm not sure I care what his label is. I think that you all have helped me so much by the whole diet/nutrition thing. I know that his diet is missing all of these things you all are talking about. He eats no meat or veggies. He has EXTREME DSI. He still eats baby food, vanilla custard and fruits. I can get him to eat ritz crackers, cheerios and pretzels. We are up to a yogurt with no chunks as well. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 Aaahh, am i going to have to research MMR's now too? ; ) I've seen this come up a lot and haven't wanted to approach that thought. Maybe I should look it up and see if there is a link. I think no, because his speech was sporadic for awhile. It was about 7-8 months that the incosistant behavior started. Lynn [ ] Re: Apraxia? Hi, For what it is worth .....!!!!!!!!!! My son was talking and babbling well and had passed all his developmental milestones - he had normal motor skills . He stopped talking and babbling when given the MMR and began to loose social skills over the next few months developing temper tantrums and some repetitive bahaviours. he also developed a tendency to loose stools and lost interest in potty training. He started to restrict his diet. he was diaganosed with autistic spectrum disorder six months later and then with dispraxia about two years later . Just my experience ! Regards Deborah. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 -Hey Lynn, Investigate the MMR - now THERE is an undertaking !! Good luck with finding it, making sense of it , understanding it and then deciding what does and does not seem logical to you . You will be familiar with opoid excess theory and epedemiological studies in no time !!!! ( Then you will be as tiresome as me !) Seriously, I do actually know the theory behind MMR damage ( and for those of you who like to jump on me at this point I did say THEORY !!!!!!) . I would be happy to give you the straightforward version so that you can see if you think that any of it may ( or may not ) apply to your son. Very few people who believe that their child was damaged by the MMR believe that the regression was instant _ Charlie is unusual in that respect . Most report a loss of skills over a period of months so that would not necessarily be inconsistent with what you saw. Personally I no longer care too much in the whys and wherefores of the theory - I only care that it has given me an explanation for how I lost my son and a treatment that has effectively brought him back. Latest update ..Charlie has one sound words, poorly articulated 10 months ago. Today he said " hey you, sign says keep off grass " ....echolaic for sure but nearly perfectly pronounced !! Give me a shout if you want the theory ! Best regards Deborah -- In @y..., Lynn McClendon <mamapudd@s...> wrote: > Aaahh, am i going to have to research MMR's now too? ; ) I've seen this come up a lot and haven't wanted to approach that thought. Maybe I should look it up and see if there is a link. I think no, because his speech was sporadic for awhile. It was about 7-8 months that the incosistant behavior started. > > Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 Hi again Lynn ! The MMR and the diet are linked . Symptoms of intolerance to those foods are often demonstarted by the child craving certain foods , restricting diet and refusing other alternatives. I jumped at your post as when Charlie first started restricting his food of choice was ...cheerios ! It got to the point where I carried a freezer bag of them around and he ate them like sweets . If your other children have allergies ( therefore a family trait ) that is another link. Charlies older brother would regurgitate milk when I first introduced it ..I guess his reaction to that lessened over time but , now Charlie reacts to ( although with autistic behaviours rather than a standard allergy ) I have removed it again and Louis seems the better for it. Would you like me to post you some info off the board ? You Doctor will be able to assure you that the MMR is safe and that the diet will have no good effect - just as mine did but I figure I'm a big girl and can make my own mind up . If you want to get the established view I can let you have some info explaining the theory and why some of us believe that certain children do react. Just let me know . I know about the time thing as Charlie is quite demanding so I will try and give you the basics and some sites to visit if you want to follow up . Just shout Regards Deborah PS - I've said before ...my e-mail has been playing up for the last few weeks and I have lost loads of stuff . If there are any of you waiting to hear from me PLEASE PLEASE e-mail and let me know ...al addresses , e-mails and contacts lost . I'm sorry if some of you think I wasn't answering !! --- In @y..., Lynn McClendon <mamapudd@s...> wrote: > Interesting, I was told that the humming was very autistic. He can hum entire sides of a tape in order. He has only done that a few times. He also has occassionally humed a sentence we said back to us. He has hummed words and hums to count - occassionally. He is extremely inconsistant. He at one time for about 2 months, would take his favorite song *Twinkle twinkle* and substitute *mama, dada* in it. > > You also raise an majorly interesting thought on the dairy issue. I think his Gerbers brand vanilla custard isn't real high in dairy though. The yogurt is really knew, as in the last month. If I rid him of the yogurt he will be back to 9 grams of fat a day. I was sucessful in getting some carrots ground into bananas and applesauce. I nursed him until he was 13 1/2 months. I radically weaned him at that point because he began refusing any food at all. I started him on baby foods really late, around 6 months. > > Can you direct me to more research or information on dairy allergies? or what you have mentioned here? I feel I'm really on the right track but am also spending too much time on the computer this last week researching and not enough playing with my children and doing laundry. Although, Austin is right here with me as our computer is in the playroom. I can hear him and it's such a joy to hear ANYTHING! : ) > > Also- my 2 older boys DID have a milk allergy early on but now can tolerate it with no problems. They don't drink milk. One is fairly obsessive about eggs. (think that's interesting) We really limited dairy products in their diets and have only in the last few years been putting them back. > > Lynn > Austin 27 months (LCA- congenitally blind) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 Interesting, I was told that the humming was very autistic. He can hum entire sides of a tape in order. He has only done that a few times. He also has occassionally humed a sentence we said back to us. He has hummed words and hums to count - occassionally. He is extremely inconsistant. He at one time for about 2 months, would take his favorite song *Twinkle twinkle* and substitute *mama, dada* in it. You also raise an majorly interesting thought on the dairy issue. I think his Gerbers brand vanilla custard isn't real high in dairy though. The yogurt is really knew, as in the last month. If I rid him of the yogurt he will be back to 9 grams of fat a day. I was sucessful in getting some carrots ground into bananas and applesauce. I nursed him until he was 13 1/2 months. I radically weaned him at that point because he began refusing any food at all. I started him on baby foods really late, around 6 months. Can you direct me to more research or information on dairy allergies? or what you have mentioned here? I feel I'm really on the right track but am also spending too much time on the computer this last week researching and not enough playing with my children and doing laundry. Although, Austin is right here with me as our computer is in the playroom. I can hear him and it's such a joy to hear ANYTHING! : ) Also- my 2 older boys DID have a milk allergy early on but now can tolerate it with no problems. They don't drink milk. One is fairly obsessive about eggs. (think that's interesting) We really limited dairy products in their diets and have only in the last few years been putting them back. Lynn Austin 27 months (LCA- congenitally blind) [ ] Re: Apraxia? Hi, Sighs ........ he is eating only gluten,dairy and fruit in a very restricted diet? Have you considered investigeting gluten and dairy intolerance - especially as he has lost speech/ skills ( like my son). Most of " our " kids ( intolerant) struggle with iron deficiency . I am curious about your humming/autistic link . I know about thirty autistic kids and don't know one that can do that ! Although the little chaps do sometimes have surprising abilities. ! Regards Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 Hi Lynn! I agree that labels can hurt as much as help at times since so many things can overlap, etc., however it's at times necessary to have a diagnosis for therapy reasons which I'll explain. So I question -who does the caution you talk about protect?...and from what? Children that are " just " late talkers do not lose language normally. As I sent in the last post, lose of language alone at any age is one of the absolute Indications for Immediate Evaluation by a neurodevelopmental doctor according to the policy statement from the neurology journal Neurology, (August, 2000). Believe me, probably all of the parents in this group who have children with communication delays and not much else, at some point wanted to believe all of the well meaning family, friends, and strangers on line at the supermarket that said " he's just a late talker " However it's not their child, and as wonderful the world would be if they were always right, there unfortunately is statistically a rising amount of times now that they are now wrong. And for children like these, like mine, early and appropriate therapy is proven to be valuable and important. Early, and appropriate intensive therapy is typically not done for children that are believed to be just " late talkers " that are actually undiagnosed apraxic children. Again, many of our children can pass early developmental milestones and can be viewed by most as " late talkers " . Apraxia is not a cognitive disorder, so the children can be extremely intelligent and can push themselves to blend -up to a certain point or age. We all know the long term effects on speech for apraxic children that don't receive appropriate therapy, however, some don't know the soft signs that typically can accompany apraxia should be addressed early as well. After awhile even mild hypotonia which is not addressed can effect their later school years. A child with low tone in the truncal area for example may not have good breath control which is so important for speech. This same child may not stand out in Kindergarten, however may not have the upper body strength needed to provide them the ability to sit upright in their seat for long periods of time while they hold a pencil and write. As they go up in the school years, this becomes expected of them, while they may have to lean on their desk, which is not the most optimal way to be in class for various reasons. Children that lean instead of " sitting up straight " could be perceived as not interested, or lazy. In addition, they may not be able to see all of what is going on. So just like the young apraxic children with mild hypotonia who can be scolded in the mall for not wanting to walk any further -the pattern continues as they grow up and they continue to be scolded for something that is an unrecognized impairment. So self esteem for your child is another reason to raise awareness about labels, and another reason to re think the cautious attitude that most of the world has towards speech impairments. Think about a check out clerk who gets increasingly nasty to a customer as this person continues to say " excuse me? " each time they are told what they owe. Then think of that same cashier's face and manor when the customer informs them " I'm sorry, I'm deaf and my hearing aid doesn't appear to be working that well " Unless you know if your child has hypotonia or sensory integration dysfunction or motor planning issues of the body outside of speech by going to a neurodevelopmental doctor like a pediatric neurologist or developmental pediatrician -you can not advocate for your child for these neurological conditions, nor can you show and create compassion and understanding to what others perceive as a problem. I love Deborah's brilliant suggestion of the business cards her children carry. I also encourage all parents of late talkers to learn and use at least a few simple signs with their late talkers because then strangers will assume your child is deaf when he doesn't talk, or talk well, and right now there is more public understanding and compassion for the deaf, and knowledge that it doesn't affect intelligence, then the speech impaired. Unfortunately " my child is a late talker " only works for a year or two -maybe up till your child turns three -somehow three appears to be the magic number for most of the world where it's OK to be nonverbal up to then as long as the speech kicks in 100% right after. Therapy wise however -without the label you may miss out on some of the most important developmental years for brain development - birth to three. After three -the " non " label begins to hurt your late talker or speech impaired child in many other ways however-and most important I believe -it begins to hurt your child's self esteem. As far as all the nutritional supplements for your child -I'm not a nutritionist myself -I do know that where ever you live you can probably find one that can coordinate with your pediatrician to tell you which supplements are best. Dare I add that in addition to carnosine which I don't know much about for sight that someone mentioned -that not just anecdotal reports -there has been clinical proof as to the importance of the PUFAs on the health and effectiveness of the human eye (or the guinea pig eye, the miniature poodle eye, even the cow eye!!) What I heard is that if the DHA is not present to conduct the proteins distribution between the genes in the eyes than the body produces it's own " type of DHA to replace the real DHA, which is not as efficient as the DHA itself, and the vision is then not as great -or something like that. So sounds good you started the EFAs!! Anyway -if you take a moment to research online the importance of PUFA (or put in DHA, etc.) on the eye, retina, cornea, vision, etc, you will find a wealth of information. One website I found that overall looks like a good website for all of us to look at -however it also goes into the PUFAs (Polyunsaturated Fatty Acids) effect on vision is: http://www.hi-dha.com/pdfs/FunctionalLipidsBULL.No3%20.pdf Here are just a few of the other links with a bit or two pulled out from each -there are many more as I said: E. , MD, PhD: Phosphoinositide signaling pathways, polyunsaturated fatty acid (PUFA) metabolism, N-myristoyl transferases, neuroprotective agents, biochemical mechanisms of retinal degeneration, control of phosphoinositide synthesis. http://www.dmei.org/research1.asp Dr. Lands organized, with Dr. Norman Salem, Chief, Laboratory of Membrane Biochemistry and Biophysics, Division of Intramural Clinical and Biological Research (DICBR), a multidisciplinary NIH Special Interest Group on Polyunsaturated Lipid Functions (PUFA) to bring together physiologists, clinicians, neurobiologists, pharmacologists and others interested in how polyunsaturated fatty acids function in tissues. Plans are to also have subsections on DHA in brain functions, eicosanoids, endocannabinoids, and psychiatric disorders. Dr. Lands also organized and chaired a March 20 workshop on " Essential Fatty Acids in Health Maintenance and Disease Prevention. " This workshop was co-sponsored with the NIH Office of Dietary Supplements and the United States Department of Agriculture (USDA), Beltsville Human Nutrition Research Center. http://www.niaaa.nih.gov/about/Director6-01.htm At least some preformed DHA is required for optimal canine nervous system function and visual development as well as for effective reproduction.8 DHA concentrates in the eye and is critical for vision. Retinal degeneration is a leading cause of blindness in companion animals. Some breeds have an inherited tendency to develop this condition, which may be related to abnormalities in LC-PUFA metabolism.9 For example, miniature poodles with genetic retinal degeneration were found to have abnormally low ratios of DHA to DPA in the eye tissue and bloodstream.10 It may be that DHA is indeed made in the retina but not enough to be optimal. And if transport is indeed suboptimal, it may make sense to increase the amount of DHA available just to try to alleviate the problem somewhat. Certainly, if transport of DPA is impaired, supplementing DHA makes good sense.11 (This is still an active area of research.) 9. Alvarez RA, et al. Docosapentaenoic acid is converted to docosahexaenoic acid in the retinas of normal and PRCD-affected miniature poodle dogs. Invest Opthalmol Vis Sci 1994;35:402-8. 10. Alvarez, RA, et al. Plasma lipid changes in PRCD-affected and normal miniature poodles given oral supplements of linseed oil. Indications for the involvement of n-3 fatty acids in inherited retinal degenerations. Exp Eye Res 1994 Feb;58(2):129-37. http://www.newhope.com/nutritionsciencenews/NSN_backs/Oct_01/pufa.cfm Category C1: Refereed Journal Publications (huge amount here) 1. Weisinger HS, Vingrys AJ and Sinclair AJ. Dietary manipulation of long-chain polyunsaturated fatty acids in the retina and brain of guinea pigs. Lipids 30 471-473 (1995). 11. Leaf AA, Gosbell A, Sanigorski A, Sinclair AJ and Favilla I. Essential fatty acids and retinal function in preterm infants. Early Human Develop 45 35-53 (1996). 17. Weisinger HS, Vingrys AJ, Sinclair AJ. Effect of diet on the rate of depletion of n-3 fatty acids in the retina of the guinea pig. Submitted J Lipid Res (Sept 1997). 19. Weisinger HS, Vingrys AJ, Sinclair AJ. Effect of diet on the rate of depletion of n-3 fatty acids in the retina of the guinea pig. J Lipid Res 39:1274-1279 (1998). 32. Abedin L, Lien EL, Mann NJ, Vingrys AJ, Sinclair AJ. The effects of dietary alpha-linolenic acid compared with docosapentaenoic acid on brain, liver, retina, liver and heart in the guinea pig. Lipids (submitted October 1998). 15. Weisinger HS, Vingrys AJ, Sinclair AJ. The effect of refeeding n- 3 deficient guinea pigs with canola oil on retinal PUFA profile and retinal function. (Proceedings of the Fourth International Congress on Essential Fatty Acids and Eicosanoids, Edinburgh, July 1997). Prostaglandins, Leukotrienes and EFA 57, 188 1997. http://www.as.rmit.edu.au/foodsci/publicat.htm Docosahexaenoic acid - formed from EPA – Structurally & functionally essential constituent of the Central Nervous System & retina Crucial for development and maintenance of these organs Acts as a reservoir for EPA http://www.nutrition-education.com/100084.php 27. Uauy R, Birch D, Birch E, Tyson J and Hoffman DR: Effect of Omega- 3 Fatty Acids on Retinal Function of Very Low Birth Weight Neonates. Pediatric Research 28,485-492, 1990. 31. Birch DG, Birch EE, Hoffman DR, and Uauy RD: Retinal Development in Very-Low-Birth-Weight Infants Fed Diets Differing in Omega-3 Fatty Acids. Investigative Ophthalmol Vis Sci 33:2365-2376, 1992. 11. Hoffman DR, Uauy R, Birch EE, and Birch DG: Effects of Omega-3 Long-chain Polyunsaturated Fatty Acid Supplementation on Retinal and Cortical Development in Premature Infants. Am J Clin Nutr, 57:807S- 812S, 1993. 17. Hoffman DR, Uauy R, and Birch DG: Docosahexaenoic Acid Abnormalities in Red Blood Cells of Patients with Retinitis Pigmentosa. Degenerative Diseases of the Retina (RE , MM LaVail, and JG Hollyfield, eds.) Plenum Publ., New York, 1995; 385- 393. 37. Uauy R, Treen M, Hoffman DR and on D. Effect of Docosahexaenoic Acid (DHA) on Membrane Properties and Function in Retinal Cells. 32nd International Congress on Biochemistry, Granada, Spain, 1991. 45. Uauy R, Birch E, Birch D, and Hoffman D: Omega-3 Fatty Acids for Retinal and Brain Development of Preterm and Term Infants. Proc. International Society for the Study of Fatty Acids and Lipids, Lugano, Switzerland, July 1-3, 1993. 47. Uauy R, Birch DG, Hoffman DR, and Birch EE: Omega-3 Fatty Acids: Essential Nutrients for Optimal Retinal and Brain Development. Proc. Sci. Conf. Omega-3 Fatty Acids in Nutrition, Vascular Biology, and Medicine, American Heart Assoc. Houston, TX, April, 1994. http://www.retinafoundation.org/drh-cv.htm The aim of this group is to better understand the effect of nutrition (with special emphasis on n-3 PUFA), associated with changes in the fatty acid composition of membrane phospholipids and different aspects of brain physiology (cognitive capacity, behaviour, visual acuity, rhythms, …) according to specific anatomical areas (frontal cortex, nucleus accumbens, cerebellum, striatum, retina, suprachiasmatic nucleus). Different mechanisms are under study: dopaminergic and cholinergic neurotransmission, retinal electrophysiology; PUFA metabolism in retina cells, gene expression in relation to phototransducing... DHA effects on the proliferation and differentiation of retinal cells, the regulation of gene expression in cultured retinoblastoma, PUFA implication in the control of retinopathy... http://www-unsa.jouy.inra.fr/gene/anglais.htm Important issues were raised, notably in the session on maternal and infant nutrition. The evidence is consistent that visual and cognitive development of infants receiving breast milk is closely related to the presence of both arachidonic acid (AA) and docosahexaenoic acid (DHA). The latter is equally prominent in the infant brain and retina, and is higher in breast fed than formula fed infants. It is an area of child health which is attracting much attention, since DHA is thought to provide not only a substrate for eicosanoid synthesis in the brain but also is an essential component in the myelination of nerve fibres. It would therefore appear to make good sense to ensure that infant formulas are supplemented with AA and DHA. But there scientists still find themselves navigating in territory that is not fully charted, since it has not proved possible to define standard contents of AA and DHA in breast milk. Even the available indicators for the assessment of neonatal development in relation to provision of AA and DHA are incomplete, because of the presence of major confounders, genetic, maternal, familial and socio economic. Just how fragile the existing data may be was a question posed by E. Carlson, Memphis, Tennessee, USA. She noted, for example, that the Fagan Test of Infant Intelligence, the Bayley Scales of Infant Development, and the Brunet Lezine Test, all of which have been used in PUFA work, may not specifically assess the neural functions or developmental areas that are in fact influenced by the long chain polyunsaturated fatty acids. Until better instruments are available, the assessment of neurobehavioural development of`human and non human primates in relation to variable intakes of AA and DHA will continue to be difficult. The question is crucial, because of the possible consequences of an inadequate source of DHA and AA for the developing infant. Brain lipids begin to increase only in the third trimester of gestation, when myelin formation sets in, and will continue to increase long after birth, as was pointed out by Crawford, London, UK. http://www.medev.ch/pufa/pufa9704.htm One of the most important of such difficulties for quality of life in old age is the problem of deteriorating sight, caused by such phenomena as macular degeneration. The macula is that part of the retina that distinguishes fine details at the centre of the field of vision. In advancing age, there may be a degradation of the insulating layer between the retina and the blood vessels behind it. Destruction of the retinal nerve occurs when fluid leaks into the choroid and forms scar tissue. One person in three over the age of 75 may be affected , and risk factors include genetic inheritance and smoking. There is no effective prevention or treatment for the disease, though laser photocoagulation aimed at areas of choroidal neovascularization has had some success in recent research in Japan. So the possibility that docosahexaenoic acid (DHA) might have a positive role in the context of this disorder is of some importance. In research which we discuss in this issue, investigators in Boston reported an inverse relationship between DHA, and also fish consumption, and the risk of the disease. The study, a subsection of the Nurses' Health Study and the Health Professionals Follow-up Study, examined a very large volume of data from men and women and its conclusions add still more weight to the accumulating evidence concerning the potential health benefits of the omega 3 long-chain polyunsaturated fatty acids. Since fish consumption is an important source of omega 3 LC-PUFA, the question of pollution of the oceans and inland rivers and lakes is an important issue. In this regard, we also report on work by investigators at the Research Institute of Public Health, Kuopio, Finland, on levels of mercury in fish. The study found that a high intake of omega 3 LC-PUFA is associated with a reduced risk of acute coronary events. However, the mercury content in fish in Finland is high, and this might cause peroxidation of unsaturated fatty acids. The researchers report that those men who had the highest proportion of docosahexaenoic acid (DHA) and docosapentaenoic acid (DPA) in serum fatty acids were best protected in terms of level of coronary risk. http://www.medev.ch/pufa/pufa19.htm The omega 3 PUFA were neglected as essential dietary nutrients for 50 years, however it is now recognised that they also play an essential role in human health in regulating or balancing the effects of the omega 6 PUFA. There are three main omega 3 PUFA, ALA (the parent of this series) and eicosapentaenoic (EPA) and docosahexaenoic acids (DHA). The latter are particularly effective in lowering plasma triglyceride levels, they play a structural role in cell membranes in the brain and retina, in ion transport in tissues including the heart and in the regulation of inflammatory conditions. EPA competes with AA for metabolism by the cyclo-oxygenase to thromboxane, prostacyclin and leukotrienes, leading to a " down- regulation " of pro-inflammatory eicosanoid-related cellular events. http://www.arlaus.com.au/cg/efa.html ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 , I just read this post from you and all I can say is... " GO ON WITH YOUR BAD SELF, GIRL!!! " How lucky Tanner (and his big brother too) is to have such an informed and passionate mom like you! It's also a testanment as to how knowledge is power!! Thanks for that info! Vivian, in hot ole Phoenix Mom to DJ (5.0, moderate DVD, and that's it) > Hi Lynn! > > I agree that labels can hurt as much as help at times since so many > things can overlap, etc., however it's at times necessary to have a > diagnosis for therapy reasons which I'll explain. So I question - who > does the caution you talk about protect?...and from what? > > Children that are " just " late talkers do not lose language normally. > As I sent in the last post, lose of language alone at any age is one > of the absolute Indications for Immediate Evaluation by a > neurodevelopmental doctor according to the policy statement from the > neurology journal Neurology, (August, 2000). > > Believe me, probably all of the parents in this group who have > children with communication delays and not much else, at some point > wanted to believe all of the well meaning family, friends, and > strangers on line at the supermarket that said " he's just a late > talker " However it's not their child, and as wonderful the world > would be if they were always right, there unfortunately is > statistically a rising amount of times now that they are now wrong. > And for children like these, like mine, early and appropriate therapy > is proven to be valuable and important. Early, and appropriate > intensive therapy is typically not done for children that are > believed to be just " late talkers " that are actually undiagnosed > apraxic children. > > Again, many of our children can pass early developmental milestones > and can be viewed by most as " late talkers " . Apraxia is not a > cognitive disorder, so the children can be extremely intelligent and > can push themselves to blend -up to a certain point or age. We all > know the long term effects on speech for apraxic children that don't > receive appropriate therapy, however, some don't know the soft signs > that typically can accompany apraxia should be addressed early as > well. After awhile even mild hypotonia which is not addressed can > effect their later school years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2002 Report Share Posted May 24, 2002 If you'd like to email me privately I will listen. I am curious. Lynn mamapudd@... [ ] Re: Apraxia? -Hey Lynn, Investigate the MMR - now THERE is an undertaking !! Good luck with finding it, making sense of it , understanding it and then deciding what does and does not seem logical to you . You will be familiar with opoid excess theory and epedemiological studies in no time !!!! ( Then you will be as tiresome as me !) Seriously, I do actually know the theory behind MMR damage ( and for those of you who like to jump on me at this point I did say THEORY !!!!!!) . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2002 Report Share Posted May 24, 2002 Hi Lynn, My apraxic son Tanner attends a oral based preschool for the hearing impaired and deaf. The children he goes to school with all receive intensive ST / OT, and education. (Tanner, who has normal hearing, wants hearing aids like his best friends and his cousin now so he can " turn everything on and off " !) A few of the children in Tanner's school are diagnosed as deaf and apraxic. In our group here too for one example, Lori D, who just posted about fresh fish -her son is hearing impaired in both ears as well as apraxic, and he receives appropriate therapy for both conditions. Maybe in NJ there are so many apraxic and autistic/PDD (with apraxia) children -and so many that we see and know that didn't get diagnosed and helped till they got older and didn't " just start talking " , that many of us with younger children have found the apraxia label to be the only way to get our children the type and amount of intensive almost daily speech and occupational therapy -to give them the best possible chance they need to communicate verbally in the future. I used to do lots of volunteer work with the deaf and blind -not as much in pediatrics however. I do understand a delay in speech from the vision impairment -is the loss of language you mentioned also normal for blind children? About CP, Robin Susser CCC/SLP who runs the website http://www.speechpathologist.org -her nephew, due to oxygen loss during birth, has severe CP. From the last I've spoken to Robin and her brother -this child has done quite well on the ProEFA, and has been on it since 12 months through his feeding tube. Her brother is a member of our group -but he may not check all the emails to see your question (maybe he'll see this and answer?) If not -email Robin -she's wonderful, and could help answer questions. Here are 2 links you probably have -just in case you don't, you may find good resources. http://www.nncc.org/Diversity/spec.visual.html http://www.nfb.org/nopbc.htm ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2002 Report Share Posted May 24, 2002 So I question -who does the caution you talk about protect?...and from what? Well, blind children are typically on their own milestone chart and therefor his *late talking* is typical of many blind children. Although I'm finding on my LCA list that it's more typical that they talk right on time. : ) So, I suppose that is why there is more caution with him in particular. I'm not crazy personally about having unnecessary labels tagged on him. This one I think fits though and you know what they say... if the shoe fits... On the next response below- I have researched the different suppliments you all have mentioned. I'm shocked at the fact they fit my son so much. I will reserve comment at this early time in our EFA experiment. In reading the LCP solution i'm shocked at the links. I'll update when I have more to go on, but man, I feel like i have a normal child now. He is so happy. It's really early into this for us and I should wait it out more first. I'm curious though- I have a friend with a blind CP child. Premature birth and loads of issues with that. Has anyone tried this on CP? The child is obviously speech delayed considering her overwhelming diabilities. Lynn Dare I add that in addition to carnosine which I don't know much about for sight that someone mentioned -that not just anecdotal reports -there has been clinical proof as to the importance of the PUFAs on the health and effectiveness of the human eye (or the guinea pig eye, the miniature poodle eye, even the cow eye!!) What I heard is that if the DHA is not present to conduct the proteins distribution between the genes in the eyes than the body produces it's own " type of DHA to replace the real DHA, which is not as efficient as the DHA itself, and the vision is then not as great -or something like that. So sounds good you started the EFAs!! Anyway -if you take a moment to research online the importance of PUFA (or put in DHA, etc.) on the eye, retina, cornea, vision, etc, you will find a wealth of information. One website I found that overall looks like a good website for all of us to look at -however it also goes into the PUFAs (Polyunsaturated Fatty Acids) effect on vision is: http://www.hi-dha.com/pdfs/FunctionalLipidsBULL.No3%20.pdf Here are just a few of the other links with a bit or two pulled out Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2002 Report Share Posted May 24, 2002 Hi Lynn, I will sit down with a glass of wine and do my best to explain it ...you may want to do the same when you get it !!!!I'll try and get it to you over trhe week-end - right now I am too busy having a good old weep as my boy has an introduction day at " big school " for the first time ! Re the humming . It is common for autistic kids to humm, my son does . It was the tuneful bit that threw me (LOL!!!) - you lucky gal ! Charlies noise is usually while he has his hands over his ears and it is to create white noise in his head when he is struggling with sensory overload ...and tuneful it ain't ! But a pretty clever device to cut his sensory imput down to a level he can cope with ! Speak soon Deborah Dore --- In @y..., Lynn McClendon <mamapudd@s...> wrote: > If you'd like to email me privately I will listen. I am curious. > > Lynn > mamapudd@s... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2002 Report Share Posted May 24, 2002 I do understand a delay in speech from the vision impairment -is the loss of language you mentioned also normal for blind children? *************** No. However his ST mentioned it wasn't a *loss* because his words were more of an echo? She also thinks it completely fits the verbal apraxia mold. I think of it as a loss. But she does feel strongly that this is his dx and treated him accordingly. She is really good and I'd hire her privately, except she is not on our insurance list. : ( I've discontinued ECI services for now. Austin was due for another eval, so it was the easest way to put that on hold while I search the agressive therapy his speech teacher suggested. I must say, he wasn't very teachable pre Efalex and now proEFA. I'd love to have her check him out again in another few weeks and may sign back on ECI or pay her to come and see what she thinks. (ubiased opinion) Thank you for the below links. I'll check them out. Lynn ********* Here are 2 links you probably have -just in case you don't, you may find good resources. http://www.nncc.org/Diversity/spec.visual.html http://www.nfb.org/nopbc.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2002 Report Share Posted May 24, 2002 Interesting. I knew that singing in tune was a great skill at 2. LOL but humming might be too? ; ) My dh is actually very musical so I'd like to hope he may have ability in this area. Take your time! I'll be busy over this long wkend anyway. Lynn [ ] Re: Apraxia? Hi Lynn, I will sit down with a glass of wine and do my best to explain it ...you may want to do the same when you get it !!!!I'll try and get it to you over trhe week-end - right now I am too busy having a good old weep as my boy has an introduction day at " big school " for the first time ! Re the humming . It is common for autistic kids to humm, my son does . It was the tuneful bit that threw me (LOL!!!) - you lucky gal ! Charlies noise is usually while he has his hands over his ears and it is to create white noise in his head when he is struggling with sensory overload ...and tuneful it ain't ! But a pretty clever device to cut his sensory imput down to a level he can cope with ! Speak soon Deborah Dore Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2002 Report Share Posted May 24, 2002 Hi (again) Lynn! Thanks for letting us know!! It will be great to know how the efalex and now ProEFA help with not only the speech (since we pretty much know that it helps with that for just about all the children big time already) -it will be great to know if it also helps with your son's progressive (?) vision loss in any way. By the way -with the CP question I answered last night - I'm sorry for all of the rest of you on the list that have children with CP that I didn't mention (and yes you can post here to the list about it) There are quite a few people in our group that have children with CP and apraxia. Now I'm confused about the " echo " comment from your son's speech therapist since if your son is able to " echo " something once - shouldn't he be able to again if he doesn't have apraxia? I've had a yellow nape parrot, Woodstock (who's a bit of a character) for 16 years now. So I know all about echo talking...and singing. I taught Woodstock to talk faster than Tanner. In general children with apraxia do better with a model (someone says a sound or word or sentence first then they repeat after) however with or without a model, a child with apraxia can say a word perfect one time and never again -or the word may sound different with each attempt. Well -doesn't matter now anyway -your son's on the correct formula of the Omega 3 and Omega 6 so he probably won't fit the accepted profile of apraxia that much longer anyway. Something funny about the parrot thing -I had heard month's ago from one of the scientists that one theory is that the parrot brain is a primitive model for the apraxic brain when it comes to speech. Maybe like seeing eye dogs -they can train " talking mouth " parrots -and if anyone teases our kids about the way they talk -the parrot can tease them back! (Mine would - when Woodstock is mad at you she'll call you a bad dog) http://www.krasnow.gmu.edu/ascoli/Teaching/Psyc372_01/Cla11.html or a more fun link http://www.sammybird.com/articles/birdbrains.htm ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2002 Report Share Posted May 24, 2002 Me too. I've been confused about that particular comment too. I think bottom line might be that they don't believe he had the speech before. They heard a very limited amount of speech from him in over a year. I'm assuming it also had something to do with the fact that they felt he hadn't made the cognitive connection as to what he was saying. I offered to show the clips of him speaking while trying to crawl at 5 months. To me that was pretty darn amazing. I agree with you though, we are on the right track now. I'm feeling that talking with a nutritionist is best yet I'm wondering if they will think I'm a nut when I tell him what i'm seeing now. A few minutes ago- Austin took his toy with pipes. It plays a song or they can push the pipes to hear the notes. It has 4 pipes. He pushed the pipes in order going down the scale and as he pushed the pipes at the same time he said *HA* in perfect pitch with the pipes and went down scale doing it. This is an absolutely amazing thing coming from him now, but not unusual to see it once. Prior to that he attempted again to say elephant as *e uhn* and car as *ar*. He is saying hi to people when they speak to him but it's odd in that he adds an N sound to the end of it. So he says *hi n*. He is happier and laughing a lot. However i think he had a nightmare last night. Not sure. I finally put him in the car and drove him back to sleep to keep the rest of the house asleep. His sleep otherwise is much more stable than ever. I'll let you know on the eyes. If we see enough of an improvement we are planning to take him to Houston to see his eye dr that is working on his disease. (LCA) I'm so tempted to post about this stuff to the LCA list, but I'd like more proof first. Lynn >>Now I'm confused about the " echo " comment from your son's speech therapist since if your son is able to " echo " something once - shouldn't he be able to again if he doesn't have apraxia? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2002 Report Share Posted May 24, 2002 Hi Lynn! If I were you -I'd seek out some of the doctors (PhD's and MD's) that were mentioned repeatedly in the links that I sent you the list of the other day that are doing clinical research on the retina and PUFAs -and how they relate -and question them. Just put the doctor's name and the word " contact " into google.com and you should at least come up with an email address. The good news is that based on such a huge amount of easy to find credible information when it comes to vision and PUFAs -if you do go to a nutritionist that thinks you are crazy or laughs at you when you bring up how you believe fish oil is helping, you'll know to walk out. Actually -based on the amount of clinical work with the Omega's on the retina and all since the early to mid 90's -I'm quite shocked that nobody has brought this up on the LCA (?) listserve you are on. Don't worry what other's think if you are the first to post about proven clinical research, you don't have to post about your own child's anecdotal results or anything. It's not like you are posting about how fish oil makes almost all late talking children talk (apraxic/autistic, etc. too) in a few days to a few weeks without having clinical proof to back it up or anything crazy sounding like that - oh wait -that's what many of us talk about here (and obviously I for one could care less who laughs at me - I stand by it) Here is yet another poster I found on this -being that it's a holiday weekend -probably nobody has that much time to search for more -but it's that easy and quick to find with google and cable access: http://hgm2001.hgu.mrc.ac.uk/Abstracts/Publish/WorkshopsPoster/WorkshopPoster02/\ hgm0037.htm HGM2001 Poster Abstracts: 2. Mutation Detection POSTER NO: 37 Evaluation of the ELOVL4 gene in families with Retinitis Pigmentosa linked to the RP25 locus 1Guillermo Antiñolo, 2Yang Li, 1Irene Marcos, 1Salud Borrego, 2Zhengya Yu, 2Kang Zhang 1Unidad de Genética Médica y Diagnóstico Prenatal. Hospitales Universitarios Virgen del RocÃo, Sevilla. Spain, 2Cole Eye Institute. Cleveland Clinic Foundation, Cleveland. Ohio. USA RP25, a locus for autosomal recessive Retinitis Pigmentosa (arRP), has been mapped to chromosome 6q between D6S257 and D6S1644, overlapping with other loci for retinal dystrophy phenotypes such as autosomal dominant Stargardt-like disease (STGD3), autosomal dominant macular atrophy (adMD), autosomal dominant cone-rod dystrophy (CORD7), and Leber Congenital Amaurosis (LCA5). Recently, the gene responsible for STGD3 and adMD, ELOVL4, has been identified. This gene encodes a protein with similarities to the ELO family of proteins that may be involved in the synthesis of polyunsaturated fatty acids (PUFA) in the retina, such as docosahexaenoic acid (DHA). DHA represents 50% of PUFA in the outer segment of the photoreceptor cells and plays a crucial role in photoreceptor cell functions. ELOVL4 was considered as an interesting candidate gene for RP25 due to its localization within the critical RP25 region and its potential role in DHA synthesis. After direct molecular analysis of the coding sequence and the intron-extron boundaries two heterozygous variations were identified in one RP patient. Both of which (IVS2-99T->C and M299V) have been previously described as non-pathogenic polymorphisms. However, we did not detect any pathogenic variation in the ELOVL4 gene in the RP patients. It is, therefore, unlikely that the phenotypes STGD3/adMD and RP25 are allelic variants of the same gene. Nevertheless, a role of this gene in other inherited forms of RP needs to be elucidated. Oh -and by the way -too funny when I checked the one link http://www.krasnow.gmu.edu/ascoli/Teaching/Psyc372_01/Cla11.html I searched earlier about parrots and apraxic children language/brain links -look what I found: " Programs for teaching language to dysfunctional children: Dr. Pepperberg's training techniques are being used, with some success, for developmentally-delayed children; might the procedures also work for children with other types of deficits? " http://www.alexfoundation.org/ ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2002 Report Share Posted August 2, 2002 Thanks Barbara! I think I am definately going to increase 's private speech. He currently only goes once a week. I talked to his current SLP and she said he is borderline apraxia, but definately has a severe phonological problem. The mistakes his makes with various words are consistently the same which she said is not the case with apraxia. He does omit many sounds and she is going to start him on the kit they use with kids who have apraxia. Glad to hear you had good luck with the proefa. That sounds encouraging. Also he had just started OT at the end of the school year. I'll be interested to see what she does with him when school starts this year. I have already taken to a developmental pediatrician. I guess a pediatric neurologist might be our next thing to try. Thanks again for the advice. Lsia Quote Link to comment Share on other sites More sharing options...
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