Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 I agree that at this point it's not worthwhile to continue pursuing the right diagnosis. Instead invest in treatment with a Dan doctor. Abnormal amino acid levels is a common finding in children with ASD. If you did more lab work, you might find other nutritional deficiencies, and addressing them may help her significantly. In addition to omega 3 fatty acids, I'd suggest giving her a high quality multi-vitamin and mineral (like spectrum support II from brainchildnutritionals.com), l-carnosine (carnaware.com, 4 caps/day), and essential GSH from wellnesshealth.com. If she is low in B12 and other B vitamins (you could test for this), I would give her a B complex every day and use methyl B12 injections. A Dan doctor can do testing to determine what medical issues may be playing a part in her delays. My daughter had unusual flexibility when she was Elianna's age too. It has improved, partly because of OT, but I think more due to the supplements we've given her. Her neurologist told us that the flexibility was due to very poor muscle tone. Does she have low carnitine levels? Low carnitine levels contribute to poor tone. > > Hey there. I was just wondering if there was anybody out there who > can give me a few answers- maybe your child has simmilar symptoms to > my daughter. Elianna is 20 months old, has visited at least ten > different doctors, and still no diagnosis. It doesn't help that we > are in the army, and the overall approach to things like this are > hurry up and wait. She exibits absoloutley no expressive language, > but understands everything. She was seen in a child development > clinic, and they said that she was of normal intelligence, had above > average gross motor skills, and reccomended speech therapy. The > problem? There is a 3 month wait to get in. She was evaluated at > having the receptive language skills of a 20 month old, but the > expressive language skills of an 11 month old. She babbles a few > vowel sounds, and 3 connsonants. She has abnormal plasma amino > acids, but not in a pattern that signifies any specific disorder. > She has Proximal Renal Tubular Acidosis, which is linked to > mitochondrial disorders, but after a huge battery of tests, doctors > have been unable to diagnose which one she might have. She also has > unusual flexibility that they attributed to loose ligaments. She > has also been diagnosed with failure to thrive. At 20 months old, > she is 18 pound (below the 3rd percentile) and in at the 10th > percentile for height. Her mouth seems to function properly (ie: she > can smile, stick out her tongue, lick, chew and swallow normally) > One Dr. things she has developmental apraxia of speech, another > suspects expressive language disorder> note: neither one of these > Dr's are speech pathologists. They were just reading out of a > pediatric reference. Any ideas??? I don't even know where to > begin. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 makes some valid points. However, I would like to add that a diagnosis, while not required, often comes in very handy Our SLP and a consultant agreed that had apraxia and our Developmental Pediatrician concurred. We have had no problems geting the 1:1, frequent services that she needs (4 x 30 speech, 2 x 30 OT, therapeutic playgroup taught by a SLP 2 x 90) and I believe that is because we have the " weight " of a diagnosis from a well-respected Devleopmental Pediatrician behind us. Just my 2 cents. Warm regards, ****************** (Rochester, NY) Mom to , 3.3 years, Verbal Apraxia & , 1.1 years (and babbling away!) ________________________________ From: [mailto: ] On Behalf Of bigcheech91 Sent: Thursday, September 07, 2006 8:37 AM Subject: [ ] Re: Need a diagnosis!!! I think the most important thing to remember is that you usually don't need a diagnosis -- you need appropriate help. Many of us on this board have children with different labels who receive similar assistance. There is no concensus on what to call some disorders and it is also difficult to be sure what a child is dealing with at such a young age. Years from now, you'll probably say " oh that's why she was doing that! " While you are waiting for speech therapy to start, there are things you can do. Biomedical treatment can be started immediately. People on this board tend to use Omega 3-6-9 fish oil and now natural Vitamin E (d-alpha and d-gamma types). There is a lot of information out there regarding treatment for autistic children that also benefits children with other developmental problems. DAN practictioners are doctors and other medical professionals who address biomedical issues. DAN stands for " defeat autism now " and is not a medical specialty per se. Some DANs are not doctors. This route can be expensive and you may not even live near a good DAN, but there is a lot of information on the web -- check out the group, www.danasview.net, www.enzymestuff.com, etc. for great links to some of the sites. Buy " The Late Talker " and " The Out-of-Sync Child Has Fun " . The first is a thorough, parent-friendly book on speech/language issues. Both have exercises and activities that you as a parent can start today with your child to work on her oral-motor capabilities. The latter book has many activities to address sensory integration dysfunction, and it's also very fun. Has your daughter had an occupational therapy or physical therapy evaluation? This was not recommended by anyone we saw, but it turned out to be very important for my son. OT helps with tone, motor skills, and sensory issues. PT usually works on tone and motor skills as well. You can read about sensory issues in " The Out- of-Sync Child " and " The Sensory-Sensitive Child " . That should get you started. 20 months is nice and early to start intervention, so try to stay positive and optimistic. It will get easier! Good luck! Email me offline if you have any questions. in NJ > > Hey there. I was just wondering if there was anybody out there who > can give me a few answers- maybe your child has simmilar symptoms to > my daughter. Elianna is 20 months old, has visited at least ten > different doctors, and still no diagnosis. It doesn't help that we > are in the army, and the overall approach to things like this are > hurry up and wait. She exibits absoloutley no expressive language, > but understands everything. She was seen in a child development > clinic, and they said that she was of normal intelligence, had above > average gross motor skills, and reccomended speech therapy. The > problem? There is a 3 month wait to get in. She was evaluated at > having the receptive language skills of a 20 month old, but the > expressive language skills of an 11 month old. She babbles a few > vowel sounds, and 3 connsonants. She has abnormal plasma amino > acids, but not in a pattern that signifies any specific disorder. > She has Proximal Renal Tubular Acidosis, which is linked to > mitochondrial disorders, but after a huge battery of tests, doctors > have been unable to diagnose which one she might have. She also has > unusual flexibility that they attributed to loose ligaments. She > has also been diagnosed with failure to thrive. At 20 months old, > she is 18 pound (below the 3rd percentile) and in at the 10th > percentile for height. Her mouth seems to function properly (ie: she > can smile, stick out her tongue, lick, chew and swallow normally) > One Dr. things she has developmental apraxia of speech, another > suspects expressive language disorder> note: neither one of these > Dr's are speech pathologists. They were just reading out of a > pediatric reference. Any ideas??? I don't even know where to > begin. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 My child understands everything but he cannot speak words I can understand except mama, dada, nana, and no. He has many approximations like " Mama oh oh ee " for " Mama cocoa please " . He has been diagnosed with dyspraxia, apraxia and dysarthria because he cannot control his tongue that well. He also has hypotonia (low tone in his cheeks). A 3 month wait is not really that long. If my private insurance company wouldn't pay I'd have to be on a year waiting list at United Cerebral Palsy Foundation and 2 years for University of Central Florida's speech language program! (I live in Central FL) > > Hey there. I was just wondering if there was anybody out there who > can give me a few answers- maybe your child has simmilar symptoms to > my daughter. Elianna is 20 months old, has visited at least ten > different doctors, and still no diagnosis. It doesn't help that we > are in the army, and the overall approach to things like this are > hurry up and wait. She exibits absoloutley no expressive language, > but understands everything. She was seen in a child development > clinic, and they said that she was of normal intelligence, had above > average gross motor skills, and reccomended speech therapy. The > problem? There is a 3 month wait to get in. She was evaluated at > having the receptive language skills of a 20 month old, but the > expressive language skills of an 11 month old. She babbles a few > vowel sounds, and 3 connsonants. She has abnormal plasma amino > acids, but not in a pattern that signifies any specific disorder. > She has Proximal Renal Tubular Acidosis, which is linked to > mitochondrial disorders, but after a huge battery of tests, doctors > have been unable to diagnose which one she might have. She also has > unusual flexibility that they attributed to loose ligaments. She > has also been diagnosed with failure to thrive. At 20 months old, > she is 18 pound (below the 3rd percentile) and in at the 10th > percentile for height. Her mouth seems to function properly (ie: she > can smile, stick out her tongue, lick, chew and swallow normally) > One Dr. things she has developmental apraxia of speech, another > suspects expressive language disorder> note: neither one of these > Dr's are speech pathologists. They were just reading out of a > pediatric reference. Any ideas??? I don't even know where to > begin. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Hi, i have a question about your daughter's diagnosis of " failure to thrive. " Was she a preemie to begin with? My neice was what they call a super premie and today she is 28 months old and only 19 pounds. My sister is really concerned about her growth...can you expand anymore about what the doctor's have told you about this? Thanks so much! Amy (mom to adorable Hailey 3yrs. old and apraxic) [ ] Need a diagnosis!!! Hey there. I was just wondering if there was anybody out there who can give me a few answers- maybe your child has simmilar symptoms to my daughter. Elianna is 20 months old, has visited at least ten different doctors, and still no diagnosis. It doesn't help that we are in the army, and the overall approach to things like this are hurry up and wait. She exibits absoloutley no expressive language, but understands everything. She was seen in a child development clinic, and they said that she was of normal intelligence, had above average gross motor skills, and reccomended speech therapy. The problem? There is a 3 month wait to get in. She was evaluated at having the receptive language skills of a 20 month old, but the expressive language skills of an 11 month old. She babbles a few vowel sounds, and 3 connsonants. She has abnormal plasma amino acids, but not in a pattern that signifies any specific disorder. She has Proximal Renal Tubular Acidosis, which is linked to mitochondrial disorders, but after a huge battery of tests, doctors have been unable to diagnose which one she might have. She also has unusual flexibility that they attributed to loose ligaments. She has also been diagnosed with failure to thrive. At 20 months old, she is 18 pound (below the 3rd percentile) and in at the 10th percentile for height. Her mouth seems to function properly (ie: she can smile, stick out her tongue, lick, chew and swallow normally) One Dr. things she has developmental apraxia of speech, another suspects expressive language disorder> note: neither one of these Dr's are speech pathologists. They were just reading out of a pediatric reference. Any ideas??? I don't even know where to begin. ________________________________________________________________________ Check out AOL.com today. Breaking news, video search, pictures, email and IM. All on demand. Always Free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 kingdogforlife <kingdogforlife@...> wrote: " She was seen in a child development clinic, and they said that she was of normal intelligence, had above average gross motor skills, and reccomended speech therapy " This sounds a lot like my son at that age. He has verbal apraxia and auditory processing difficulties. His gross motor and fine motor skills are amazing. He's in speech therapy and is catching up wonderfully with his speech, now we're mostly working on the auditory processing. What really helped my son was to put him in speech therapy with a speech therapist that was well trained in apraxia. Amazingly they are many that are not! She was trained in prompt and kaufman methods of speech therapy. Also, we do the ProEfa fish oil and have started Vitamin E. With your daughters other conditions I would definitely check with a doctor before starting any supplements. I'm sorry I'm not much more help than that but I did want you to know my son with verbal apraxia sounded much the same as your daughter. Amy D. Hey there. I was just wondering if there was anybody out there who can give me a few answers- maybe your child has simmilar symptoms to my daughter. Elianna is 20 months old, has visited at least ten different doctors, and still no diagnosis. It doesn't help that we are in the army, and the overall approach to things like this are hurry up and wait. She exibits absoloutley no expressive language, but understands everything. She was seen in a child development clinic, and they said that she was of normal intelligence, had above average gross motor skills, and reccomended speech therapy. The problem? There is a 3 month wait to get in. She was evaluated at having the receptive language skills of a 20 month old, but the expressive language skills of an 11 month old. She babbles a few vowel sounds, and 3 connsonants. She has abnormal plasma amino acids, but not in a pattern that signifies any specific disorder. She has Proximal Renal Tubular Acidosis, which is linked to mitochondrial disorders, but after a huge battery of tests, doctors have been unable to diagnose which one she might have. She also has unusual flexibility that they attributed to loose ligaments. She has also been diagnosed with failure to thrive. At 20 months old, she is 18 pound (below the 3rd percentile) and in at the 10th percentile for height. Her mouth seems to function properly (ie: she can smile, stick out her tongue, lick, chew and swallow normally) One Dr. things she has developmental apraxia of speech, another suspects expressive language disorder> note: neither one of these Dr's are speech pathologists. They were just reading out of a pediatric reference. Any ideas??? I don't even know where to begin. --------------------------------- Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 I agree that at this point it's not worthwhile to continue pursuing the right diagnosis. Instead invest in treatment with a Dan doctor. Abnormal amino acid levels is a common finding in children with ASD. If you did more lab work, you might find other nutritional deficiencies, and addressing them may help her significantly. In addition to omega 3 fatty acids, I'd suggest giving her a high quality multi-vitamin and mineral (like spectrum support II from brainchildnutritionals.com), l-carnosine (carnaware.com, 4 caps/day), and essential GSH from wellnesshealth.com. If she is low in B12 and other B vitamins (you could test for this), I would give her a B complex every day and use methyl B12 injections. A Dan doctor can do testing to determine what medical issues may be playing a part in her delays. My daughter had unusual flexibility when she was Elianna's age too. It has improved, partly because of OT, but I think more due to the supplements we've given her. Her neurologist told us that the flexibility was due to very poor muscle tone. Does she have low carnitine levels? Low carnitine levels contribute to poor tone. > > Hey there. I was just wondering if there was anybody out there who > can give me a few answers- maybe your child has simmilar symptoms to > my daughter. Elianna is 20 months old, has visited at least ten > different doctors, and still no diagnosis. It doesn't help that we > are in the army, and the overall approach to things like this are > hurry up and wait. She exibits absoloutley no expressive language, > but understands everything. She was seen in a child development > clinic, and they said that she was of normal intelligence, had above > average gross motor skills, and reccomended speech therapy. The > problem? There is a 3 month wait to get in. She was evaluated at > having the receptive language skills of a 20 month old, but the > expressive language skills of an 11 month old. She babbles a few > vowel sounds, and 3 connsonants. She has abnormal plasma amino > acids, but not in a pattern that signifies any specific disorder. > She has Proximal Renal Tubular Acidosis, which is linked to > mitochondrial disorders, but after a huge battery of tests, doctors > have been unable to diagnose which one she might have. She also has > unusual flexibility that they attributed to loose ligaments. She > has also been diagnosed with failure to thrive. At 20 months old, > she is 18 pound (below the 3rd percentile) and in at the 10th > percentile for height. Her mouth seems to function properly (ie: she > can smile, stick out her tongue, lick, chew and swallow normally) > One Dr. things she has developmental apraxia of speech, another > suspects expressive language disorder> note: neither one of these > Dr's are speech pathologists. They were just reading out of a > pediatric reference. Any ideas??? I don't even know where to > begin. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 makes some valid points. However, I would like to add that a diagnosis, while not required, often comes in very handy Our SLP and a consultant agreed that had apraxia and our Developmental Pediatrician concurred. We have had no problems geting the 1:1, frequent services that she needs (4 x 30 speech, 2 x 30 OT, therapeutic playgroup taught by a SLP 2 x 90) and I believe that is because we have the " weight " of a diagnosis from a well-respected Devleopmental Pediatrician behind us. Just my 2 cents. Warm regards, ****************** (Rochester, NY) Mom to , 3.3 years, Verbal Apraxia & , 1.1 years (and babbling away!) ________________________________ From: [mailto: ] On Behalf Of bigcheech91 Sent: Thursday, September 07, 2006 8:37 AM Subject: [ ] Re: Need a diagnosis!!! I think the most important thing to remember is that you usually don't need a diagnosis -- you need appropriate help. Many of us on this board have children with different labels who receive similar assistance. There is no concensus on what to call some disorders and it is also difficult to be sure what a child is dealing with at such a young age. Years from now, you'll probably say " oh that's why she was doing that! " While you are waiting for speech therapy to start, there are things you can do. Biomedical treatment can be started immediately. People on this board tend to use Omega 3-6-9 fish oil and now natural Vitamin E (d-alpha and d-gamma types). There is a lot of information out there regarding treatment for autistic children that also benefits children with other developmental problems. DAN practictioners are doctors and other medical professionals who address biomedical issues. DAN stands for " defeat autism now " and is not a medical specialty per se. Some DANs are not doctors. This route can be expensive and you may not even live near a good DAN, but there is a lot of information on the web -- check out the group, www.danasview.net, www.enzymestuff.com, etc. for great links to some of the sites. Buy " The Late Talker " and " The Out-of-Sync Child Has Fun " . The first is a thorough, parent-friendly book on speech/language issues. Both have exercises and activities that you as a parent can start today with your child to work on her oral-motor capabilities. The latter book has many activities to address sensory integration dysfunction, and it's also very fun. Has your daughter had an occupational therapy or physical therapy evaluation? This was not recommended by anyone we saw, but it turned out to be very important for my son. OT helps with tone, motor skills, and sensory issues. PT usually works on tone and motor skills as well. You can read about sensory issues in " The Out- of-Sync Child " and " The Sensory-Sensitive Child " . That should get you started. 20 months is nice and early to start intervention, so try to stay positive and optimistic. It will get easier! Good luck! Email me offline if you have any questions. in NJ > > Hey there. I was just wondering if there was anybody out there who > can give me a few answers- maybe your child has simmilar symptoms to > my daughter. Elianna is 20 months old, has visited at least ten > different doctors, and still no diagnosis. It doesn't help that we > are in the army, and the overall approach to things like this are > hurry up and wait. She exibits absoloutley no expressive language, > but understands everything. She was seen in a child development > clinic, and they said that she was of normal intelligence, had above > average gross motor skills, and reccomended speech therapy. The > problem? There is a 3 month wait to get in. She was evaluated at > having the receptive language skills of a 20 month old, but the > expressive language skills of an 11 month old. She babbles a few > vowel sounds, and 3 connsonants. She has abnormal plasma amino > acids, but not in a pattern that signifies any specific disorder. > She has Proximal Renal Tubular Acidosis, which is linked to > mitochondrial disorders, but after a huge battery of tests, doctors > have been unable to diagnose which one she might have. She also has > unusual flexibility that they attributed to loose ligaments. She > has also been diagnosed with failure to thrive. At 20 months old, > she is 18 pound (below the 3rd percentile) and in at the 10th > percentile for height. Her mouth seems to function properly (ie: she > can smile, stick out her tongue, lick, chew and swallow normally) > One Dr. things she has developmental apraxia of speech, another > suspects expressive language disorder> note: neither one of these > Dr's are speech pathologists. They were just reading out of a > pediatric reference. Any ideas??? I don't even know where to > begin. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 My child understands everything but he cannot speak words I can understand except mama, dada, nana, and no. He has many approximations like " Mama oh oh ee " for " Mama cocoa please " . He has been diagnosed with dyspraxia, apraxia and dysarthria because he cannot control his tongue that well. He also has hypotonia (low tone in his cheeks). A 3 month wait is not really that long. If my private insurance company wouldn't pay I'd have to be on a year waiting list at United Cerebral Palsy Foundation and 2 years for University of Central Florida's speech language program! (I live in Central FL) > > Hey there. I was just wondering if there was anybody out there who > can give me a few answers- maybe your child has simmilar symptoms to > my daughter. Elianna is 20 months old, has visited at least ten > different doctors, and still no diagnosis. It doesn't help that we > are in the army, and the overall approach to things like this are > hurry up and wait. She exibits absoloutley no expressive language, > but understands everything. She was seen in a child development > clinic, and they said that she was of normal intelligence, had above > average gross motor skills, and reccomended speech therapy. The > problem? There is a 3 month wait to get in. She was evaluated at > having the receptive language skills of a 20 month old, but the > expressive language skills of an 11 month old. She babbles a few > vowel sounds, and 3 connsonants. She has abnormal plasma amino > acids, but not in a pattern that signifies any specific disorder. > She has Proximal Renal Tubular Acidosis, which is linked to > mitochondrial disorders, but after a huge battery of tests, doctors > have been unable to diagnose which one she might have. She also has > unusual flexibility that they attributed to loose ligaments. She > has also been diagnosed with failure to thrive. At 20 months old, > she is 18 pound (below the 3rd percentile) and in at the 10th > percentile for height. Her mouth seems to function properly (ie: she > can smile, stick out her tongue, lick, chew and swallow normally) > One Dr. things she has developmental apraxia of speech, another > suspects expressive language disorder> note: neither one of these > Dr's are speech pathologists. They were just reading out of a > pediatric reference. Any ideas??? I don't even know where to > begin. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 When your son wasn't really talking, was he still making vocalizations? My daughter will bark like a dog on command, and also imitates a shark (growl) and a horse (she makes a pfff sound, like a horse blowing out air). Do you know if children with verbal apraxia vocalize on command? She just started saying mamma, but not in reference to me specifically. She uses the tiltle for all people. Daddy is mamma, her brother is mamma, etc. Thanks for your input. It is encouraging to know that your son exibited simmilar symptoms and is now catching up. Amy <acdudick@...> wrote: kingdogforlife <kingdogforlife@...> wrote: " She was seen in a child development clinic, and they said that she was of normal intelligence, had above average gross motor skills, and reccomended speech therapy " This sounds a lot like my son at that age. He has verbal apraxia and auditory processing difficulties. His gross motor and fine motor skills are amazing. He's in speech therapy and is catching up wonderfully with his speech, now we're mostly working on the auditory processing. What really helped my son was to put him in speech therapy with a speech therapist that was well trained in apraxia. Amazingly they are many that are not! She was trained in prompt and kaufman methods of speech therapy. Also, we do the ProEfa fish oil and have started Vitamin E. With your daughters other conditions I would definitely check with a doctor before starting any supplements. I'm sorry I'm not much more help than that but I did want you to know my son with verbal apraxia sounded much the same as your daughter. Amy D. Hey there. I was just wondering if there was anybody out there who can give me a few answers- maybe your child has simmilar symptoms to my daughter. Elianna is 20 months old, has visited at least ten different doctors, and still no diagnosis. It doesn't help that we are in the army, and the overall approach to things like this are hurry up and wait. She exibits absoloutley no expressive language, but understands everything. She was seen in a child development clinic, and they said that she was of normal intelligence, had above average gross motor skills, and reccomended speech therapy. The problem? There is a 3 month wait to get in. She was evaluated at having the receptive language skills of a 20 month old, but the expressive language skills of an 11 month old. She babbles a few vowel sounds, and 3 connsonants. She has abnormal plasma amino acids, but not in a pattern that signifies any specific disorder. She has Proximal Renal Tubular Acidosis, which is linked to mitochondrial disorders, but after a huge battery of tests, doctors have been unable to diagnose which one she might have. She also has unusual flexibility that they attributed to loose ligaments. She has also been diagnosed with failure to thrive. At 20 months old, she is 18 pound (below the 3rd percentile) and in at the 10th percentile for height. Her mouth seems to function properly (ie: she can smile, stick out her tongue, lick, chew and swallow normally) One Dr. things she has developmental apraxia of speech, another suspects expressive language disorder> note: neither one of these Dr's are speech pathologists. They were just reading out of a pediatric reference. Any ideas??? I don't even know where to begin. --------------------------------- Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Hi, i have a question about your daughter's diagnosis of " failure to thrive. " Was she a preemie to begin with? My neice was what they call a super premie and today she is 28 months old and only 19 pounds. My sister is really concerned about her growth...can you expand anymore about what the doctor's have told you about this? Thanks so much! Amy (mom to adorable Hailey 3yrs. old and apraxic) [ ] Need a diagnosis!!! Hey there. I was just wondering if there was anybody out there who can give me a few answers- maybe your child has simmilar symptoms to my daughter. Elianna is 20 months old, has visited at least ten different doctors, and still no diagnosis. It doesn't help that we are in the army, and the overall approach to things like this are hurry up and wait. She exibits absoloutley no expressive language, but understands everything. She was seen in a child development clinic, and they said that she was of normal intelligence, had above average gross motor skills, and reccomended speech therapy. The problem? There is a 3 month wait to get in. She was evaluated at having the receptive language skills of a 20 month old, but the expressive language skills of an 11 month old. She babbles a few vowel sounds, and 3 connsonants. She has abnormal plasma amino acids, but not in a pattern that signifies any specific disorder. She has Proximal Renal Tubular Acidosis, which is linked to mitochondrial disorders, but after a huge battery of tests, doctors have been unable to diagnose which one she might have. She also has unusual flexibility that they attributed to loose ligaments. She has also been diagnosed with failure to thrive. At 20 months old, she is 18 pound (below the 3rd percentile) and in at the 10th percentile for height. Her mouth seems to function properly (ie: she can smile, stick out her tongue, lick, chew and swallow normally) One Dr. things she has developmental apraxia of speech, another suspects expressive language disorder> note: neither one of these Dr's are speech pathologists. They were just reading out of a pediatric reference. Any ideas??? I don't even know where to begin. ________________________________________________________________________ Check out AOL.com today. Breaking news, video search, pictures, email and IM. All on demand. Always Free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 kingdogforlife <kingdogforlife@...> wrote: " She was seen in a child development clinic, and they said that she was of normal intelligence, had above average gross motor skills, and reccomended speech therapy " This sounds a lot like my son at that age. He has verbal apraxia and auditory processing difficulties. His gross motor and fine motor skills are amazing. He's in speech therapy and is catching up wonderfully with his speech, now we're mostly working on the auditory processing. What really helped my son was to put him in speech therapy with a speech therapist that was well trained in apraxia. Amazingly they are many that are not! She was trained in prompt and kaufman methods of speech therapy. Also, we do the ProEfa fish oil and have started Vitamin E. With your daughters other conditions I would definitely check with a doctor before starting any supplements. I'm sorry I'm not much more help than that but I did want you to know my son with verbal apraxia sounded much the same as your daughter. Amy D. Hey there. I was just wondering if there was anybody out there who can give me a few answers- maybe your child has simmilar symptoms to my daughter. Elianna is 20 months old, has visited at least ten different doctors, and still no diagnosis. It doesn't help that we are in the army, and the overall approach to things like this are hurry up and wait. She exibits absoloutley no expressive language, but understands everything. She was seen in a child development clinic, and they said that she was of normal intelligence, had above average gross motor skills, and reccomended speech therapy. The problem? There is a 3 month wait to get in. She was evaluated at having the receptive language skills of a 20 month old, but the expressive language skills of an 11 month old. She babbles a few vowel sounds, and 3 connsonants. She has abnormal plasma amino acids, but not in a pattern that signifies any specific disorder. She has Proximal Renal Tubular Acidosis, which is linked to mitochondrial disorders, but after a huge battery of tests, doctors have been unable to diagnose which one she might have. She also has unusual flexibility that they attributed to loose ligaments. She has also been diagnosed with failure to thrive. At 20 months old, she is 18 pound (below the 3rd percentile) and in at the 10th percentile for height. Her mouth seems to function properly (ie: she can smile, stick out her tongue, lick, chew and swallow normally) One Dr. things she has developmental apraxia of speech, another suspects expressive language disorder> note: neither one of these Dr's are speech pathologists. They were just reading out of a pediatric reference. Any ideas??? I don't even know where to begin. --------------------------------- Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 When your son wasn't really talking, was he still making vocalizations? My daughter will bark like a dog on command, and also imitates a shark (growl) and a horse (she makes a pfff sound, like a horse blowing out air). Do you know if children with verbal apraxia vocalize on command? She just started saying mamma, but not in reference to me specifically. She uses the tiltle for all people. Daddy is mamma, her brother is mamma, etc. Thanks for your input. It is encouraging to know that your son exibited simmilar symptoms and is now catching up. Amy <acdudick@...> wrote: kingdogforlife <kingdogforlife@...> wrote: " She was seen in a child development clinic, and they said that she was of normal intelligence, had above average gross motor skills, and reccomended speech therapy " This sounds a lot like my son at that age. He has verbal apraxia and auditory processing difficulties. His gross motor and fine motor skills are amazing. He's in speech therapy and is catching up wonderfully with his speech, now we're mostly working on the auditory processing. What really helped my son was to put him in speech therapy with a speech therapist that was well trained in apraxia. Amazingly they are many that are not! She was trained in prompt and kaufman methods of speech therapy. Also, we do the ProEfa fish oil and have started Vitamin E. With your daughters other conditions I would definitely check with a doctor before starting any supplements. I'm sorry I'm not much more help than that but I did want you to know my son with verbal apraxia sounded much the same as your daughter. Amy D. Hey there. I was just wondering if there was anybody out there who can give me a few answers- maybe your child has simmilar symptoms to my daughter. Elianna is 20 months old, has visited at least ten different doctors, and still no diagnosis. It doesn't help that we are in the army, and the overall approach to things like this are hurry up and wait. She exibits absoloutley no expressive language, but understands everything. She was seen in a child development clinic, and they said that she was of normal intelligence, had above average gross motor skills, and reccomended speech therapy. The problem? There is a 3 month wait to get in. She was evaluated at having the receptive language skills of a 20 month old, but the expressive language skills of an 11 month old. She babbles a few vowel sounds, and 3 connsonants. She has abnormal plasma amino acids, but not in a pattern that signifies any specific disorder. She has Proximal Renal Tubular Acidosis, which is linked to mitochondrial disorders, but after a huge battery of tests, doctors have been unable to diagnose which one she might have. She also has unusual flexibility that they attributed to loose ligaments. She has also been diagnosed with failure to thrive. At 20 months old, she is 18 pound (below the 3rd percentile) and in at the 10th percentile for height. Her mouth seems to function properly (ie: she can smile, stick out her tongue, lick, chew and swallow normally) One Dr. things she has developmental apraxia of speech, another suspects expressive language disorder> note: neither one of these Dr's are speech pathologists. They were just reading out of a pediatric reference. Any ideas??? I don't even know where to begin. --------------------------------- Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 My failure to thrive child had a hole in his heart, which was making him work four times as hard as a normal child just to keep alive. Sometimes failure to thrive issues can be surgically corrected. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 He was making sounds.Before speech he could also imitate some sounds I would say to him too.. What has taken the longest to come is his spontaneous speech (and of course his auditory processing). I would (and still do) work on his speech homework with him over and over. He would say the word great after I said it, but when it came to spontaneously saying it he couldn't do it. He still has trouble with some spontaneous speech. He also goes through stages of stuttering. His private speech therapist (and this group) said it wasn't a true stuttering issue, just the motor planning involved in getting the words out. The differences in his imitation speech and spontaneous speech is what kept the battle between myself and his public school speech therapist going. She said he didn't have apraxia because he could imitate a word. I said he did because he couldn't spontaneously say it.. Of course all this was after he started talking. I really think it's key to find a speech therapist that knows what s/he is doing. I remember starting off with the tape that sang the alphabet! It's still in my head.. " Apple, Apple, A, A, A) Anyone remember that one?? LOL! My son has made great progress. He also has a long way to go. I credit his ST, OT and the info I got from this group for all the progress he's made! Like the fish oils, etc. But again we have a long way to go.. I can't imagine where he'd be if I didn't find the resources we did.. I wishing you the best in finding the right help! Amy D. kent bailey <kingdogforlife@...> wrote: When your son wasn't really talking, was he still making vocalizations? My daughter will bark like a dog on command, and also imitates a shark (growl) and a horse (she makes a pfff sound, like a horse blowing out air). Do you know if children with verbal apraxia vocalize on command? She just started saying mamma, but not in reference to me specifically. She uses the tiltle for all people. Daddy is mamma, her brother is mamma, etc. Thanks for your input. It is encouraging to know that your son exibited simmilar symptoms and is now catching up. Amy <acdudick@...> wrote: kingdogforlife <kingdogforlife@...> wrote: " She was seen in a child development clinic, and they said that she was of normal intelligence, had above average gross motor skills, and reccomended speech therapy " This sounds a lot like my son at that age. He has verbal apraxia and auditory processing difficulties. His gross motor and fine motor skills are amazing. He's in speech therapy and is catching up wonderfully with his speech, now we're mostly working on the auditory processing. What really helped my son was to put him in speech therapy with a speech therapist that was well trained in apraxia. Amazingly they are many that are not! She was trained in prompt and kaufman methods of speech therapy. Also, we do the ProEfa fish oil and have started Vitamin E. With your daughters other conditions I would definitely check with a doctor before starting any supplements. I'm sorry I'm not much more help than that but I did want you to know my son with verbal apraxia sounded much the same as your daughter. Amy D. Hey there. I was just wondering if there was anybody out there who can give me a few answers- maybe your child has simmilar symptoms to my daughter. Elianna is 20 months old, has visited at least ten different doctors, and still no diagnosis. It doesn't help that we are in the army, and the overall approach to things like this are hurry up and wait. She exibits absoloutley no expressive language, but understands everything. She was seen in a child development clinic, and they said that she was of normal intelligence, had above average gross motor skills, and reccomended speech therapy. The problem? There is a 3 month wait to get in. She was evaluated at having the receptive language skills of a 20 month old, but the expressive language skills of an 11 month old. She babbles a few vowel sounds, and 3 connsonants. She has abnormal plasma amino acids, but not in a pattern that signifies any specific disorder. She has Proximal Renal Tubular Acidosis, which is linked to mitochondrial disorders, but after a huge battery of tests, doctors have been unable to diagnose which one she might have. She also has unusual flexibility that they attributed to loose ligaments. She has also been diagnosed with failure to thrive. At 20 months old, she is 18 pound (below the 3rd percentile) and in at the 10th percentile for height. Her mouth seems to function properly (ie: she can smile, stick out her tongue, lick, chew and swallow normally) One Dr. things she has developmental apraxia of speech, another suspects expressive language disorder> note: neither one of these Dr's are speech pathologists. They were just reading out of a pediatric reference. Any ideas??? I don't even know where to begin. --------------------------------- Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 My failure to thrive child had a hole in his heart, which was making him work four times as hard as a normal child just to keep alive. Sometimes failure to thrive issues can be surgically corrected. , my oldest was a failure to thive as well, because of two complete Malrotations of the intestines, surgically fixed at 9 months my 13lb boy at 14 months is now 6'4 and 220lbs. @ 20yrs old. -- Heidi www.allaboutgage.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 Thank you so much..I will pass that info. onto my sister! Re: [ ] Need a diagnosis!!! Ellie was diagnosed with " failure to thrive " at 15 mo of age. She was a full term baby, weighing in at 6lb 3 oz. (both of my babies were small, though I gained 55 pounds with one and 30 with the other) They diagnosed her as failure to thrive due to her very poor weight gain. At 15 mo, she weighed 15 pounds. She was still wearing 3-6 mo. clothes. They have since attributed her poor weight gain to a kidney disease (Renal Tubular Acidosis) that affects both absorbtion and metabolism. My son was also labeled failure to thrive at this age, though a root cause was never found. We saw numerous nutritionists, who assured both myself and the pediatricians that the problem did not lie in caloric intake. In fact, they said that he ought to be overweight with as much as he ate. He is now nearly 4, and still quite thin for his age. We've given up looking for a cause- I honestly believe he's just genetically predisposed to being tiny . I'm only 5ft, and was very thin *before my babies* as is my entire family. He is 26 pounds as of last month. My daughters gastroenterologist (sp?) told me that there are 3 root causes of failure to thrive, aside from genetics (1) an absorbtion disorder (2) a metabolic disorder and/or (3) nutritional deficiency. They caught the RTA when they were testing for the common causes of failure to thrive (celiac disease, RTA, cystic fibrosis) Hope that helps! abellovin@... wrote: Hi, i have a question about your daughter's diagnosis of " failure to thrive. " Was she a preemie to begin with? My neice was what they call a super premie and today she is 28 months old and only 19 pounds. My sister is really concerned about her growth...can you expand anymore about what the doctor's have told you about this? Thanks so much! Amy (mom to adorable Hailey 3yrs. old and apraxic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 My failure to thrive child had a hole in his heart, which was making him work four times as hard as a normal child just to keep alive. Sometimes failure to thrive issues can be surgically corrected. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 He was making sounds.Before speech he could also imitate some sounds I would say to him too.. What has taken the longest to come is his spontaneous speech (and of course his auditory processing). I would (and still do) work on his speech homework with him over and over. He would say the word great after I said it, but when it came to spontaneously saying it he couldn't do it. He still has trouble with some spontaneous speech. He also goes through stages of stuttering. His private speech therapist (and this group) said it wasn't a true stuttering issue, just the motor planning involved in getting the words out. The differences in his imitation speech and spontaneous speech is what kept the battle between myself and his public school speech therapist going. She said he didn't have apraxia because he could imitate a word. I said he did because he couldn't spontaneously say it.. Of course all this was after he started talking. I really think it's key to find a speech therapist that knows what s/he is doing. I remember starting off with the tape that sang the alphabet! It's still in my head.. " Apple, Apple, A, A, A) Anyone remember that one?? LOL! My son has made great progress. He also has a long way to go. I credit his ST, OT and the info I got from this group for all the progress he's made! Like the fish oils, etc. But again we have a long way to go.. I can't imagine where he'd be if I didn't find the resources we did.. I wishing you the best in finding the right help! Amy D. kent bailey <kingdogforlife@...> wrote: When your son wasn't really talking, was he still making vocalizations? My daughter will bark like a dog on command, and also imitates a shark (growl) and a horse (she makes a pfff sound, like a horse blowing out air). Do you know if children with verbal apraxia vocalize on command? She just started saying mamma, but not in reference to me specifically. She uses the tiltle for all people. Daddy is mamma, her brother is mamma, etc. Thanks for your input. It is encouraging to know that your son exibited simmilar symptoms and is now catching up. Amy <acdudick@...> wrote: kingdogforlife <kingdogforlife@...> wrote: " She was seen in a child development clinic, and they said that she was of normal intelligence, had above average gross motor skills, and reccomended speech therapy " This sounds a lot like my son at that age. He has verbal apraxia and auditory processing difficulties. His gross motor and fine motor skills are amazing. He's in speech therapy and is catching up wonderfully with his speech, now we're mostly working on the auditory processing. What really helped my son was to put him in speech therapy with a speech therapist that was well trained in apraxia. Amazingly they are many that are not! She was trained in prompt and kaufman methods of speech therapy. Also, we do the ProEfa fish oil and have started Vitamin E. With your daughters other conditions I would definitely check with a doctor before starting any supplements. I'm sorry I'm not much more help than that but I did want you to know my son with verbal apraxia sounded much the same as your daughter. Amy D. Hey there. I was just wondering if there was anybody out there who can give me a few answers- maybe your child has simmilar symptoms to my daughter. Elianna is 20 months old, has visited at least ten different doctors, and still no diagnosis. It doesn't help that we are in the army, and the overall approach to things like this are hurry up and wait. She exibits absoloutley no expressive language, but understands everything. She was seen in a child development clinic, and they said that she was of normal intelligence, had above average gross motor skills, and reccomended speech therapy. The problem? There is a 3 month wait to get in. She was evaluated at having the receptive language skills of a 20 month old, but the expressive language skills of an 11 month old. She babbles a few vowel sounds, and 3 connsonants. She has abnormal plasma amino acids, but not in a pattern that signifies any specific disorder. She has Proximal Renal Tubular Acidosis, which is linked to mitochondrial disorders, but after a huge battery of tests, doctors have been unable to diagnose which one she might have. She also has unusual flexibility that they attributed to loose ligaments. She has also been diagnosed with failure to thrive. At 20 months old, she is 18 pound (below the 3rd percentile) and in at the 10th percentile for height. Her mouth seems to function properly (ie: she can smile, stick out her tongue, lick, chew and swallow normally) One Dr. things she has developmental apraxia of speech, another suspects expressive language disorder> note: neither one of these Dr's are speech pathologists. They were just reading out of a pediatric reference. Any ideas??? I don't even know where to begin. --------------------------------- Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 My failure to thrive child had a hole in his heart, which was making him work four times as hard as a normal child just to keep alive. Sometimes failure to thrive issues can be surgically corrected. , my oldest was a failure to thive as well, because of two complete Malrotations of the intestines, surgically fixed at 9 months my 13lb boy at 14 months is now 6'4 and 220lbs. @ 20yrs old. -- Heidi www.allaboutgage.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 Thank you so much..I will pass that info. onto my sister! Re: [ ] Need a diagnosis!!! Ellie was diagnosed with " failure to thrive " at 15 mo of age. She was a full term baby, weighing in at 6lb 3 oz. (both of my babies were small, though I gained 55 pounds with one and 30 with the other) They diagnosed her as failure to thrive due to her very poor weight gain. At 15 mo, she weighed 15 pounds. She was still wearing 3-6 mo. clothes. They have since attributed her poor weight gain to a kidney disease (Renal Tubular Acidosis) that affects both absorbtion and metabolism. My son was also labeled failure to thrive at this age, though a root cause was never found. We saw numerous nutritionists, who assured both myself and the pediatricians that the problem did not lie in caloric intake. In fact, they said that he ought to be overweight with as much as he ate. He is now nearly 4, and still quite thin for his age. We've given up looking for a cause- I honestly believe he's just genetically predisposed to being tiny . I'm only 5ft, and was very thin *before my babies* as is my entire family. He is 26 pounds as of last month. My daughters gastroenterologist (sp?) told me that there are 3 root causes of failure to thrive, aside from genetics (1) an absorbtion disorder (2) a metabolic disorder and/or (3) nutritional deficiency. They caught the RTA when they were testing for the common causes of failure to thrive (celiac disease, RTA, cystic fibrosis) Hope that helps! abellovin@... wrote: Hi, i have a question about your daughter's diagnosis of " failure to thrive. " Was she a preemie to begin with? My neice was what they call a super premie and today she is 28 months old and only 19 pounds. My sister is really concerned about her growth...can you expand anymore about what the doctor's have told you about this? Thanks so much! Amy (mom to adorable Hailey 3yrs. old and apraxic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 My son, too, repeats just about anything, but can't so much spontaneous speech. Is this related to apraxia? I was worried it could be a different aspect of delay. How many apraxic kids on this board repeated language (however badly the pronunciation) but were slow to use that same language spontaneously? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2006 Report Share Posted September 9, 2006 My son, too, repeats just about anything, but can't so much spontaneous speech. Is this related to apraxia? I was worried it could be a different aspect of delay. How many apraxic kids on this board repeated language (however badly the pronunciation) but were slow to use that same language spontaneously? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 Hello , My son repeats but struggles with spontaneous. A good example of my son's problem is the word spoon. If I say " go and get a spoon " he will go and get it. If I say " spoon " he will approximate it " ooon " but if i show him a spoon but don't say spoon, he know he's to say something but just makes a noise, " aaagh " . It's like his brain can't yet map to the word spoon. He's been working on the word spoon for months but it's still not mapped! However, he has managed to map some words so ultimately it is possible. Just incredibly slow! UK Mummy to 8 and Rory 6, both deaf but Rory has Apraxia/Dyspraxia [ ] Re: Need a diagnosis!!! My son, too, repeats just about anything, but can't so much spontaneous speech. Is this related to apraxia? I was worried it could be a different aspect of delay. How many apraxic kids on this board repeated language (however badly the pronunciation) but were slow to use that same language spontaneously? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 Hello , My son repeats but struggles with spontaneous. A good example of my son's problem is the word spoon. If I say " go and get a spoon " he will go and get it. If I say " spoon " he will approximate it " ooon " but if i show him a spoon but don't say spoon, he know he's to say something but just makes a noise, " aaagh " . It's like his brain can't yet map to the word spoon. He's been working on the word spoon for months but it's still not mapped! However, he has managed to map some words so ultimately it is possible. Just incredibly slow! UK Mummy to 8 and Rory 6, both deaf but Rory has Apraxia/Dyspraxia [ ] Re: Need a diagnosis!!! My son, too, repeats just about anything, but can't so much spontaneous speech. Is this related to apraxia? I was worried it could be a different aspect of delay. How many apraxic kids on this board repeated language (however badly the pronunciation) but were slow to use that same language spontaneously? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 I have noticed when my 7yr old daughter plays with a friend of hers who talks very fast and is highly energetic, she tends to copy what she says rather than converse. However, when she is with another friend of hers who has a quieter calmer play approach, she converses, asks if she wants to play etc. My daughter talks alot but you can't understand most of what she says. I think she copys/mimics/echos b/c she can't keep up with one friend vs the other one she can. karen maryebe <eberlein@...> wrote: Many/most children with apraxia have difficulty producing language, but if they can repeat a phrase easily than they could also use it spontaneously. A child repeating phrases or words that he/she is being asked to repeat is different from repeating back questions, greetings, etc. instead of answering or responding to them. Echoing instead of using the same words appropriately is a sign of autism, not apraxia. > > , > > I had interpreted it differently, but you may be right about the > imitation not being echolalia. I guess I was thinking of a friend's > child who has PDD. He can really repeat anything you say (both in > the way you mentioned " say ball " " ball " but also in the repeating TV > commericials echolalia way) but he says almost nothing spontaneously > and does not use language to communicate his wants or needs. > > Still, I thought that one of the hallmarks of apraxia was trouble > imitating and more spontaneous speech. > > Kerri > Quote Link to comment Share on other sites More sharing options...
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