Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 Thanks kristy. i've been going at quite a conservative level so perhaps i'll up the morning dosage anyway. Does the oxidising apply to Vit e too? I'm not adding that yet but plan too later. Uk Mummy to 8 deaf and Rory 6 deaf and apraxia ----- Original Message ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 , To me, it does sound like progress, and I think it's been mentioned here before that behavior gets worse or a bit wild (or maybe just age appropriate) right before a surge so that might be what the " stroppy-ness " is about. Just one small thing, I wondered when I read your post, if you might lose some of the effectiveness of the ProEFA by putting it in his sandwich spread and letting it sit till lunch. I think the oils are delicate and oxidise quickly, so perhaps you should try giving it to him at home--maybe giving his toast with the ProEFA-chocolate spread at breakfast if he likes that, or maybe mix it with apple sauce, yogurt or even pudding. I wonder if you would see improved results that way. Just a thought... Otherwise, good luck with everything, sounds like you are doing a great job! Kristi > > Hi, > > Thought I'd post an update on my son, Rory aged 6 and Omega & Vit E. It's a bit long so if you don't have time I am summarising at the beginning! > > 1. 3 weeks in > 2. No real change in speech as yet > 3. was very vocal/noisy at the weekend and bit stroppy - normally quite passive > 4. teacher says he is picking up the word recognition for new vocab much quicker. > > To start with I'd better sum up his problems... > > First of all he is deaf but he has an implant and actually hears quite well so I am putting that aside for this group. > He has severe verbal apraxia. His oral motor skills are not that impaired, his comprehension is pretty good and far far ahead of expression. His fine motor skills are very good BUT I have realised that he has a real problem with doing different things with each hand, so Playstation is impossible for him (at present) because he wants to use the joysticks for each hand and can't co-ordinate the button pushing with the right hand. In somethings he is really co- ordinated but others hopeless. Regarding his fine motor skills - he saw an occupational therapist when he was 4 because they were behind, then all of a sudden he went from only being able to draw straight lines and dots to drawing pictures! > > His pain threshold is higher than most children and i put it down to him being stoic, now i realise that could be part of the apraxia as it has been mentioned by other mums. > > His language is developing but very slowly. Yeah and no are very clear but mummy, daddy and james are not so clear. He can count to ten but 4,5,6,7,8 are the clearest. > > He has a problem with retaining information and concentration. School reports that every now and then they just lose him and it's hard to get him back on track. Also one day he can do something but the next he can't. And they know now that he is trying but just can't rather than he's not making any effort. > > He's very active and has a very happy sunny nature and loves dressing up. > > So, I have been trying omega since August but only really been successfully achieving regular dosage since going back to school three weeks ago. I am giving him two half teaspoons of the proefa liquid. One with breakfast and one with lunch - hidden in a small chocolate spread sandwich each time. i did start with the vit e but decided to stick to proefa and then add the vit e later. > > I have not seen any real increase in his speech yet but this weekend he was soooo noisy, shouting BAH Bah BAh to get our attention all the time and quite stroppy - for him. Although it meant a few more stares than normal when we were out i saw it as positive behaviour as he is really too passive and easy most of the time. > > He's been wide awake each evening and not sleeping until 10. But I am not sure that is the ProEFA as he often finds it difficult to sleep. > > I met with his teacher yesterday and the most positive result she has seen is that when he was working on new vocabulary and word recoginition, it seemed that he grasped it quicker and then has retained it. Normally it would take quite a few days if not longer but he was picking it up after one. > > So, I am hopeful and will be continuing with the ProEFA. Any comments would be appreciated. Do you think this sounds like progress? > > Regards > > > UK Mummy to 8 and Rory 6. Both Deaf with cochlear Implants > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 Thanks kristy. i've been going at quite a conservative level so perhaps i'll up the morning dosage anyway. Does the oxidising apply to Vit e too? I'm not adding that yet but plan too later. Uk Mummy to 8 deaf and Rory 6 deaf and apraxia ----- Original Message ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 The high pain theshold is sometimes an indicator of opiate levels. Have you looked into GFCF and/or enzymes? http://www.enzymestuff.com/opiatereceptors.htm <http://www.enzymestuff.com/opiatereceptors.htm> The premise of the GFCF diet is that by removing gluten and casein from the diet, it will drastically reduce the amount of the problematic peptides (gluteomorphine and caseomorphine) that interact with the opiate receptors in the body. According to the " leaky gut " theory, if these peptides are not broken down correctly and completely into amino acids, they will " leak out " of the intestines into the blood, and carried to the brain. Once at the brain, they will interact with the opioid receptors and act like heroin and morphine. Heroin, morphine, and similar substances can radically affect behavior, speech, cognitive abilities, emotions, pain thresholds, and sound sensitivity. They also react " with areas of the brain such as the temporal lobes, which are involved in speech and auditory integration. So, by removing the possible culprits, it will improve many of the behavioral and physical symptoms exhibited by autistic children such as diarrhea, constipation, hyperactivity, self-stimming, aloofness, high pain tolerance, etc. > > Thanks kristy. i've been going at quite a conservative level so perhaps i'll up the morning dosage anyway. Does the oxidising apply to Vit e too? I'm not adding that yet but plan too later. > > > Uk Mummy to 8 deaf and Rory 6 deaf and apraxia > ----- Original Message ----- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 Yes, it is not as stable in liquid form as it is in capsule, just like the omega 3. -claudia > Thanks kristy. i've been going at quite a conservative level so perhaps i'll up the morning dosage anyway. Does the oxidising apply to Vit e too? I'm not adding that yet but plan too later. > > > Uk Mummy to 8 deaf and Rory 6 deaf and apraxia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 I'm really not sure about the vit E, though my guess would be it isn't as fragile because it's sometimes added to foods and cosmetics as a preservative (though it's not a very stable one). I just feel better about preparing these supplements (ie, adding them to food, juice etc) right before they are to be consumed. That way, you know they are fresh and most effective. > > Thanks kristy. i've been going at quite a conservative level so perhaps i'll up the morning dosage anyway. Does the oxidising apply to Vit e too? I'm not adding that yet but plan too later. > > > Uk Mummy to 8 deaf and Rory 6 deaf and apraxia > ----- Original Message ----- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 The high pain theshold is sometimes an indicator of opiate levels. Have you looked into GFCF and/or enzymes? http://www.enzymestuff.com/opiatereceptors.htm <http://www.enzymestuff.com/opiatereceptors.htm> The premise of the GFCF diet is that by removing gluten and casein from the diet, it will drastically reduce the amount of the problematic peptides (gluteomorphine and caseomorphine) that interact with the opiate receptors in the body. According to the " leaky gut " theory, if these peptides are not broken down correctly and completely into amino acids, they will " leak out " of the intestines into the blood, and carried to the brain. Once at the brain, they will interact with the opioid receptors and act like heroin and morphine. Heroin, morphine, and similar substances can radically affect behavior, speech, cognitive abilities, emotions, pain thresholds, and sound sensitivity. They also react " with areas of the brain such as the temporal lobes, which are involved in speech and auditory integration. So, by removing the possible culprits, it will improve many of the behavioral and physical symptoms exhibited by autistic children such as diarrhea, constipation, hyperactivity, self-stimming, aloofness, high pain tolerance, etc. > > Thanks kristy. i've been going at quite a conservative level so perhaps i'll up the morning dosage anyway. Does the oxidising apply to Vit e too? I'm not adding that yet but plan too later. > > > Uk Mummy to 8 deaf and Rory 6 deaf and apraxia > ----- Original Message ----- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 Yes, it is not as stable in liquid form as it is in capsule, just like the omega 3. -claudia > Thanks kristy. i've been going at quite a conservative level so perhaps i'll up the morning dosage anyway. Does the oxidising apply to Vit e too? I'm not adding that yet but plan too later. > > > Uk Mummy to 8 deaf and Rory 6 deaf and apraxia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2006 Report Share Posted September 23, 2006 I'm really not sure about the vit E, though my guess would be it isn't as fragile because it's sometimes added to foods and cosmetics as a preservative (though it's not a very stable one). I just feel better about preparing these supplements (ie, adding them to food, juice etc) right before they are to be consumed. That way, you know they are fresh and most effective. > > Thanks kristy. i've been going at quite a conservative level so perhaps i'll up the morning dosage anyway. Does the oxidising apply to Vit e too? I'm not adding that yet but plan too later. > > > Uk Mummy to 8 deaf and Rory 6 deaf and apraxia > ----- Original Message ----- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 I remember the shock. We are now getting used to the " normal 3 year old thing " . We have just come so far. Cleaning out closets this weekend, and my 8 year old found ph's PEC book...wow, hard to imagine the " non-verbal " world we were in just a year ago. Enjoy it. It just keeps getting better! > Grace has been having a vocabulary explosion over the past 2 weeks > that has left everyone completely stunned. She is using 5, 6 and 7 > word sentences. She's gained all sorts of new words. Her > intelligibility (SP?) has greatly increased and you can see the wheels > turning.... she is starting to realize what she needs to do to help her > pronounce things more clearly. In other words, I don't have to cue her > as much and give as many reminders. > > Grace turned 31 months yesterday. She is becoming a little > chatter box. Here's what we're doing and what services she's > receiving.... > > Speech 2x per week (speech was on hold when the surge started) > OT for 60 min once a week > I use the level 1 of the Kaufman kit at home with her. We do 1 to 2 > drill sessions each day. > Nordic Naturals Pro EFA (2 caps) and Pro EPA (1 cap) three times a day > Vitamin E 400 i.u. twice a day > VItamin E High Gamma (300 mg) once a day > GFCF diet > > Even though she has been progressing more and more the slp just gave me > another one of her gloomy outlook scenarios stating that Grace > may still be PDD, she will likely be handicapped all her life, she may > never speak normally, blah blah blah. Fast forward to this past > Wednesday when this same slp was stunned at the things my daughter was > saying and said " see mom, I told you if you'd just be patient she'd be > fine " . Yes... my slp can be a bit of a bone head at times. Now I just > laugh it off. > > Recent sentences (that were totally clear) have been..... > > Take diaper off now please > This is all gone > I think I wet > This is brown that is red > I want paint please > > > The Omegas brought about a big change in Grace and helped with > steady progress. I truly believe we are where we are today, however, > due to vitamin E and making a daily commitment to doing the drills. We > use the Kaufman cards but we also do little drills in the car, while > we're hiking, playing, etc that I just make up as I go. I use the > alphabet as a guide and then pick a syllable. For example if I pick > the vowel sound oo then I go through the alphabet as much as possible > with her repeating me.... boo, coo, doo, foo, goo, etc. > > We've had behavior issues on and off with the vitamin E. They usually > resolved within three days or so. Once they didn't and I had to do > some detective work. Other than that we've had no problems with the > vitamin e. > > So, keep at it. The do turn the corner. I'm shocked at what I'm > seeing. Shocked but thankful. > > Kris > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 I remember the shock. We are now getting used to the " normal 3 year old thing " . We have just come so far. Cleaning out closets this weekend, and my 8 year old found ph's PEC book...wow, hard to imagine the " non-verbal " world we were in just a year ago. Enjoy it. It just keeps getting better! > Grace has been having a vocabulary explosion over the past 2 weeks > that has left everyone completely stunned. She is using 5, 6 and 7 > word sentences. She's gained all sorts of new words. Her > intelligibility (SP?) has greatly increased and you can see the wheels > turning.... she is starting to realize what she needs to do to help her > pronounce things more clearly. In other words, I don't have to cue her > as much and give as many reminders. > > Grace turned 31 months yesterday. She is becoming a little > chatter box. Here's what we're doing and what services she's > receiving.... > > Speech 2x per week (speech was on hold when the surge started) > OT for 60 min once a week > I use the level 1 of the Kaufman kit at home with her. We do 1 to 2 > drill sessions each day. > Nordic Naturals Pro EFA (2 caps) and Pro EPA (1 cap) three times a day > Vitamin E 400 i.u. twice a day > VItamin E High Gamma (300 mg) once a day > GFCF diet > > Even though she has been progressing more and more the slp just gave me > another one of her gloomy outlook scenarios stating that Grace > may still be PDD, she will likely be handicapped all her life, she may > never speak normally, blah blah blah. Fast forward to this past > Wednesday when this same slp was stunned at the things my daughter was > saying and said " see mom, I told you if you'd just be patient she'd be > fine " . Yes... my slp can be a bit of a bone head at times. Now I just > laugh it off. > > Recent sentences (that were totally clear) have been..... > > Take diaper off now please > This is all gone > I think I wet > This is brown that is red > I want paint please > > > The Omegas brought about a big change in Grace and helped with > steady progress. I truly believe we are where we are today, however, > due to vitamin E and making a daily commitment to doing the drills. We > use the Kaufman cards but we also do little drills in the car, while > we're hiking, playing, etc that I just make up as I go. I use the > alphabet as a guide and then pick a syllable. For example if I pick > the vowel sound oo then I go through the alphabet as much as possible > with her repeating me.... boo, coo, doo, foo, goo, etc. > > We've had behavior issues on and off with the vitamin E. They usually > resolved within three days or so. Once they didn't and I had to do > some detective work. Other than that we've had no problems with the > vitamin e. > > So, keep at it. The do turn the corner. I'm shocked at what I'm > seeing. Shocked but thankful. > > Kris > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Thank you for writing an update and sharing with us Chris. Congrats on getting a dynovox and best wishes that he takes to it and it opens new doors for him. Also a big AMEN to your suggestions to parents of newly diagnosed little ones! Mom to 5.8 year old apraxic karate kid > > hi everyone, > I've been on this list since my son was 3. he's going to be 7 now. > this list has been a savior for me when things were really bad and a > wealth of information. > I have some really good news, is getting a dynovox!!! so excited > and hope he takes to it. He's been doing so well in the program in > his district school. his language had really expanded and so has his > cognitive abilities. His speech is still very poor, hence the > dynovox. > does have fine and gross motor issues as well. we just found > out that he favors the left side of his body. he does not lead off > with the right foot when he goes down stairs. he used to run with > his right shoulder slightly up and hand on his chest. now he is > doing well because of this excellent pt. she really works with him > doing all kind of excercises to strengthen him. i see some much > improvement. > his fine motor he has some writing issues but they seem ok. his > biggest problem is lack of focus and impulsivity. its what he uses > to get out of a hard thing. he still has behavior but its sooo > manageable now. The more work he accomlishes the more confident he > becomes. he still needs maturity too learn to stick to it and he will > get better. he wants to get it right away. " don't we all " > > Just my little update on . i responded to bonnie e-mail that more > people with older kids should speak up. so here we are > > just a note to all the new parents with children who are apraxic. > the piece of advice i give all who get the dx is that you have to be > patient. its a long road ahead and progress at least for me has been > slow. its hard to patient when you see your child suffering but we > are all they have to look to for the love and caring they need at the > time. it does take its toll I did go through some rough times with > myself dealing with the problem but remember there is always help for > us parents too. remember to take care of yourself because no one > else will. if we are not well our children will not be. Also you > don't have to alone in getting help for child,please reach out I > tried to do it all and failed. since i reached out i have a lot of > help. > Remember our children are remarkable. I feel if a typical child had > what my son had all of sudden they would go crazy. he has his issues > but he is remarkable with what he can do with his disorder. he is > amazing at telling you stories with pantamime. if all else fails for > him he could be a street mime and make lots of $.(LOL) > Happy new year everyone > chris(mom to a remarkable paul with apraxia and emma my diva 4 year > old > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 thank you sarah chris [ ] Re: update Thank you for writing an update and sharing with us Chris. Congrats on getting a dynovox and best wishes that he takes to it and it opens new doors for him. Also a big AMEN to your suggestions to parents of newly diagnosed little ones! Mom to 5.8 year old apraxic karate kid > > hi everyone, > I've been on this list since my son was 3. he's going to be 7 now. > this list has been a savior for me when things were really bad and a > wealth of information. > I have some really good news, is getting a dynovox!!! so excited > and hope he takes to it. He's been doing so well in the program in > his district school. his language had really expanded and so has his > cognitive abilities. His speech is still very poor, hence the > dynovox. > does have fine and gross motor issues as well. we just found > out that he favors the left side of his body. he does not lead off > with the right foot when he goes down stairs. he used to run with > his right shoulder slightly up and hand on his chest. now he is > doing well because of this excellent pt. she really works with him > doing all kind of excercises to strengthen him. i see some much > improvement. > his fine motor he has some writing issues but they seem ok. his > biggest problem is lack of focus and impulsivity. its what he uses > to get out of a hard thing. he still has behavior but its sooo > manageable now. The more work he accomlishes the more confident he > becomes. he still needs maturity too learn to stick to it and he will > get better. he wants to get it right away. " don't we all " > > Just my little update on . i responded to bonnie e-mail that more > people with older kids should speak up. so here we are > > just a note to all the new parents with children who are apraxic. > the piece of advice i give all who get the dx is that you have to be > patient. its a long road ahead and progress at least for me has been > slow. its hard to patient when you see your child suffering but we > are all they have to look to for the love and caring they need at the > time. it does take its toll I did go through some rough times with > myself dealing with the problem but remember there is always help for > us parents too. remember to take care of yourself because no one > else will. if we are not well our children will not be. Also you > don't have to alone in getting help for child,please reach out I > tried to do it all and failed. since i reached out i have a lot of > help. > Remember our children are remarkable. I feel if a typical child had > what my son had all of sudden they would go crazy. he has his issues > but he is remarkable with what he can do with his disorder. he is > amazing at telling you stories with pantamime. if all else fails for > him he could be a street mime and make lots of $.(LOL) > Happy new year everyone > chris(mom to a remarkable paul with apraxia and emma my diva 4 year > old > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Thank you for writing an update and sharing with us Chris. Congrats on getting a dynovox and best wishes that he takes to it and it opens new doors for him. Also a big AMEN to your suggestions to parents of newly diagnosed little ones! Mom to 5.8 year old apraxic karate kid > > hi everyone, > I've been on this list since my son was 3. he's going to be 7 now. > this list has been a savior for me when things were really bad and a > wealth of information. > I have some really good news, is getting a dynovox!!! so excited > and hope he takes to it. He's been doing so well in the program in > his district school. his language had really expanded and so has his > cognitive abilities. His speech is still very poor, hence the > dynovox. > does have fine and gross motor issues as well. we just found > out that he favors the left side of his body. he does not lead off > with the right foot when he goes down stairs. he used to run with > his right shoulder slightly up and hand on his chest. now he is > doing well because of this excellent pt. she really works with him > doing all kind of excercises to strengthen him. i see some much > improvement. > his fine motor he has some writing issues but they seem ok. his > biggest problem is lack of focus and impulsivity. its what he uses > to get out of a hard thing. he still has behavior but its sooo > manageable now. The more work he accomlishes the more confident he > becomes. he still needs maturity too learn to stick to it and he will > get better. he wants to get it right away. " don't we all " > > Just my little update on . i responded to bonnie e-mail that more > people with older kids should speak up. so here we are > > just a note to all the new parents with children who are apraxic. > the piece of advice i give all who get the dx is that you have to be > patient. its a long road ahead and progress at least for me has been > slow. its hard to patient when you see your child suffering but we > are all they have to look to for the love and caring they need at the > time. it does take its toll I did go through some rough times with > myself dealing with the problem but remember there is always help for > us parents too. remember to take care of yourself because no one > else will. if we are not well our children will not be. Also you > don't have to alone in getting help for child,please reach out I > tried to do it all and failed. since i reached out i have a lot of > help. > Remember our children are remarkable. I feel if a typical child had > what my son had all of sudden they would go crazy. he has his issues > but he is remarkable with what he can do with his disorder. he is > amazing at telling you stories with pantamime. if all else fails for > him he could be a street mime and make lots of $.(LOL) > Happy new year everyone > chris(mom to a remarkable paul with apraxia and emma my diva 4 year > old > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 You really seem to have a good attitude. I am a mom of a 3 year old, ph. All the therapies, evals, insurance issues, special ed,etc. is new to us. Thanks for your inspiring words. By the way, what is a dynovox? Take CAre, > > hi everyone, > I've been on this list since my son was 3. he's going to be 7 now. > this list has been a savior for me when things were really bad and a > wealth of information. > I have some really good news, is getting a dynovox!!! so excited > and hope he takes to it. He's been doing so well in the program in > his district school. his language had really expanded and so has his > cognitive abilities. His speech is still very poor, hence the > dynovox. > does have fine and gross motor issues as well. we just found > out that he favors the left side of his body. he does not lead off > with the right foot when he goes down stairs. he used to run with > his right shoulder slightly up and hand on his chest. now he is > doing well because of this excellent pt. she really works with him > doing all kind of excercises to strengthen him. i see some much > improvement. > his fine motor he has some writing issues but they seem ok. his > biggest problem is lack of focus and impulsivity. its what he uses > to get out of a hard thing. he still has behavior but its sooo > manageable now. The more work he accomlishes the more confident he > becomes. he still needs maturity too learn to stick to it and he will > get better. he wants to get it right away. " don't we all " > > Just my little update on . i responded to bonnie e-mail that more > people with older kids should speak up. so here we are > > just a note to all the new parents with children who are apraxic. > the piece of advice i give all who get the dx is that you have to be > patient. its a long road ahead and progress at least for me has been > slow. its hard to patient when you see your child suffering but we > are all they have to look to for the love and caring they need at the > time. it does take its toll I did go through some rough times with > myself dealing with the problem but remember there is always help for > us parents too. remember to take care of yourself because no one > else will. if we are not well our children will not be. Also you > don't have to alone in getting help for child,please reach out I > tried to do it all and failed. since i reached out i have a lot of > help. > Remember our children are remarkable. I feel if a typical child had > what my son had all of sudden they would go crazy. he has his issues > but he is remarkable with what he can do with his disorder. he is > amazing at telling you stories with pantamime. if all else fails for > him he could be a street mime and make lots of $.(LOL) > Happy new year everyone > chris(mom to a remarkable paul with apraxia and emma my diva 4 year > old > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 thank you sarah chris [ ] Re: update Thank you for writing an update and sharing with us Chris. Congrats on getting a dynovox and best wishes that he takes to it and it opens new doors for him. Also a big AMEN to your suggestions to parents of newly diagnosed little ones! Mom to 5.8 year old apraxic karate kid > > hi everyone, > I've been on this list since my son was 3. he's going to be 7 now. > this list has been a savior for me when things were really bad and a > wealth of information. > I have some really good news, is getting a dynovox!!! so excited > and hope he takes to it. He's been doing so well in the program in > his district school. his language had really expanded and so has his > cognitive abilities. His speech is still very poor, hence the > dynovox. > does have fine and gross motor issues as well. we just found > out that he favors the left side of his body. he does not lead off > with the right foot when he goes down stairs. he used to run with > his right shoulder slightly up and hand on his chest. now he is > doing well because of this excellent pt. she really works with him > doing all kind of excercises to strengthen him. i see some much > improvement. > his fine motor he has some writing issues but they seem ok. his > biggest problem is lack of focus and impulsivity. its what he uses > to get out of a hard thing. he still has behavior but its sooo > manageable now. The more work he accomlishes the more confident he > becomes. he still needs maturity too learn to stick to it and he will > get better. he wants to get it right away. " don't we all " > > Just my little update on . i responded to bonnie e-mail that more > people with older kids should speak up. so here we are > > just a note to all the new parents with children who are apraxic. > the piece of advice i give all who get the dx is that you have to be > patient. its a long road ahead and progress at least for me has been > slow. its hard to patient when you see your child suffering but we > are all they have to look to for the love and caring they need at the > time. it does take its toll I did go through some rough times with > myself dealing with the problem but remember there is always help for > us parents too. remember to take care of yourself because no one > else will. if we are not well our children will not be. Also you > don't have to alone in getting help for child,please reach out I > tried to do it all and failed. since i reached out i have a lot of > help. > Remember our children are remarkable. I feel if a typical child had > what my son had all of sudden they would go crazy. he has his issues > but he is remarkable with what he can do with his disorder. he is > amazing at telling you stories with pantamime. if all else fails for > him he could be a street mime and make lots of $.(LOL) > Happy new year everyone > chris(mom to a remarkable paul with apraxia and emma my diva 4 year > old > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 You really seem to have a good attitude. I am a mom of a 3 year old, ph. All the therapies, evals, insurance issues, special ed,etc. is new to us. Thanks for your inspiring words. By the way, what is a dynovox? Take CAre, > > hi everyone, > I've been on this list since my son was 3. he's going to be 7 now. > this list has been a savior for me when things were really bad and a > wealth of information. > I have some really good news, is getting a dynovox!!! so excited > and hope he takes to it. He's been doing so well in the program in > his district school. his language had really expanded and so has his > cognitive abilities. His speech is still very poor, hence the > dynovox. > does have fine and gross motor issues as well. we just found > out that he favors the left side of his body. he does not lead off > with the right foot when he goes down stairs. he used to run with > his right shoulder slightly up and hand on his chest. now he is > doing well because of this excellent pt. she really works with him > doing all kind of excercises to strengthen him. i see some much > improvement. > his fine motor he has some writing issues but they seem ok. his > biggest problem is lack of focus and impulsivity. its what he uses > to get out of a hard thing. he still has behavior but its sooo > manageable now. The more work he accomlishes the more confident he > becomes. he still needs maturity too learn to stick to it and he will > get better. he wants to get it right away. " don't we all " > > Just my little update on . i responded to bonnie e-mail that more > people with older kids should speak up. so here we are > > just a note to all the new parents with children who are apraxic. > the piece of advice i give all who get the dx is that you have to be > patient. its a long road ahead and progress at least for me has been > slow. its hard to patient when you see your child suffering but we > are all they have to look to for the love and caring they need at the > time. it does take its toll I did go through some rough times with > myself dealing with the problem but remember there is always help for > us parents too. remember to take care of yourself because no one > else will. if we are not well our children will not be. Also you > don't have to alone in getting help for child,please reach out I > tried to do it all and failed. since i reached out i have a lot of > help. > Remember our children are remarkable. I feel if a typical child had > what my son had all of sudden they would go crazy. he has his issues > but he is remarkable with what he can do with his disorder. he is > amazing at telling you stories with pantamime. if all else fails for > him he could be a street mime and make lots of $.(LOL) > Happy new year everyone > chris(mom to a remarkable paul with apraxia and emma my diva 4 year > old > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 Angel!!!! Long time no " see " . Glad to hear everything is going well and that has found his nitche. Which I could say the same about my 16 year old. Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2007 Report Share Posted January 11, 2007 that is awesome news!!! This is almost my 2nd year here. nawlinslady10 <Afitzwilli@...> wrote: Hello Everyone; I just wanted to drop in to say hello to all of you oldies, who remember. With a 15.5 year old, a 13 year old and a 2 year old, time is scarce. Those who have been here for a while will remember when made the national news for being arrested in school for having an autistic outburst, which was of course all dropped. I would like to say that 5 years later, he still has severe social problems, and is probably on an 8 year old level in that area, but he found his niche about 6 years ago. That being Taekwondo. I guess it was more of an obsession. The obsession paid off!! In September received his blackbelt in Taekwondo!!! He is so proud of himself for the accomplishment, but not as proud as we are. He just took it with a grain of salt and moved on. The school was so proud of him that they put it on the marquee outside. I am posting some pictures of the event, and would like for all you other parents out there to be inspired by it. has an IQ of 80, according to their tests, but has a college level vocabulary and reads at the college level, and now is a black belt in Taekwondo. These kids abilities can not be evaluated with the typical test, because they aren't typical at all. Good Luck to all of you. Please e-mail me privately, anypne who would like and I would really like to hear from some of you old timers, so I can see how your children are developing. P_lease see the pictures on the photo section. Take Care, Angel Fitzwilliams angelfitz@... --------------------------------- Want to start your own business? Learn how on Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2007 Report Share Posted August 13, 2007 Tasha, Try explaining to the doctor that you will need a diagnosis from a developmental ped in order to get proper early intervention services. My experience with EI and school districts is that they will dispute the apraxia diagnosis and not offer appropriate services. They are much more inclined to pay attention to a diagnosis from a dev. ped. - not a regular ped. Since it takes so long to get an appt with a dev. ped (18-24 months around here), I would push for the referral as soon as possible. Sounds like she needs a " reason " to do the referral and the need for adequate services should be a good enough reason. M. > > So Braden had speech Friday and his therapist the whole session, as > she is working with him keeps stating yeah he is apraxic, he does > have apraxia, ect ect. (But, again won't diagnose for another 6 mths, > ugghh) Immediately after his speech he had an appt with his ped > (another g-tube infection,) I happened to mention to her about him > being really clumpsy lately and falling alot. First thing out of docs > mouth was, " hon thats part of him being dyspraxic. " I was thinkin > woah..so shes known he was apraxic this whole time and has failed to > mention it, or diagnose it. His speech therapist states that apraxic > and dyspraxic are the same thing. I'm confused I guess. I just don't > get these people. Both says he has it, but neither will diagnose or > treat him for it. UUGGHH..i just hate to switch docs, other than this > situation (not referring us to develop peds) she has been awesome > about referring us to other specialist for his other health issues > and has always been on top of things with his care. I just hate that > she won't do this one thing. It is driving me bananas. Also, what is > the difference if any to apraxia and dyspraxia? > > Tasha--Mom to a beautiful son Braden, 20 mths > Braden--Mastocytosis, Eosinophilic Esophagitis, g-tube, asthma, GERD, > oral apraxia, develop/speech delays, feeding problems, allergic to > milk, soy, egg, corn, tomato, strawberry, citrus, latex, cipro, > morphine, magic butt cream...now Formula diet only > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2007 Report Share Posted August 13, 2007 Early Intervention services end at 3yrs old- the Neurologists have told us that Apraxia cannot be diagnosed till after 4yrs old or later. Apraxia is " without any speech " Dyspraxia is " some " words, so when you say Apraxia and they are saying some words, they usually know what you mean anyway. My 6dd was dx with Apraxia at almost five when it was obvious that none of the speech therapy she had in EI had done any good. She was at that point saying mama and little else. - > > > she won't do this one thing. It is driving me bananas. Also, what > is > > the difference if any to apraxia and dyspraxia? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2007 Report Share Posted August 13, 2007 Hey Tasha http://www.ldonline.org/article/14616 Dyspraxia info http://www.cherab.org/information/aginmdapraxia.html apraxia info Global apraxia is also referred to as dyspraxia. Some use apraxia and dyspraxia interchangeable like verbal dyspraxia-verbal apraxia. Who diagnosis a speech disorder? http://www.speechville.com/speech-therapy/who-diagnoses.html http://www.speech-express.com/ (Speechville) Testing Instruments: Apraxia Links to information about The Apraxia Profile, the Kaufman Praxis Test, the Verbal Motor Production Assessment for Children (VMPAC), the Early Motor Control Scales, and the Screening Test for Developmental Apraxia of Speech. I would ask her to perform one of these tests if age appropriate for your son...if the results show apraxia...she wouldn't be able to distpute it, and it would be in a report for when he transitions out of EI for the school district. I would also put together a page of different sites that say SLPs are one to diagnose,and print it off for her-and ask why she refuses to diagnose. Go through the symptoms of apraxia, oral apraxia if that is an issue, sensory integration, hypotonia if that is an issue and list them for the SLP and doctor to read. Sometimes people listen better if there is something visually for the information. Here is a good link for new members...lots of good info for the suspected apraxic child. New Member Message Archived message with answers to these subjects: At what age can Apraxia be diagnosed?, Re: 19 month old not talking, receptive communication delays/pure apraxia?, What are warning signs of speech delay in 15 month old?, Is Your Child A Late Talker?, Your Child's Language Development?, Oral-Motor Problems?, Recommended Book-The Late Talker What to do if your child isn't Talking Yet, What type of apraxic like speech behaviors? /message/64508 Also look in the folders for more information to print or read about. /links Check out apraxia site folder to help you gather more info you may need. Good luck to you, Tina My son was diagnosed at 27 months old so there are professionals that will diagnose early. > > So Braden had speech Friday and his therapist the whole session, as > she is working with him keeps stating yeah he is apraxic, he does > have apraxia, ect ect. (But, again won't diagnose for another 6 mths, > ugghh) Immediately after his speech he had an appt with his ped > (another g-tube infection,) I happened to mention to her about him > being really clumpsy lately and falling alot. First thing out of docs > mouth was, " hon thats part of him being dyspraxic. " I was thinkin > woah..so shes known he was apraxic this whole time and has failed to > mention it, or diagnose it. His speech therapist states that apraxic > and dyspraxic are the same thing. I'm confused I guess. I just don't > get these people. Both says he has it, but neither will diagnose or > treat him for it. UUGGHH..i just hate to switch docs, other than this > situation (not referring us to develop peds) she has been awesome > about referring us to other specialist for his other health issues > and has always been on top of things with his care. I just hate that > she won't do this one thing. It is driving me bananas. Also, what is > the difference if any to apraxia and dyspraxia? > > Tasha--Mom to a beautiful son Braden, 20 mths > Braden--Mastocytosis, Eosinophilic Esophagitis, g-tube, asthma, GERD, > oral apraxia, develop/speech delays, feeding problems, allergic to > milk, soy, egg, corn, tomato, strawberry, citrus, latex, cipro, > morphine, magic butt cream...now Formula diet only > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2007 Report Share Posted August 13, 2007 What is her stated excuse for not referring? If she has none and you still want to stay just ask why, ans stand there with a confused look as to her saying it is needed but won't do it. Let that stay for a while. The discomfort of the silence and the reality that she is waiting " just because " will likely result in a referral. If you can't stand the silence, mention the wait to get in and the need for the referral to make the appt. elmccann wrote: >Tasha, > >Try explaining to the doctor that you will need a diagnosis from a >developmental ped in order to get proper early intervention >services. My experience with EI and school districts is that they >will dispute the apraxia diagnosis and not offer appropriate >services. They are much more inclined to pay attention to a >diagnosis from a dev. ped. - not a regular ped. Since it takes so >long to get an appt with a dev. ped (18-24 months around here), I >would push for the referral as soon as possible. Sounds like she >needs a " reason " to do the referral and the need for adequate >services should be a good enough reason. > > M. > > > > >>So Braden had speech Friday and his therapist the whole session, as >>she is working with him keeps stating yeah he is apraxic, he does >>have apraxia, ect ect. (But, again won't diagnose for another 6 >> >> >mths, > > >>ugghh) Immediately after his speech he had an appt with his ped >>(another g-tube infection,) I happened to mention to her about him >>being really clumpsy lately and falling alot. First thing out of >> >> >docs > > >>mouth was, " hon thats part of him being dyspraxic. " I was thinkin >>woah..so shes known he was apraxic this whole time and has failed >> >> >to > > >>mention it, or diagnose it. His speech therapist states that >> >> >apraxic > > >>and dyspraxic are the same thing. I'm confused I guess. I just >> >> >don't > > >>get these people. Both says he has it, but neither will diagnose or >>treat him for it. UUGGHH..i just hate to switch docs, other than >> >> >this > > >>situation (not referring us to develop peds) she has been awesome >>about referring us to other specialist for his other health issues >>and has always been on top of things with his care. I just hate >> >> >that > > >>she won't do this one thing. It is driving me bananas. Also, what >> >> >is > > >>the difference if any to apraxia and dyspraxia? >> >>Tasha--Mom to a beautiful son Braden, 20 mths >>Braden--Mastocytosis, Eosinophilic Esophagitis, g-tube, asthma, >> >> >GERD, > > >>oral apraxia, develop/speech delays, feeding problems, allergic to >>milk, soy, egg, corn, tomato, strawberry, citrus, latex, cipro, >>morphine, magic butt cream...now Formula diet only >> >> >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2007 Report Share Posted August 13, 2007 I just recently learned from experience that you don't go in and *hope* to get a referral.....you just tell them you want a referral and don't take no for an answer. Also, like mentioned, an appt with a dev ped can take many, many months. Just call up the dev ped and tell them you got a referral from your doc and would like to schedule an appt. By the time you actually get to see the doc the problem with either: A) be resolved or be serious enough that the regular ped will agree to giving a referral. My son is now 30 mos and I've been too " scared " to demand a referral. I finally went to the doc a week ago and let him know I was no longer going to sit around and *hope* my son gets better. He gave me the referral and now I'm kicking myself for not doing this sooner. My appt is 6 mos from now....at which point my son will be 3. I hate that I've wasted all that time! Follow your heart and do what you know needs to be done. Don't let the Dr intimidate you--that's what I let them do to me and I really shouldn't have! Bridget > > > > So Braden had speech Friday and his therapist the whole session, as > > she is working with him keeps stating yeah he is apraxic, he does > > have apraxia, ect ect. (But, again won't diagnose for another 6 > mths, > > ugghh) Immediately after his speech he had an appt with his ped > > (another g-tube infection,) I happened to mention to her about him > > being really clumpsy lately and falling alot. First thing out of > docs > > mouth was, " hon thats part of him being dyspraxic. " I was thinkin > > woah..so shes known he was apraxic this whole time and has failed > to > > mention it, or diagnose it. His speech therapist states that > apraxic > > and dyspraxic are the same thing. I'm confused I guess. I just > don't > > get these people. Both says he has it, but neither will diagnose or > > treat him for it. UUGGHH..i just hate to switch docs, other than > this > > situation (not referring us to develop peds) she has been awesome > > about referring us to other specialist for his other health issues > > and has always been on top of things with his care. I just hate > that > > she won't do this one thing. It is driving me bananas. Also, what > is > > the difference if any to apraxia and dyspraxia? > > > > Tasha--Mom to a beautiful son Braden, 20 mths > > Braden--Mastocytosis, Eosinophilic Esophagitis, g-tube, asthma, > GERD, > > oral apraxia, develop/speech delays, feeding problems, allergic to > > milk, soy, egg, corn, tomato, strawberry, citrus, latex, cipro, > > morphine, magic butt cream...now Formula diet only > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2007 Report Share Posted August 14, 2007 Bridget, I am going through similar heartache over a different matter. In the end, we are human. I have been on target with some things, too chicken to address others and am only now starting to see the size of the tidal wave that has hit my family and not just my son. My daughter is slightly losing skills, likely due to led. There is a game plan in place. One I jumpstarted and ran from 3 months ago. The truth is, I was not educated enough or emotionally prepared to do it then. Not sure I am now but I am no longer willing to waste more time. There is no perfect time for your child to be harmed or for you to undo it. The time is now. You and I are where we are. We won't drag our feet again and our children will get better. The alternative is not an option and I will fight like hell and never ever stop until I die because only then will I know I did all I could. bdkirk03 wrote: >I just recently learned from experience that you don't go in and >*hope* to get a referral.....you just tell them you want a referral >and don't take no for an answer. > >Also, like mentioned, an appt with a dev ped can take many, many >months. Just call up the dev ped and tell them you got a referral >from your doc and would like to schedule an appt. By the time you >actually get to see the doc the problem with either: A) be resolved or > be serious enough that the regular ped will agree to giving a >referral. > >My son is now 30 mos and I've been too " scared " to demand a referral. > I finally went to the doc a week ago and let him know I was no longer >going to sit around and *hope* my son gets better. He gave me the >referral and now I'm kicking myself for not doing this sooner. My >appt is 6 mos from now....at which point my son will be 3. I hate >that I've wasted all that time! Follow your heart and do what you >know needs to be done. Don't let the Dr intimidate you--that's what I >let them do to me and I really shouldn't have! > >Bridget Quote Link to comment Share on other sites More sharing options...
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