Guest guest Posted March 2, 2011 Report Share Posted March 2, 2011 The illustration you gave worked for this reason: When more areas of the brain are " activated " , then the speech seems to improve. Sounds crazy, but play music, give her a squish ball, and then work on speech. My guess is you will see the same improvements. You mentioned something i want to touch on, autism. We are now going to the Marcus autism institute. My son, with a dx of MDS 50% most likely has ASD and this is the cause of his verbal apraxia. Chances are if you ask you daughter yo repeat those words or answers five times in a row, then she won't be able to do it, which is a classic sign of apraxia. (an after thought out of text in this paragraph). Anyway, do you have her on a strict GFCF diet? We saw the greatest improvements when going strictly GFCF, and i mean very strict in all areas of life including school (but mine is homebound and so I watch him all the time, which makes it easier), within a few days and MAJOR improvements within 6 months. I cannot recommend this way of nutritional support enough. My son will now say things on command. The gluten and casein proteins are too large to be digested by some people especially those with neurological disorders such as ds and ASD. The proteins turn into opiate peptides in the gut and then t hey cause neurological problems in the brain of susceptible children like ours. It is called the gut-brain connection. Our kids are in a sense " addicted " to these proteins. The behavior got better, the meltdowns improved, and most of all the SPEECH improved so dramatically that the SLP was raving and still is. A common characteristic of individuals with speech apraxia is they say things so beautifully one moment and then the next moment, they are completely unintellligible especially with some previously known words. As time goes on, implementing the strict diet, and plenty of good speech therapy and reinforcement at home, the speech words start to " stick " again and be more consistent with familiar words. The behavior you also mention (normal at first, then regressed) is indicative of regressive autism, like my son. The problems will only get worse if not addressed rig away. We do not vaccinate, but many do. I do not recommend it, but if you must, then you really need to space these out tremendously and i also recommend researching the vaccine ingredients BEFORE you inject them into your child. Many people are oblivious to what is really in the vaccines aside from metals and corrosives; you would be surprised how many people do not believe in abortions but they will inject a vaccine that was cultured in aborted fetal tissue into their child. I think some people might just be amazed at what all is in vaccines. The point is, you need to also remove as many environmental toxins as possible. For water if you can, install a reverse osmosis water system. If you cannot afford that, then get a really good filter...investigate before you buy. For lawn care, go organic and natural without pesticides. For fruits and vegetables, buy organic when you can (plu codes that begin with #9) and when you cannot, buy traditional (4 digit numbers). Avoid at all costs any plu code that begins with number 9; although bigger and more attractive, these products are genetically modified and will affect your DNA adversely. Be cautious and do not rely on signs at the groCery store because i saw some greens with signs all around saying ORGANIC, but the plu began with a number 9. They are not organic they are GMO (genetically modified), which reminds me, i still need to report that. Anyways, you get the idea, try to use green cleaners like vinegar based or other to clean with instead of bleaches and other cleaners with harsh chemicals in your home. Go as green as you can because there are environmental toxins in our air that you cannot avoid and you need to rid your daughter's environment of all possible toxins. This will aid in the recovery of her apraxia. Start now, as the apraxia if that is what it is (what it sounds like) will only get worse without effectively pounding at the problem from all angles. Speech therapy should be intense one on one therapy with picture cards targeting specific initial, medial, and final speech sounds. If your speech therapy is ANYTHING but this, then you need a different therapist. We have been through it all and wasted a bunch of time and many precious years. Many therapists just played with him or did different activities, but not onion one eliciting speech sounds until about a year and a half ago. Don't waste time. I urge you to take action now and become very proactive. Good luck and feel free to call or email me if needed, > > Oh my goodness Sue, I am so glad that you posted this!! I really felt kind of > alone, it seemed like everyone else's kids were doing so well and I felt that > Kaylee was regressing. At 6 months she had " mama " and " dada " down like a pro > and by 19 months she had such a nice little repertoire of words that we were > told that she would probably not need speech services. She began to slow > slightly in her ability to pick up new words but when she started preschool upon > turning 3 years old her teacher told me that she had never heard a child with > Down Syndrome pronounce words so clearly. It has been down hill ever since. > > As I mentioned, shortly after she was a year and a half she appeared to stop > picking up new words and by the time she turned 4 she had lost most of what she > had known and what was left was very slurred. Remarkably, last fall (just > before her 5th Bday) she began stuttering as she tried to pronounce what few > words she had left. I must admit that she has shown signs of improvement this > past month or so so I hope that it was just something we had to work thru. > > I've felt so helpless, as a mom I've considered autism, apraxia, etc. She see's > a Down Syndrome specialist at s Hopkins and he doesn't really seem > concerned. His focus has been sensory issues that she has developed. We found > a sensory specialist in Arlington Va, we saw her for the first time just last > week. She did hand me a piece of info that may be helpful. She said that when > children have sensory issues (does Isabella??) they began to have a hard time > learning new skills and as a result, of course, may lose some that they had. > She explained that they are so focused on what's going on around them and thier > body is having such a hard time processing it that it makes it very difficult > for them to focus or concentrate. She did a simple exercise with Kaylee to > prove her point. She had a large, square swing (I'm sure you've seen them), she > put a heavy intertube on it and had Kaylee push the swing. Of course she loved > it and enjoyed playing with it for several minutes. This exercise followed an > hour session of other sensory activities. As Kaylee stood still and pushed the > swing the therapist began asking her questions. Kaylee was able to provide one > or two word answers to her questions and her words were actually clearer than I > had heard her say them for a long time!! It seems that her sensory issues may be > what is impeding her ability to slow down, think about what we are saying and > what she would like to say and of course slurring her speech. > > Do you think that may be what Isabella is facing? > > Thanks for your post! > Sandy > mom to Kaylee 5 years and her three siblings > > > > > > ________________________________ > > To: MosaicDS ; raregeneticdisorders > Sent: Mon, February 28, 2011 11:57:47 PM > Subject: asphia > > > I have always said Isabella's speech reminds me of someone that had a stroke. > One day she knows a word and then next day she does not. I think that is what > is happening with her colors. It is not that she does not know the color, I > believe she can not find the right word. Speech therapist I believe are > starting to see what I am talking about. Has anyone else notice this is their > > child? If so what are you doing to help? > > Sue > Isabella XXX and MDS > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2011 Report Share Posted March 3, 2011 Hi Sue, What I find so interesting is that so many of our kids who have mDs have this. And my friends who's children have T21 do not. You have described my son to a T. I have seen a difference in him by just giving him omega 3. I would not even know how to change his diet because he has a limited one because he is so fussy.  ________________________________ To: MosaicDS Sent: Wed, March 2, 2011 1:21:12 PM Subject: Re: sue  The illustration you gave worked for this reason: When more areas of the brain are " activated " , then the speech seems to improve. Sounds crazy, but play music, give her a squish ball, and then work on speech. My guess is you will see the same improvements. You mentioned something i want to touch on, autism. We are now going to the Marcus autism institute. My son, with a dx of MDS 50% most likely has ASD and this is the cause of his verbal apraxia. Chances are if you ask you daughter yo repeat those words or answers five times in a row, then she won't be able to do it, which is a classic sign of apraxia. (an after thought out of text in this paragraph). Anyway, do you have her on a strict GFCF diet? We saw the greatest improvements when going strictly GFCF, and i mean very strict in all areas of life including school (but mine is homebound and so I watch him all the time, which makes it easier), within a few days and MAJOR improvements within 6 months. I cannot recommend this way of nutritional support enough. My son will now say things on command. The gluten and casein proteins are too large to be digested by some people especially those with neurological disorders such as ds and ASD. The proteins turn into opiate peptides in the gut and then t hey cause neurological problems in the brain of susceptible children like ours. It is called the gut-brain connection. Our kids are in a sense " addicted " to these proteins. The behavior got better, the meltdowns improved, and most of all the SPEECH improved so dramatically that the SLP was raving and still is. A common characteristic of individuals with speech apraxia is they say things so beautifully one moment and then the next moment, they are completely unintellligible especially with some previously known words. As time goes on, implementing the strict diet, and plenty of good speech therapy and reinforcement at home, the speech words start to " stick " again and be more consistent with familiar words. The behavior you also mention (normal at first, then regressed) is indicative of regressive autism, like my son. The problems will only get worse if not addressed rig away. We do not vaccinate, but many do. I do not recommend it, but if you must, then you really need to space these out tremendously and i also recommend researching the vaccine ingredients BEFORE you inject them into your child. Many people are oblivious to what is really in the vaccines aside from metals and corrosives; you would be surprised how many people do not believe in abortions but they will inject a vaccine that was cultured in aborted fetal tissue into their child. I think some people might just be amazed at what all is in vaccines. The point is, you need to also remove as many environmental toxins as possible. For water if you can, install a reverse osmosis water system. If you cannot afford that, then get a really good filter...investigate before you buy. For lawn care, go organic and natural without pesticides. For fruits and vegetables, buy organic when you can (plu codes that begin with #9) and when you cannot, buy traditional (4 digit numbers). Avoid at all costs any plu code that begins with number 9; although bigger and more attractive, these products are genetically modified and will affect your DNA adversely. Be cautious and do not rely on signs at the groCery store because i saw some greens with signs all around saying ORGANIC, but the plu began with a number 9. They are not organic they are GMO (genetically modified), which reminds me, i still need to report that. Anyways, you get the idea, try to use green cleaners like vinegar based or other to clean with instead of bleaches and other cleaners with harsh chemicals in your home. Go as green as you can because there are environmental toxins in our air that you cannot avoid and you need to rid your daughter's environment of all possible toxins. This will aid in the recovery of her apraxia. Start now, as the apraxia if that is what it is (what it sounds like) will only get worse without effectively pounding at the problem from all angles. Speech therapy should be intense one on one therapy with picture cards targeting specific initial, medial, and final speech sounds. If your speech therapy is ANYTHING but this, then you need a different therapist. We have been through it all and wasted a bunch of time and many precious years. Many therapists just played with him or did different activities, but not onion one eliciting speech sounds until about a year and a half ago. Don't waste time. I urge you to take action now and become very proactive. Good luck and feel free to call or email me if needed, > > Oh my goodness Sue, I am so glad that you posted this!! I really felt kind of > alone, it seemed like everyone else's kids were doing so well and I felt that > Kaylee was regressing. At 6 months she had " mama " and " dada " down like a pro > and by 19 months she had such a nice little repertoire of words that we were > told that she would probably not need speech services. She began to slow > slightly in her ability to pick up new words but when she started preschool >upon > > turning 3 years old her teacher told me that she had never heard a child with > Down Syndrome pronounce words so clearly. It has been down hill ever since. > > As I mentioned, shortly after she was a year and a half she appeared to stop > picking up new words and by the time she turned 4 she had lost most of what she > > had known and what was left was very slurred. Remarkably, last fall (just > before her 5th Bday) she began stuttering as she tried to pronounce what few > words she had left. I must admit that she has shown signs of improvement this > past month or so so I hope that it was just something we had to work thru. > > I've felt so helpless, as a mom I've considered autism, apraxia, etc. She see's > > a Down Syndrome specialist at s Hopkins and he doesn't really seem > concerned. His focus has been sensory issues that she has developed. We found > a sensory specialist in Arlington Va, we saw her for the first time just last > week. She did hand me a piece of info that may be helpful. She said that when > children have sensory issues (does Isabella??) they began to have a hard time > learning new skills and as a result, of course, may lose some that they had. > She explained that they are so focused on what's going on around them and thier > > body is having such a hard time processing it that it makes it very difficult > for them to focus or concentrate. She did a simple exercise with Kaylee to > prove her point. She had a large, square swing (I'm sure you've seen them), she > > put a heavy intertube on it and had Kaylee push the swing. Of course she loved > it and enjoyed playing with it for several minutes. This exercise followed an > hour session of other sensory activities. As Kaylee stood still and pushed the > swing the therapist began asking her questions. Kaylee was able to provide one > or two word answers to her questions and her words were actually clearer than I > > had heard her say them for a long time!! It seems that her sensory issues may >be > > what is impeding her ability to slow down, think about what we are saying and > what she would like to say and of course slurring her speech. > > Do you think that may be what Isabella is facing? > > Thanks for your post! > Sandy > mom to Kaylee 5 years and her three siblings > > > > > > ________________________________ > > To: MosaicDS ; raregeneticdisorders > Sent: Mon, February 28, 2011 11:57:47 PM > Subject: asphia > > > I have always said Isabella's speech reminds me of someone that had a stroke. > One day she knows a word and then next day she does not. I think that is what > is happening with her colors. It is not that she does not know the color, I > believe she can not find the right word. Speech therapist I believe are > starting to see what I am talking about. Has anyone else notice this is their > > child? If so what are you doing to help? > > Sue > Isabella XXX and MDS > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2011 Report Share Posted March 4, 2011 Thanks , I appreciate the information on the Omega 3 and I was grateful for your advise as well. I have been researching the GFCF diet and I was wondering if your son had symptoms of a food allergy before beginning this diet. Our sensory specialist told us that she had seen remarkable progress in some children who had been on this diet, she mentioned no improvement in others. She asked me to look for other signs of food allergy, chronic runny nose, skin rashes, diarreah or constipation. She said that she had found that the food allergy generally manifested itself in other ways, a clue that a food allergy is the culprit. Have you found this to be the case? ________________________________ To: MosaicDS Sent: Thu, March 3, 2011 12:19:24 PM Subject: Re: sue Hi Sue, What I find so interesting is that so many of our kids who have mDs have this. And my friends who's children have T21 do not. You have described my son to a T. I have seen a difference in him by just giving him omega 3. I would not even know how to change his diet because he has a limited one because he is so fussy. ________________________________ To: MosaicDS Sent: Wed, March 2, 2011 1:21:12 PM Subject: Re: sue The illustration you gave worked for this reason: When more areas of the brain are " activated " , then the speech seems to improve. Sounds crazy, but play music, give her a squish ball, and then work on speech. My guess is you will see the same improvements. You mentioned something i want to touch on, autism. We are now going to the Marcus autism institute. My son, with a dx of MDS 50% most likely has ASD and this is the cause of his verbal apraxia. Chances are if you ask you daughter yo repeat those words or answers five times in a row, then she won't be able to do it, which is a classic sign of apraxia. (an after thought out of text in this paragraph). Anyway, do you have her on a strict GFCF diet? We saw the greatest improvements when going strictly GFCF, and i mean very strict in all areas of life including school (but mine is homebound and so I watch him all the time, which makes it easier), within a few days and MAJOR improvements within 6 months. I cannot recommend this way of nutritional support enough. My son will now say things on command. The gluten and casein proteins are too large to be digested by some people especially those with neurological disorders such as ds and ASD. The proteins turn into opiate peptides in the gut and then t hey cause neurological problems in the brain of susceptible children like ours. It is called the gut-brain connection. Our kids are in a sense " addicted " to these proteins. The behavior got better, the meltdowns improved, and most of all the SPEECH improved so dramatically that the SLP was raving and still is. A common characteristic of individuals with speech apraxia is they say things so beautifully one moment and then the next moment, they are completely unintellligible especially with some previously known words. As time goes on, implementing the strict diet, and plenty of good speech therapy and reinforcement at home, the speech words start to " stick " again and be more consistent with familiar words. The behavior you also mention (normal at first, then regressed) is indicative of regressive autism, like my son. The problems will only get worse if not addressed rig away. We do not vaccinate, but many do. I do not recommend it, but if you must, then you really need to space these out tremendously and i also recommend researching the vaccine ingredients BEFORE you inject them into your child. Many people are oblivious to what is really in the vaccines aside from metals and corrosives; you would be surprised how many people do not believe in abortions but they will inject a vaccine that was cultured in aborted fetal tissue into their child. I think some people might just be amazed at what all is in vaccines. The point is, you need to also remove as many environmental toxins as possible. For water if you can, install a reverse osmosis water system. If you cannot afford that, then get a really good filter...investigate before you buy. For lawn care, go organic and natural without pesticides. For fruits and vegetables, buy organic when you can (plu codes that begin with #9) and when you cannot, buy traditional (4 digit numbers). Avoid at all costs any plu code that begins with number 9; although bigger and more attractive, these products are genetically modified and will affect your DNA adversely. Be cautious and do not rely on signs at the groCery store because i saw some greens with signs all around saying ORGANIC, but the plu began with a number 9. They are not organic they are GMO (genetically modified), which reminds me, i still need to report that. Anyways, you get the idea, try to use green cleaners like vinegar based or other to clean with instead of bleaches and other cleaners with harsh chemicals in your home. Go as green as you can because there are environmental toxins in our air that you cannot avoid and you need to rid your daughter's environment of all possible toxins. This will aid in the recovery of her apraxia. Start now, as the apraxia if that is what it is (what it sounds like) will only get worse without effectively pounding at the problem from all angles. Speech therapy should be intense one on one therapy with picture cards targeting specific initial, medial, and final speech sounds. If your speech therapy is ANYTHING but this, then you need a different therapist. We have been through it all and wasted a bunch of time and many precious years. Many therapists just played with him or did different activities, but not onion one eliciting speech sounds until about a year and a half ago. Don't waste time. I urge you to take action now and become very proactive. Good luck and feel free to call or email me if needed, > > Oh my goodness Sue, I am so glad that you posted this!! I really felt kind of > alone, it seemed like everyone else's kids were doing so well and I felt that > Kaylee was regressing. At 6 months she had " mama " and " dada " down like a pro > and by 19 months she had such a nice little repertoire of words that we were > told that she would probably not need speech services. She began to slow > slightly in her ability to pick up new words but when she started preschool >upon > > turning 3 years old her teacher told me that she had never heard a child with > Down Syndrome pronounce words so clearly. It has been down hill ever since. > > As I mentioned, shortly after she was a year and a half she appeared to stop > picking up new words and by the time she turned 4 she had lost most of what she > > > had known and what was left was very slurred. Remarkably, last fall (just > before her 5th Bday) she began stuttering as she tried to pronounce what few > words she had left. I must admit that she has shown signs of improvement this > past month or so so I hope that it was just something we had to work thru. > > I've felt so helpless, as a mom I've considered autism, apraxia, etc. She see's > > > a Down Syndrome specialist at s Hopkins and he doesn't really seem > concerned. His focus has been sensory issues that she has developed. We found > a sensory specialist in Arlington Va, we saw her for the first time just last > week. She did hand me a piece of info that may be helpful. She said that when > children have sensory issues (does Isabella??) they began to have a hard time > learning new skills and as a result, of course, may lose some that they had. > She explained that they are so focused on what's going on around them and thier > > > body is having such a hard time processing it that it makes it very difficult > for them to focus or concentrate. She did a simple exercise with Kaylee to > prove her point. She had a large, square swing (I'm sure you've seen them), she > > > put a heavy intertube on it and had Kaylee push the swing. Of course she loved > it and enjoyed playing with it for several minutes. This exercise followed an > hour session of other sensory activities. As Kaylee stood still and pushed the > swing the therapist began asking her questions. Kaylee was able to provide one > or two word answers to her questions and her words were actually clearer than I > > > had heard her say them for a long time!! It seems that her sensory issues may >be > > what is impeding her ability to slow down, think about what we are saying and > what she would like to say and of course slurring her speech. > > Do you think that may be what Isabella is facing? > > Thanks for your post! > Sandy > mom to Kaylee 5 years and her three siblings > > > > > > ________________________________ > > To: MosaicDS ; raregeneticdisorders > Sent: Mon, February 28, 2011 11:57:47 PM > Subject: asphia > > > I have always said Isabella's speech reminds me of someone that had a stroke. > One day she knows a word and then next day she does not. I think that is what > is happening with her colors. It is not that she does not know the color, I > believe she can not find the right word. Speech therapist I believe are > starting to see what I am talking about. Has anyone else notice this is their > > child? If so what are you doing to help? > > Sue > Isabella XXX and MDS > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2011 Report Share Posted March 4, 2011 It is because *speech delay* is commonly associated with trisomy 21, where it is not commonly associated with MDS (probably due to the lesser features....not sure?) Apraxia is more associated with MDS. I think it has something to do with the neurology of it. It might have something to do with dual diagnosis as well (frequently a secondary diagnosis of anything neurological will be dismissed by doctors; they have a difficult time looking past any diagnosis of Down syndrome, mosaic or not. Doctors tend to stop there with that diagnosis. Sue was one of the ones that was able to discover an additional chromosomal anomaly (was that a fluke?). Point is once they discover one chromosomal aneuploidy or anomaly, then they tend to blame EVERYTHING on that difference, which they shouldn't.) The children who have been diagnosed with T21 and verbal apraxia are misdiagnosed in my opinion with T21 and probably have MDS instead. > > > > Oh my goodness Sue, I am so glad that you posted this!! I really felt kind of > > alone, it seemed like everyone else's kids were doing so well and I felt that > > Kaylee was regressing. At 6 months she had " mama " and " dada " down like a pro > > and by 19 months she had such a nice little repertoire of words that we were > > told that she would probably not need speech services. She began to slow > > slightly in her ability to pick up new words but when she started preschool > >upon > > > > turning 3 years old her teacher told me that she had never heard a child with > > Down Syndrome pronounce words so clearly. It has been down hill ever since. > > > > As I mentioned, shortly after she was a year and a half she appeared to stop > > picking up new words and by the time she turned 4 she had lost most of what she > > > > had known and what was left was very slurred. Remarkably, last fall (just > > before her 5th Bday) she began stuttering as she tried to pronounce what few > > words she had left. I must admit that she has shown signs of improvement this > > past month or so so I hope that it was just something we had to work thru. > > > > I've felt so helpless, as a mom I've considered autism, apraxia, etc. She see's > > > > a Down Syndrome specialist at s Hopkins and he doesn't really seem > > concerned. His focus has been sensory issues that she has developed. We found > > a sensory specialist in Arlington Va, we saw her for the first time just last > > week. She did hand me a piece of info that may be helpful. She said that when > > children have sensory issues (does Isabella??) they began to have a hard time > > learning new skills and as a result, of course, may lose some that they had. > > She explained that they are so focused on what's going on around them and thier > > > > body is having such a hard time processing it that it makes it very difficult > > for them to focus or concentrate. She did a simple exercise with Kaylee to > > prove her point. She had a large, square swing (I'm sure you've seen them), she > > > > put a heavy intertube on it and had Kaylee push the swing. Of course she loved > > > it and enjoyed playing with it for several minutes. This exercise followed an > > hour session of other sensory activities. As Kaylee stood still and pushed the > > > swing the therapist began asking her questions. Kaylee was able to provide one > > > or two word answers to her questions and her words were actually clearer than I > > > > had heard her say them for a long time!! It seems that her sensory issues may > >be > > > > what is impeding her ability to slow down, think about what we are saying and > > what she would like to say and of course slurring her speech. > > > > Do you think that may be what Isabella is facing? > > > > Thanks for your post! > > Sandy > > mom to Kaylee 5 years and her three siblings > > > > > > > > > > > > ________________________________ > > From: Sue <suejohnson524@> > > To: MosaicDS ; raregeneticdisorders > > Sent: Mon, February 28, 2011 11:57:47 PM > > Subject: asphia > > > > > > I have always said Isabella's speech reminds me of someone that had a stroke. > > One day she knows a word and then next day she does not. I think that is what > > is happening with her colors. It is not that she does not know the color, I > > believe she can not find the right word. Speech therapist I believe are > > starting to see what I am talking about. Has anyone else notice this is their > > > > child? If so what are you doing to help? > > > > Sue > > Isabella XXX and MDS > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2011 Report Share Posted March 4, 2011 He has keratosis pilaris (a sandpaper rash, not red, on his arms and legs). He has behavioral issues (meltdowns...the famous stop, drop, and flop) when he does not get his way. He had swinging bowel habits (ok one minute and falling apart bm's the next) And the granddaddy of symptoms was neurological....His speech regressed and turned apraxic. He is allergic to red dye. (vomits, diarrhea, etc...) He has been gluten free since age 2 when we discovered via an elimination diet that his vomitting all over the house (or spitting up?) like a cat would hair balls (here and there and everywhere) that he had an aversion to gluten. Thing is, kids with neurological dysfunction tend to have immune issues. (It is a neuro-immune dysfunction). Gluten and casein are not easily digested by our kids-the proteins are larger in gluten and casein and not as easily broken down. They react with opiate receptors and become a *drug* (opiate like) to our kids. That is where the gut-brain connection comes in. Once the undigested proteins turn into opiate-like drugs, they start affecting behavior, speech, etc... BTW, all of the traditional allergy tests showed nothing and the reason was explained to me as the proteins are reacting with the HCL in the stomach and therefore may or may not show up on allergy testing. We did not do the better known tests, though, through GREAT PLAINS or ENTERO LABS, but did what insurance paid for. They were worthless and painful. Elimination diet, as we were told by our geneticist, allergist, and neurologist, os the best way to determine whether or not there is a problem with certain foods. We have been GFCF for a year and we willnot ever go back due to HUGE improvements in speech, which is why I started the diet to begin with. Speech was a main issue with my son. > > > > Oh my goodness Sue, I am so glad that you posted this!! I really felt kind of > > alone, it seemed like everyone else's kids were doing so well and I felt that > > Kaylee was regressing. At 6 months she had " mama " and " dada " down like a pro > > and by 19 months she had such a nice little repertoire of words that we were > > told that she would probably not need speech services. She began to slow > > slightly in her ability to pick up new words but when she started preschool > >upon > > > > turning 3 years old her teacher told me that she had never heard a child with > > Down Syndrome pronounce words so clearly. It has been down hill ever since. > > > > As I mentioned, shortly after she was a year and a half she appeared to stop > > picking up new words and by the time she turned 4 she had lost most of what she > > > > > > had known and what was left was very slurred. Remarkably, last fall (just > > before her 5th Bday) she began stuttering as she tried to pronounce what few > > words she had left. I must admit that she has shown signs of improvement this > > past month or so so I hope that it was just something we had to work thru. > > > > I've felt so helpless, as a mom I've considered autism, apraxia, etc. She see's > > > > > > a Down Syndrome specialist at s Hopkins and he doesn't really seem > > concerned. His focus has been sensory issues that she has developed. We found > > a sensory specialist in Arlington Va, we saw her for the first time just last > > week. She did hand me a piece of info that may be helpful. She said that when > > children have sensory issues (does Isabella??) they began to have a hard time > > learning new skills and as a result, of course, may lose some that they had. > > She explained that they are so focused on what's going on around them and thier > > > > > > body is having such a hard time processing it that it makes it very difficult > > for them to focus or concentrate. She did a simple exercise with Kaylee to > > prove her point. She had a large, square swing (I'm sure you've seen them), she > > > > > > put a heavy intertube on it and had Kaylee push the swing. Of course she loved > > > > it and enjoyed playing with it for several minutes. This exercise followed an > > hour session of other sensory activities. As Kaylee stood still and pushed the > > > > swing the therapist began asking her questions. Kaylee was able to provide one > > > > or two word answers to her questions and her words were actually clearer than I > > > > > > had heard her say them for a long time!! It seems that her sensory issues may > >be > > > > what is impeding her ability to slow down, think about what we are saying and > > what she would like to say and of course slurring her speech. > > > > Do you think that may be what Isabella is facing? > > > > Thanks for your post! > > Sandy > > mom to Kaylee 5 years and her three siblings > > > > > > > > > > > > ________________________________ > > From: Sue <suejohnson524@> > > To: MosaicDS ; raregeneticdisorders > > Sent: Mon, February 28, 2011 11:57:47 PM > > Subject: asphia > > > > > > I have always said Isabella's speech reminds me of someone that had a stroke. > > One day she knows a word and then next day she does not. I think that is what > > is happening with her colors. It is not that she does not know the color, I > > believe she can not find the right word. Speech therapist I believe are > > starting to see what I am talking about. Has anyone else notice this is their > > > > child? If so what are you doing to help? > > > > Sue > > Isabella XXX and MDS > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2011 Report Share Posted March 15, 2011 Thanks ! How long did you have to wait to see results? I have been told that it can take up to a year. ________________________________ To: MosaicDS Sent: Fri, March 4, 2011 9:58:48 AM Subject: Re: sue He has keratosis pilaris (a sandpaper rash, not red, on his arms and legs). He has behavioral issues (meltdowns...the famous stop, drop, and flop) when he does not get his way. He had swinging bowel habits (ok one minute and falling apart bm's the next) And the granddaddy of symptoms was neurological....His speech regressed and turned apraxic. He is allergic to red dye. (vomits, diarrhea, etc...) He has been gluten free since age 2 when we discovered via an elimination diet that his vomitting all over the house (or spitting up?) like a cat would hair balls (here and there and everywhere) that he had an aversion to gluten. Thing is, kids with neurological dysfunction tend to have immune issues. (It is a neuro-immune dysfunction). Gluten and casein are not easily digested by our kids-the proteins are larger in gluten and casein and not as easily broken down. They react with opiate receptors and become a *drug* (opiate like) to our kids. That is where the gut-brain connection comes in. Once the undigested proteins turn into opiate-like drugs, they start affecting behavior, speech, etc... BTW, all of the traditional allergy tests showed nothing and the reason was explained to me as the proteins are reacting with the HCL in the stomach and therefore may or may not show up on allergy testing. We did not do the better known tests, though, through GREAT PLAINS or ENTERO LABS, but did what insurance paid for. They were worthless and painful. Elimination diet, as we were told by our geneticist, allergist, and neurologist, os the best way to determine whether or not there is a problem with certain foods. We have been GFCF for a year and we willnot ever go back due to HUGE improvements in speech, which is why I started the diet to begin with. Speech was a main issue with my son. > > > > Oh my goodness Sue, I am so glad that you posted this!! I really felt kind of > > > alone, it seemed like everyone else's kids were doing so well and I felt that > > > Kaylee was regressing. At 6 months she had " mama " and " dada " down like a pro > > and by 19 months she had such a nice little repertoire of words that we were > > told that she would probably not need speech services. She began to slow > > slightly in her ability to pick up new words but when she started preschool > >upon > > > > turning 3 years old her teacher told me that she had never heard a child with > > > Down Syndrome pronounce words so clearly. It has been down hill ever since. > > > > As I mentioned, shortly after she was a year and a half she appeared to stop > > picking up new words and by the time she turned 4 she had lost most of what >she > > > > > > > had known and what was left was very slurred. Remarkably, last fall (just > > before her 5th Bday) she began stuttering as she tried to pronounce what few > > words she had left. I must admit that she has shown signs of improvement this > > > past month or so so I hope that it was just something we had to work thru. > > > > I've felt so helpless, as a mom I've considered autism, apraxia, etc. She >see's > > > > > > > a Down Syndrome specialist at s Hopkins and he doesn't really seem > > concerned. His focus has been sensory issues that she has developed. We found > > > a sensory specialist in Arlington Va, we saw her for the first time just last > > > week. She did hand me a piece of info that may be helpful. She said that when > > > children have sensory issues (does Isabella??) they began to have a hard time > > > learning new skills and as a result, of course, may lose some that they had. > > She explained that they are so focused on what's going on around them and >thier > > > > > > > body is having such a hard time processing it that it makes it very difficult > > > for them to focus or concentrate. She did a simple exercise with Kaylee to > > prove her point. She had a large, square swing (I'm sure you've seen them), >she > > > > > > > put a heavy intertube on it and had Kaylee push the swing. Of course she >loved > > > > > it and enjoyed playing with it for several minutes. This exercise followed an > > > hour session of other sensory activities. As Kaylee stood still and pushed >the > > > > > swing the therapist began asking her questions. Kaylee was able to provide >one > > > > > or two word answers to her questions and her words were actually clearer than >I > > > > > > > had heard her say them for a long time!! It seems that her sensory issues may > > >be > > > > what is impeding her ability to slow down, think about what we are saying and > > > what she would like to say and of course slurring her speech. > > > > Do you think that may be what Isabella is facing? > > > > Thanks for your post! > > Sandy > > mom to Kaylee 5 years and her three siblings > > > > > > > > > > > > ________________________________ > > From: Sue <suejohnson524@> > > To: MosaicDS ; raregeneticdisorders > > Sent: Mon, February 28, 2011 11:57:47 PM > > Subject: asphia > > > > > > I have always said Isabella's speech reminds me of someone that had a stroke. > > > One day she knows a word and then next day she does not. I think that is what > > > is happening with her colors. It is not that she does not know the color, I > > believe she can not find the right word. Speech therapist I believe are > > starting to see what I am talking about. Has anyone else notice this is their > > > > > child? If so what are you doing to help? > > > > Sue > > Isabella XXX and MDS > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2011 Report Share Posted March 15, 2011 We have been *virtually* gluten free since he was two years old. I say virtually because we were nor avod label readers until recently (for about a year or more now) and we were unsure of hidden sources of gluten (dairy too). It has been a journey. When we removed dairy, there was an immediate improvement (overnight) and the improvements are still there daily. (It gets better every day). It took a lot of research and a lot of figuring things out (like ingredients on labels). I also joined the GFCF Kids Yahoo group and I am still learning about phenols, yeast feeders, and other. They say to start with removing dairy casein first because you will see more immediate effects with removing all dairy due to it clearing the body faster than gluten. You see should results within one week of removing dairy, but the audiologist stated to see the most results, then you have to wait 6 months. I can say that 6 months into it, earwax build-up was no longer an issue. (The ENT said we might as well blame the casein removal, but he had never heard of it.) We are going to do a follow-up hearing test to see if those results changed. (just tryong to get an appointment now) Gluten takes longer to remove from one's system. The younger you are, the faster it gets out. The older you are, the longer it takes. Many people take enzymes to speed up the process. Also, I have heard people mix activated charcoal in juice to round up any gluten that was left in the body or in the case of an unintentional infraction. I will say this: My son has profound verbal apraxia, which is due to a neurological dysfunction and not a hearing problem. That said, the *neurology* in my son improved (and the rest of us as well...everything from PDD-NOS to ADHD-inattentive). It was that obvious to everyone immediately. For some people, immediate results are not seen and there are various reasons. It is *vital* that *everyone* be on board with the diet, including school. Many school supplies have to be substituted,including play-dough. The most common reason for failure of this diet to work is unintentional noncompliance. > > > > > > Oh my goodness Sue, I am so glad that you posted this!! I really felt kind of > > > > > alone, it seemed like everyone else's kids were doing so well and I felt that > > > > > Kaylee was regressing. At 6 months she had " mama " and " dada " down like a pro > > > > and by 19 months she had such a nice little repertoire of words that we were > > > > told that she would probably not need speech services. She began to slow > > > slightly in her ability to pick up new words but when she started preschool > > >upon > > > > > > turning 3 years old her teacher told me that she had never heard a child with > > > > > Down Syndrome pronounce words so clearly. It has been down hill ever since. > > > > > > As I mentioned, shortly after she was a year and a half she appeared to stop > > > > picking up new words and by the time she turned 4 she had lost most of what > >she > > > > > > > > > > > had known and what was left was very slurred. Remarkably, last fall (just > > > before her 5th Bday) she began stuttering as she tried to pronounce what few > > > > words she had left. I must admit that she has shown signs of improvement this > > > > > past month or so so I hope that it was just something we had to work thru. > > > > > > I've felt so helpless, as a mom I've considered autism, apraxia, etc. She > >see's > > > > > > > > > > > a Down Syndrome specialist at s Hopkins and he doesn't really seem > > > concerned. His focus has been sensory issues that she has developed. We found > > > > > a sensory specialist in Arlington Va, we saw her for the first time just last > > > > > week. She did hand me a piece of info that may be helpful. She said that when > > > > > children have sensory issues (does Isabella??) they began to have a hard time > > > > > learning new skills and as a result, of course, may lose some that they had. > > > > She explained that they are so focused on what's going on around them and > >thier > > > > > > > > > > > body is having such a hard time processing it that it makes it very difficult > > > > > for them to focus or concentrate. She did a simple exercise with Kaylee to > > > prove her point. She had a large, square swing (I'm sure you've seen them), > >she > > > > > > > > > > > put a heavy intertube on it and had Kaylee push the swing. Of course she > >loved > > > > > > > > > it and enjoyed playing with it for several minutes. This exercise followed an > > > > > hour session of other sensory activities. As Kaylee stood still and pushed > >the > > > > > > > > > swing the therapist began asking her questions. Kaylee was able to provide > >one > > > > > > > > > or two word answers to her questions and her words were actually clearer than > >I > > > > > > > > > > > had heard her say them for a long time!! It seems that her sensory issues may > > > > >be > > > > > > what is impeding her ability to slow down, think about what we are saying and > > > > > what she would like to say and of course slurring her speech. > > > > > > Do you think that may be what Isabella is facing? > > > > > > Thanks for your post! > > > Sandy > > > mom to Kaylee 5 years and her three siblings > > > > > > > > > > > > > > > > > > ________________________________ > > > From: Sue <suejohnson524@> > > > To: MosaicDS ; raregeneticdisorders > > > Sent: Mon, February 28, 2011 11:57:47 PM > > > Subject: asphia > > > > > > > > > I have always said Isabella's speech reminds me of someone that had a stroke. > > > > > One day she knows a word and then next day she does not. I think that is what > > > > > is happening with her colors. It is not that she does not know the color, I > > > believe she can not find the right word. Speech therapist I believe are > > > starting to see what I am talking about. Has anyone else notice this is their > > > > > > > > child? If so what are you doing to help? > > > > > > Sue > > > Isabella XXX and MDS > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.