Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 In a message dated 4/17/2004 8:19:59 AM Central Daylight Time, IonaDove@... writes: >Am not rece any j-f posts or knowing if mine are being posted! Can some one >write me pers w/info? Hi Alice, The list seems to be very quiet right now but I've seen a couple of your posts as well as a couple of more in the last week or so. I think I've even posted one or two and they've come through OK. I don't know why you might not be getting them. Namasté Sam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Dear Alice We got this one. I don't think many have been written at all.I haven't seen more than a few. love, Toni hELP! Am not rece any j-f posts or knowing if mine are being posted! Can some one write me pers w/info? thanks ao Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2008 Report Share Posted July 20, 2008 Molly's behavior hasn't been quite that extreme, BUT I HAVE experienced tantrums from her in the past. You are right about the communication. If there is a way that you can help him " problem-solve " and " tell " you what is frustrating you, that will help. His " telling " you can be as simple as him being able to " show " you the problem. You might consider cutting out some pictures of some thing that you observe to be stressors and then teach him to use those when he is feeling frustrated. I know this sounds simplistic, but if it really is his frustration at not being able to communicate, this might help. Maybe if you " smell " a tantrum coming on, you could get him to show you what is wrong using a picture and, thus, be able to avert the bigger tantrum. Of course, I know this is difficult -- if not impossible -- to implement while driving down the road (been there, done that), but it might work in other settings. (Knock on wood, Molly has just about quit getting out of her seat while I'm driving down the road. WHEW!). A. Special Educator Simon Kenton HS 11132 Madison Pk. Independence, KY 41051 (859)960-0348 cynthia.jones@... ________________________________ From: MosaicDS on behalf of Donna Spudic Sent: Sat 7/19/2008 11:12 AM To: MosaicDS Subject: Help! Hi Everyone Any suggestion to this problem will be greatly appreciated. Adam has developed some severe behavior problems over the last few months. It is growing continually worse as time goes by. He will have screaming tantrums that last for 20 minutes. During this time he will hit and kick and also hit himself, bang his head and scratch himself to the point of bleeding. We are worried that he is going to hurt himself. I am sure communication is a big issue because he seems frustrated at not being able to get his point across. He also does this when he can't get his way. If he is in the car and you turn in a direction he doesn't want to go, he is screaming, removing his seatbelt, etc. We have made an appointment with a genetic specialist but that is not until August 19th. His ped is useless, so she is no help. Adam's mom has tried everything from time out to taking away favorite toys. Nothing works. We need to get help before school starts. Has anyone else experienced this kind of behavior? Donna - gram to Adam 6 mds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 In most cases, not all, individuals with MDS have a very slight physical characteristics that are similar with Down syndrome. However, in most cases the individual only has a few of these characteristics (like they might not have the simeon crease, or they have it in only one hand, or they don't have the smaller mouth, or the low set ears, etc) So, they probably have some characteristics, but not all, and the characteristics they do have, seem to fade as they get older and are not as prominent. Now, like I said, this is not all cases. Because there are many cases where the individual has the extra chromosomes in the area that affects the physical appearence. So, if those chromosomes are in that area, then they will have the characteristics more. A lot of people think that because the person " looks " like they have Ds then they wont function any higher than a typical person with Ds. This is not true. The appearance has nothing to do with the development. So, I guess I was being a little sarcastic there, when I said that, but honestly, people are saying that all the time and it urks me! lol Just because they don't look like they have Ds or they are not as delayed as a person with Ds, doesn't mean they don't have issue of their own! It just means that they DON'T have Ds and they DO have MDS. As soon as doctors and therapists quit comparing the two when it comes to their care and development, the kids will start getting the treatment they deserve! Ok....second time on soap box today!!! LOL I need to really kick that box under the bed! Kristy Bolduc wrote: Kristy, What are the physical characteristics of mosaic Down syndrome? Jen Re: Re: Help! Hi Trista I burns me when they say " he doesn't have physical characteristics " LOL He doesn't have physical characterstics of DOWN SYNDROME because he doesn't HAVE DOWN SYNDROME!!! However, I bet he does have physical characteristics of mosaic Down syndrome!!! Ok.... I will step off that soap box lol If you go to our website and look at the developmental milestones http://www.imdsa.org/Information/develop.htm You can look at that and see if he is on target for MDS and how far behind he is for a child without extra chromosomes when you compare it to siblings. If your baby is lacking in any of these areas, even a tiny bit, then he needs the therapy! It will only help him. Your EI person should know what they are doing and it seems as though they aren't real knowledgable in therapy in general if they don't have a clue what to do. There are many good exercises to do to strengthen muscles. So, if he is not crawling or sitting up on his own, those exercises should be done. If you have more questions....ASK ASK ASK!!! We have plenty of folks here who are way closer to EI than I am, since it was 20 yr ago when I did it! Kristy gabrielsmom@... wrote: Camisha, My son, , just turned 8 months this last week. I appreciate your question, Camisha and I would like to sand this question out to anyone that might have suggestions. Except for eye & sinus infections my son has been a carbin copy of my older son (no MDS). Many doctors, nurses, and generally anyone that has heard his diagnosis refuse to beleive that he has MDS (he shows no physical characterists). SO I have been overwhelmed trying to read (too much) information so that I can be proactive. I am scared that I am going to miss something important because I am ignorant but the professionals aren't taking his MDS seriously. The first EI from BabyNet would only come to the house in the afternoon knowing that is when he slept and she would have his paperwork filled out before she got there. Now, when I say filled out, I mean she would make up things that they did for the visit & have it written down on his sheet before she even got to the house, regardless of the fact that often he just slept through her visit never even getting out of his crib. My husband is disabled and stays home with our 2 boys and my 92 yr old grandma. He cannot read very well since his severe brain injury so he woul djust sign them because she said he had to. I really feel like she took advantage of him and our son missed out. The new EI seems really nice but doesn't seem to have very many suggestions for us to work on or watch for. Is this the way it is supposed to be?? I often work anywhere from 45-65 hours (and more in tax season), to support my entire family of 5 on a secretary salary and I feel like I have little time to do enough research. Any suggestions for me? Thanks Trista ---- Camisha wrote: > Excuse me if what i am about to ask seems rude or " ignorant " , but do > these children truly have this " in-depth " speech issues/problems? I > am still learning so much and i realize my Macie is still so young > (almost 9mths) but i just wonder if speech is truly such a big > problem for everyone? > Is there anyone out there that has NOT had such a hard time with > speech with their MDS child? To me, speech therapy is one thing, but > to need devices and have a child that simply can not communicate is > something else. Or is it maybe that the children that have such a > hard time with this have other diagnosis along with MDS? Please help > me understand. > Thanks--Camisha > Kristy Colvin IMDSA President ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa.org http://www.mosaicmoments.today.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Kristy and Trista - 's only Physical Characteristics of Downs Syndrome are she has the stars in her eyes (it is gorgeous in her blue/green eyes, I forget what the stars are called) a flat bridge of her nose and she has almond shaped eyes. She also has low tone in her torso but that is not something you would see unless you were testing her. If you were looking you could also see she has a crooked pinky's,a gap between her big toe and second toe and flat feet (so do I and so does my mother on all of these - so you could say they were hereditary) Darlene > In most cases, not all, individuals with MDS have a very slight physical > characteristics that are similar with Down syndrome. However, in most cases > the individual only has a few of these characteristics (like they might not > have the simeon crease, or they have it in only one hand, or they don't have > the smaller mouth, or the low set ears, etc) So, they probably have some > characteristics, but not all, and the characteristics they do have, seem to > fade as they get older and are not as prominent. > > Now, like I said, this is not all cases. Because there are many cases where > the individual has the extra chromosomes in the area that affects the > physical appearence. So, if those chromosomes are in that area, then they > will have the characteristics more. > > A lot of people think that because the person " looks " like they have Ds > then they wont function any higher than a typical person with Ds. This is > not true. The appearance has nothing to do with the development. > > So, I guess I was being a little sarcastic there, when I said that, but > honestly, people are saying that all the time and it urks me! lol Just > because they don't look like they have Ds or they are not as delayed as a > person with Ds, doesn't mean they don't have issue of their own! It just > means that they DON'T have Ds and they DO have MDS. As soon as doctors and > therapists quit comparing the two when it comes to their care and > development, the kids will start getting the treatment they deserve! > > Ok....second time on soap box today!!! LOL I need to really kick that box > under the bed! > Kristy > > > Bolduc <jhunter5431@... <jhunter5431%40charter.net>> > wrote: > Kristy, > What are the physical characteristics of mosaic Down syndrome? > > Jen > Re: Re: Help! > > Hi Trista > I burns me when they say " he doesn't have physical characteristics " LOL > He doesn't have physical characterstics of DOWN SYNDROME because he doesn't > HAVE DOWN SYNDROME!!! However, I bet he does have physical characteristics > of mosaic Down syndrome!!! > > Ok.... I will step off that soap box lol > > If you go to our website and look at the developmental milestones > http://www.imdsa.org/Information/develop.htm > You can look at that and see if he is on target for MDS and how far behind > he is for a child without extra chromosomes when you compare it to siblings. > > If your baby is lacking in any of these areas, even a tiny bit, then he > needs the therapy! It will only help him. Your EI person should know what > they are doing and it seems as though they aren't real knowledgable in > therapy in general if they don't have a clue what to do. There are many good > exercises to do to strengthen muscles. So, if he is not crawling or sitting > up on his own, those exercises should be done. > > If you have more questions....ASK ASK ASK!!! We have plenty of folks here > who are way closer to EI than I am, since it was 20 yr ago when I did it! > > Kristy > > gabrielsmom@... <gabrielsmom%40charter.net> wrote: > Camisha, > > My son, , just turned 8 months this last week. I appreciate your > question, Camisha and I would like to sand this question out to anyone that > might have suggestions. > Except for eye & sinus infections my son has been a carbin copy of my older > son (no MDS). Many doctors, nurses, and generally anyone that has heard his > diagnosis refuse to beleive that he has MDS (he shows no physical > characterists). SO I have been overwhelmed trying to read (too much) > information so that I can be proactive. I am scared that I am going to miss > something important because I am ignorant but the professionals aren't > taking his MDS seriously. The first EI from BabyNet would only come to the > house in the afternoon knowing that is when he slept and she would have his > paperwork filled out before she got there. Now, when I say filled out, I > mean she would make up things that they did for the visit & have it written > down on his sheet before she even got to the house, regardless of the fact > that often he just slept through her visit never even getting out of his > crib. My husband is disabled and stays home with our 2 boys and my 92 yr old > grandma. He cannot read very > well since his severe brain injury so he woul djust sign them because she > said he had to. I really feel like she took advantage of him and our son > missed out. The new EI seems really nice but doesn't seem to have very many > suggestions for us to work on or watch for. Is this the way it is supposed > to be?? I often work anywhere from 45-65 hours (and more in tax season), to > support my entire family of 5 on a secretary salary and I feel like I have > little time to do enough research. Any suggestions for me? > Thanks > Trista > > ---- Camisha <chopkins@... <chopkins%40petrincorp.com>> wrote: > > Excuse me if what i am about to ask seems rude or " ignorant " , but do > > these children truly have this " in-depth " speech issues/problems? I > > am still learning so much and i realize my Macie is still so young > > (almost 9mths) but i just wonder if speech is truly such a big > > problem for everyone? > > Is there anyone out there that has NOT had such a hard time with > > speech with their MDS child? To me, speech therapy is one thing, but > > to need devices and have a child that simply can not communicate is > > something else. Or is it maybe that the children that have such a > > hard time with this have other diagnosis along with MDS? Please help > > me understand. > > Thanks--Camisha > > > > Kristy Colvin > IMDSA President > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > International Mosaic Down Syndrome Association > PH: > Toll Free: 1-888-MDS-LINK > http://www.imdsa.org > http://www.mosaicmoments.today.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 I love that you say she has stars in her eyes! That is a wonderful way to see it! The name you are looking for is brushfield spots. Tim has several characteristics. He is short (5'1 " ) he has short limbs and short fingers. He doesn't have the space in the toes or the curve in the finger but he is flat footed. He has very slight almond shaped eyes and lower set ears but not extreme. The back of his head is flat too. What is interesting about Tim is he had some of these features as a baby and it was missed. Then the features faded away. In the past 2 years it seems as though his features have come back stronger. I don't understand it and have mentioned it to Dr. -Cook. But since both of our schedules are so busy we haven't really had time to discuss it. Kristy Darlene Benoit wrote: Kristy and Trista - 's only Physical Characteristics of Downs Syndrome are she has the stars in her eyes (it is gorgeous in her blue/green eyes, I forget what the stars are called) a flat bridge of her nose and she has almond shaped eyes. She also has low tone in her torso but that is not something you would see unless you were testing her. If you were looking you could also see she has a crooked pinky's,a gap between her big toe and second toe and flat feet (so do I and so does my mother on all of these - so you could say they were hereditary) Darlene > In most cases, not all, individuals with MDS have a very slight physical > characteristics that are similar with Down syndrome. However, in most cases > the individual only has a few of these characteristics (like they might not > have the simeon crease, or they have it in only one hand, or they don't have > the smaller mouth, or the low set ears, etc) So, they probably have some > characteristics, but not all, and the characteristics they do have, seem to > fade as they get older and are not as prominent. > > Now, like I said, this is not all cases. Because there are many cases where > the individual has the extra chromosomes in the area that affects the > physical appearence. So, if those chromosomes are in that area, then they > will have the characteristics more. > > A lot of people think that because the person " looks " like they have Ds > then they wont function any higher than a typical person with Ds. This is > not true. The appearance has nothing to do with the development. > > So, I guess I was being a little sarcastic there, when I said that, but > honestly, people are saying that all the time and it urks me! lol Just > because they don't look like they have Ds or they are not as delayed as a > person with Ds, doesn't mean they don't have issue of their own! It just > means that they DON'T have Ds and they DO have MDS. As soon as doctors and > therapists quit comparing the two when it comes to their care and > development, the kids will start getting the treatment they deserve! > > Ok....second time on soap box today!!! LOL I need to really kick that box > under the bed! > Kristy > > > Bolduc <jhunter5431@... <jhunter5431%40charter.net>> > wrote: > Kristy, > What are the physical characteristics of mosaic Down syndrome? > > Jen > Re: Re: Help! > > Hi Trista > I burns me when they say " he doesn't have physical characteristics " LOL > He doesn't have physical characterstics of DOWN SYNDROME because he doesn't > HAVE DOWN SYNDROME!!! However, I bet he does have physical characteristics > of mosaic Down syndrome!!! > > Ok.... I will step off that soap box lol > > If you go to our website and look at the developmental milestones > http://www.imdsa.org/Information/develop.htm > You can look at that and see if he is on target for MDS and how far behind > he is for a child without extra chromosomes when you compare it to siblings. > > If your baby is lacking in any of these areas, even a tiny bit, then he > needs the therapy! It will only help him. Your EI person should know what > they are doing and it seems as though they aren't real knowledgable in > therapy in general if they don't have a clue what to do. There are many good > exercises to do to strengthen muscles. So, if he is not crawling or sitting > up on his own, those exercises should be done. > > If you have more questions....ASK ASK ASK!!! We have plenty of folks here > who are way closer to EI than I am, since it was 20 yr ago when I did it! > > Kristy > > gabrielsmom@... <gabrielsmom%40charter.net> wrote: > Camisha, > > My son, , just turned 8 months this last week. I appreciate your > question, Camisha and I would like to sand this question out to anyone that > might have suggestions. > Except for eye & sinus infections my son has been a carbin copy of my older > son (no MDS). Many doctors, nurses, and generally anyone that has heard his > diagnosis refuse to beleive that he has MDS (he shows no physical > characterists). SO I have been overwhelmed trying to read (too much) > information so that I can be proactive. I am scared that I am going to miss > something important because I am ignorant but the professionals aren't > taking his MDS seriously. The first EI from BabyNet would only come to the > house in the afternoon knowing that is when he slept and she would have his > paperwork filled out before she got there. Now, when I say filled out, I > mean she would make up things that they did for the visit & have it written > down on his sheet before she even got to the house, regardless of the fact > that often he just slept through her visit never even getting out of his > crib. My husband is disabled and stays home with our 2 boys and my 92 yr old > grandma. He cannot read very > well since his severe brain injury so he woul djust sign them because she > said he had to. I really feel like she took advantage of him and our son > missed out. The new EI seems really nice but doesn't seem to have very many > suggestions for us to work on or watch for. Is this the way it is supposed > to be?? I often work anywhere from 45-65 hours (and more in tax season), to > support my entire family of 5 on a secretary salary and I feel like I have > little time to do enough research. Any suggestions for me? > Thanks > Trista > > ---- Camisha <chopkins@... <chopkins%40petrincorp.com>> wrote: > > Excuse me if what i am about to ask seems rude or " ignorant " , but do > > these children truly have this " in-depth " speech issues/problems? I > > am still learning so much and i realize my Macie is still so young > > (almost 9mths) but i just wonder if speech is truly such a big > > problem for everyone? > > Is there anyone out there that has NOT had such a hard time with > > speech with their MDS child? To me, speech therapy is one thing, but > > to need devices and have a child that simply can not communicate is > > something else. Or is it maybe that the children that have such a > > hard time with this have other diagnosis along with MDS? Please help > > me understand. > > Thanks--Camisha > > > > Kristy Colvin > IMDSA President > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > International Mosaic Down Syndrome Association > PH: > Toll Free: 1-888-MDS-LINK > http://www.imdsa.org > http://www.mosaicmoments.today.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Kristy, Zephany's eyes are almond shaped and she does have the flat bridge nose. BUT my daughter with a total different chromosome diagnosis has the same flat bridge nose. Both daughters also have the wide gap between their big toe and 2nd toe. Also all 3 of my daughters have small ears and the oldest has no known chromosome abnormalities. She's never been tested to see if she is a carrier as I am. Back to Zephany, she has great muscle tone and she does everything a typical dev. child does and MORE! Re: Re: Help! > > Hi Trista > I burns me when they say " he doesn't have physical characteristics " LOL > He doesn't have physical characterstics of DOWN SYNDROME because he doesn't > HAVE DOWN SYNDROME!!! However, I bet he does have physical characteristics > of mosaic Down syndrome!!! > > Ok.... I will step off that soap box lol > > If you go to our website and look at the developmental milestones > http://www.imdsa.org/Information/develop.htm > You can look at that and see if he is on target for MDS and how far behind > he is for a child without extra chromosomes when you compare it to siblings. > > If your baby is lacking in any of these areas, even a tiny bit, then he > needs the therapy! It will only help him. Your EI person should know what > they are doing and it seems as though they aren't real knowledgable in > therapy in general if they don't have a clue what to do. There are many good > exercises to do to strengthen muscles. So, if he is not crawling or sitting > up on his own, those exercises should be done. > > If you have more questions....ASK ASK ASK!!! We have plenty of folks here > who are way closer to EI than I am, since it was 20 yr ago when I did it! > > Kristy > > gabrielsmom@... <gabrielsmom%40charter.net> wrote: > Camisha, > > My son, , just turned 8 months this last week. I appreciate your > question, Camisha and I would like to sand this question out to anyone that > might have suggestions. > Except for eye & sinus infections my son has been a carbin copy of my older > son (no MDS). Many doctors, nurses, and generally anyone that has heard his > diagnosis refuse to beleive that he has MDS (he shows no physical > characterists). SO I have been overwhelmed trying to read (too much) > information so that I can be proactive. I am scared that I am going to miss > something important because I am ignorant but the professionals aren't > taking his MDS seriously. The first EI from BabyNet would only come to the > house in the afternoon knowing that is when he slept and she would have his > paperwork filled out before she got there. Now, when I say filled out, I > mean she would make up things that they did for the visit & have it written > down on his sheet before she even got to the house, regardless of the fact > that often he just slept through her visit never even getting out of his > crib. My husband is disabled and stays home with our 2 boys and my 92 yr old > grandma. He cannot read very > well since his severe brain injury so he woul djust sign them because she > said he had to. I really feel like she took advantage of him and our son > missed out. The new EI seems really nice but doesn't seem to have very many > suggestions for us to work on or watch for. Is this the way it is supposed > to be?? I often work anywhere from 45-65 hours (and more in tax season), to > support my entire family of 5 on a secretary salary and I feel like I have > little time to do enough research. Any suggestions for me? > Thanks > Trista > > ---- Camisha <chopkins@... <chopkins%40petrincorp.com>> wrote: > > Excuse me if what i am about to ask seems rude or " ignorant " , but do > > these children truly have this " in-depth " speech issues/problems? I > > am still learning so much and i realize my Macie is still so young > > (almost 9mths) but i just wonder if speech is truly such a big > > problem for everyone? > > Is there anyone out there that has NOT had such a hard time with > > speech with their MDS child? To me, speech therapy is one thing, but > > to need devices and have a child that simply can not communicate is > > something else. Or is it maybe that the children that have such a > > hard time with this have other diagnosis along with MDS? Please help > > me understand. > > Thanks--Camisha > > > > Kristy Colvin > IMDSA President > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > International Mosaic Down Syndrome Association > PH: > Toll Free: 1-888-MDS-LINK > http://www.imdsa.org > http://www.mosaicmoments.today.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 It could be that the other chromosome disorder has some of the same characteristics. But I think it is important to point out that many families share the same characteristics just like they would brown eyes! It could be that you are a carrier, but since one girl has nothing and the other 2 have something completely different, I would think you probably aren't a carrier and it just is one of those things. I realize your aunt had the same 10 chromosome disorder, so that makes you wonder about it, but then I would think all your girls should have it. Definitely interesting stuff! You should have seen us outside our first conference in 2004 during our break time! We were all taking off our shoes and inspecting each other's toes and then comparing hands and fingers! To the outsider, just driving by, I imagine we looked like we had lost our minds! LOL Kristy Bolduc wrote: Kristy, Zephany's eyes are almond shaped and she does have the flat bridge nose. BUT my daughter with a total different chromosome diagnosis has the same flat bridge nose. Both daughters also have the wide gap between their big toe and 2nd toe. Also all 3 of my daughters have small ears and the oldest has no known chromosome abnormalities. She's never been tested to see if she is a carrier as I am. Back to Zephany, she has great muscle tone and she does everything a typical dev. child does and MORE! Re: Re: Help! > > Hi Trista > I burns me when they say " he doesn't have physical characteristics " LOL > He doesn't have physical characterstics of DOWN SYNDROME because he doesn't > HAVE DOWN SYNDROME!!! However, I bet he does have physical characteristics > of mosaic Down syndrome!!! > > Ok.... I will step off that soap box lol > > If you go to our website and look at the developmental milestones > http://www.imdsa.org/Information/develop.htm > You can look at that and see if he is on target for MDS and how far behind > he is for a child without extra chromosomes when you compare it to siblings. > > If your baby is lacking in any of these areas, even a tiny bit, then he > needs the therapy! It will only help him. Your EI person should know what > they are doing and it seems as though they aren't real knowledgable in > therapy in general if they don't have a clue what to do. There are many good > exercises to do to strengthen muscles. So, if he is not crawling or sitting > up on his own, those exercises should be done. > > If you have more questions....ASK ASK ASK!!! We have plenty of folks here > who are way closer to EI than I am, since it was 20 yr ago when I did it! > > Kristy > > gabrielsmom@... <gabrielsmom%40charter.net> wrote: > Camisha, > > My son, , just turned 8 months this last week. I appreciate your > question, Camisha and I would like to sand this question out to anyone that > might have suggestions. > Except for eye & sinus infections my son has been a carbin copy of my older > son (no MDS). Many doctors, nurses, and generally anyone that has heard his > diagnosis refuse to beleive that he has MDS (he shows no physical > characterists). SO I have been overwhelmed trying to read (too much) > information so that I can be proactive. I am scared that I am going to miss > something important because I am ignorant but the professionals aren't > taking his MDS seriously. The first EI from BabyNet would only come to the > house in the afternoon knowing that is when he slept and she would have his > paperwork filled out before she got there. Now, when I say filled out, I > mean she would make up things that they did for the visit & have it written > down on his sheet before she even got to the house, regardless of the fact > that often he just slept through her visit never even getting out of his > crib. My husband is disabled and stays home with our 2 boys and my 92 yr old > grandma. He cannot read very > well since his severe brain injury so he woul djust sign them because she > said he had to. I really feel like she took advantage of him and our son > missed out. The new EI seems really nice but doesn't seem to have very many > suggestions for us to work on or watch for. Is this the way it is supposed > to be?? I often work anywhere from 45-65 hours (and more in tax season), to > support my entire family of 5 on a secretary salary and I feel like I have > little time to do enough research. Any suggestions for me? > Thanks > Trista > > ---- Camisha <chopkins@... <chopkins%40petrincorp.com>> wrote: > > Excuse me if what i am about to ask seems rude or " ignorant " , but do > > these children truly have this " in-depth " speech issues/problems? I > > am still learning so much and i realize my Macie is still so young > > (almost 9mths) but i just wonder if speech is truly such a big > > problem for everyone? > > Is there anyone out there that has NOT had such a hard time with > > speech with their MDS child? To me, speech therapy is one thing, but > > to need devices and have a child that simply can not communicate is > > something else. Or is it maybe that the children that have such a > > hard time with this have other diagnosis along with MDS? Please help > > me understand. > > Thanks--Camisha > > > > Kristy Colvin > IMDSA President > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > International Mosaic Down Syndrome Association > PH: > Toll Free: 1-888-MDS-LINK > http://www.imdsa.org > http://www.mosaicmoments.today.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 You crack me up!!! From: MosaicDS [mailto:MosaicDS ] On Behalf Of Kristy Colvin Sent: Tuesday, July 22, 2008 9:58 PM To: MosaicDS Subject: Re: Re: Help! It could be that the other chromosome disorder has some of the same characteristics. But I think it is important to point out that many families share the same characteristics just like they would brown eyes! It could be that you are a carrier, but since one girl has nothing and the other 2 have something completely different, I would think you probably aren't a carrier and it just is one of those things. I realize your aunt had the same 10 chromosome disorder, so that makes you wonder about it, but then I would think all your girls should have it. Definitely interesting stuff! You should have seen us outside our first conference in 2004 during our break time! We were all taking off our shoes and inspecting each other's toes and then comparing hands and fingers! To the outsider, just driving by, I imagine we looked like we had lost our minds! LOL Kristy Bolduc <jhunter5431@... <mailto:jhunter5431%40charter.net> > wrote: Kristy, Zephany's eyes are almond shaped and she does have the flat bridge nose. BUT my daughter with a total different chromosome diagnosis has the same flat bridge nose. Both daughters also have the wide gap between their big toe and 2nd toe. Also all 3 of my daughters have small ears and the oldest has no known chromosome abnormalities. She's never been tested to see if she is a carrier as I am. Back to Zephany, she has great muscle tone and she does everything a typical dev. child does and MORE! Re: Re: Help! > > Hi Trista > I burns me when they say " he doesn't have physical characteristics " LOL > He doesn't have physical characterstics of DOWN SYNDROME because he doesn't > HAVE DOWN SYNDROME!!! However, I bet he does have physical characteristics > of mosaic Down syndrome!!! > > Ok.... I will step off that soap box lol > > If you go to our website and look at the developmental milestones > http://www.imdsa.org/Information/develop.htm > You can look at that and see if he is on target for MDS and how far behind > he is for a child without extra chromosomes when you compare it to siblings. > > If your baby is lacking in any of these areas, even a tiny bit, then he > needs the therapy! It will only help him. Your EI person should know what > they are doing and it seems as though they aren't real knowledgable in > therapy in general if they don't have a clue what to do. There are many good > exercises to do to strengthen muscles. So, if he is not crawling or sitting > up on his own, those exercises should be done. > > If you have more questions....ASK ASK ASK!!! We have plenty of folks here > who are way closer to EI than I am, since it was 20 yr ago when I did it! > > Kristy > > gabrielsmom@... <mailto:gabrielsmom%40charter.net> <gabrielsmom%40charter.net> wrote: > Camisha, > > My son, , just turned 8 months this last week. I appreciate your > question, Camisha and I would like to sand this question out to anyone that > might have suggestions. > Except for eye & sinus infections my son has been a carbin copy of my older > son (no MDS). Many doctors, nurses, and generally anyone that has heard his > diagnosis refuse to beleive that he has MDS (he shows no physical > characterists). SO I have been overwhelmed trying to read (too much) > information so that I can be proactive. I am scared that I am going to miss > something important because I am ignorant but the professionals aren't > taking his MDS seriously. The first EI from BabyNet would only come to the > house in the afternoon knowing that is when he slept and she would have his > paperwork filled out before she got there. Now, when I say filled out, I > mean she would make up things that they did for the visit & have it written > down on his sheet before she even got to the house, regardless of the fact > that often he just slept through her visit never even getting out of his > crib. My husband is disabled and stays home with our 2 boys and my 92 yr old > grandma. He cannot read very > well since his severe brain injury so he woul djust sign them because she > said he had to. I really feel like she took advantage of him and our son > missed out. The new EI seems really nice but doesn't seem to have very many > suggestions for us to work on or watch for. Is this the way it is supposed > to be?? I often work anywhere from 45-65 hours (and more in tax season), to > support my entire family of 5 on a secretary salary and I feel like I have > little time to do enough research. Any suggestions for me? > Thanks > Trista > > ---- Camisha <chopkins@... <mailto:chopkins%40petrincorp.com> <chopkins%40petrincorp.com>> wrote: > > Excuse me if what i am about to ask seems rude or " ignorant " , but do > > these children truly have this " in-depth " speech issues/problems? I > > am still learning so much and i realize my Macie is still so young > > (almost 9mths) but i just wonder if speech is truly such a big > > problem for everyone? > > Is there anyone out there that has NOT had such a hard time with > > speech with their MDS child? To me, speech therapy is one thing, but > > to need devices and have a child that simply can not communicate is > > something else. Or is it maybe that the children that have such a > > hard time with this have other diagnosis along with MDS? Please help > > me understand. > > Thanks--Camisha > > > > Kristy Colvin > IMDSA President > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > International Mosaic Down Syndrome Association > PH: > Toll Free: 1-888-MDS-LINK > http://www.imdsa.org > http://www.mosaicmoments.today.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 I've been reading this post and I find the discussion so interesting. I share some of the same experiences. Sydney does not have all of the physcial characteristics either. She has almond shaped eyes which I actually thing make her more beautiful and unique. She has a flat nasal bridge and her profile looks a bit flat. She also has shorter limbs and is very petite. She has low muscle tone mostly in her upper body. That about sums up her MDS physical characteristics. Kristy it is interesting to hear you talk about Tim's features fading and them becoming more pronounced again. I actually think that there are days that Sydney's features are more pronounced and then there are days when you can barely notice them. I have always found this interesting and wondered if I was just imagining it or if it in fact was happening for real. I wonder why that tends to happen. Hmmmm Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Carmen More than likely in Sydney's case, when you see the features more on some days and not so much on others, it is probably when she is tired or not feeling well. The reason for this is because when we are tired or not feeling well, we do not hold our facial muscles up as much. (You know what you look like after an all nighter when Sydney didn't sleep well?lol) All the parents have reported that they can see the features more in those instances. For Tim, it is a little different. He didn't have those features and now they are there. So, definitely strange.....but I don't know why! Kristy Carmen Naylor wrote: I've been reading this post and I find the discussion so interesting. I share some of the same experiences. Sydney does not have all of the physcial characteristics either. She has almond shaped eyes which I actually thing make her more beautiful and unique. She has a flat nasal bridge and her profile looks a bit flat. She also has shorter limbs and is very petite. She has low muscle tone mostly in her upper body. That about sums up her MDS physical characteristics. Kristy it is interesting to hear you talk about Tim's features fading and them becoming more pronounced again. I actually think that there are days that Sydney's features are more pronounced and then there are days when you can barely notice them. I have always found this interesting and wondered if I was just imagining it or if it in fact was happening for real. I wonder why that tends to happen. Hmmmm Carmen Kristy Colvin IMDSA President ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa.org http://www.mosaicmoments.today.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Thanks for that information Kristy. That makes a lot of sense. Sydney actually has a cold and we got very little sleep last night. So I am having one of those days today. LOL! > > Carmen > More than likely in Sydney's case, when you see the features more on some days and not so much on others, it is probably when she is tired or not feeling well. The reason for this is because when we are tired or not feeling well, we do not hold our facial muscles up as much. (You know what you look like after an all nighter when Sydney didn't sleep well?lol) All the parents have reported that they can see the features more in those instances. > > For Tim, it is a little different. He didn't have those features and now they are there. So, definitely strange.....but I don't know why! > Kristy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Actually, two brown-eyed parents can have a blue-eyed child if both carry the recessive gene for blue eyes. If both carry the recessive gene, each child they have will have a 25% chance of having blue eyes and a 75% chance of having brown eyes. Each child will also have a 50% chance of carrying the recessive gene for blue eyes. If only one parent carries the recessive gene, each child they have will have a 50% chance of carrying the recessive gene also, but no chance of having blue eyes. Green eyes are the resut of incomplete dominance. For some reason, the dominant brown gene does not completely dominate the recessive blue gene. A. Special Educator Simon Kenton HS 11132 Madison Pk. Independence, KY 41051 (859)960-0348 cynthia.jones@... ________________________________ From: MosaicDS on behalf of Sent: Wed 7/23/2008 2:21 PM To: MosaicDS Subject: Re: Help! Brushfield spots, perhaps? My oldest has had beautiful twinkling stars in her eyes since birth, even with deep dark brown eyes. Mygeneticist says that the stars can only be in " blue " type eyes. They told me CH had brushfield spots, butthey must have disappeared, but e does nit have them now. Simeon's eyes are most unusual. He has a brown sun-looking star splash in a dark green eye and a varigated eye for the other eye. At a distance, they " appear " brown, and genetically speaking, they are brown. But up close is a whole different story. I think the way it goes that if there is even a fleck of brown in your eyes, then genetically they are brown, even if they appear blue. (Premise behind this is two brown-eyed parents should only be able to have a brown-eyed child. If they have grey/blue with no fleck or speck of brown, then something is in the woodpile....so to speak..) <br> > > > Excuse me if what i am about to ask seems rude or " ignorant " , but do > > > these children truly have this " in-depth " speech issues/problems? I > > > am still learning so much and i realize my Macie is still so young > > > (almost 9mths) but i just wonder if speech is truly such a big > > > problem for everyone? > > > Is there anyone out there that has NOT had such a hard time with > > > speech with their MDS child? To me, speech therapy is one thing, but > > > to need devices and have a child that simply can not communicate is > > > something else. Or is it maybe that the children that have such a > > > hard time with this have other diagnosis along with MDS? Please help > > > me understand. > > > Thanks--Camisha > > > > > > > Kristy Colvin > > IMDSA President > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > International Mosaic Down Syndrome Association > > PH: > > Toll Free: 1-888-MDS-LINK > > http://www.imdsa.org <http://www.imdsa.org/> > > http://www.mosaicmoments.today.com <http://www.mosaicmoments.today.com/> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 I have green eyes. My 4 kids have blue. the kids dads eyes are blue as well. Re: Help! Brushfield spots, perhaps? My oldest has had beautiful twinkling stars in her eyes since birth, even with deep dark brown eyes. Mygeneticist says that the stars can only be in " blue " type eyes. They told me CH had brushfield spots, butthey must have disappeared, but e does nit have them now. Simeon's eyes are most unusual. He has a brown sun-looking star splash in a dark green eye and a varigated eye for the other eye. At a distance, they " appear " brown, and genetically speaking, they are brown. But up close is a whole different story. I think the way it goes that if there is even a fleck of brown in your eyes, then genetically they are brown, even if they appear blue. (Premise behind this is two brown-eyed parents should only be able to have a brown-eyed child. If they have grey/blue with no fleck or speck of brown, then something is in the woodpile....so to speak..) <br> > > > Excuse me if what i am about to ask seems rude or " ignorant " , but do > > > these children truly have this " in-depth " speech issues/problems? I > > > am still learning so much and i realize my Macie is still so young > > > (almost 9mths) but i just wonder if speech is truly such a big > > > problem for everyone? > > > Is there anyone out there that has NOT had such a hard time with > > > speech with their MDS child? To me, speech therapy is one thing, but > > > to need devices and have a child that simply can not communicate is > > > something else. Or is it maybe that the children that have such a > > > hard time with this have other diagnosis along with MDS? Please help > > > me understand. > > > Thanks--Camisha > > > > > > > Kristy Colvin > > IMDSA President > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > International Mosaic Down Syndrome Association > > PH: > > Toll Free: 1-888-MDS-LINK > > http://www.imdsa.org <http://www.imdsa.org/> > > http://www.mosaicmoments.today.com <http://www.mosaicmoments.today.com/> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2009 Report Share Posted July 28, 2009 My daughter (age 9) has had issues with chronic constipation since she was 3. She's been prescribed miralax a number of times although this is the first time we've had her on it for more than a few days. Foolishly, I was of the belief that fiber/water would be sufficient. Now she's having major soiling problems daily (started about 2 weeks after starting the miralax). She doesn't even feel it come out. She's also getting urinary tract infections rougly 1/month and one recently got up into her kidneys and did some minor damage. Because of the soiling, I've been pushing to find a cause so we can treat. I'm not a fan of having her on any stool softener/laxative long term. We've ruled out neurological issues, nerve damage, anatomical defects in the intestines, celiac disease (at least she tested negative in the tests). The only thing the tests show so far is mild anemia. Her BUN/Creatinine was 41 so need to follow up with her reg. pediatrician. In other words, there is nothing wrong with her except that she poops in her pants without being aware of it and has tacky sticky bowel movements that even I have a hard time getting cleaned up. She ought to have lots of fun when school starts up. One of the tests was a barium enema that did a good job of cleaning out a lot of the backed up stool. However, by the following day, problems got worse and remained that way for about a week. Then we were right back where we started. Even though she has at least 1 bowel movement daily, her intestines are packed with stool. Have any of you experienced this with your children? Any suggestions? I'm tempted to put her on a gluten free diet for a couple of weeks even though she tested negative for Celiac, but would appreciate any other suggestions. Thank you. Quote Link to comment Share on other sites More sharing options...
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