Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 Hi, my granddaughter is 3 1/2 yrs old. She has delayed motor skills and speech. She has been seeing a speech therapist once to twice a week for over a year now. My daughter was told by her therapist that my granddaughter has apraxia. She said that she has no control (or very little control) of her tongue, her jaws are weak and is now going to have to be evaluated for her physical therapy. The therapist says that with time her speech will improve. By the way, this is the third therapist in the time she has been going, they keep leaving the hospital. She had one therapist that said she may never be able to speak so that she can be understood. She said that she might have to learn to sign, but she was born with camptodactoly (misspelled, I'm sure), that is where your fingers will only extend so much. She was born with 4 fingers that wouldn't extend, she has had surgery on both hands and they are immensely improved but the fingers till do not extend 100%. What causes apraxia? Is it forever? Is there a possibility there are other problems? She was a emergency c-section child, one month early. I'd appreciate any info you could send me. My poor daughter is beside herself most of the time. My granddaughter is very-very active, short attention span (none most of the time), never stops trying to communicate, is very bright and very demanding. Thanks, Beverly BDHeur@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 Hi! I am also a grandmother to the Kayla she is the sparkler of our lives! She was born on the 4th of July and now is 10 years old. She was our first grand baby and we had no clue that she had DS. Sure I got my balloons broken for a week or so! I new nothing of about having a child with DS. I dug in and read everything I could and realized we have a child that will give us miracles everyday and that she has done!!She now has a younger brother that treats her as she is. We have never treated Kayla any different than the normal child,Yes we have to work harder and maybe a longer but she's worth every minute! She had open heart at 3 years and I can't remember, what it was I know I wished I could have been there for her! She was home in 5 days.We live in Indiana and about 30 mintues from Riley Hospital. She's had her eyes, the tubes,toncil's out. Having her,she lives next door has show me along about what life is all about!!!We now have 4 grandbabies and they all live right next to us and I love it!! Papaw got to retire about 4 years ago and he's the best babysitter! We keeps the kids on 2 days as I would never and her parents wouldn't put her into daycare. My Mother has been ill since May and I've have been helping with her staying the nights taking to Doc.So Papaw has taken over for me! I don't get much time to play on the puter but I love reading about everyone and what goes on!! Just wanted to jump in and say Hi! Susie from Indiana I have 3 children and 4 of the most greatest gift from God, Kayla 10 (DS) her brother Zach7, and Jaycee 4 the drama queen and my sweet AJ 2, the terriable 2 kids. KATHLEEN TRIPP <ktripp99@...> wrote: hi, mary ann, glad he is your buddy, sounds like he has a loving family. my son was diagonsised sleep apnea, and he is four years old. We just found out that he has a large tonsil, and it needs to be removed. surgery scheduled next month. So, it does not hurt to check your buddy to see if there is any obstruct thing in a way for sleeping. i m pretty sure you already check on that... im new to it, tho... okay welcome to our group. i hope you find some supports from here. i really love this group myselfl, smile. kkmary ann kamp <ekampsbcglobal (DOT) net> wrote: Hi I just wanted to email some who have the same situations that we have here with my grandson. He is 9 yrs old and has down sydrome. He was my first grandchild and only boy. I love his dearly. He is my buddy!!! He has just found out that he has sleep apnea and he is wearing his night mask for cpak pretty good. At least for 3-4 hours now. I will also be going to get tested so I tell him grandma will be wearing one too. I just want to keep in touch with other people and any information of any kind i would appreciate hearing about it. thanks Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2011 Report Share Posted January 7, 2011 Hello and Lea, I was scanning over my messages and saw where your children only drank chocolate milk! My grandson Lucas has LIVED on almost only chocolate milk all these years. He is 6 years old and in first grade and he still likes his in his baby bottle...in fact yesterday after school he was over here and he said he'd had chocolate milk for lunch, and I said did you bring your baby bottle and pour it in there to drink, and he said nooo the other kids would laugh at him. But when he was smaller I really worried about him as he would only take about one bite of anything else. He goes through spells though, like I once saw him eat a whole piece of pepperoni pizza, spurts like that. But then the next day you give him the same thing and he smells it and won't eat it.. I don't know how much food I've thrown away because he simply wouldn't eat it. And here is the funny thing I used to think he was going to really be malnourished, but he is almost the biggest kid in his class! He is tall and lean but big, his size 10 jeans are tight! He is a very quirky child but talks eloquently and is very smart...will talk later on this Carolyn Seeley wrote: > > My son went through a chocolate milk only period too! Amazingly, he > is now my least picky > eater. > > On 1/6/2011 7:43 PM, & Godfrey wrote: > > Welcome to the group! > > > > My son also has some strange quirks about food. He hasn't had > vegetables or > > fruit since he was 1. He's 13 now and the doctor can't figure out > how come > > he is so healthy! But he is, every test they do on him comes back > perfect! > > > > > > > > It's very cool that your daughter can do magic tricks! I love them > but can't > > ever figure out how to do them and I think it's awesome that she can > figure > > out how to do them when no one shows her! > > > > > > > > > > > > Estevan, SK > > > > Canada > > > > > > > > > > > > > > > > > > > > -- My granddaughter > > > > > > > > > > > > I am new to this group and I hope to learn on ways to help my precious > > little girl. She is 5 and has never been like other children. I have 6 > > children and 6 grandchildren and she is one of a kind. She is my oldest > > grandchild and we have raised her since birth. She is healthy though she > > only drinks chocolate milk and rarely eats solid foods. The doctors have > > really been confused about that since she is at a healthy weight and > > actually the size of a 7 yr old. She doesn't like to have her hair > brushed > > or her face touched by anyone but when she was a baby, I would turn the > > lights off at bedtime and rub her face and head in the dark so she > would get > > used to touch. Now she will let me touch her face but is still having > > meltdowns when it comes to her hair. She is very artistic and can do > magic > > tricks (no one in the family does tricks for her to learn this) that > takes > > us time to try to figure out how she does them. She is very > intellegent but > > struggles with speech. Her learning capa > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2011 Report Share Posted January 7, 2011 I hope this doesn't sound wrong, but I am so glad to hear that, though I don't wish this condition on any child. Just knowing that I am not alone in this is comforting. I get nervous every time I have to take my granddaughter to the doctor because they look at me like I have neglected her because of the chocolate milk. They don't realize the struggle it is to try to get her to eat anything solid. She has don't the pizza thing too. She will eat it out of the blue and then turn around the next day and refuse to touch it. She will eat some about every three weeks but other than that, its just the chocolate milk. She will also eat popcorn chicken or chicken nuggets on occasions. It is still hard to try to explain to doctors why she only takes liquid. The doctors here aren't use to children with AS and I am trying to find one close to start taking her to. So far the closest is about a two hour drive away from me. It bothers me that people act like she is an alien or not quite human. Do people ever compare yours to other children? That hurts the worst because she is perfect in my eyes.From: Carolyn <charper777@...>Autism and Aspergers Treatment Sent: Fri, January 7, 2011 10:27:53 AMSubject: Re: My granddaughter Hello and Lea, I was scanning over my messages and saw where your children only drank chocolate milk! My grandson Lucas has LIVED on almost only chocolate milk all these years. He is 6 years old and in first grade and he still likes his in his baby bottle...in fact yesterday after school he was over here and he said he'd had chocolate milk for lunch, and I said did you bring your baby bottle and pour it in there to drink, and he said nooo the other kids would laugh at him.But when he was smaller I really worried about him as he would only take about one bite of anything else. He goes through spells though, like I once saw him eat a whole piece of pepperoni pizza, spurts like that. But then the next day you give him the same thing and he smells it and won't eat it.. I don't know how much food I've thrown away because he simply wouldn't eat it. And here is the funny thing I used to think he was going to really be malnourished, but he is almost the biggest kid in his class! He is tall and lean but big, his size 10 jeans are tight!He is a very quirky child but talks eloquently and is very smart...will talk later on thisCarolyn Seeley wrote:>> My son went through a chocolate milk only period too! Amazingly, he> is now my least picky> eater.>> On 1/6/2011 7:43 PM, & Godfrey wrote:> > Welcome to the group!> >> > My son also has some strange quirks about food. He hasn't had > vegetables or> > fruit since he was 1. He's 13 now and the doctor can't figure out > how come> > he is so healthy! But he is, every test they do on him comes back > perfect!> >> >> >> > It's very cool that your daughter can do magic tricks! I love them > but can't> > ever figure out how to do them and I think it's awesome that she can > figure> > out how to do them when no one shows her!> >> >> >> > > >> > Estevan, SK> >> > Canada> >> >> >> >> >> >> >> >> >> > -- My granddaughter> >> >> >> >> >> > I am new to this group and I hope to learn on ways to help my precious> > little girl. She is 5 and has never been like other children. I have 6> > children and 6 grandchildren and she is one of a kind. She is my oldest> > grandchild and we have raised her since birth. She is healthy though she> > only drinks chocolate milk and rarely eats solid foods. The doctors have> > really been confused about that since she is at a healthy weight and> > actually the size of a 7 yr old. She doesn't like to have her hair > brushed> > or her face touched by anyone but when she was a baby, I would turn the> > lights off at bedtime and rub her face and head in the dark so she > would get> > used to touch. Now she will let me touch her face but is still having> > meltdowns when it comes to her hair. She is very artistic and can do > magic> > tricks (no one in the family does tricks for her to learn this) that > takes> > us time to try to figure out how she does them. She is very > intellegent but> > struggles with speech. Her learning capa> >> >> >> >> >> >> >>> ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2011 Report Share Posted January 7, 2011 Lea, I completely understand the preferences for liquids, my son would drink white milk over food most times a few years ago. Try mixing some ensure in with the milk just for nutrients. The Dr. had me do that with my son when he wasn't growing and it helped him a lot.From: Lea Hutto <leamadea@...>To: Autism and Aspergers Treatment Sent: Fri, January 7, 2011 4:20:11 PMSubject: Re: My granddaughter I hope this doesn't sound wrong, but I am so glad to hear that, though I don't wish this condition on any child. Just knowing that I am not alone in this is comforting. I get nervous every time I have to take my granddaughter to the doctor because they look at me like I have neglected her because of the chocolate milk. They don't realize the struggle it is to try to get her to eat anything solid. She has don't the pizza thing too. She will eat it out of the blue and then turn around the next day and refuse to touch it. She will eat some about every three weeks but other than that, its just the chocolate milk. She will also eat popcorn chicken or chicken nuggets on occasions. It is still hard to try to explain to doctors why she only takes liquid. The doctors here aren't use to children with AS and I am trying to find one close to start taking her to. So far the closest is about a two hour drive away from me. It bothers me that people act like she is an alien or not quite human. Do people ever compare yours to other children? That hurts the worst because she is perfect in my eyes.From: Carolyn <charper777@...>Autism and Aspergers Treatment Sent: Fri, January 7, 2011 10:27:53 AMSubject: Re: My granddaughter Hello and Lea, I was scanning over my messages and saw where your children only drank chocolate milk! My grandson Lucas has LIVED on almost only chocolate milk all these years. He is 6 years old and in first grade and he still likes his in his baby bottle...in fact yesterday after school he was over here and he said he'd had chocolate milk for lunch, and I said did you bring your baby bottle and pour it in there to drink, and he said nooo the other kids would laugh at him.But when he was smaller I really worried about him as he would only take about one bite of anything else. He goes through spells though, like I once saw him eat a whole piece of pepperoni pizza, spurts like that. But then the next day you give him the same thing and he smells it and won't eat it.. I don't know how much food I've thrown away because he simply wouldn't eat it. And here is the funny thing I used to think he was going to really be malnourished, but he is almost the biggest kid in his class! He is tall and lean but big, his size 10 jeans are tight!He is a very quirky child but talks eloquently and is very smart...will talk later on thisCarolyn Seeley wrote:>> My son went through a chocolate milk only period too! Amazingly, he> is now my least picky> eater.>> On 1/6/2011 7:43 PM, & Godfrey wrote:> > Welcome to the group!> >> > My son also has some strange quirks about food. He hasn't had > vegetables or> > fruit since he was 1. He's 13 now and the doctor can't figure out > how come> > he is so healthy! But he is, every test they do on him comes back > perfect!> >> >> >> > It's very cool that your daughter can do magic tricks! I love them > but can't> > ever figure out how to do them and I think it's awesome that she can > figure> > out how to do them when no one shows her!> >> >> >> > > >> > Estevan, SK> >> > Canada> >> >> >> >> >> >> >> >> >> > -- My granddaughter> >> >> >> >> >> > I am new to this group and I hope to learn on ways to help my precious> > little girl. She is 5 and has never been like other children. I have 6> > children and 6 grandchildren and she is one of a kind. She is my oldest> > grandchild and we have raised her since birth. She is healthy though she> > only drinks chocolate milk and rarely eats solid foods. The doctors have> > really been confused about that since she is at a healthy weight and> > actually the size of a 7 yr old. She doesn't like to have her hair > brushed> > or her face touched by anyone but when she was a baby, I would turn the> > lights off at bedtime and rub her face and head in the dark so she > would get> > used to touch. Now she will let me touch her face but is still having> > meltdowns when it comes to her hair. She is very artistic and can do > magic> > tricks (no one in the family does tricks for her to learn this) that > takes> > us time to try to figure out how she does them. She is very > intellegent but> > struggles with speech. Her learning capa> >> >> >> >> >> >> >>> ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2011 Report Share Posted January 8, 2011 Wow your daughter sounds like my grandson! He will only eat things that are white also, chicken nuggets just a few bites maybe one or two French fries will take a few bites out of a Mc's cheeseburger likes sugar cookies sometimes a few bites of a banana white bread peanut butter and jam but just a few bites sometimes a few bites of mash potatoes oh yes and ate a few bites of pancakes at IHOP when we went out. Then one day he will eat some brown meat and maybe some green lettuce and like I said the pizza but that phase doesn't last too long. He mostly loves his chocolate milk and it has to be a certain temperature not hot not cold... He tends to get quite cranky and can be quite feisty and speak his mind, says he hates school and wants to blow it up. I think he must be hungry. You would think my daughter would take away his chocolate milk bottle but guess she doesn't want him to starve, and besides he pitches a fit. On the other hand when he went with us to the coast to stay overnight with his cousins, uncle, and me he refused to have it in front of his cousins...also did that when they all stayed over on Christmas. It was the first time he stayed with the bigger kids. He knows it is a shameful sort of thing I guess. He did have a crisis not too long ago. He had pneumonia and was required to take a liquid antibiotic that the pharmacist insisted tasted real good. It was Levaquin. Well my daughter could not get it down him no matter what she did..most kids you can trick somehow to swallow medicine but not him, he gagged and spit and threw up..! He was really a mess. Guess he took some with juice or something but it was such a hassle and then his pneumonia got worse so I insisted we to to the ER, and they said give him the med, she said he WON " T take it, it is too bitter. They said oh no it is not go and get it and give it to him. Well my daughter filled the prescription again, thinking it must have been mixed wrong cause she took some and it waaaas bitter...but this didn't work either so back to the hospital we went. I wanted him to get a shot of Rosephin, this is good for pneumonia, I was afraid they would have to hospitalized him. Well the first visit they said they don't give shots to kids, the last visit they gave him a shot! It hurt but so what the meds was in him. Next day we went to his doctor and she found something on her list in her computer that she though might work, it wasn't so bitter. My daughter told him he HAD to take it or back to the hospital he would go to get more shots. And for the most part he took it with orange pop. He can be reasoned with I guess, did NOT want another shot. He's got many little quirks like that. He is very smart and can read already, insists he hates school and I ask him questions. He said he hates lunch time, people talk and talk and talk and won't be quiet. I told my daughter today about the chocolate milk thing, she didn't like hearing it, accepts her son as he is she said, I said that is fine but he might run into trouble and then she will need to get help for him...maybe maybe not. We will stay in denial as long as we can I guess, no real trouble yet... I could tell you a lot more of his quirks if you are interested... Carolyn in Oregon ;o) Lea Hutto wrote: > I hope this doesn't sound wrong, but I am so glad to hear that, though > I don't wish this condition on any child. Just knowing that I am not > alone in this is comforting. I get nervous every time I have to take > my granddaughter to the doctor because they look at me like I have > neglected her because of the chocolate milk. They don't realize the > struggle it is to try to get her to eat anything solid. She has don't > the pizza thing too. She will eat it out of the blue and then turn > around the next day and refuse to touch it. She will eat some about > every three weeks but other than that, its just the chocolate milk. > She will also eat popcorn chicken or chicken nuggets on occasions. It > is still hard to try to explain to doctors why she only takes liquid. > The doctors here aren't use to children with AS and I am trying to > find one close to start taking her to. So far the closest is about a > two hour drive away from me. It bothers me that people act like she is > an alien or not quite human. Do people ever compare yours to other > children? That hurts the worst because she is perfect in my eyes. > > ------------------------------------------------------------------------ > *From:* Carolyn <charper777@...> > *To:* Autism and Aspergers Treatment > *Sent:* Fri, January 7, 2011 10:27:53 AM > *Subject:* Re: My granddaughter > > Hello and Lea, I was scanning over my messages and saw where your > children only drank chocolate milk! My grandson Lucas has LIVED on > almost only chocolate milk all these years. He is 6 years old and in > first grade and he still likes his in his baby bottle...in fact > yesterday after school he was over here and he said he'd had chocolate > milk for lunch, and I said did you bring your baby bottle and pour it in > there to drink, and he said nooo the other kids would laugh at him. > > But when he was smaller I really worried about him as he would only take > about one bite of anything else. He goes through spells though, like I > once saw him eat a whole piece of pepperoni pizza, spurts like that. But > then the next day you give him the same thing and he smells it and won't > eat it.. I don't know how much food I've thrown away because he simply > wouldn't eat it. And here is the funny thing I used to think he was > going to really be malnourished, but he is almost the biggest kid in his > class! He is tall and lean but big, his size 10 jeans are tight! > > He is a very quirky child but talks eloquently and is very smart...will > talk later on this > > Carolyn > > > Seeley wrote: > > > > My son went through a chocolate milk only period too! Amazingly, he > > is now my least picky > > eater. > > > > On 1/6/2011 7:43 PM, & Godfrey wrote: > > > Welcome to the group! > > > > > > My son also has some strange quirks about food. He hasn't had > > vegetables or > > > fruit since he was 1. He's 13 now and the doctor can't figure out > > how come > > > he is so healthy! But he is, every test they do on him comes back > > perfect! > > > > > > > > > > > > It's very cool that your daughter can do magic tricks! I love them > > but can't > > > ever figure out how to do them and I think it's awesome that she can > > figure > > > out how to do them when no one shows her! > > > > > > > > > > > > > > > > > > Estevan, SK > > > > > > Canada > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- My granddaughter > > > > > > > > > > > > > > > > > > I am new to this group and I hope to learn on ways to help my precious > > > little girl. She is 5 and has never been like other children. I have 6 > > > children and 6 grandchildren and she is one of a kind. She is my > oldest > > > grandchild and we have raised her since birth. She is healthy > though she > > > only drinks chocolate milk and rarely eats solid foods. The > doctors have > > > really been confused about that since she is at a healthy weight and > > > actually the size of a 7 yr old. She doesn't like to have her hair > > brushed > > > or her face touched by anyone but when she was a baby, I would > turn the > > > lights off at bedtime and rub her face and head in the dark so she > > would get > > > used to touch. Now she will let me touch her face but is still having > > > meltdowns when it comes to her hair. She is very artistic and can do > > magic > > > tricks (no one in the family does tricks for her to learn this) that > > takes > > > us time to try to figure out how she does them. She is very > > intellegent but > > > struggles with speech. Her learning capa > > > > > > > > > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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