Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 L, My Mom couldn't take the meds and did much better off them also. You may not be to the hallucinations yet, but my guess is you will get there. Mom fell several times as I look back, but I just thought she was older and unsteady on her feet. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Question My mother has only recently (last week) been diagnosed with LBD. She has the symptoms of Parkinsonism but no hallucinations (only has had hallucinations when on the drugs for Parkinsonism and because of that she has been diagnosed with LBD). My mum is fine without the medication, has anyone else experienced this? I took her to the doctor when I noticed she was unsteady on her feet, I was told she had signs of Parkinsonism and therefore he gave her the medication which caused her to have hallucinations, become anxious, angry and upset. We therefore took her off the medication and she appears fine. She has lost the ability to comprehend what she reads, knit and do jigsaws but she is well apart from that. Can you have LBD without the symptoms of hallucinations? Thanks. L. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 As you can probably tell by our other thread...........we have no idea what normal is! ahaha! Actually...it's very normal for many of us! My son wasn't diagnosed until he was 16 mos old...but I knew something was wrong, and I'd tell the pediatrician...he's not sitting, he's not even trying! he's not rolling over... he's not trying to crawl..............................and our ped always blamed it on his early surgeries, never really listened to us! I think we've done some polls on developmental things like this...maybe someone can point out where the results are...so you can see what's " average " ?? Angel Mom to 15 and a few others In a message dated 3/5/2008 10:32:06 A.M. Mountain Standard Time, returnofsing@... writes: Tony is almost 4 1/2 months old now. He still does not have good enough control to hold his head up properly, he cannot roll over, or sit up without a lot of support. Is this normal?? Also, he screams something awfula lot of the time, can his fits be due to frustration by wanting to do something and not being able to do it?? Become a member of IMDSA today at http://www.imdsa.com ******************************************************* Purchase your MDS awareness bracelet today! http://www.imdsa.com/bracelets ************************************************************************** Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-LINK ********************************************************************* Share your story today! http://www.mosaicdownsyndrome.com ********************************************************* To unsubscribe from this list, send e-mail to: MosaicDS-unsubscribeegroups ************************************************* To visit the e-group website go to: http://groups.yahoo.com/group/MosaicDS/ ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 neurolgist? i thought it was a typo.... oooo Aaaapril? lol In a message dated 3/5/2008 11:33:39 A.M. Mountain Standard Time, imdsapresident@... writes: What is a huerologist? Sorry, there are some things I still do not know about ! LOL Kristy April wrote: They haven't set it up yet. He is off to the huerologist on Friday, and I am terrified. I am wondering if they are waiting for all the prelimary tests to be completed before they start a rigorous therapy routine. Should I be doing more? > Tony is almost 4 1/2 months old now. He still does not have good > enough control to hold his head up properly, he cannot roll over, or > sit up without a lot of support. Is this normal?? Also, he screams > something awfula lot of the time, can his fits be due to frustration > by wanting to do something and not being able to do it?? > > > > > > > [Non-text portions of this message have been removed] > [Non-text portions of this message have been removed] Become a member of IMDSA today at http://www.imdsa.com ******************************************************* Purchase your MDS awareness bracelet today! http://www.imdsa.com/bracelets ************************************************************************** Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-LINK ********************************************************************* Share your story today! http://www.mosaicdownsyndrome.com ********************************************************* To unsubscribe from this list, send e-mail to: MosaicDS-unsubscribeegroups ************************************************* To visit the e-group website go to: http://groups.yahoo.com/group/MosaicDS/ ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 Hi April Is Tony getting physical therapy? This will help with his muscle control. Kristy April wrote: Tony is almost 4 1/2 months old now. He still does not have good enough control to hold his head up properly, he cannot roll over, or sit up without a lot of support. Is this normal?? Also, he screams something awfula lot of the time, can his fits be due to frustration by wanting to do something and not being able to do it?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 They haven't set it up yet. He is off to the huerologist on Friday, and I am terrified. I am wondering if they are waiting for all the prelimary tests to be completed before they start a rigorous therapy routine. Should I be doing more? > Tony is almost 4 1/2 months old now. He still does not have good > enough control to hold his head up properly, he cannot roll over, or > sit up without a lot of support. Is this normal?? Also, he screams > something awfula lot of the time, can his fits be due to frustration > by wanting to do something and not being able to do it?? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 Angel Thanks for bringing that up. We have a chart on our website from the VCU research that tells the average age for developmental milestones. Just go to www.imdsa.com and click on Information (I think that is where it is) Kristy LDSAngel77@... wrote: As you can probably tell by our other thread...........we have no idea what normal is! ahaha! Actually...it's very normal for many of us! My son wasn't diagnosed until he was 16 mos old...but I knew something was wrong, and I'd tell the pediatrician...he's not sitting, he's not even trying! he's not rolling over... he's not trying to crawl..............................and our ped always blamed it on his early surgeries, never really listened to us! I think we've done some polls on developmental things like this...maybe someone can point out where the results are...so you can see what's " average " ?? Angel Mom to 15 and a few others In a message dated 3/5/2008 10:32:06 A.M. Mountain Standard Time, returnofsing@... writes: Tony is almost 4 1/2 months old now. He still does not have good enough control to hold his head up properly, he cannot roll over, or sit up without a lot of support. Is this normal?? Also, he screams something awfula lot of the time, can his fits be due to frustration by wanting to do something and not being able to do it?? Become a member of IMDSA today at http://www.imdsa.com ******************************************************* Purchase your MDS awareness bracelet today! http://www.imdsa.com/bracelets ************************************************************************** Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-LINK ********************************************************************* Share your story today! http://www.mosaicdownsyndrome.com ********************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 What is a huerologist? Sorry, there are some things I still do not know about ! LOL Kristy April wrote: They haven't set it up yet. He is off to the huerologist on Friday, and I am terrified. I am wondering if they are waiting for all the prelimary tests to be completed before they start a rigorous therapy routine. Should I be doing more? > Tony is almost 4 1/2 months old now. He still does not have good > enough control to hold his head up properly, he cannot roll over, or > sit up without a lot of support. Is this normal?? Also, he screams > something awfula lot of the time, can his fits be due to frustration > by wanting to do something and not being able to do it?? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 My kids did not sit alone at 4 1/2 months. I do recommend that you follow with a good geneticist though. I would be concerned about the head holding up. maybe there are other concerns that you should address with someone more qualified than a typical pediatrician. Typical pediatricians do not have the " Down Syndrome developmental charts " . And unfortunately, I do not have mine in front of me right now either. HOWEVER, as with ANY child, if you have some valid concerns (and you do), then you should take them up with a doctor (my advice is a qualified geneticist who has been around a while). By the way, ANY PARENTAL CONCERN IS A VALID CONCERN. (no matter how small it may seem to others.) > > Tony is almost 4 1/2 months old now. He still does not have good > enough control to hold his head up properly, he cannot roll over, or > sit up without a lot of support. Is this normal?? Also, he screams > something awfula lot of the time, can his fits be due to frustration > by wanting to do something and not being able to do it?? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 I don't think April was refering to sitting. She was refering to just his muscle control and him being able to sit while she holds him. Also, we do not go by Down syndrome developmental charts. We go by the MDS developmental chart, which is significantly different. Kristy wrote: My kids did not sit alone at 4 1/2 months. I do recommend that you follow with a good geneticist though. I would be concerned about the head holding up. maybe there are other concerns that you should address with someone more qualified than a typical pediatrician. Typical pediatricians do not have the " Down Syndrome developmental charts " . And unfortunately, I do not have mine in front of me right now either. HOWEVER, as with ANY child, if you have some valid concerns (and you do), then you should take them up with a doctor (my advice is a qualified geneticist who has been around a while). By the way, ANY PARENTAL CONCERN IS A VALID CONCERN. (no matter how small it may seem to others.) > > Tony is almost 4 1/2 months old now. He still does not have good > enough control to hold his head up properly, he cannot roll over, or > sit up without a lot of support. Is this normal?? Also, he screams > something awfula lot of the time, can his fits be due to frustration > by wanting to do something and not being able to do it?? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2008 Report Share Posted March 5, 2008 Kristy, How can I get the charts for MDS? Re: Re: Question I don't think April was refering to sitting. She was refering to just his muscle control and him being able to sit while she holds him. Also, we do not go by Down syndrome developmental charts. We go by the MDS developmental chart, which is significantly different. Kristy wrote: My kids did not sit alone at 4 1/2 months. I do recommend that you follow with a good geneticist though. I would be concerned about the head holding up. maybe there are other concerns that you should address with someone more qualified than a typical pediatrician. Typical pediatricians do not have the " Down Syndrome developmental charts " . And unfortunately, I do not have mine in front of me right now either. HOWEVER, as with ANY child, if you have some valid concerns (and you do), then you should take them up with a doctor (my advice is a qualified geneticist who has been around a while). By the way, ANY PARENTAL CONCERN IS A VALID CONCERN. (no matter how small it may seem to others.) > > Tony is almost 4 1/2 months old now. He still does not have good > enough control to hold his head up properly, he cannot roll over, or > sit up without a lot of support. Is this normal?? Also, he screams > something awfula lot of the time, can his fits be due to frustration > by wanting to do something and not being able to do it?? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 To Tony’s Mom, I do have my 0-3 year old developmental charts in front of me and based on the information I see in the email, your son seems to be right in there. The charts I have are HELP Charts and are for typical development. They are as follows: Rollover 2-5 months - roll from front to back 5 ½ -7 ½ -roll from back to front Sitting 5-7 months sits independently, may use hands 5 months sits momentarily, leaning on hands 8 months sits w/out hands for 10 minutes Head 4-5 moves head actively in supported sit 3-5 months holds head steady in supported sitting Example: when I say 2-5 months, that means from the beginning of the 2nd month through the end of the 5th month OR anywhere in between. The ranges are many. My son was right on with his gross motor all the way up to is slightly delayed walking, and even though he was still not walking he continued on with gross motor miles stones passed the walking. ly, it stumped his physical therapist. The most important thing from this is that your son is seeing specialists in all areas for early intervention, even if he is doing good in a particular area. For example, my son has virtually no medical problems BUT he still has not missed a Down syndrome medical check list item thus far and he is 3 ½. You cannot be sure. Same goes for his development. I asked the 0-3 program that he start seeing a speech therapist at 10 months old, and they said “ he does not have a speech delay” and I said “ I’d prefer to be pro-active rather than re-active” and so he began seeing one. At his 18 month evaluation, he was 4 months delayed in speech. At his 2 year evaluation that delay had increased to 9 months. I can only imagine how much further of a delay he would have had, if I had begun speech therapy at 2 years old! (He has Apraxia, which would not just “go away” as a child develops.) Aloha, Mom to Aiden 3 ½ mds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Normal is what YOU make it, not what everyone else makes it out to be...my normal with Austin is that he does't talk except for Pizza, and he can nod his head yes or no when asked a question (most often times I'll ask him if he's a girl just to see if he understands me and half the time he answers yes...go figure LOL) So " normal " is what you and your family make it to be, not what Docs, Society, etc make it to be. I believe I'm normal because I go out of my way to be unique....different than everyone else on purpose....life gets boring if you don't......I told a new set of parents at the Parent Meeting last night at Austin's school that he had MDS and they said they were sorry...I told them " Don't be, he has something unique and different and that's just perfect for me! " So if you see your kids as the " normal " YOU make it out to be, people will respond in kind and go on with life....if they don't, it's their loss not yours and who wants to live the rest of their life in ignorance? Take it as an opportunity to educate people, you might be surprised at them. As for the percentages of MDS goes, I also had Austin tested at the Conference last summer only to kill my curiosity. All I was looking for was the confirmation of Mosaicism, because I've always said since Austin was born, that it was like looking at a prism when one looked at Austin. Depending on the angle you looked at him, you'd see the DS, at other angles you wouldn't or couldn't. Austin's Ped has been great and was very accepting of the test results (albeit " unofficial " ) and luckily he has heard about it, but Austin is his first patient with it. He treats Austin no differently than Trey, MDS/DS or not. To him Austin's just another 5 y.o. who is unique and special. And that makes me happy. Sorry for rambling, but thanks for letting me! Becky Warmest Regards Team BRATS http://teambrats08.chipin.com/team-brats-becky-rowe-austin-trey-smith to add the widget to your site click here: http://www.chipin.com/mywidgets/id/d8c674ed5b95e675 Thanks for Donating! Re: Question As you can probably tell by our other thread...... .....we have no idea what normal is! ahaha! Actually...it' s very normal for many of us! My son wasn't diagnosed until he was 16 mos old...but I knew something was wrong, and I'd tell the pediatrician. ..he's not sitting, he's not even trying! he's not rolling over... he's not trying to crawl....... ......... ......... .....and our ped always blamed it on his early surgeries, never really listened to us! I think we've done some polls on developmental things like this...maybe someone can point out where the results are...so you can see what's " average " ?? Angel Mom to 15 and a few others In a message dated 3/5/2008 10:32:06 A.M. Mountain Standard Time, returnofsing@ aol.com writes: Tony is almost 4 1/2 months old now. He still does not have good enough control to hold his head up properly, he cannot roll over, or sit up without a lot of support. Is this normal?? Also, he screams something awfula lot of the time, can his fits be due to frustration by wanting to do something and not being able to do it?? Become a member of IMDSA today at http://www.imdsa. com ************ ********* ********* ********* ********* ******* Purchase your MDS awareness bracelet today! http://www.imdsa. com/bracelets ************ ********* ********* ********* ********* ********* ********* ******** Contact IMDSA Today at: IMDSA~PO Box 1052~lin, TX~77856~ USA~1-979- 828-4177~ 1-888-MDS- LINK ************ ********* ********* ********* ********* ********* ********* *** Share your story today! http://www.mosaicdo wnsyndrome. com ************ ********* ********* ********* ********* ********* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Hey Kristy, Where can I get a copy of that chart? I'm seeing Austin & Trey's Ped next week and would love to give it to him, so far he's been using the DS Growth/Height chart with Austin. Thanks, Becky Warmest Regards Team BRATS http://teambrats08.chipin.com/team-brats-becky-rowe-austin-trey-smith to add the widget to your site click here: http://www.chipin.com/mywidgets/id/d8c674ed5b95e675 Thanks for Donating! Re: Re: Question I don't think April was refering to sitting. She was refering to just his muscle control and him being able to sit while she holds him. Also, we do not go by Down syndrome developmental charts. We go by the MDS developmental chart, which is significantly different. Kristy <agirlnamedsuess@ hotmail.com> wrote: My kids did not sit alone at 4 1/2 months. I do recommend that you follow with a good geneticist though. I would be concerned about the head holding up. maybe there are other concerns that you should address with someone more qualified than a typical pediatrician. Typical pediatricians do not have the " Down Syndrome developmental charts " . And unfortunately, I do not have mine in front of me right now either. HOWEVER, as with ANY child, if you have some valid concerns (and you do), then you should take them up with a doctor (my advice is a qualified geneticist who has been around a while). By the way, ANY PARENTAL CONCERN IS A VALID CONCERN. (no matter how small it may seem to others.) > > Tony is almost 4 1/2 months old now. He still does not have good > enough control to hold his head up properly, he cannot roll over, or > sit up without a lot of support. Is this normal?? Also, he screams > something awfula lot of the time, can his fits be due to frustration > by wanting to do something and not being able to do it?? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Becky The chart I was refering to was our developmental chart not growth. You can see it at http://www.imdsa.com/develop.htm Kristy Becky Rowe wrote: Hey Kristy, Where can I get a copy of that chart? I'm seeing Austin & Trey's Ped next week and would love to give it to him, so far he's been using the DS Growth/Height chart with Austin. Thanks, Becky Warmest Regards Team BRATS http://teambrats08.chipin.com/team-brats-becky-rowe-austin-trey-smith to add the widget to your site click here: http://www.chipin.com/mywidgets/id/d8c674ed5b95e675 Thanks for Donating! Re: Re: Question I don't think April was refering to sitting. She was refering to just his muscle control and him being able to sit while she holds him. Also, we do not go by Down syndrome developmental charts. We go by the MDS developmental chart, which is significantly different. Kristy <agirlnamedsuess@ hotmail.com> wrote: My kids did not sit alone at 4 1/2 months. I do recommend that you follow with a good geneticist though. I would be concerned about the head holding up. maybe there are other concerns that you should address with someone more qualified than a typical pediatrician. Typical pediatricians do not have the " Down Syndrome developmental charts " . And unfortunately, I do not have mine in front of me right now either. HOWEVER, as with ANY child, if you have some valid concerns (and you do), then you should take them up with a doctor (my advice is a qualified geneticist who has been around a while). By the way, ANY PARENTAL CONCERN IS A VALID CONCERN. (no matter how small it may seem to others.) > > Tony is almost 4 1/2 months old now. He still does not have good > enough control to hold his head up properly, he cannot roll over, or > sit up without a lot of support. Is this normal?? Also, he screams > something awfula lot of the time, can his fits be due to frustration > by wanting to do something and not being able to do it?? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 thanks for clarifying Kristy. My kids needed a lot of support to sit up at four months also. However, their head control was awesome from birth. (But I heard somewhere that kids with DS often can show awesome head control from birth like that....sorry I do not have the reference in front of me, except for my own kids.) As a parent, " I " would be concerned about my baby if he did not hold up his head with ease at 4 1/2 months, and I would recommend seeing a professional about a referral to a specialist regarding this and possibly a PT depending on the reasons for the lack of control. (There could be other reasons other than hypotonia.) I saw your post, Kristy, on the charts and I went immediately and read them on the site. I think I had seen them a couple of years ago, but I forgot what they said. :0) I " did " notice that the chart differentiated MDS and DS. I might print those and share them with my child's PCP for him to reference with other babies...if that is okay? Mine are past these stages for the most part, but they are an excellent reference and I like how they use the child who is typical, the child who has DS and the child who has MDS. > > > > Tony is almost 4 1/2 months old now. He still does not have good > > enough control to hold his head up properly, he cannot roll over, or > > sit up without a lot of support. Is this normal?? Also, he screams > > something awfula lot of the time, can his fits be due to > frustration > > by wanting to do something and not being able to do it?? > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 It can be a concern for a 4 month old to not have good head control, however, considering low muscle tone in MDS, I don't think it is very uncommon. I do, however, believe that physical therapy is very important especially in the infant stages. Anything on our site is fine to copy and print. We only ask that you be sure that IMDSA's information is on the printed page for further reference. Kristy wrote: thanks for clarifying Kristy. My kids needed a lot of support to sit up at four months also. However, their head control was awesome from birth. (But I heard somewhere that kids with DS often can show awesome head control from birth like that....sorry I do not have the reference in front of me, except for my own kids.) As a parent, " I " would be concerned about my baby if he did not hold up his head with ease at 4 1/2 months, and I would recommend seeing a professional about a referral to a specialist regarding this and possibly a PT depending on the reasons for the lack of control. (There could be other reasons other than hypotonia.) I saw your post, Kristy, on the charts and I went immediately and read them on the site. I think I had seen them a couple of years ago, but I forgot what they said. :0) I " did " notice that the chart differentiated MDS and DS. I might print those and share them with my child's PCP for him to reference with other babies...if that is okay? Mine are past these stages for the most part, but they are an excellent reference and I like how they use the child who is typical, the child who has DS and the child who has MDS. > > > > Tony is almost 4 1/2 months old now. He still does not have good > > enough control to hold his head up properly, he cannot roll over, or > > sit up without a lot of support. Is this normal?? Also, he screams > > something awfula lot of the time, can his fits be due to > frustration > > by wanting to do something and not being able to do it?? > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 I agree with you on this... Also, I thought I was imagining things when I see the " prism " thing going on with us. It is weird isn't it. Some angles look different than others. You are probably the very FIRST one to understand the concept. (I actually thought that the " exterior " effect may be a correlation to what happen on the chromosomes and perhaps the " angling " or " tilting " , as I call it, may be part of what causes the syndrome. Just my weird brain thinking....:0)) > > Normal is what YOU make it, not what everyone else makes it out to be...my normal with Austin is that he does't talk except for Pizza, and he can nod his head yes or no when asked a question (most often times I'll ask him if he's a girl just to see if he understands me and half the time he answers yes...go figure LOL) > So " normal " is what you and your family make it to be, not what Docs, Society, etc make it to be. I believe I'm normal because I go out of my way to be unique....different than everyone else on purpose....life gets boring if you don't......I told a new set of parents at the Parent Meeting last night at Austin's school that he had MDS and they said they were sorry...I told them " Don't be, he has something unique and different and that's just perfect for me! " > So if you see your kids as the " normal " YOU make it out to be, people will respond in kind and go on with life....if they don't, it's their loss not yours and who wants to live the rest of their life in ignorance? Take it as an opportunity to educate people, you might be surprised at them. > As for the percentages of MDS goes, I also had Austin tested at the Conference last summer only to kill my curiosity. All I was looking for was the confirmation of Mosaicism, because I've always said since Austin was born, that it was like looking at a prism when one looked at Austin. Depending on the angle you looked at him, you'd see the DS, at other angles you wouldn't or couldn't. > Austin's Ped has been great and was very accepting of the test results (albeit " unofficial " ) and luckily he has heard about it, but Austin is his first patient with it. He treats Austin no differently than Trey, MDS/DS or not. To him Austin's just another 5 y.o. who is unique and special. And that makes me happy. > Sorry for rambling, but thanks for letting me! > Becky > > Warmest Regards > Team BRATS > http://teambrats08.chipin.com/team-brats-becky-rowe-austin-trey- smith > to add the widget to your site click here: http://www.chipin.com/mywidgets/id/d8c674ed5b95e675 > Thanks for Donating! > > > > Re: Question > > As you can probably tell by our other thread...... .....we have no idea what > normal is! ahaha! > > Actually...it' s very normal for many of us! My son wasn't diagnosed until > he was 16 mos old...but I knew something was wrong, and I'd tell the > pediatrician. ..he's not sitting, he's not even trying! he's not rolling over... he's > not trying to crawl....... ......... ......... .....and our ped always blamed it > on his early surgeries, never really listened to us! > > I think we've done some polls on developmental things like this...maybe > someone can point out where the results are...so you can see what's " average " ?? > > Angel > Mom to 15 > and a few others > > > In a message dated 3/5/2008 10:32:06 A.M. Mountain Standard Time, > returnofsing@ aol.com writes: > > Tony is almost 4 1/2 months old now. He still does not have good > enough control to hold his head up properly, he cannot roll over, or > sit up without a lot of support. Is this normal?? Also, he screams > something awfula lot of the time, can his fits be due to frustration > by wanting to do something and not being able to do it?? > > Become a member of IMDSA today at http://www.imdsa. com > ************ ********* ********* ********* ********* ******* > Purchase your MDS awareness bracelet today! http://www.imdsa. com/bracelets > ************ ********* ********* ********* ********* ********* ********* ******** > Contact IMDSA Today at: > IMDSA~PO Box 1052~lin, TX~77856~ USA~1-979- 828-4177~ 1-888- MDS- LINK > ************ ********* ********* ********* ********* ********* ********* *** > Share your story today! http://www.mosaicdo wnsyndrome. com > ************ ********* ********* ********* ********* ********* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 I'm gonna throw my 2 cents in here....Austin wasn't holding his head up at 4 months because it was too much work for him...it would exhaust him because of the heart problem he had, which was corrected a month later at 5 months (3-10-03 is the exact date!). Also he wasn't on solid foods at that age either, but by the end of the week of his hospital stay he started eating mashed bananas and some cereal. About a month after his heart surgery, and pain free, he started not only holding his head up but sitting up as well (assisted). By that summer, Austin could sit on his own without assistance. His PT and I took it easy on him for about 2 months post-surgery in order to allow his breast bone to heal completely. I have always been strict about my kids not having a bottle after their First birthday (I personally can't stand to see a 3 y.o. with a bottle, drives me nuts! LOL) and on Trey's first birthday he had a bottle that morning as I had one disposable liner left, after that he was using a sippy cup. I tried to do the same with Austin, however he didn't hold his bottle by himself until he was 9-10 months old. After he started crawling and using his arms and they were strong enough he started to hold his bottle on his own. About a month later, I eliminated all bottles except one and put it in a drawer (mainly to use if he was tired or as a back up when washing cups). That was when Austin was around 15 months, one day I was trying to give him some apple juice in a sippy cup and he flatly refused the cup, crawled over to the drawer where I kept the bottle, and took it out and handed it to me! That was the last time he used a bottle! I threw it out that night, once it was out of sight, it was out of mind as far as Austin was concerned. I guess what I'm saying is where some kids are delayed, others aren't, and vice versa. In the area of holding his head, maybe it's just he/she needs more time to accomplish that goal or milestone. JMHO Becky Mom to Austin 5, MDS and Trey 8, ADHD Warmest Regards Team BRATS http://teambrats08.chipin.com/team-brats-becky-rowe-austin-trey-smith to add the widget to your site click here: http://www.chipin.com/mywidgets/id/d8c674ed5b95e675 Thanks for Donating! Re: Re: Question It can be a concern for a 4 month old to not have good head control, however, considering low muscle tone in MDS, I don't think it is very uncommon. I do, however, believe that physical therapy is very important especially in the infant stages. Anything on our site is fine to copy and print. We only ask that you be sure that IMDSA's information is on the printed page for further reference. Kristy <agirlnamedsuess@ hotmail.com> wrote: thanks for clarifying Kristy. My kids needed a lot of support to sit up at four months also. However, their head control was awesome from birth. (But I heard somewhere that kids with DS often can show awesome head control from birth like that....sorry I do not have the reference in front of me, except for my own kids.) As a parent, " I " would be concerned about my baby if he did not hold up his head with ease at 4 1/2 months, and I would recommend seeing a professional about a referral to a specialist regarding this and possibly a PT depending on the reasons for the lack of control. (There could be other reasons other than hypotonia.) I saw your post, Kristy, on the charts and I went immediately and read them on the site. I think I had seen them a couple of years ago, but I forgot what they said. :0) I " did " notice that the chart differentiated MDS and DS. I might print those and share them with my child's PCP for him to reference with other babies...if that is okay? Mine are past these stages for the most part, but they are an excellent reference and I like how they use the child who is typical, the child who has DS and the child who has MDS. > > > > Tony is almost 4 1/2 months old now. He still does not have good > > enough control to hold his head up properly, he cannot roll over, or > > sit up without a lot of support. Is this normal?? Also, he screams > > something awfula lot of the time, can his fits be due to > frustration > > by wanting to do something and not being able to do it?? > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 that is interesting about the heart condition affecting him holding his head up. I never thought about that. I breastfed all of mine until one year (Well, I take that back, my 21 year old was BF until 7 months). They went straight from breast to cup and table foods. My youngest has started table foods (he will be one April 1st) BUT I did give him jar food (still do) at 8 or 9 months because I had to stop breastfeeding. My Charlie Hart was on breastmilk until 15 months. He did eat solid foods at one year. (He could have sooner, but we just did not.) As I recall, I think I gave him some baby foods around 8 months. It was just my preference to just give breastmilk only until one year at least. > > > > > > Tony is almost 4 1/2 months old now. He still does not have good > > > enough control to hold his head up properly, he cannot roll > over, or > > > sit up without a lot of support. Is this normal?? Also, he > screams > > > something awfula lot of the time, can his fits be due to > > frustration > > > by wanting to do something and not being able to do it?? > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Diane, Exactly...he was frustrated at home because he couldn't communicate well with us. I think that's why this group is so great... I had just before everyone had computers and before there were e-groups, etc... it would have been nice to get more feedback from other parents! Angel In a message dated 7/29/2008 10:38:23 A.M. Mountain Daylight Time, diane_grover@... writes: Angel, That is great information. Did you wish it cuz he was frustrated until the sentences came, or for another reason? Thanks for your input. Diane > > > > My daughter is starting to really communicate these days. Not in > full > > sentences, but if she want a banana, she will come up to me, tap me, > > and then say nana. If she needs to go potty she will say pee pee. > > Some of what she is saying is all so new this summer. It seems like > > new words are popping out each day. And the part that is surprising > > me is how intentional her communication is. She is 3 and 1/2. Like > I > > said, no sentences but lots of letting us know what she wants through > > words. My question is, at what age did you all with older ones let go > > completely of the sign, and let your child work more on the words? > Or > > did you? I find us moving further and further from the signing, and > > more and more closer to the words. Would love to hear your thoughts. > > Diane > > > > > > ------------------------------------ > > Become a member of IMDSA today at http://www.imdsa.org > ******************************************************* > Purchase your MDS awareness bracelet > today!http://www.imdsa.org/Awareness/aware.htm > ********************************************************************* ***** > Contact IMDSA Today at: > IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS- LINK > ********************************************************************* > Share your story today! http://www.mosaicdownsyndrome.com > ********************************************************* > To unsubscribe from this list, send e-mail to: > MosaicDS-unsubscribeegroups > ************************************************* > To visit the e-group website go to: http://groups.yahoo.com/group/MosaicDS/ > *************************************************Yahoo! Groups Links > > > > > > > > > **************Get fantasy football with free live scoring. Sign up for > FanHouse Fantasy Football today. > (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020) > > > [Non-text portions of this message have been removed] > ------------------------------------ Become a member of IMDSA today at http://www.imdsa.org ******************************************************* Purchase your MDS awareness bracelet today!http://www.imdsa.org/Awareness/aware.htm ************************************************************************** Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-LINK ********************************************************************* Share your story today! http://www.mosaicdownsyndrome.com ********************************************************* To unsubscribe from this list, send e-mail to: MosaicDS-unsubscribeegroups ************************************************* To visit the e-group website go to: http://groups.yahoo.com/group/MosaicDS/ *************************************************Yahoo! Groups Links **************Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Hi...this is where i get really confused. I have posted questions like t his before. My daughter is only 9 mths old and i've asked b/f if MDS children truly have so many communication problems. I recieved responses that most children that do usually have a separate diagnosis along with MDS. So i'm wondering if your daughter also has a seperate diagnosis as well? My daughter (Macie) babbles, not a lot, but screeches, and hollers and does da-da when she wants to. Did you daughter babble on " target " or did she ever? Camisha > > My daughter is starting to really communicate these days. Not in full > sentences, but if she want a banana, she will come up to me, tap me, > and then say nana. If she needs to go potty she will say pee pee. > Some of what she is saying is all so new this summer. It seems like > new words are popping out each day. And the part that is surprising > me is how intentional her communication is. She is 3 and 1/2. Like I > said, no sentences but lots of letting us know what she wants through > words. My question is, at what age did you all with older ones let go > completely of the sign, and let your child work more on the words? Or > did you? I find us moving further and further from the signing, and > more and more closer to the words. Would love to hear your thoughts. > Diane > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Oh yes, my daughter was a big babbler. She has always been " vocal " . She has signed nicely too. I would say though that communication is her biggest delay. We have had few delays in other areas, but this area is more delayed than the others. Having said that, I am happy she is communicating as much as she is. In fact, that is what prompted me to write asking this question. I guess I did the signing because our old ST told us to sign with her, but with her popping out new words, and she is not frustrated, I feel like it is time to let that go. Diane > > > > My daughter is starting to really communicate these days. Not in > full > > sentences, but if she want a banana, she will come up to me, tap me, > > and then say nana. If she needs to go potty she will say pee pee. > > Some of what she is saying is all so new this summer. It seems like > > new words are popping out each day. And the part that is surprising > > me is how intentional her communication is. She is 3 and 1/2. Like > I > > said, no sentences but lots of letting us know what she wants through > > words. My question is, at what age did you all with older ones let go > > completely of the sign, and let your child work more on the words? > Or > > did you? I find us moving further and further from the signing, and > > more and more closer to the words. Would love to hear your thoughts. > > Diane > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 At what age did you have her start ST? We go tomorrow for Macie's 9mth check up and i'm going to insist that i'd like to have her start. I have not introduced signing...guess i'm still hoping for a miracle.. Camisha > > > > > > My daughter is starting to really communicate these days. Not > in > > full > > > sentences, but if she want a banana, she will come up to me, tap > me, > > > and then say nana. If she needs to go potty she will say pee > pee. > > > Some of what she is saying is all so new this summer. It seems > like > > > new words are popping out each day. And the part that is > surprising > > > me is how intentional her communication is. She is 3 and 1/2. > Like > > I > > > said, no sentences but lots of letting us know what she wants > through > > > words. My question is, at what age did you all with older ones > let go > > > completely of the sign, and let your child work more on the > words? > > Or > > > did you? I find us moving further and further from the > signing, and > > > more and more closer to the words. Would love to hear your > thoughts. > > > Diane > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 We started when she was about 9 months old. However, I say that with the understanding that the therapists were not too on board with helping with speech for individuals with Ds. Our first one told us this was part of the acceptance that we needed to have, and that she would be helping me more with that than with actual speech issues. So we moved on to another, who when she came told me she was so scared, cuz she had never worked with kids before, and my daughter was her first. So moved on, to a therapist who had never done oral motor before, but was open to trying and actually went through training for us to implement it. We had her until we moved. At our move, our next ST agreed there was a delay, and has been wonderful as well. We had her evalutated by the ST who owns Talk Tools. She stressed very strongly that we were not to use signs. That has stuck in my head a lot. So, I am back to wondering what to do at this point. I am thinking that we need to search our hearts on this one. Oh, and when I say she does not use sentences I should say, at least not for everything. Just now she walked up and said, " Mom, I have some chips " Food is a big motivator for her. LOL. Diane > > > > > > > > My daughter is starting to really communicate these days. Not > > in > > > full > > > > sentences, but if she want a banana, she will come up to me, > tap > > me, > > > > and then say nana. If she needs to go potty she will say pee > > pee. > > > > Some of what she is saying is all so new this summer. It seems > > like > > > > new words are popping out each day. And the part that is > > surprising > > > > me is how intentional her communication is. She is 3 and 1/2. > > Like > > > I > > > > said, no sentences but lots of letting us know what she wants > > through > > > > words. My question is, at what age did you all with older ones > > let go > > > > completely of the sign, and let your child work more on the > > words? > > > Or > > > > did you? I find us moving further and further from the > > signing, and > > > > more and more closer to the words. Would love to hear your > > thoughts. > > > > Diane > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 lol...hey..food works for us all females, huh?!...thanks Diane.. I have a neice that NEVER stops talking. (not mds) and although she sometimes gives me a headache...i was hoping to have a little jabberjaws just like her. I guess this is all still new and scary to me. The unknown is what is so scary. Thanks again~ Camisha > > > > > > > > > > My daughter is starting to really communicate these days. > Not > > > in > > > > full > > > > > sentences, but if she want a banana, she will come up to me, > > tap > > > me, > > > > > and then say nana. If she needs to go potty she will say > pee > > > pee. > > > > > Some of what she is saying is all so new this summer. It > seems > > > like > > > > > new words are popping out each day. And the part that is > > > surprising > > > > > me is how intentional her communication is. She is 3 and > 1/2. > > > Like > > > > I > > > > > said, no sentences but lots of letting us know what she > wants > > > through > > > > > words. My question is, at what age did you all with older > ones > > > let go > > > > > completely of the sign, and let your child work more on the > > > words? > > > > Or > > > > > did you? I find us moving further and further from the > > > signing, and > > > > > more and more closer to the words. Would love to hear your > > > thoughts. > > > > > Diane > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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