Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Joe has low tone is his legs and feet. He sat up on his own at six months, but was quite happy to just sit until he was 14 months old, when he started to crawl, and then at 17 months old he started to walk. He walks (and runs) very well. His low tone in his legs mean that he is very flexible, he gets into some quite painful looking positions!!! He also wears prescription footwear, he hasn't developed the arch in his foot and so walks quite flat footed. Mum to Joe (nearly 5) & Caitlin (13 weeks) low tone I was wondering if anyones kids had low muscle tone. was very floppy as a newborn but as she gets older her tone is getting much better. She is sitting up pretty good without support now. She sat for about 5 min. today without losing her balance! She is also trying really hard to crawl, but as she tries to pull her knees up under her they have a tendency to flare out. also has a tongue thrust which I assume is related to the low tone. I was just wondering if any of your kids were like this as infants and outgrew it. From the photos on photoisland it doesn't look like anyone has this. Hope Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Hi Hope, didn't have a problem with muscle tone,but he is as flexible as they come. His latest party trick, is sitting down (anywhere) and scratching his ears with his foot. ummm maybe i shouldn't have let him play with our dogs so much. He does have the tongue problem, but it has improved greatly. As a baby, we sorta let it go, but as he got older, we used to say, put your tongue away, and gently push it back in with our fingers. Now that he is 4, we tell him to put it away and he does. Its great exercise for tongue control for them to be able to do it when asked. Both scotts first and his current speechie (at different centres) were both very adamant about this course of action. At present we are working VERY hard on his speech to get him ready for big school in the new year when he starts kindergarten, and we have now got quite a few tongue exeercises to do everyday to help with the tongue control that the tongue thrust problem can prevent from happening. If anyone is interested in these, i could try and explain them in an email to you. (perhaps who knows what we do different on this side of the world ) Regards in oz, mum to scott 4mds and emily 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Hope, Tim never stuck his tongue out until he got older. I am finding that recently I am having to tell him to put his tongue in alot. I may need to have a ST evaluate him. He has always been double jointed, but I am too, so I never thought much about it. I notice that his posture is not well. He leans his head and shoulders foward a bit. Tim has an extreamly bad habbit of popping his joints! Drives me crazy! He has done this forever and now is trying to pop his neck. I think he does it for attention more than anything! Tim did have drooling problems up until he was about 4 or 5. I just kept telling him to swallow and eventually he stopped. He does seem to still produce alot of salava. Tim does not run very well. He just seems very clumsy when he trys this. I would think that would clasify under low muscle tone as well. In general, Tim does have low muscle tone, but I don't think it is extreamly noticible. Kristy --- Ronnie Sikes wrote: <HR> <html><body> <tt> I was wondering if anyones kids had low muscle tone. was very floppy as a newborn & nbsp; but as she gets older her tone is getting much better. She is sitting up pretty good without support now. She sat for about 5 min. today without losing her balance! She is also trying really hard to crawl, but as she tries to pull her knees up under her they have a tendency to flare out. also has a tongue thrust which I assume is related to the low tone. I was just wondering if any of your kids were like this as infants and outgrew it. From the photos on photoisland it doesn't look like anyone has this.<BR> Hope<BR> <BR> <BR> [Non-text portions of this message have been removed]<BR> <BR> </tt> <br> <!-- |**|begin egp html banner|**| --> <table border=0 cellspacing=0 cellpadding=2> <tr bgcolor=#FFFFCC> <td align=center><font size= " -1 " color=#003399><b> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 ----- Original Message ----- >> we have now got quite a few tongue exeercises to do >> everyday to help with the tongue control If anyone is interested in >> these, i could try and explain them in an email to you. >> Regards >> in oz, mum to scott 4mds and emily 2 Thanks , I would be interested in hearing what kind of exercises you do. is not old enough to follow any verbal instructions but I will file them away for future reference! is trying so hard to crawl. She can get one knee under her but when she tries to get the second one up her little knees just go lickety split and she looks like a frog. I found this website for these shorts to help support the hips of kids w/ low tone. It seems they would help her with her crawling efforts. Has anyone here ever tried these? http://www.hiphelpers.com/ Hope Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 Hello - Welcome to the group!! I know what you mean about your daughter being double jointed. My will sit on the floor with her legs in a V, then lay on the floor with her legs still in a V, and then swing her legs around to the back with her tummy sit on the floor! Totally freaks me out - I am not very flexible and my body does not bend that way... Darlene (Mom to (3)MDS & (5)) Re: Hello, Everyone, Again, I am new to this group. My name is Bultje and I live in Sioux Falls, SD. Thank-you for all the kind welcomes I received. It has been enjoyable reading all the e-mails. I do not believe we will qualify financially for SSI and was wondering what other support there may be for children with MDS. na (6) has had early childhood schooling and has an IEP for school, but we have never been informed of any help we could receive at home for her. She started kindergarten two weeks ago and loves it. She has special help in math and reading and goes to speech therapy, but receives no special one on one help. na has no physical or health problems stemming from MDS. Her heart is healthy, her neck and spine are fine, and she has no thyroid problems. Her facial features stemming from MDS are so slight that no one would know anything was wrong with her if I didn't tell them, and I don't share it often. She is as double jointed as they come, though!!! I asked her if she could walk on her toes like a ballerina, and she literally curled her toes under her feet and walked that way!!! But I am her mother, and I know that she has problems, and I get scared sometimes thinking about how difficult things may be for her down the road. Right now, she is young, and some of her difficulties are the same as all children her age, but I worry that she will not be able to comprehend math or reading. Reading e-mails about young adults with MDS going to work (I believe her name is Carol Anne...AWESOME!!!! Way to go!!)help me to get through these difficult times. I have no one in my area to talk to, and since na has such a mild case, I would feel guilty attending DS groups, I use your stories as a guide for na. She is a joy and I am grateful to have her in my life. Many people who have met her tell me that she has a way of melting their hearts with her precious smile. I have a picture of myself when I was around her age, and we could be twins. I look at her and think there is no way I could have ever been as beautiful as she is. Enough of my babbling...Thank-you for ALL your insights and please don't let disagreements come between the bond all of us share. Our children need us to be strong so they can have a better world. (mom of Trevor 10, na (mds)6 & Bryson, 4) __________________________________________________ Yahoo! - We Remember 9-11: A tribute to the more than 3,000 lives lost http://dir.remember.yahoo.com/tribute Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com ************************************************* MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 Ariel has had low since the day she was born and the #1 issue as to why her pediatrician thought that there might be a chromosonal abnormality. It is my understanding that overall tone remains the same throughout life but strength can be increased. My daughter is extremely strong and her low normal muscle tone has never really been an issue. She does have the extremely flexible joints (hypermobile) and does things that freak my out all the time. mom to Ariel 8MDS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 - I understand the strength issue - once was walking she got much stronger but it took her a while to walk because of the low tone in her torso. If she does not want to be taken somewhere - (like up to the bath) and I start to carry her, she will go completely limp and slides right out of my arms - it is like her shoulders are held on with Velcro. Darlene Re: low tone Ariel has had low since the day she was born and the #1 issue as to why her pediatrician thought that there might be a chromosonal abnormality. It is my understanding that overall tone remains the same throughout life but strength can be increased. My daughter is extremely strong and her low normal muscle tone has never really been an issue. She does have the extremely flexible joints (hypermobile) and does things that freak my out all the time. mom to Ariel 8MDS Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com ************************************************* MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Darlene, Ariel used to do the same thing I couldn't help but laugh at remembering how limp she got and how impossible it was to carry her sometimes. Quote Link to comment Share on other sites More sharing options...
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