Daughter 2 and doesn't walk at all.

[oxfordemma78]

Hi our daughter is 2 in 3 weeks, she has never beared any weight on her legs, crawled or turned herself over. She can only bottom shuffle. we are seeing specialists at the JR in oxford, she has hypotonia and is hyperflexible. we have been going through physio etc and she has a rectal biopsy on the 16th to see if she has hirschsprung disease due to her bowel problems. its been very stressful and it may take her until she is 4 or later to even try to walk on her own, she has never even tried. I think it maybe due to me being hypothyroid (and I still am) during pregnancy. Has anyone else experienced this? Thanks Emma

Sorry, I don't have any experience of this but I am bumping for you.

Hello Oxford Emma, my toddler is 2yrs 4 months and walked about a month before she was two. Like your child she was a bottom shuffler, she did not crawl, she could not turn over in bed, if she fell sideways from sitting position she could not get herself up etc etc. We had physiotherapy from about 16-22 months and she gradually developed her physical skills and can do most things now (e.g. walk, run, climb etc). I'm sorry that this is not much comfort to you and that you are still going through this with a slower improvement rate. I was very interested though about the bowel problem. My DD was also terribly terribly constipated to the point where last summer she would go once a fortnight and pass an enormous (I mean like a very big jacket potato) stool which caused her agony. She was put on a strong laxative in July 2008 which she only came off in February 2009. Her stools have continued to be loosish even since coming off (not like normal toddler poos) I think maybe the effects of the laxative have not yet worn off. She has been upset tonight though and straining to do a poo so I'm worried this might be the start of returning to constipation. The reason I am saying all this is to ask you whether your doctors have ever suggested a link between the delayed physical development and the constipation? I kept raising this at my appointments and it was dismissed really. I really feel for you and hope that others who are in your situation come along and post soon.

Hi Emma, my ds is 20 months and is hypermobile and hypertonic although it sounds like to a lesser degree than your dd. He can pull himself up and cruise but it is a huge effort for him, his shoulders are particularly weak, and he often slumps/falls over. He can only stand holding on for a limited period of time before he just gets knackered and collapses!

He really improved when he starting crawling on all fours about a month ago, this has strengthened his shoulders which is the area the physio told us to really work on. He has'nt had any physio sessions and has consultant review in 2 months.

He does'nt have any bowel problems but I am concerned that he has some degree of global developmental delay. Whilst it sounds like things are harder for you I completely understand your frustration, my ds still feels like a baby rather than a toddler and my back is about to give out with all the carting him around. Also he is very demanding
probably because he is frustrated at not being able to do all he wants, I can't see him walking for at least 6 months.

Just wanted to share my experience, although it sounds things are easier for me. The consultant I saw told me there is a familial link with this and thinks it is likely I have it to a lesser degree as am bit bendy and it appears that my 13 yro ds also has it - walked at 15 months, had delayed gross motor development, struggled to ride a bike and kick a ball, fell over alot for years, suffered from excruciating growing pains and is now gangly, lanky and double jointed.

Am getting a bit fed up with people commenting on his not walking and comparing him with other toddlers, how do you find it?

i have ds whos 3.9 who only strted walking at 2.6 even now he i unable to run or walk far.He has GDD to so is really only around 18 months.

am afraid case of devloping thick skin

Hi, although my son is also downs syndrome with complex health and learning needs, he also has severe hypotnia. He was exactly the same when lying on his back couldn't roll to front and vice versa, didn't crawl or weight bear on his legs. After a long battle with physio, standing frames, leg gaitors, piedro boots etc he finally stood and took a few steps literally at the same time nearly 5 year old. He is now 8 and still can't do curbs, walk for more than 20ft without a rest,stairs, uneven ground etc. He doesn't jump, run or ride bikes etc as yet. However when he got a bit more confident on his feet he started to crawl. He too was a bottom shuffler, I was told bottom shufflers do take longer to get on there feet, i think it's something to do with position.

theres a few of us over on the sn board with dc with hypetonia and hypermoblity come join us were friendly bunch

and yes it can rn in familiers me and ds 1 both are hypermobile but nowhere as bad as ds 3