Hypotonia and walking - Page 2

[mommy2maya]

Having had a kid who was extraordinarily fast with physical milestones as an infant, and one that didn't walk til 16 months, I said and still say that my son moved too fast. And it still is amazing to me whenever my hypotonic toddler does something new. So, it really depends on your experience.

[Hindyg]

My daughter will be 3 in November. She started walking in April. She had been taking many steps for several months, but not really walking. She has hypotonia and other delays. Your baby does need the other skills before she will be ready to walk. She needs a great deal of trunk control before one of those push walkers will be of any use. My daughter had very poor trunk control. Even when she was somewhat able to stand, and pulling up on things, if you had her try and push a walker, the walker would just drag her to the floor. Please let your daughter go at the pace she needs to go. Work with the therapist to help your daughter progress at her pace.

[22blue_sky]

Sol excited for you mommatj that your daughter is waving and that you were there to see it first. Reading your post brought a smile to my face - every little things our beautiful kids do is to be celebrated. I've been thinking. . . I don't know what tomorrow holds all I know is what I have today and that's a lot to celebrate!

Have a fantastic weekend with your family

[22blue_sky]

I agree mommytomaya, I think it depends entirely on your experience and you would certainly see things from both perspectives. I guess only having one child of my own and that beautiful gorgeous boy being the one that isn;t reaching milestones it is hard to be told by friends whose children are very mobile to be grateful for the fact that my boy is not.

If you are a parent of a child who is very active I can understand that your child reaching the very mobile and active stage changes things for you in terms of having to always be on guard and have an eye out for your kiddy. Its probably one of those things were like most others in life, sometimes the grass always appears greener on the other side

Have a great day

[22blue_sky]

Originally Posted by betsyj

And we should have a club for us "lucky" Mamas who don't have to chase after our kids. I HATE when people say this to me-what I wouldn't give to not stay up at night hoping my child will be able to use his marvelous body like other kids can.

Thanks for your comments betsyj
can certainly relate :0

[irrum]

development delay

My 4 year old son has been diagnosed with hypotonia and global development delay. He is still not walking but has been trying to stand on his own these past months for a few seconds so I am still hopeful! His PT have given him a kaye walker, which he isn't interested in at all at the moment but with time i'm sure he'll get there.

It's reassuring to know there are other mums out there with children like mine. The world sometimes feels like it's against us!

[Birdie B.]

I'm really glad this thread got bumped - I needed it. Lately I've been feeling so anxious about my 13-month old daughter's delays - she has hypotonia and low vision, unknown cause. She has been in PT for months now, and she can sit up pretty well, and hold herself up on her arms. But she can't catch herself if she topples, and she can hardly bear any weight on her legs at all, and sometimes I get so discouraged.
All my friends' babies are walking and climbing all over everything, and it's amazing to see. But I wonder if Meadow will ever get there. It's so, so helpful to hear from other mamas about your late walkers! Thank you so much - I really needed this tonight.

[jennabean]

just want to add my tiny bit of input here ...

my son is 18 months old and has a mix of things going on, but hypotonia is one of them, the others are clubfeet ("fixed" and now in the maintenance phase of treatment), mild distal arthrogryposis, and a spinal issue called basilar invagination...

all that said, its hard to know which of these is causing his delays but my suspicion is the hypotonia is the biggest culprit...

he seemed to take forever to be able to brace himself to the side if he started to topple and had developed his own way of sitting where he would lay on his tummy and push back into a W sit... he's just now started being able to push himself up into sitting from his side (if that makes sense).

he started crawling 2 months ago but has sense moved surprisingly fast from crawling into pulling up to standing and now cruising holding onto furniture

no words really yet but is very expressive in gestures and pointing, etc.

just wanted to say that you're not alone, its hard to look at "normally" developing kids and see just how far behind our kiddos are, but I will say that we really do get such excitement and pleasure at each little milestone he achieves... my dd was always ahead of the curve so this has been an adjustment

best of luck

[Literate]

My dd2 (hypotonia, apraxia) didn't pull to standing until 14 months, walked at nearly 18 months. She pulled to standing first at the train table, which is nice and heavy and a good height. She started pushing a wooden kiddie chair around the house at maybe 16 months. That worked wonderfully for her.

Our EI person also suggested (at the time) that we put her main toys on the coffee table or train table, so that she would have to stand to play. I think this really helped strengthen her core.

[half-pint]

Since this thread got bumped I just wanted to suggest a book I found helpful for my son who has hypotonia. It is "Gross Motor Skills for Children with Downs Syndrome". My son does not have Down Syndrome but I found this book really good with the detailed, micro steps that a child takes when acheiving gross motor milestones.

Some of the info is tailored toward Down's but overall I found it to be excellent. So much of the info out there about gross motor glosses over the steps from supported sitting to crawling, etc and this book breaks it down nicely with lots of suggestions for excersises and positioning. There is also one for Fine Motor Skills as well. Our PT made copies of the chapters for us so we did not have to purchase it, it is worthwhile to ask!

[irrum]

Thanks for recommending the book i will try and get a copy.

I think it's really important for us mums with children with special needs to focus on the milestones they are achieving rather than not (i know it's easier said than done!) I have been teaching my son makaton (baby sign) for almost a year and a half and now he is beginning to sign more and eat and drink back to me. It gets me everytime xxx

[Purple Cat]

My little guy with hypotonia is now 4 y.o. He was/is in PT and OT. Our therapists here told me the best thing I could do for him was to get rid of hte exersaucer, baby jumper, etc., walker. They said playing on the floor was best.

I kept my DS on the floor CONSTANTLY. I wouldn't even take him for stroller rides because I wanted him to be spending the time doing something that would help him build his muscles. I kept him on the floor A LOT. I wouldn't let him get too frustrated, but if he wanted me to hold him I would try to have him pull up on me.

I went through some of the same frustration with jumping that you seem to be going through with walking. I asked his PT/aquatherapist if he should be able to jump at that point. His twin sister was jumping a lot. She paused and told me, "No. A child with his degree of hypotonia should NOT be jumping at this point." That helped me put the developmental milestones in better perspective.

In any event, I vote against hte walker, etc. Every situation is different, but our approach served my son well.

[Adamsmama]

My son didn't walk until 17 months and only with lots and lots of pushing and help from myself and DH. We had to get him to stand up (which he couldn't do byhimself) and then push a little kid cart/push toy. We had to help him for months before he could start to do it by himself. He is now diagnosed with cerebral palsy and low-functioning autism (he had hypotonia/mild but also global delays).

[CPMommy]

My DD is 20 mths old with hypotonia and mild CP. She has DAFOs which help. Her PT also has her using a rifton, which she loves. She recently started using a kaye walker (posterior walker) and is doing well. Obviously these are not baby walkers, but medical equipment. Insurance may help pay for them if your DD would benefit from them.

Good luck. I know it's frustrating.

[marcelle]

Dear mates,

I am glad I have found this forum and to be honest I am really suprised that so many children suffer :(. Till now I felt myself that there is just my child with this strange condition far away around I even have never heard before about hypotonia till the time we starded experienced problems with significant development delay at one year of age. And I have already learnt a lot from all the posts in this group. Now I have finally better idea what we should expect in the near future because I was always having no idea what it is going to be as doctors are saying “nothing” and after some time I think I know more about this “diagnosis” then they do. They significantly has no other experience with the child with hypotonia before and I see their wonder and interest in my son progression. It is because I am from small town and the neurological threatment here is as well very terrible. Therapist do more nothing then something :( Unfortunatelly any specialist is too far from us as well as any suitable therapy so we do hard work at home mainly on our own.

I am really wonder if anybody has an experience with SCENAR therapy? Or has heard about someone has tried it? I have heard a lot about this therapy and it’s rumoured possitive curing effects. Like excellent progresses while threating cerebral palsy (and other neurological, skin, ... and many many other diagnosis). It looks like it can help to get progress within any diagnosis. You can find some doctor’s recommendations onto this therapy on internet but I cannot find any evidence of someone’s real experience or someone’s apparent positive achievements while threating their diagnosis with scenar.

I would be very grateful for sharing your or somebody you know experience whatever it is…

My son has decreased muscle tone and still cannot walk independently in his 24 months because of this hypotonia. So I think we might try this therapy…

I really appreciate your comments… :)