Hypotonia and walking

[mommatj]

My DD is 17 months and is receiving physical therapy for hypotonia. Other than that, we are still waiting to see a neurologist to help figure out the "why" behind the low tone. We went from being brushed off as "a little floppy" about 6 months ago, to now being labelled with hypotonia.

I would really like to help DD start walking, but so far her PT has been very focused on getting her to sit in different positions. (Which I CAN understand, after all, he knows best, right?) But I would really like to work as well on getting her ready to start walking.

At her last appointment I asked about a baby walker. I had always read that baby walkers can actually delay walking, so I had never really given it much thought. But my MIL has really been pushing me about a walker, so I asked. And the PT said he thinks she might actually benefit from the use of a walker.

Here's the problem. In Canada, baby walkers are banned. So unless we can track one down out there from the pre-ban days (it's even illegal to import them or to sell them second hand) we will really have to work hard to get one. I'm not sure how much effort, time, and money to put into pursuing this avenue because I'm not sure if a walker will really help or not.

So my question is this to other parents who had a toddler with hypotonia: What sort of things did you do at home/devices did you use to encourage walking? Did you use a baby walker? AND, what age did your child start walking?

[laohaire]

My DD has hypotonia and also received PT to help learn skills to walk. She walked at just shy of 18 months.

We did have a sort of walking toy, which the PT neither encouraged nor discouraged. We had the toy not so much as a therapy but just a release for us, because DD really WANTED to walk, and demanded we hold her hands and support her everywhere - that was exhausting pretty quickly. So the walker just gave us a bit of a break.

I can certainly understand the impatience to get to the walking part because I felt the same way, but I kept reminding myself that walking depends on many other skills. Honestly, if she's not sitting up on her own yet, I'm not sure she can really work on walking yet - it requires the same trunk muscles and so on.

DD fell a lot when she learned to walk - the slightest thing could knock her over. A lot of tears A tough time. So all those muscles are really required to walk as safely as possible, too.

She never did master crawling before walking, though the PT did a little bit of work on it (but not too much). Crawling does not seem to be a prerequsite to walking. But I do think sitting up is.

It's kind of funny, DD is nearly 4 now, and sometimes likes to pretend she's a lion or something - and thus crawl. But she doesn't do it the way a baby does (hands and knees) - she awkwardly walks along on her hands and feet. And of course this makes sense because, well, lions walk on their hands and feet - and she has no personal experience crawling any other way.

Other things I did to encourage her mobility that I think were good:

- I had a futon mattress on the living room floor. Some other things could also be used, but the point was that she had kind of a "safe space" to move around and fall without hurting herself.
- I put a mirror near the mattress, on floor level, so she could watch herself moving around
- I put toys just out of her reach to encourage her to move toward them.

One thing I didn't do but would do differently if I did it again, would be to teach her how to cruise when she was ready. She always depended on us to hold her hands when walking around, but she never reached for furniture or anything. So that's an idea to keep in mind when your DD gets to that point.

Just my experience. I'm sure sbgrace will post here too, she's been very helpful to me with her experience with metabolic disorders.

[KCMichigan]

One of my DD (also almost 4, like PP) was a late walker and dx w/ hypotonia of trunk and legs- and mild Cerebral Palsy. She walked right before 18 months-- did PT from 16-23 months.

We used a 'push' walker(verus the sit inside kind)---like a cart and she walked behind it. We also put 'heavy' items (books, boxes, etc) in a kiddie shopping cart and she pushed it and used it as a walker (the books kept it from falling down when she leaned on it). GREAT. A small childs wheelbarrow was also a good tool if you loaded it up for her to move around. Lastly, we bought a small scooter and she leaned forward and pushed it with her hands...walking bear like.

She also ran late---at 2.5 almost 3 and jumped late. But she did it! She still has mild low tone in trunk/legs--but boy are her upper arms STRONG. She qualified for PT through the school district and will get OT/PT this fall.

Our PT used a lot of Kinseo tape to help support her muscles as she was learning. I really think it helped a lot- we also used soft soled shoes and 'ride'on (ride/sit on foot powered cars) toys to help build her muscles.

KC

[Roar]

Originally Posted by laohaire

I can certainly understand the impatience to get to the walking part because I felt the same way, but I kept reminding myself that walking depends on many other skills. Honestly, if she's not sitting up on her own yet, I'm not sure she can really work on walking yet - it requires the same trunk muscles and so on.

DD fell a lot when she learned to walk - the slightest thing could knock her over. A lot of tears A tough time. So all those muscles are really required to walk as safely as possible, too.

.

Yes, this is what I was about to post. All of the work you are doing is important and while I get the desire to get to walking fast, it can be really hard to have a walker who is not a strong walker. Our job was actually much harder once our child started walking because he was getting hurt a lot.

Hypotonia is far from a specific diagnosis so the ages other people experienced may not help a lot. But, for what it is worth we had steps by 19 months or so but it was quite a bit of time - over six months - before there was really very good walking and again lots of tears.

Keep plugging along and ask your PT for suggestions of what you can do at home to help.

[bits and bobs]

We had to let DS do it his way as he was really scared of walking, so no walkers or anything as they moved too fast for him. He crawled at 13 mths, walked at 20 mths.

[mommy2maya]

Audrey is almost 16m, and also still not walking, due to low tone. She is standing though, and can take a very few, uncoordinated steps independently. She has been in pt since 6m. She is overall hypotonic, but it is pretty pronounced in her midsection, her trunk and hips especially. She also has ankle weakness and overpronation. Her pt thinks she will take quite some time longer to master walking. She does focus on sitting positions, and varying them to work different muscles.

I wouldn't exert yourself looking for a walker- it is unlikely to strengthen her hips/trunk, it will just support her more and won't force her to strengthen. I think a walking toy, like a stroller or a shopping cart, weighed down, is more beneficial. Any sort of standing play is also really good- standing at a coffee table to play with toys, standing at the sofa to play with toys,etc.

[mommatj]

Thanks everyone!

I really like the idea of a weighted down shopping cart type thing. The biggest problem we have with push toys is that they are all so light, she generally pulls them over backward. So maybe that would be a good solution.

As for sitting--she CAN do it, but she doesn't like it. In the words of her PT, she will take ANY support she can get, as long as it's available.

I hear what you are saying about completely mastering sitting before moving on to walking. Perhaps I will meditate on that a little more. That is good advice.

I guess my desire to rush the walking reflects more of my own insecurity than anything else. It seems as though there is some sort of unwritten (and sometimes written too!) rule that 18 months is the cut-off for a "normal" child to walk. I am struggling with the question of "what is normal?" a lot lately.

I think I'm sort of having a revelation too while writing this, that my desire to push walking is selfish, and is not "what's best" for her. I just don't want to have to explain to other people WHY DD isn't walking yet when we don't know what the cause of the hypotonia is. It's so hard to explain in that situation.

Thank you for all the advice!

[mommy2maya]

my dd sits well, but any chance she gets, she leans, or slumps. She takes any support she can get. In the stroller, she slumps down, and practically slides out of the straps. She also rounds her back when she sits, she hunches over kinda. It is all trunk weakness.

As for people asking why she isn't walking, Audrey is so small, she appears to be much much younger than she is, so much smaller in fact, that she appears almost advanced. She is below the charts for height for age- you could take 6-7 m away to get her to between 50-75% for height for age. So, in essence, she is the size of an average 8.5-9.5mo, instead of a 15.5mo. Anyway, point being, she is so small, she doesn't appear abnormal. It *is* super hard for me to be with toddlers her age, and see what they are doing, that she is not doing.

[loraxc]

We had a push walker toy that DS's PT weighted down by duct-taping a big full bottle of Gatorade to the front. She was creative! She also put duct tape on the wheels and rubber bands around the axles to slow its movement down. DS walked using this for at least 2 months before walking solo. He also liked to push his LeapFrog table around the house!

[JavaJunkie]

I've never posted on this forum, but noticed this thread on the main page listings. My DS6 was in PT from around 7 months. He didn't walk until he was 21 months old. We bought him a push walker that had adjustable wheels. You could adjust so that the wheels didn't turn as easily. Honestly, I like the idea of a weighted shopping cart better, though. Depending on what kind of floors you have, the adjustable wheels may not do any good, anyway.

[half-pint]

Like the PP said, the timeline for walking for a child with hypotonia is extremely varied, depending on the cause. My son did not walk until 2 3/4. I was right where you were - focusing the the "walking" milestone....everyone always asks "Is he/she walking yet?" like it is a huge thing that will tell us all the outcome and/or severity of the disability. It does not. So once I realized that he would walk when he was able I completly backed off the push to walk.

Strengthening the core muscles is one of the most important things you can do for a child with hypotonia. This includes sitting, of course. We do alot of ball therapy work - child sits on ball and you move it back and forth. Standing activities for weight-bearing. In our particular case, there is a high incidence of scoliosis due to the weak muscles. So pushing to walk before the muscles are ready to support the frame is not doing them any favors.

We felt crawling was an important step not to skip if possible. Crawling helps strengthen the core, the arms, provides sensory input that walking does not. A study showed that myelin in the brain increases when a child learns to crawl.

After DS started cruising, we did buy a shopping cart (I think it was Fisher Price Push and Learn or something like that) and weighted it down. This particular cart has and adjustable handle that can be used for taller kids since most are made for one year olds and were too short for DS. I bought it here in Canada (vancouver toys r us).

Try to ignore all the queries about her progress. When I don't want to get into it I just say "He has his own timetable" or that he has some muscle tone issues......I used to feel self-concious at play gyms, etc but I realized it was MY issue not his, he doesn't notice the differences, he is just there to have fun!

[SuzyLee]

DS doesn't have low tone, but I wanted to recommend the walking toy we have. It is a radio flyer push wagon. The reason I love it is that it is very bottom-heavy so there is no way it will tip, and the wheels have friction, so they don't move very fast- making it harder for the toy to take off rolling away and the baby falling on her face!

DS loved that thing when he was learning to walk. It was pricey- maybe 80$ in the US, and that was on a great sale- but much cheaper than Haba, etc. wooden walking toys.

[mommatj]

Thanks again everyone for the suggestions.

I think (much to my husband's dismay) I will see how many of these things I can buy!

We also DID end up finding a walker from a lovely girl who posted it on kijiji not knowing that selling them here was prohibited. Luckily there's nothing wrong with posessing one!

DD is just recovering from a bout of Baby Measels, but I have noticed that she is getting stronger every day, and I think she'll really like trying some of these things out.

It's so nice to have a place where you can go and ask for advice from other moms who have been there. My girlfriends are great, but all of their babies are just so "normal" that none of them are able to offer much help beyond a sympathetic smile.

[Owachi]

My ds was given foot braces to wear, called Sure Step orthodics. It helped him walk better, but also made his ankles weak. We just stopped wearing them after 2 yrs, with advice from an orthopedic surgeron.

[Girlprof]

Wow, I can totally relate to all of this. Makes me think I should make a post of my own.

DD (now 19 months and just started walking! Yes, we are thrilled!) was diagnosed with hypotonia at around a year and she's been in PT since then. Like most others on here, our PT worked on the other skills first. Lots of ball bouncing, learning to crawl, etc. When we started PT, DD couldn't sit unassisted without tipping over and she didn't have the reflexes to catch herself when she fell. That was really hard because she kept bonking herself.

Anyway, I totally agree that it's worth it to work on all the pre-walking stuff, but man do I understand how badly you want your child to walk. We have a Fisher Price Stride-to-Ride and we put velcro on the wheels and stuffed socks in the axle to give it more resistance. This only sort of worked. I might try the radio flyer thing or the weighted shopping cart.

Have faith and hope. This is really tough, but your DD will get there. Everyone tells me "One day you'll be sick of chasing after her" and I always always always respond: I will never tire of seeing this child walk. Every step is a gift.

[lil_stinkyfeet]

I didn't read all the replies but my Ds used his sister's stroller/shopping cart type thing. I taped up the wheels so that it would offer some resistance and not move quite so fast. I am not sure it helped or not, I let him push it because he enjoyed it and eventually he started almost running with it before he officially walked. At that point I took it away and he started walking shortly after... he was 22mos.

[22blue_sky]

I enjoyed reading your post - particulary the comment at the end about girlfriends being great but can only really offer a sympathetic smile. I can completely relate to this and am trying to get used to the wide variety of reactions people have or don't have to knowing my beautiful son is developing in his own time and not at the same pace as 'normal' developing children.

[22blue_sky]

You brought me to tears!

Have faith and hope. This is really tough, but your DD will get there. Everyone tells me "One day you'll be sick of chasing after her" and I always always always respond: I will never tire of seeing this child walk. Every step is a gift.[/QUOTE]

Thanks for writing this - I so often feel this way when people tell me I am so lucky my little boy is not mobile yet and to enjoy it while it lasts. I outwardly smile politely (for their sake - they don;t know that what they've just said is actually rather cruel and so hurtful to hear). My beautiful little boy 10 months has global developmental delay second to hypoxic ischemic encephalopathy. He is having difficulty reaching many of the milestones for his age . . . .but, there is so much he can do and so very much joy he brings to my life.

I don't think I will ever get sick of seeing him roll over, sit up, pull to stand, crawl, walk - he may not be there yet, but when he is, I agree, each time he does these things will be a gift, never to be tired of.

Thanks

[mommatj]

Yeah, I once had a well-meaning mom tell me that she wished her physically advanced son was developing slower, because then she wouldn't have to chase him around the house all day.

ARE YOU KIDDING? What I wouldn't give for that!

But now I just tell myself that while those moms are proud of their children for meeting milestones, it's nothing like the sense of pride and accomplishment I feel when DD does something new because we know all the hard work we put in to every new little thing.

It's truly a gift to be her mom. It makes me look at the whole world differently!

And just today DD started waving (at 18 months) and it is the biggest deal for us!! There was screaming, a video camera, and we even had to go wake daddy up from his nap.

[betsyj]

Hi. My son has CP from a stroke and has been in PT since he was 7 mos old. He too is just now starting to crawl at 15 mos and pull to a stand.

My PT said that walkers and exersaucers allow kids to be "lazy". We put lazy in quotes because of course they aren't being lazy but the walker/exersaucer does the work for them. So she is strongly against them for kids with low tone.

She too recommends toys that kids can walk behind and use for support. And like other posters we are working very hard on crawling since it really does help strengthen the core and the arms.

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.