Hypotonia people - your babies at 16 months

[mrssandro]

Sorry you are going through that. Just looking at the video she is so very close.

DD is behind developmentally and I can only say that getting EI involved sooner the better is your better option if you are concerned. It has been a bitch trying to get insurance to cover what DD needs. Finally we are at a point of getting 3 sessions a week. (She @ 6 months and should be at 11 months) They are saying the earlier the better as this gives plenty of time to hopefully get her back on track.

Just my two cents. Your baby girl is beautiful.

[Brie]

@awinter

[Brie]

P is the opposite, he has hypertonia, but I think it's worth pursuing a physiatrist referral from your primary pediatrician. The physiatrist would be able to assess whether she actually needs some support for her ankles, of if he/she thinks PT would be adequate. They're a really awesome specialty you don't hear about a lot.

Mostly I am Team Physiatrist because ours is amazing and also hot. LOL.

[jr009j]

When DD1 was in PT for late walking, the PT had her sit on a step stool and stand up off that. It helped her a lot because she didn't have to go from the ground all the way to standing. I really think it helped her build confidence. Also try having her walk while pushing an upside down laundry basket or box. Its a little more stable than a walker.

[Brie]

Sept 1, 2015 13:54:45 GMT -5 @tambcat said:

Sept 1, 2015 13:53:03 GMT -5 Brie said:

P is the opposite, he has hypertonia, but I think it's worth pursuing a physiatrist referral from your primary pediatrician. The physiatrist would be able to assess whether she actually needs some support for her ankles, of if he/she thinks PT would be adequate. They're a really awesome specialty you don't hear about a lot.

Mostly I am Team Physiatrist because ours is amazing and also hot. LOL.

Thank you. I've never even heard of physiatrists!

eta: okay, well, apparently there are none in our insurance network, but there is one in Tallahassee. We might be able to get special approval form the insurance company. (If not, we could still go, it would just be out of network so probably more expensive).

They're also called rehab medicine specialists sometimes, or an orthopedist is basically the same thing as a physiatrist but they also do surgery.

[mrssandro]

I should add we did end up going private. We got evaluated at 2 months and they saw nothing wrong with DD. But this was before she had surgery on her hernia. After the surgery it seemed that the acid reflux tripled and she was struggling at 6 months. So we tried to do the doctor referred therapist after 6 months because DD was falling behind. But like you the baby would cry and fuss the entire time and did not like her. Also getting out of work was a pain. So we tried ECI again to get a new therapist that would come to our house (or my MIL house) while we worked. But they never got back to us. So we got another home therapist referral and so far it took 2 months to get set up with her. Insurance will pay half of a session so about $100 per session...but we have almost met her deductible so we won't have to pay for much longer. But January we will have to pay again. Lets just hope the 3 times a week boot camp style will help DD and she keeps happy during the sessions.

[sparkythelawyer]

EDITED:  I need to finish reading before opening my mouth/typing.

I'd suggest another PT Eval.  Most states allow for one every three months.  And a lot of times the people doing private PT also do EI evals.  

She is adorable no matter what :-)

[everafter07]

My daughter didn't stand or walk until 18 months. She would NOT finger walk or cruise, just plopped down if we ever tried. Or cried. at 18 months, within about a two week period she cruised and then walked independently. She was running by 20 months.

[jessnpaul]

Forgive me for not knowing, but is she in daycare? Our EI therapists went to daycare since there was no way we could add therapy (5 hours of it a week!) into our week as two FT working parents!

His daycare teachers and all his little friends loved the therapists! I had webcam so I used to watch them crowd around. It was really cute, even though they made my son the focus of their attention!

ETA: I only mentioned this since you said you had a scheduling issue. 

[everafter07]

I personally wouldn't worry until around 18 months, but that's because I've already come through it. Her pedi said we should get an evaluation at 18 months if she still wasn't cruising or walking. She did everything gross motor on the late side, but now at just past 2 she's all caught up. But you should call if you have any doubts, doesn't hurt to ask!

[auntie]

DS has hypotonia with his ASD but we didn't know about that until he was 7. He was walking at 15 1/2 months. He was also big into climbing. Sometimes climbing and pushing heavy objects is a form of sensory seeking behavior related to SPD.

[mrssandro]

I know it's tough watching other babies pass your baby. I had to hide a lot of people on my Facebook feeds lately.

I am not a professional but it looks like she is so close to walking on her own and just needs to work on her confidence. I would give it some more time.

[Brie]

Sept 1, 2015 14:16:19 GMT -5 @tambcat said:

I just go back and forth on whether I want to do any kind of intervention. I see that she's made improvement but then I worry if I don't do anything she will get further behind her peers. She's about at the same level as my sister's 13 month old in terms of what she can do, but I think sister's baby has more potential for progress and will likely pass E soon. And that will make me sad.

It can't hurt.  Our EI therapists will go to daycare, even, so I literally don't even have to take time off work if I don't want to (we alternate home and daycare every week though). 

[daydreamer]

She's so cute and clearly having a good time in the video.

Your little girl is ahead of our where our DS was at 16 months, and he took his first independent steps at 17.5 months. He was very unstable in the core and would immediately fall if he got distracted and happened to let go of the furniture. He could only walk if we provided support with both hands. I don't think hypotonia is marked anywhere in his records, but it has been mentioned and he does w-sit unless prompted not to.

At 22 months, he's clearly still delayed, but catching up. He scored a 10 for gross motor skills on the 18 month ASQ, but I'm guessing will get at least a 30-40 at 24 months. His gait is undistinguishable from peers to my untrained eye.

We had a couple of physical therapy sessions around 10 months, but he hated them so we just did some exercises at home. Our pediatrician doesn't get concerned unless progress stalls and early intervention at 19 months said he didn't qualify through them.

It is hard when there is comparison. DS has a cousin 8 months younger who walked 1 month after him. I just tried to focus on the fact that DS was perfectly happy not walking.

[oliviapope]

One thing to remember is that if babies are not walking, it isn't just about the legs. Usually the spine is not strong enough to support them. If you are going to work on things at home as well, have her go back and work on some tummy time play to build up that strength as well.

[dcrunnergirl52]

What a cutie!

DS2 has hypotonia. He always felt like a "slippery baby" and by 8 months or so, we knew something was up, and started him in PT through EI. However, all the pedi's we saw (you see a different one at each appt sometimes) said again and again that they didn't think he had low tone. However, all three PTs that we saw immediately said he had low tone. I think pedi's just think of low tone only when it's really serious--like kids who have other medical conditions that leave them completely limp. When it's just "medium or slight" low tone, they brush it off. I think it's great if you can get her evaluated by another PT--particularly one that specializes in kids.

At 15.5 months, DS2 was finally crawling (started around 13 months) and attempting to pull up and cruise. But, there was no way he could stand by himself and walking was out of the question. Our awesome PT had said from her first day with him around 11 months that his ankles rolled in and if he wasn't standing on his own by 16 months, we'd look at getting him orthotic braces (SureSteps, http://www.surestep.net). So, right around 16m, we started the process to get them. They take a while to come in and are expensive ($1,300 before insurance, which for us thankfully covered 75%), but they were life-changing for him when they arrived around 18 months. He started walking within about a week or so.

He definitely needed the braces, and we wouldn't have known if we had only listened to our pedi. We're on our second pair now, almost a year later, and he'll likely need them for another few years. You can tell the difference in his stride/gait/posture when he has them on, and they are improving everything. He's 2y2m now and running and climbing like a normal toddler. He's all caught up on most things, and we've weaned down to 1 PT appt/mo just as a check in.

All this to say, a good PT is worth their weight in gold. Even if your DD hates the appts, you can learn so much by just letting them watch and evaluate your DD and give you their input. Ours told us that kids who need the orthotics and have ankles that turn in often don't walk until after 2 years old without them b/c they don't have the confidence and muscle strength in their ankles to do until then.

[Marmee]

My DD3 with hypotonia (weak core)was walking by 15mo. She also had sensory issues concerning her feet/hands/mouth. She started PT & went weekly from 9-18mo. She "graduated" out of PT at 18mo which they tell me is rare. She still struggles some with stamina (at 6yrs compared to peers) but otherwise is normal. She swims, plays soccer, does ballet, monkey bars, etc.

DD4 also had weak core & walked later (15 mo I think) too. She also graduated out of EI/PT by 18mo. She seems totally on par gross motor wise (maybe ahead even because she rides a scooter/plasma car/balance bike) now at 2.5.

[mrssandro]

I love reading these positive stories about PT.

[notlurkingatyou]

Your statement about her ankles compelled me to delurk and ditto the suggestion about getting her evaluated to determine if orthotics could help. My son has been in PT since 2 months due to torticollis, and under the supervision of numerous other therapists since 10 months due to global delays. While he hasn't been diagnosed with hypotonia (at least according to the neurologist who evaluated him), a number of professionals have commented that his tone is low side. He started taking steps at 15 months but would not walk unassisted until about 19 months. His ankles were rolling inwards as you describe; however, his presentation was somewhat subtle and his PT didn't feel that he was a "textbook" case for needing orthotics. Around 18 months, we had him evaluated by an orthotist who was very convincing. She let us know that the problem would not correct itself and could cause joint problems (pain) for him into adulthood. I had been thinking of it in the short term of "does he really need this to walk?" and "is it was worth it to get orthotics to push him over the hump?". The answer to both those questions was no, he didn't need them to walk and he made strides towards full-time walking right around the time the orthotics (SureStep SMOs) came in. But framing it in terms of the lifelong impact really changed my viewpoint in taking action. He's had the orthotics for 3 months now and I couldn't be happier with our decision to move forward with them. They instantly provided him more balance and confidence. That change alone was worth it. They are kind of a pain to put on each morning and do limit footwear choices, but it's for a short time (probably 9-12 months) and worth it to know he'll be able to lead an active life without pain. Most orthotics clinics are private and offer free evaluations. They do a lot of the insurance legwork so that you're clear on out of pocket expenses before you are committed to ordering a device. I'd ask EI or your PT for recommendations; they should be familiar with the practitioners in your area and which are more likely to turn patients away (i.e. be honest about whether the kid needs it or not). 

[Deleted]

All 3 of mine have hypotonia. The problem with hypotonia is that it's not something that ever goes away. Im 34 and can still sit with my legs in the W shape and am extremely flexible. So while she may suddenly catch up, she can just as easily fall behind again.

I have noticed with J it's a constant struggle. Fall behind, catch up, fall behind, catch up. J startwd walking at 16.5 mos. Knowing that I got the girls started in PT as soon as we noticed them sitting in the W position and realized they had low tone. Now that J is three the issues are more building speed and strength rather than developing those early skills like standing, walking, squatting, climbing. So we keep him enrolled in swimming and make sure ehe gets a lot of GM play at the park daily. But while thyme are still developing those early skills I really think PT is needed.

At 17.5 mos K is walking independently all the time and is now "caught up" for the time being. E can take steps and walk some independently but not all the time. She. CAn bend down to pick up items and get to standing on her own. It's still very hard for her and she has to develop strength.

The pronation (rolling feet inwards) has a lot to do with standing in a wide stance which is caused by lack of strength for balance. I just talked to the PT about this last week. Basically, they stand with feet wide apart because it's better for balance when they are weak, but this leads to the weight being distributed I wards which leads to pronation. I got the girls regular stride rite soft motion. And even that has helped a ton! Just having thst extra support (vs robeez or bare feet) helped train them to stay more straight. So I would definitely try the shoes again.

At 15 mos a typically developing child will be able to walk independently, bend down and pick up a toy, stand up again, and carry it, all without holding onto anything. So even if she is close to walking she still needs the strength developed for squatting, getting into standing independently etc.

Can she climb stairs or other structures? Does she pull up to standing?

[Deleted]

Sept 1, 2015 15:34:32 GMT -5 @tambcat said:

Sept 1, 2015 15:26:30 GMT -5 @awinter said:

Can she climb stairs or other structures? Does she pull up to standing?

She has been pulling up since about 13 months, and she cruises along furniture all the time and can transfer from one object to another. She can crawl up stairs, climb onto the raised hearth for my ILs' fireplace, climb into short toddler chairs, and use a stool to climb onto the couch (my mom discovered this one by accident). She *almost* climbed onto the couch herself the other day, at the corner (sectional), but didn't quite make it before she started sliding back down. 

Sounds exactly my girls around 15 mos. The pronation may be a big contributing factor to not walking. As is core strength. You can try row row your boat where she has pull up with her ab muscles. My PT does this a lot. Eta: K was pulling up and cruising around 11 mos and E at 12. It wasn't until around 14mos that I realized they had low tone. And their GM development stalled. By the time we saw the pedi at 15 mos I had already called EI.

[dcrunnergirl52]

Sept 1, 2015 15:20:18 GMT -5 notlurkingatyou said:

Your statement about her ankles compelled me to delurk and ditto the suggestion about getting her evaluated to determine if orthotics could help. My son has been in PT since 2 months due to torticollis, and under the supervision of numerous other therapists since 10 months due to global delays. While he hasn't been diagnosed with hypotonia (at least according to the neurologist who evaluated him), a number of professionals have commented that his tone is low side. He started taking steps at 15 months but would not walk unassisted until about 19 months. His ankles were rolling inwards as you describe; however, his presentation was somewhat subtle and his PT didn't feel that he was a "textbook" case for needing orthotics. Around 18 months, we had him evaluated by an orthotist who was very convincing. She let us know that the problem would not correct itself and could cause joint problems (pain) for him into adulthood. I had been thinking of it in the short term of "does he really need this to walk?" and "is it was worth it to get orthotics to push him over the hump?". The answer to both those questions was no, he didn't need them to walk and he made strides towards full-time walking right around the time the orthotics (SureStep SMOs) came in. But framing it in terms of the lifelong impact really changed my viewpoint in taking action. He's had the orthotics for 3 months now and I couldn't be happier with our decision to move forward with them. They instantly provided him more balance and confidence. That change alone was worth it. They are kind of a pain to put on each morning and do limit footwear choices, but it's for a short time (probably 9-12 months) and worth it to know he'll be able to lead an active life without pain. Most orthotics clinics are private and offer free evaluations. They do a lot of the insurance legwork so that you're clear on out of pocket expenses before you are committed to ordering a device. I'd ask EI or your PT for recommendations; they should be familiar with the practitioners in your area and which are more likely to turn patients away (i.e. be honest about whether the kid needs it or not). 

Our PT and orthotist also stressed that getting his muscles right now is necessary to help him in the long-term/over his lifetime. They said otherwise, it can lead to back pain and an inability to keep up with others. And, before we got the orthotics, they did ask us to keep him in good sneakers (Stride Rites) all the time and not let him go barefoot b/c that's the worst thing for the pronation. Like @awinter said, even that helped a lot. 

FWIW, we used Hanger Clinic for our orthotics and I think they have locations all over. A lot of people use them for baby helmets too.

ETA: Here is a pic from tonight of DS2 in his sneakers and orthotics. They are barely noticeable, especially compared to the toy snake he's obsessed with and swinging around.

[Brie]

For core strength and balance P's PT uses one of those big yoga balls and sits him on it and bounces it and rocks it side to side gently. He thinks it's hilarious but it helps core muscles a lot.

[dcrunnergirl52]

Sept 1, 2015 19:49:13 GMT -5 @tambcat said:

Sept 1, 2015 17:22:53 GMT -5 dcrunnergirl52 said:

Our PT and orthotist also stressed that getting his muscles right now is necessary to help him in the long-term/over his lifetime. They said otherwise, it can lead to back pain and an inability to keep up with others. And, before we got the orthotics, they did ask us to keep him in good sneakers (Stride Rites) all the time and not let him go barefoot b/c that's the worst thing for the pronation. Like @awinter said, even that helped a lot. 

FWIW, we used Hanger Clinic for our orthotics and I think they have locations all over. A lot of people use them for baby helmets too.

ETA: Here is a pic from tonight of DS2 in his sneakers and orthotics. They are barely noticeable, especially compared to the toy snake he's obsessed with and swinging around.

Aw, so cute! And you're right, not really noticeable at all.

We definitely have a Hanger here. I pass it everyday. My dad used them for something.. either his special boot or fitting for a prosthetic.

The advice to keep them in shoes is so different from what you hear these days for babies without special issues. My grandmother would be proud. She was always on our ass to get some hard-soled shoes for Joanna to "help her learn to walk." Lol

Did anyone recommend high top sneakers for you or just any sneakers?

They didn't mention high tops but we had a lot of DS1's barely worn regular Stride Rite sneakers left that our PT said those were fine to use in the interim while we waited on the orthotics.

[notlurkingatyou]

Sept 1, 2015 20:22:54 GMT -5 dcrunnergirl52 said:

Sept 1, 2015 19:49:13 GMT -5 @tambcat said:

Aw, so cute! And you're right, not really noticeable at all.

We definitely have a Hanger here. I pass it everyday. My dad used them for something.. either his special boot or fitting for a prosthetic.

The advice to keep them in shoes is so different from what you hear these days for babies without special issues. My grandmother would be proud. She was always on our ass to get some hard-soled shoes for Joanna to "help her learn to walk." Lol

Did anyone recommend high top sneakers for you or just any sneakers?

They didn't mention high tops but we had a lot of DS1's barely worn regular Stride Rite sneakers left that our PT said those were fine to use in the interim while we waited on the orthotics.

Our PT recommended shoes with structured bottoms, New Balance sneakers in particular. They are one of the few shoes that had real soles in smaller sizes (he was a size 3 at 18 months).

[mudslide]

T has hypertonia, so not the same. But I really suggest pursuing pt. It helped T tremendously and we are getting ready to restart

[Brie]

Swimming lessons would be great too. It's amazing to feel how P's tone changes in a pool.

[Deleted]

Sept 2, 2015 3:28:58 GMT -5 Brie said:

Swimming lessons would be great too. It's amazing to feel how P's tone changes in a pool.

I agree with swimming. J's PT really recommends it. J has been doing lessons once a week for the last 13 mos or so and the girls start this week. Not only does the actual swimming help J but he also really improved his jumping because they jump into the pool and he learned to climb up a small slide to use at swimming.

[notlurkingatyou]

Sept 1, 2015 21:30:59 GMT -5 @tambcat said:

I feel like Stride Rites are softer and more flexible than SKR! That's why I went with these. The sneakers are new. But I wasn't really sure what I was doing. The pedi just said high top sneakers.

I think those are probably better than the pre walker style stride rite shoes. They probably provide stability and support, but may be harder to move in than an athletic sneaker style. It is counter to what you are told for a kid without gross motor delays. My PT explained that it's better for most kids to develop those support muscles as they learn to walk, but some kids have a harder time doing it concurrently. For the latter, it's better to get them over the hump of learning to walk by providing extra foot support and then let them develop those muscles later.

It's so tough to have a kid with extra needs, so kudos to you for trying to find the best way to help her in a way that works for you. I wanted to mention how good my son's therapy has been for me. It's so helpful to watch them work with him and ask any questions that pop into my mind. A good therapist should be able to help you figure out how to motivate your child, but you really have to commit to some regular frequency for that relationship to develop. It's so hard juggling my work schedule with those needs. I often work in the evenings to make my job's billable hour requirements, but I am hoping that addressing his needs now will make it easier on all of us in the future. The hassle is worth the feeling I get with having the tools to help him and a knowledgeable resource at my disposal.