Hypotonia: Why Milestones Are Harder For My Third Baby

 
Hypotonia FAQ's  www.candokiddo.com
 

My first two babies hit every physical milestone on time or ahead of time, and I got the mommy good fortune of always zipping right through the developmental screening questionnaires at the pediatrician’s office without a second thought.

But things seemed to be a little harder for my third baby, Maeve. She was less active, less strong and felt extra “bendy” in her joints. This is because she has Hypotonia.

 
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My Baby Has Low MUSCLE TONE

In this post I want to thoroughly answer the questions I’m most frequently asked by CanDo Kiddo followers on social media who get glimpses of Maeve’s story.

And I’m writing this series of posts for all the parents, who are scouring the internet wondering what Hypotonia is, who happen to land here at CanDo Kiddo. If you’re new, welcome!

FAQ’s About Maeve’s Hypotonia

Q: What Is Hypotonia?

In a nutshell, Hypotonia (“low muscle tone”) means the muscles have less tension in them at rest than they should.

Low muscle tone is different from muscle weakness, which describes the tension in muscles when they’re working or contracted. Most kiddos with hypotonia do have some muscle weakness, and this can be improved significantly with therapy to strengthen. Muscle tone is controlled by the brain and does not change significantly with exercise (although a child can appear to be improving a lot as a result of strengthening - as in Maeve’s case).

Kiddos with Hypotonia tend to feel floppy, soft, squishy. Holding Maeve feels like holding warm butter. Particularly when she’s physically tired, I affectionately call her a “puddle of baby.” Those with Hypotonia have to work harder to hold themselves up and to move against gravity. Many have loose (hypermobile) joints, which Maeve definitely has - particularly in her hips and ankles.

Q: Why Does Your Baby Have Hypotonia?

Good question! Without a good answer!

Hypotonia is a symptom, not a disease. In fact, it’s a very common symptom of MANY (hundreds) of syndromes and diseases. And it can also just be unexplained (Congenital Benign Hypotonia).

At this time we don’t have answers as to why Maeve’s tone is low. She will be seen by a Neurologist in a few weeks, just to be thorough, but she isn’t currently suspected of having any larger syndrome or disease.

Q: How Did You Know Your Baby Had Hypotonia?

Two important disclaimers here, friends:

- I am a pediatric Occupational Therapist specializing in babies and toddlers. I would never expect a parent without developmental expertise to have noticed the subtle things I noticed in Maeve as early as I noticed them. Often a child is first suspected of having hypotonia when they are significantly delayed in upright milestones - delayed sitting, standing and walking.

-These individual signs together create a pattern or larger clinical picture. Any one or two of these in isolation would not necessarily be alarming or signify Hypotonia.

 
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  • 4 months: very floppy hip joints; resting hip position was a near-split; with almost no resistance hips and ankles could be bent to well beyond normal range of motion (shown in photos 1 and 6)

  • 5 months: still very low in Tummy Time, not pressing up through her hands to lift her chest; not able to roll belly to back, despite trying, due to very wide hip position; neck hyperextension in Tummy Time (rested the back of her head on her shoulders/upper back instead of using neck strength to hold her head up; photo 2)

  • 6 months: would not bear weight through legs, when supported upright

  • 7 months: very rounded back in sitting (photo 3), hard time lifting head in supported hands and knees position, hips seemed to melt out from beneath her if she tried hands and knees position; difficult to hold - floppy, seemed to fall away from you when held her (photo 4), and her hips were too wide and loose to get a good purchase on your hip

  • 8 months: not making consonant sounds (no b, d, p, m sounds), still very poor sitting balance and no protective reflexes when falling backward (very hard head bonks falling out of sitting every day); easily physically fatigued (photo 5); seemed to need more support to sit in our Baby Jogger City Select stroller (which had worked fine for my other 2 babies), very dominant W sitting or half W sitting positions

  • 9 months: still had head lag when pulled to sit, ankle joint instability / hypermobility, crawling endurance limited to only a few feet before she needed a break, very wide hip position in crawling (crawled on her inner knees)

Q: Who Diagnosed Your Baby With Hypotonia?

A general doctor, a pediatrician or a specialist such as a Neurologist can diagnose Hypotonia.

I discussed concerns about Maeve’s hypermobile joints with our pediatrician at 6 months and we agreed to take a conservative approach and watch how she progressed through upcoming upright milestones - sitting, standing, walking - with “Mommy Therapy” at home (admittedly a big perk of being a pediatric therapist!).

Sweet girl got about an hour of motor and sensory therapy each day with me and I was DETERMINED that she would crawl. We worked hard, hard, hard and she started sitting and crawling, but I could see that moving against gravity was extra hard for her and that she was using a lot of compensations (less-than-ideal-workarounds for movements and positions that were hard for her). So at 8 months I requested a Physical Therapy evaluation to give me some additional ideas to help her at home and guidance for supporting her hypermobile joints.

The PT confirmed what I suspected - mild Hypotonia.

Now PT’s can’t officially diagnose medical conditions, but what generally happens is that a therapist’s evaluation includes findings (in this case Hypotonia) and a plan for treatment. That report is sent to and signed by the referring doctor (basically agreeing with the diagnostic suggestion of the therapist) and therapy is billed under the diagnosis that was consented to by the doctor. Sorry to get all nerdy but I want to be clear that our PT didn’t technically diagnose the Hypotonia - but it was part of her clinical findings.

Q: Is Her Development Delayed By Hypotonia?

Now here’s where CanDo Kiddo followers on social media can get confused - and it IS confusing. Maeve is not delayed with her milestones. She sat up at 6.5 months. She crawled at 7.5 months. She stood with support at 8 months. She started cruising furniture at 9 months. And she’s currently standing without support at 11 months. On a thorough developmental evaluation of gross and fine motor skills she does not qualify as having a delay (2 standard deviations below the normal score). But she scores “at risk” on the short screening questionnaires given at the pediatrician’s office.

And Maeve has been receiving at least an hour of home therapy a day since she was 6 months old. She started Physical Therapy at 9 months old. She received orthotics (SureStep SMO’s) at 10 months old. These supports came really early, and the amount of therapy she gets is a perk of having an OT mama. She started PT, not because she was delayed in milestones, but because her therapist mama’s eyes saw poor positioning and poor quality of movement in the milestones she was meeting and wanted more support for her.

There’s no way to know for sure, but my hunch is that without early intervention Maeve would have skipped crawling and would have been referred to PT between 12 and 18 months for delayed pre-walking skills. This is a more common timeline for kiddos with hypotonia.

Q: Why Does She Wear Shoes?

While I recommend that early standers and walkers are left barefoot or as close to it as possible, my own daughter wears big clunky New Balance sneakers. Why? Maeve’s joint hypermobility means that she doesn’t have the minimal baseline level of stability in her feet and ankles needed to keep her bones in good alignment. So she needs external support (that children with normal joints don’t need).

She also has to wear shoes when she wears her SMO’s / orthotics. The SMO’s give even more stability and support and minimize pronation. They help her movement, and they also protect her joints from becoming permanently misaligned. A pediatric Physical Therapist typically determines if orthotics are recommended for a child.

Q: What Does Therapy Do For Her Hypotonia?

*I know a lot of fellow therapists follow CanDo Kiddo so I’ll throw in some nerdy terms here. Non-therapists just ignore the jargon ;)

The biggest things we work on are improving strength and stability (you can follow along on Instagram where I share a lot of her therapy work in my Stories). Her PT evaluates her progress and sends us home with a robust home therapy program.

Her PT monitors the orthotics for size and tolerance and need.

Maeve wears Hip Helper shorts when she sleeps to prevent her hips from staying in that near-split position too much.

I use sensory interventions to increase her activity/arousal level prior to movement times so that she can give max effort. I use the Wilbarger Therapressure Protocol and sensory play to address sensory defensiveness in her proprioceptive system - she does NOT like pressure through her hands or feet. And she gets lots of movement work to improve her vestibular/movement sensory processing which plays a big role in muscle tone and activity/arousal level.

And because muscle tone doesn’t just affect the body, it also can affect speech, feeding and other mouth skills. So far we see Hypotonia impacting babbling sounds but not feeding. I use Beckman Oral Motor exercises and facial massage to help her mouth muscles.

Q: Will Her Hypotonia Go Away?

Mild Congenital Benign Hypotonia can improve some with time but Hypotonia doesn’t tend to go away completely.

The aim of therapy is to strengthen and improve the coordination of muscles as well as the sensory processing of Proprioceptive (pressure and stretch) input from the muscles and joints. Strong muscles help stabilize hypermobile joints. Strong muscles help a body who needs to work harder to be upright and move against gravity.

We see Maeve getting so much stronger as a result of all her hard work and the supports she receives. And then when her body is at rest - in the stroller or being carried - she’s right back to limp noodle status.

We love our little squish and I hope her story helps others!

If you suspect that your child may have Hypotonia, speak to your child’s doctor. My biggest recommendations for that conversation are (1) to bring photos or videos of what you see your child doing (or not doing) that concerns you. And (2) to engage the conversation from a place of curiosity instead of anxiety. Ask your doctor questions - Do you notice…? Should I be concerned about…? Are there ways to get more support? Would a specialist or therapist be helpful? - so that you engage their best clinical skills instead of their best calm-down-the-freaked-out-parent skills.


Baby not walking yet?

While most babies don’t need us to “TEACH” them to walk, most parents want to know how to support and encourage this milestone (or at least not slow it down). So I created a free email course to show you how to set the stage for your baby’s first steps and to feel more confident that the ways your pre-walking baby is playing are helpful for development. To sign up for the free course, click here or on the image below:

 
 

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