Dyspraxia, Apraxia, Hypotonia, Oh My!

I have to say, I’m quite shocked at some of the things people google and find my blog because of. Some of the top searches are:

  • Androidz Toys – This is due to my review of the product
  • Housework Sucks – Let’s face it, it DOES suck.
  • This is the one that surprised me…

  • Pictures of Toddlers with Hypotonia
  • This is due to the fact that in one of my posts, I mentioned my youngest son being a yoga master since he has such low muscle tone in his legs and feet. He’s able to contort himself in some positions that make me wince with pain just watching. So you may be asking “What is Hypotonia anyway?”

    The Children’s Hospital of Boston describes it best…

    Hypotonia means decreased muscle tone. It can be a condition on its own, called benign congenital hypotonia or it can be indicative of another problem where there is progressive loss of muscle tone, such as muscular dystrophy or cerebral palsy. It is usually detected during infancy.
    An infant with hypotonia exhibits a floppy quality or “rag doll” feeling when he or she is held. Infants with this problem lag behind in acquiring certain fine and gross motor developmental milestones that enable a baby to hold his or her head up when placed on the stomach, balance themselves or get into a sitting position and remain seated without falling over.

    Since the muscles that support the bone joints are so soft, there is a tendency for hip, jaw and neck dislocations to occur. Some children with hypotonia may have trouble feeding, if they are unable to suck or chew for long periods. A child with hypotonia may also have problems with speech or exhibit shallow breathing.

    How do you know if your kid has it?

    The following are common symptoms associated with hypotonia. Each child may experiences symptoms differently. Symptoms vary depending on the underlying cause of the problem:
    decreased muscle tone, muscles feel soft and doughy
    ability to extend limb beyond its normal limit
    failure to acquire motor related developmental milestones (such as holding head up without support from parent, rolling over, sitting up without support, walking)
    problems with feeding (inability to suck or chew for prolonged periods)
    shallow breathing
    mouth hangs open with tongue protruding (under-active gag reflex)
    The signs and symptoms of hypotonia resemble that of other conditions. Always consult a physician for a diagnosis.

    Basically, how we found out Chewy had it was that he couldn’t sit up on his own until he was 11 months. He was pretty floppy as a baby as well. He didn’t crawl until 14 months and that was just an army crawl. This triggered another worry in us. His pediatrician referred us to Early Interventions, a home based therapy program funded by the state/county and insurance companies. Through weekly PT/OT he finally got up on hands and knees to crawl around 18 months. His therapists diagnosed him (along with our various doctors) as having Dyspraxia. Basically it’s motor coordination disorder, sensory processing disorder, hypotonia and more wrapped up into one. (You can find out more information here – DyspraxiaUSA.org).

    So now that we figured out WHAT he had, we had to figure out the best way to treat it. Through more therapies he started walking finally at 26 months. He also was finally gaining some weight. He was considered failure to thrive for many many months and along the way we found out more bad news, he’s allergic to just about every type of food out there. Wheat/Gluten, Milk, Soy, Nuts, Citric Acid, Squash just to name a few. This made fattening him up a bit harder. We found Neocate Jr. and he finally started to pack on the pounds. Through his feeding therapist, nutritionist and speech therapist, we were able to finally get him eating some solid foods by 2 yrs old as well.

    Now onto the Apraxia. Some children have this alone, some have it in conjunction with Dyspraxia. Naturally, my son had to be Johnny Drama and have everything at once. ;) Now if you’ve made it this far into my post you are probably asking what the heck is Apraxia?? Again, I can point you to a wonderful site ApraxiaKids.org.

    Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.

    Okay, now that all that is said, I hope this helps the people out there googling for information about their kids. I was in that spot 18 months ago. Googling, talking to doctors, searching for answers. I hope that I can help point you in the right direction if you are concerned about your child. My number one piece of advice? Talk to your pediatrician, but with back-up. Have the information ready, and fight for what you think is right. Don’t feel defeated if one doc doesn’t agree with you, you can always as for a second opinion. I’m lucky in the fact that my husband is an MD, but anyone can fight for their kids. You are your kids #1 advocate.

    If you want/need anymore information on the above conditions, feel free to email me at mom@coloradomoms.com. I’d love to chat with you about it all!

    And the picture that started it all… My Yoga Master.

    Emily

    Fueled by coffee and wine. Wife to a doc, mom to three boys (one with Autism), a puppy and a tortoise. I knit, I get crafty, I tweet.

    Comments

    1. Kim says

      Hi! Chalk up another one who found you googling Dyspraxia AND Hypotonia! Just wanted to drop you a note and thank you for the brilliant sentence, “Basically it’s motor coordination disorder, sensory processing disorder, hypotonia and more wrapped up into one.” I have the hardest time explaining The dyspraxia to people, and this is easily broken into chunks, or is great by itself. Fighting tooth and nail to get the hypotonia dx for him, b/c the dyspraxia and spd are not covered by insurance, but the hypotonia might be. Thanks again.

      • Emily says

        Thanks so much for reaching out! Yes, Dyspraxia is common in the UK, but in the US, I still get met with blank stares, even from PT/OTs and Docs!

    2. carmel says

      That upside down thing they makes me laugh..we often joke that we need to buy our little one a crash helmet so she can somersault down the street rather than learn to walk!!

    3. says

      He is absolutely adorable! It was SO nice meeting you this weekend. I’m really glad we were able to talk a bit, I feel like if we lived closer to each other, we’d be pretty darn good friends. :) Keep in touch and hopefully we’ll meet up at a future event!

    4. ColoradoMoms says

      Thank you for all the information! He has been tested for seizures as he started a weird twitching/jerking motion at 9 months that is believed to just be his immature nervous system, but I will definitely look into it!

    5. RC says

      My daughter has apraxia/dyspraxia and progressed at about the same rate. She didn’t walk until 23 months, didn’t start talking until 4 1/4 years.

      But you are absolutely right, you are your child’s number one advocate. Often children with apraxia/dispraxia are lumped into autism spectrum, if it gets you services, let them do it but inform the therapists of his condition.

      We’ve been very fortunate that most of our daughter’s therapists have been AWESOME. She’s now 5 1/2 and has taught herself to read, in kindergarten she’s reading at a 3rd grade level! Her motor skills have vastly improved as well, while she has a long long road to go still she’s well on her way.

      Not to completely freak you out, but also look into Benign Rolandic Epilepsy. It’s our daughter’s final diagnosis and most likely the cause of her praxias. There have been several studies linking the two recently and it’s difficult to detect as the seizures only occur while sleeping and are typically only facial, not grand mal.

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