Does Anyone Have A Child With Muscular Dystrophy In Addition To Autism? | MyAutismTeam

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Does Anyone Have A Child With Muscular Dystrophy In Addition To Autism?
A MyAutismTeam Member asked a question 💭

I have been worrying about numerous issues my son has that have not improved over the years with therapy. I have become concerned with the possibility that he also has muscular dystrophy. There are various kinds of md & my son might have a milder form of it. I haven’t brought it up to my husband yet because he will try to talk me out of having my son seen by a Neurologist to find out. From what I’ve read about md, my son has 70% of the symptoms that coincide with it. This would explain his… read more

posted February 1, 2019
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A MyAutismTeam Member

Go to a major children’s hospital with lots of specialists- they often have a genetic counseling along with special pediatric neorologists. You shouldn’t have to worry and diagnose without the right resources.

posted February 2, 2019
A MyAutismTeam Member

@Christians Mom Two of my sisters both have boys with both my son thankfully just got cleared for Muscular Dystrophy but diagnosed with Autism.
Me and all three of my sisters all carry the gene for it.
My oldest sisters son has showed signs very early on as a baby Muscular Dystrophy affected him.
My eldest sister has three boys one not affected by either MD or Autism but her younger two both have autism and the very youngest MD.
My sister runs a support group you may find helpfull ill post you the link if you would like. X

posted February 8, 2019 (edited)
A MyAutismTeam Member

@A MyAutismTeam Member I totally understand this- immfacing ghe same issue with my daughter on another front. Don’t let anyone assume everything is from autism- it could be something else too. It may open a door that really helps your son get the help he needs. Good treatment comes from correct diagnosis- this helps all involved collaborate treatment plans together with the same goals. I have experience in this field and I’ll tell you one specialist won’t be enough. You need a multidisciplinary healthcare center with subspecialties - not just a pediatric neurologist and genetic counselor- but a children’s hospital that can diagnose rare diseases. This will be the most efficient way to go with the least amount of wear and tear on you. Children’s hospital clinics understand chronic disease and coordinating appointments together.

posted February 3, 2019 (edited)
A MyAutismTeam Member

Thanks for your input to everyone who commented. I spoke to my husband & while he is skeptical, he agrees that we need to take him to a specialist to get to the bottom of my son’s issues. There could be more to my son’s lack of progress than simply Autism. His toe walking has increased & it is a way to compensate for muscle weakness related to md. I can’t just dismiss the obvious, which is that his muscle weakness appears to be more than just Hypotonia.

posted February 3, 2019
A MyAutismTeam Member

Walking on the toes or the balls of the feet, also known as toe walking, is fairly common in children During the beginning stages of motor skill development . Most children outgrow it.

Kids who continue toe walking beyond the toddler years often do so out of habit. I remember walking on the heels of my. Feet only whenever I would become over stimulated it would help self regulate my body and aid as a stress relief. It's physical stimulation that the child is using instinctively. Becuz it must be helping them regulate their sensory overload
So if physical stimulation is needed to balance the sensories then there's an issue with the other senses. Maybe he's processing his physical stimulation using over visual stimulation
Sometimes that happens For example when I was younger I use to walk on my heels because
For example I have auditorial processing delay
Or when sounds are too loud I can feel it physical stimulation
Even if the sound isn't loud enough to produce vibrations that would stimulate neurotypicals. My auditorial processing is heighten sensitivity becomes to much and takes place of all other senses so when interpreting The expression really slowing down the interpretation and expression so well the person is trying to process the environment they are almost standing idol stuck and kinda feels like. The ur distracted like if u. Are on autopilot or forgot what u we're doing so. Toe walking or heel walking. Stilmates physical enough to cognitively help them manage the drifting. Focus it kinda helps remind them what they are doing and follow through with out being over welmes with other senses
Also I would and still do stand on one leg when I'm having sensory issues
I also visual trace and copy sequence of sound with physical stimulation It helps balance my auditory sensitivity
Becuz it can Ben overpowering think of how people put weight backpacks on a dog. When they are experiencing high anxiety and can't walk them in public or bark too much this aids the same way becuz it's a cognitive issue . The dog is too distracted with the smell and. Visual stimulation and they get too excited the weight gives them another sensory to focus on so that their Not so fixated on all the people Helps balance out processing By taking focus off the sensory they have sensitivity to. By stimulation and mimicking the sequence of pattern. To balance out cognitively aware of their environment cognitively aware of their environment helps them not trip and helps balance and focus on the task at hand to follow through with their own objective or task

posted February 2, 2019

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