Gower's gait / DMD / hyermobility

[lemonywater]

Hello,

I'm new here but would like to ask a question.

I googled my 25 month old DS not running and as always, google is the enemy. It talked about Duchenne Muscular Dystrophy.

As a result, I checked out Gower's Gait. Although my son does not walk his hands on the floor and up his body, when he gets up he will often put his hand/s on his knees, even briefly.

This freaked me out.

He was told he was hypermobile by an OT at a children's centre, but we've not gone and got this checked out further. I am hypermobile, too.

Could his lack of jumping, his 'not difficulty' getting up but not bouncing up be because of hypermobility and not something as serious as DMD?

He runs and is pretty active, loves being out and about, although he does ask to be carried and is pretty lazy on the stairs - but when around his peers will happil crawl up them.

Thanks for reading.Advice welcome.

Welcome to mn. I dont have any direct experience of DMD but like many of us with children with additional needs your initial thing should be a GP appointment to discuss your concerns and ask for a referral to an appropriate paediatrician. And dont google (although i still do!). And post any queries on these boards. People are very helpful.

Put DMD out of your head - and frankly, Dr. Google is probably your worst enemy. As a parent of a child with a degenerative neuromuscular condition, I can assure you that your son does NOT have DMD. Not jumping and running at 25 months is hardly diagnostic of something so significant. Mild hypermobility or hypotonia is more likely to be the reason your toddler puts his hands on his knees - not a degenerative and fatal in 100% of cases neuromuscular disorder.

Put it out of your head. Stop researching and googling, and enjoy your child.

Thank you BeeMom, and apologies (shamefaced emoticon)

No shame required - googling vague concerns will next to never come up with anything that is not horrifically troubling. If you want to test this theory, choose a couple of vague complaints -muscle aches, insomnia, bruising, irritability, nausea, fatigue - and google them. Doubtless, not far down in the list will be a catastrophic illness.

dietstarts is exactly right - if you are concerned - definitely see your GP, and if necessary a paed or other consultant. Diagnosis of DMD is made by a muscle biopsy - if your concerns are justified and you do get to that point, let me know... I know the journey all too well.

While the internet can be a great resource for medical information, it can also send you on wild goose chases.

You don't do yourself any service, however, worrying yourself about a condition with no treatment and a very grim outcome if it doesn't need to be on the table at all. Many children will put their hands on their knees when getting up - particularly if they are hypermobile - as it helps to stabilise their core when changing position. Hypermobility and hypotonia (low muscle tone) frequently go hand in hand, and as a child grows and gains strength to compensate for the hypermobility, they will need to rely on their auxiliary muscles less and less.

If you feel there is a legitimate concern for a myopathy or dystrophy like DMD, look further into the whole picture of the disease. Does your DS fit anything else that would hint there is a strength problem? Does his head lag if you pull him up by his arms from lying flat on his back? The fact that he is running and taking stairs (even if he is climbing them) is encouraging, but I could be very much wrong.

Because we are living with a terminal neuromuscular diagnosis here, I was too abrupt - we have been going through a tough stretch, and I am not thinking too clearly. Fatigue and stress have that effect on me

I just finished talking a friend "off the ledge" because her 6 month old has GORD. You see - when my DD was 6 months old, she had GORD too... so this friend made the leap that her son MUST have the same disease that my daughter has.

Why? Because she googled it

Hi. i do have some knowledge of DMD and like all conditions not every child follows the exact pattern, in fact in our case (not my son but close realtive), the first indicators were not as you list at all.
I guess what i'm trying to say is all children are different & Dr google is mostly wrong.
Go to your Gp, ask for a further referall and full assessment by a paed physio, although not able to diagnose they are very familiar with a varity of conditions and will recommend further referal if they feel necessary.