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2 year old undiagnosed CP?

surreylasssurreylass Member Posts: 3 Listener
Hi there
I was not sure where else to ask this really as we are exhausted from a shopping list of tests that our 27 month old has had since January this year.  DS2 cannot weight bear through his heels and has significant tightness in his Achilles tendons bilaterally. He is being treated for toe-walking but really it is toe-cruising as he cannot toe walk independently and one foot does not go flat on the ground.  Tests have come back with everything else okay and now we are waiting to hear from his pediatrician on next steps - likely to be an MRI. He also has a heart murmur and dilated kidneys (since birth).  
My worry is that if it was toe walking alone then everything I have read (and Google diagnosed) suggests toddlers can get their heels down on command and both feet should be effected.  I think he fits the profile for spastic cerebral palsy - anyone heard of a toddler that sounds similar?  I should add that he can bum shuffle which at least keeps him mobile but how long can the doctors leave him like this as surely he cannot go to pre-school as a bum shuffler?  We already get through a new pair of trousers every other day with the holes from bum shuffling so holes in uniform would be costly lol.
I also appreciate I am being impatient but it seems like a lifetime of tests and still no answers.
I hope someone reads this and can suggest anything :-( Thank you

Replies

  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Welcome to the community @surreylass - I hope there will be members along soon to offer their thoughts and experiences!
    Scope
    Senior online community officer
  • htlcyhtlcy Member Posts: 133 Pioneering

    Hi @surreylass , sorry to hear you're having such a rough time. I have spastic CP (hemiplegia, to be precise) which affects my right arm and leg. I apparently bum-shuffled everywhere and didn't start walking for a while. If you're concerned, I would push for further intervention. Mention these symptoms and your own concerns; someone out there somewhere will listen, I promise! The thing with CP is the earlier it's diagnosed, the better the outcome; I had an operation to lengthen my Achilles (which is 'tight', with little flex) and I can walk very well now. I've also had serial casting, and wear rest splints. My arm is affected, too, and I wear splints to help my mobility. I appreciate this is frustrating and it may not be cerebral palsy at all, but I would definitely mention it even to put your mind at rest. I walked 'tippy toes' on my affected foot, and that was one of the main symptoms for me. Let us know how you get on: I'm more than happy to help.

    Heather :)

  • ACPLACPL Member Posts: 4 Listener
    Hi Surreylass, this is a very common complaint I hear from some of my patients. The way you are explaining that he bottom shuffles at such a speed that he makes holes in his trousers , it is unlikely that he has spastic CP . And he is toe cruising is a good news because he is one determined child ! The things that I suggest you look out for are : 1) is he hypersensitive (tactile defensive) to touch especially under his feet ? Like , does he hesitate to walk on the grass , sand , certain rugs ? 
    2) is he hypermobile (double jointed) ? Does he high kneel and able to walk on his knees ? 
    Happy to help you with more answers if I get more information about him . Best wishes . 
  • surreylasssurreylass Member Posts: 3 Listener
    Thank you all for your support and advice.  Noah is not hypersensitive to touch, textures and autism has been ruled out.  The main thing is the contracted heel and it is only on one side - what I have read about idiopathic toe walkers is that both feet are usually effected whereas for Noah it is one leg and I think his gastrosoleus is tight too.  he goes up on his tippy toes to the max but one leg can be 'forced' almost flat bu the other physically cannot without bending his knee.  The other things that have been diagnosed are mild dysmorphic features, plagiocephalus, macrocephaly, low set left ear and wider nasal bridge (although I cannot see it so perhaps I am blinded by mothers love lol).  He wears special boots and night splints daily.  His muscle tone seems fine other than contraction of his Achilles tendon and he is not hypermobile.   

  • CubbyMummyCubbyMummy Member Posts: 2 Listener
    Hi, I am a member of SWAN, for children with un diagnosed genetic conditions.  Maybe you could look them up, My son has dysmorphic features too, and contractures in both ankles, we have had loads of tests, all negative so far.  MRI is the only way to diagnose CP and you'll have to wait for that.  We had it done and it was torture, but the results come through in a few weeks normally.  Waiting is the hardest thing, we've just waited 6 weeks for a muscle biopsy and I almost lost my mind!  Being un diagnosed can be tough. :-(

  • surreylasssurreylass Member Posts: 3 Listener
    Thank you - just to update the MRI came back with "previous brain insult" to front left temporal lobe.  As it is not the PVL area of the brain his neurologist has said that it is not relevant to his contracted muscles.  Our orthopedic consultant managed our expectations the day before this by saying she thought DS had a high functioning cerebral palsy from his results so essentially we are still in a bit of limbo. His symptoms are now:

    ·  a systolic heart murmur.

    · bilateral renal pelvis dilation with urothelial thickening (has had this since birth).  Same paediatrician since birth.

    · Noah has mild dysmorphic features, plagiocephalus, low set left ear and wider nasal bridge.

    · Had serial casting to release tightness in his Achilles tendons bilaterally.  He can now walk un-aided J

    · Noah wears bespoke carbon fiber insoles to prevent contractures and toe walking.  He also is doing a swimming course through portage at the moment which keeps those ankles moving.

    ·  Noah has delayed development in gross motor skills.

    ·   His MRI showed “previous brain insult” to the frontal left lobe of his brain.

    · Incidental finding of spina bifida occulta.

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