Where to turn??? — Scope | Disability forum
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Where to turn???

Danniiloumummy23 Member Posts: 2
My little boy 17 months has severe plageocelephacy of the head (very flat on one side and pertrusive on the other. He is severely delayed in development (still like a baby) has no speech only screams, eats 4month baby food, low muscle tone, no feeling on his right side, stRted having absences, sweats badly (which smells yeasty) sleep patten not good, temper (which includes banging his head and he doesn't flinch) we are now been told that he needs a urine test to measure organic acids due to high levels of something in his recent blood tests (he is under 12 diff health professionals) we are adamant that the head is causing all this bit no one seems to listen, how do we go about getting a second opinion off our own back? Sorry if I can't post this on here but I don't know where to turn and am driving my self crazy


  • Rocky
    Rocky Member Posts: 76 Listener
    Hi, sorry you are having such a difficult time and it sounds as if your son is getting very frustrated e.g. head banging.

    It would be interesting to know what the doctors have said to you about his condition and what treatments/therapies he is in receipt of. I am not medically qualified but is sounds as if It could be impairment to the brain or his skull which is putting pressure on the brain that is causing some of these symptoms which is why I am interested in what you have been told so far.

    I presume you are under the overall care of a Consultant Paediatrician (who co-ordinates care with the 12 other health professionals) but if you are not happy you have the right to ask for a second opinion. If you can get to London, it may be helpful if you can get referred for a second opinion to somewhere like Great Ormond Street or the Evalina Children's Hospital (part of Guys Hospital.

    Just ask and be insistent if you get any reluctance but do keep in touch via this Community and let us know more about what you have been told so far.
    Best wishes.
  • janeraca
    janeraca Member Posts: 2
    my son had the same problem with his head. We bought a soft toy snake ( quite thin) and wound it into a shallow coil. At night we put his head in the coil so he couldn't lie on one side. After a couple of weeks his head changed shape! It may be worth a try.
  • Rocky
    Rocky Member Posts: 76 Listener
    Hi, this is a personal opinion but I would be very wary of using a soft toy snake around a young child's head. I feel it could potentially be dangerous if the coil slipped down over a child's mouth or neck. So perhaps not to be recommended.

    It may be better for Danilo's Mum to talk further with her son's neurologist or doctor to see if there is anything they can recommend either in terms of aids or equipment or treatments.
  • janeraca
    janeraca Member Posts: 2
    Hi Rocky
    The snake had the approval of my son's physiotherapist who was so impressed she said she would recommend it to other parents. I sewed the coil into place so the snake couldn't unwind. It was a very shallow coil, but just deep enough to make a cup for the back of my son's head. It was not soggy but quite firm. I'm a very safety conscious parent so would never have put my son at risk.
  • sarahpratten
    sarahpratten Member Posts: 35 Courageous
    Have you seen a cranial osteopath? That would be my first port of call (I recommend Stuart Korth if you are anywhere near Tunbridge Wells or Osteopathic Centre for Children in London).

    Also have you considered The Scotson Technique(TST) - exercises that focus on improving breathing which help with so many other symptoms as well. You have to put a lot of time in but the results are worth it.

    I hope things improve soon.


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