Discussions By Condition: I cannot get a diagnosis.

Are all of these symptoms related?

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: graciouslyathome
  • June 7, 2010
  • 08:57 PM

My 3 year old son has or has had the following:

choroid plexus cyst
mongolian spot
sacral dimple
retractile testis
declining neurological function
increasing sensory dysfunction

Right now he has back pain, had a very high fever last week, was twitching last night, and woke up very aggressive today. I cannot seem to get his pediatrician to help me. We are seeing a number of specialists about the different symptoms... but are all of these things related?

Please help me!

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1 Replies:

  • Ive no idea of what your sons issue is but would like to say based on my own experience to get that sacral dimple fully checked out. My youngest daughter was born with a lower back which looked strange to me. Her back had not just the normal appearing dimple just above the butt crack but a second dimple near that one... like two next to one another. From the start it appeared strange and abnormal to me but her pediatritian and the TWO GPs i took her too (cause i was concerned as I believed there was something there was wrong!!), told me not to worry and her back was just looking strange due to her being a breech birth and later on told me it was fine but it still to me looked very wrong and abnormal. It turned out that she had spiral curvature to the degree in which she was incontient (and will be incontient to a degree for life.. she had to wear nappies till she was 12 yrs old but now just wears incontience pads as an adult). i ended up being told after xrays on her back, (xrays were done only after they finally realised she had a loss of sensation.. suddenly at that point they did realise her lower back did look wrong due to sacral dimple), that she had spinal curvature and deformaties of her spine (she's actually missing her cocyx/tail bone). At one point they told me she'd be in a wheel chair for life and that she would never walk (we got told that when she was 2 yrs old and still unable to walk, she couldnt coordinate her legs or crawl). She ended up having to use wheel chair at times throu out her primary school years due to her back!! as she couldnt walk very far.. My child's back was due to caudal regression syndrome which is similar to spina bifida, she also had talipes (club foot). The talipes was very noticable from the start (it was like her foot was on upside down and all twisted). The doctors thou she had a severe birth defect at birth.. i still to this day dont know how they missed the other one for so long.,So anyway my point is.. i hope they've xrayed your sons back. His back could have an issue thou if he's doing things normally, not as bad as my childs back but an issue may still be there and give him back pain.
    taniaaust1 2,267 Replies Flag this Response
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