Discussions By Condition: I cannot get a diagnosis.

5 Year old son 7 months on and still no diagnosis

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Anonymous
  • July 23, 2010
  • 07:17 PM

Help. My son went from being a happy energetic normal 4 year old in to being very sleepy (18 + hours a day), agressive, with lack of co-ordination literally over night. this all started in Mid Feb this year, to date he has had a lumbar puncture, cat scan, mri, eeg, multi latency sleep test and more blood tests than I care to think about and the so far the only outcome we have had is since his lumbar puncture when thr hospital knocked him out he now walks around with his tounge hanging out and lots of spots/lumps on the back of his tongue. The consultants will not look at anything until they can rule narcalpsy out which we are sure he does not have as he knows when he is sleepy, he is confused when he wakes up and his short term memory is really bad.

PLEASE HELP has anyone got any ideas????????

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6 Replies:

  • That doesnt sound like narcalpsy to me either. I hope it isnt what im going to suggest, his symptoms right now are not enough for this diagnoses and its not presenting in him how ive heard it usually presents in children .. but it could be chronic fatigue immunity dysfunction sydrome (CFIDS). Ive heard about children as young as 2 or 3 getting this.. but it is extremely rare in a child that age. CFIDS is the most common cause of long term school absentism in children. Take a note of my suggestion but put it aside for now unless he develops far more symptoms. The aggression may be just cause he's feeling so so tired eg how you may feel if you went 24 hrs or more without any sleep.
    taniaaust1 2267 Replies Flag this Response
  • HIIt looks like Hypothyroidism or B12 deficiency .... Did they test it?Can describe his tongue?
    Anonymous 42789 Replies Flag this Response
  • HIIt looks like Hypothyroidism or B12 deficiency .... Did they test it?Can describe his tongue?Hi,His tongue is really lumpy at the back and sometimes has a slight blueish tinge to it. I believe they have tested for B12 deficiency as I have that and when I suggested it they said it was not that. Looking at the symptoms I don't think it is Hypothroidism but will ask the consultant this week when I finally get to speak to him.Thank you.:confused:
    caz4965 5 Replies Flag this Response
  • Hi,His tongue is really lumpy at the back and sometimes has a slight blueish tinge to it. I believe they have tested for B12 deficiency as I have that and when I suggested it they said it was not that. Looking at the symptoms I don't think it is Hypothroidism but will ask the consultant this week when I finally get to speak to him.Thank you.:confused:Or Thiamine deficiency ...
    Anonymous 42789 Replies Flag this Response
  • Or Thiamine deficiency ... Really annoyed now as we have now not been given an appointment for the consultant till mid september so will not find out the results of the multi latency sleep test which was done last week and that means it will be longer before they start to investigate other possible reasons for my son being like he is.
    caz4965 5 Replies Flag this Response
  • Really annoyed now as we have now not been given an appointment for the consultant till mid september so will not find out the results of the multi latency sleep test which was done last week and that means it will be longer before they start to investigate other possible reasons for my son being like he is. Wow that is very bad, something obviously is quite wrong.. can you take him to a different, better doctor.
    taniaaust1 2267 Replies Flag this Response
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