Twitches and prickly feelings

[Calro]

In March 1999 my son then 3 years old started with prickly sensations in his arms and eyes. These sensations continued into other parts ie. face and shoulders.
In April 1999 he had a CT Scan and lumber puncture, both normal.
In May 1999 he had an EEG, also normal.
Since this date the prickly sensations have continued throughout his body including legs. In November 1999 muscle/nerve twitches first noticed. These are present throughout his body although only more obvious ones visually noticed. Others can be felt when my son is sat on my lap. Sleep myoclonus more exagerated.
We first visited the Neurologist in  November 1999, he ordered MRI Scan of head and neck and blood tests for copper and cheroplasma levels. All returned normal.
Throughout 2000 the twitches became more noticable also visual disturbances, foggy eyes and 'not being able to see properly'.
At present prickly sensation still evident all over body with occasional pain in eyes and head.
We have seen a different Neurologist on several occasions over the last year who tells us that it is stress. He did not conduct any further investigations considering that the condition had changed and in our opinion was deteriating since those first investigations. Could these tests have been done too early in the course of this problem to detect any abnormalities.
We do not feel happy with this diagnosis as we see our child suffering and the condition progressing.Your advise would be most helpful as we are extremely worried that there is something awful happening to our son and that it is not being recognised.

[CCF-Neuro-M.D.-JT]

I certainly understand your growing concern with your son's progression of the symptoms and its cause being attributed to "stress." I don't want to unnecessarily alarm you, but I agree that your son definitely needs to be looked at more closely and soon. First, with visual changes, he absolutely needs to see a pediatric ophthalmologist (not optometrist) for a formal exam. Second, you're right about the earliness of the tests, not that it was done too soon, but that it's very hard to interpret a young child's MRI of the brain. Although we have many talented neuroradiologists here at the clinic, we have a special one just for pediatric cases. It should be repeated with contrast and possibly metabolic SPECT (talk to your doc about this) in light of his progression. Third, continuous video-EEG monitoring in a pediatric epilepsy unit would be important as he has twitches and may have seizures.Fourth, he may need an extensive metabolic workup to look at mitchondrial and enzyme disorders.

But the most important advice I  could give you is to get a second opinion. Here at the Cleveland CLinic we have several outstanding pediatric neurologists: Bruce Cohen, Neil Freidman, Gerald Erenberg, and David Rothner as well as availability of services.
Now it's quite possible that it could be an early form of migraine headache, but with his continuing symptoms we should make sure that it's nothing else. I wish you and your son the best of luck.

[Reenie]

I think I've heard it all now -- so the doctors are blaming your THREE YEAR OLD SON'S symptoms on stress???? PLEASE!!!!  I want to tell you I am 40 years old and have had the very same symptoms and others for 6 years now: twitches, prickly sensations, visual problems.  Ideas that have been tossed about:  Lyme disease, post-infectious autoimmune syndrome, porphyria, mitochondrial disease, chronic viral infection of some unknown sort.  If you want to e-mail with me my name is Maureen and my e-mail is ***@****
My heart breaks to think of a three year old with this.

[even26]

A related discussion, trying to figure this out was started.