My child and Neurosarcoidosis

Dear Doctors

Could you please help me, my child she is about 9 years old and her doctor suspected that she have Neurosarcoidosis, and I looked in the internet a lot of information but unfortunately little about children that have this disease, and as I understand it's very rare disease for children

The complete story is the following:

Her name is Shoog, she is 9 years old now, one and half year ago she start to have little epilepsy clearly seen in her eyes only, then I took her to the doctor her prescribe for her Topamax, Depakene, and Tegretol. Before three month the doctor change the prescription because her health get worse to



Lamictal 175mg

Kebbra 1000mg



The epilepsy now is some-what better but her general health is very bad, they estimate her case of activity and understanding to be the same with a child of 2 years of age.

Clinical manifestation is,

Speech impairment, actually she can't talk, and speech even one world.

Excessive thirst

Excessive tiredness (fatigue)

Confusion, disorientation

Weakness

Mouth drooping

Difficulty in eating

Loss of memory, judgment, or calculation skills

Psychiatric disturbances

Headache

Dizziness or vertigo



The doctor have done three test of ACE the result as fallow

1-     81

2-     94

3-     101

The doctor suspected that she has Neurosarcoidosis, since the prescript medication dose not have effect, with ACE result and magnetic resonance imaging.

Could you please tell me what should I do? In order to help my doter, my fear that they are experimenting on her and I can't do a lot, how I know that what they say is accurate?



Respectfully yours,



Hakim Albabtain

P.S. Sorry, but my fear that the will consider my child as a laboratory rat.