Chance's Mito Page

---

Chance Updates

---

Test Results/Diagnosis:
07/98     Diagnosed with Expressive speech delay and articulation disorder, moderate
03/99     Diagnosed with Asperger's Syndrome by Developmental Pediatrician
06/99     Diagnosed with moderate Fine motor delays, Sensory Integration Dysfunction, and
                 Central  Auditory Processing Disorder
07/99     Diagnosed with Asperger's Syndrome by ISD (autism specialist and clinical psychologist)
               Diagnosed with mild proximal hypotonia and weakness by pediatric neurologist
08/99     Basic Chromosome testing, normal
09/99     Sleep deprived EEG, normal
11/99     MRI shows a congenital abnormality of the hippocampus and parahippocampal gyrus
01/00     24 hour EEG, normal
05/00     Neuropsychological evaluation found lack of hemispheric dominance, memory and recall problems,
                    symptoms of neurologic dysfunction that were not explained by other  diagnosis, high risk for dyslexia,
                 dysgraphia and other learning disabilities, a suspicion of something metabolic, rather than structural
                    going on
06/00     Diagnosed with Complex Partial Seizures by Pediatric Neuro-Epileptologist, began Tegretol
            Drop Seizures at first increase of Tegretol (from 100mg to 200mg) that subsided with additional increase
                    of 50mgs
08/00     Changed medication to Carbatrol due to lethargy brought on by Tegretol
               Breakthrough seizures noted and Carbatrol is increased
10/00     Diagnosed with Central Auditory Processing Disorder by Easter Seals Audiologist and Speech Language
                 Pathologist
11/00     Substantial neurological regression noted for reasons unknown. Suspect possible increase in seizures
                    or reaction to the Carbatrol
            Lamictal begins to be introduced and Carbatrol reduced
12/00     Fragile X testing done - Negative
               New Neurologist seen primarily to address progression of tics, as well as the other issues going on.
                    Suspicion is that Tic Disorder-NOS diagnosis has progressed to  Tourette's, and that OCD appears
                    to be playing a role in the current issues, as well as possibly psychosis. Recommends starting an
                    anti-psychotic medication once the siezure medication is changed over.
01/01     New pediatrician consulted and referrals are made to Cleveland Clinic for mitochondrial testing.
            Coenzyme Q10 is begun at 150mgs/day
                Fully changed over from Carbatrol to Lamictal
02/01     Cleveland neuro is seen and testing for a mitchondrial disease is begun including: blood/urine, Echo
                 and EKG for heart function, Opthamological exam, and skin biopsy.  Heart and eye testing normal.
03/01      Local neuro recommends an increase in Lamictal for breakthrough seizures, and appointments with
                    both a GI doctor as well as, an allergist to address issues in both these areas.
                Increased Lamictal 25mgs (75mgs am, 100mgs pm)
04/01     Results from testing in Cleveland are an increase in Lactic Acid and an over-excreetion of Carnitine in
                    the urine, leading towards a blood carnitine deficiency.  Based on this and test results from Madison's
                    skin biopsy, a diagnosis is made of Mitochondrial Disease, unspecified.  Further testing is ordered on
                    the skin biopsy.  Recommendations made to begin Carnitor and repeat Lactic Acid testing.
                 Lamictal is increased another 25mgs (100mgs am, 100mgs pm)
              Carnitor is introduced at 90mgs 3 times a day
                 GI doctor seen and a diagnosis of Irritable Bowel Syndrome is made. Recommendations are for Fiber
                    wafers to be introduced, allergy testing to be completed, and limiting time on the commode due to
                    suspected OCD issues being involved with the lengthy time he is spending there
                 Allergist seen and he is begun on Nasocort to deal with nasal issues, and an elimination diet is
                    recommended for the summer time to determine specific food allergens

Medications:
11/99    Began Prozac(10 mg am) for anxiety
04/00    Weaned off Prozac/began Zoloft (25 mg am) for anxiety/taken off Zoloft after three weeks because of
                wetting accidents that began one week after starting it(suspect seizures as the cause)
06/00    Began Tegretol to treat seizures-slowly started on it, 100mgs increase a week for four weeks, topping
                out at 400mgs (200mg am, 200mg pm).  Seems to be having some effect as wetting accidents
                ceased one week into the Tegretol
08/00    Switched from Tegretol to Carbatrol (200mg am, 200mg pm) due to excessive tiredness on the Tegretol
              Carbatrol is increased to 500mgs per day (200mg am, 300mg pm) due to break through seizures
11/00    Begin weaning off Carbatrol (dropped to 200mg am, 200mg pm) due to continued excessive tiredness
                and began weaning on to Lamictal (beginning at 15mgs per day (5mg am, 10mg pm) and increasing
                to 150mgs per day (50mg am, 100mg pm) over a 1 1/2 month period of time)
01/01    Begin Coenzyme Q10 at 150mgs (60mgs am, 30mgs noon, 30mgs dinner time, 30mgs pm)
              Full dose of Lamictal reached, 150mgs (50mgs am, 100mgs pm)
03/01    Lamictal increase 25mgs (75mgs am, 100mgs pm)
04/01    Lamictal increase 25mgs  (100mgs am, 100mgs pm)
              Carnitor introduced at 90mgs 3x a day
10/01    Lamictal increase 25mgs (100mgs am, 125mgs pm)

Symptoms:
*Changes noted since January 2000
**Changes noted since November 2000

Neurological
Complex Partial Seizures
Abnormally shaped and positioned left hippocampus and parahippocampal gyrus
Evidence from testing of primarily left hemisphere issues, but also some right hemisphere issues
Suspicion by neuropsych that right hemisphere functions are being controlled in the left hemisphere
Rapid Repetitive Movements, abnormal*
Mirror Imaging, abnormal*
Synkinesis
Deep Tendon Reflexes 1+ to 2
Lack of hemispheric dominance/hand dominance
Memory problems
Chin tap reflex, abnormal*
Difficulty with spontaneously crossing midline
Mild to moderate global developmental delays
Dramatic increase in tics/movements to 7-8 of them, sometimes all simultaneously occurring**
Spells of disorientation and confusion**
Intense spells of hyperactivity and impulsivity**
Intensified obsessive/compulsive behavior**
Unable to answer yes/no questions**
Dramatic change in personality**

Physical
Wetting accidents (since 4/5/00)
Motor Tics, in addition to already diagnosed verbal tics*
Self stimulatory behavior*
Some days of very high activity levels, uncontrollable outbursts
Nervous stomach
Spells of both diarrhea and constipation, consistently very large movements
98+% head circumference, non familial
Abnormal dentition

Verbal
Expressive Speech and articulation delays, moderate initially, now mild with therapy
Semantic/pragmatic issues
Word Retrieval problems*
Sentence structure problems*
Communication, particularly with adults was a strength, now is virtually non-functional communication-wise**
Articulation is off, and he is talking immaturely now**

Gross/Fine Motor
Clumsy* (dramatically increased**)
Regression in self help skills like:*
     buttoning and zipping own pants (more than 50% of the time)
     putting on own socks (more than 90% of the time)
     wiping after bowel movement (more than 50% of the time)
     brushing teeth and hair unassisted
*All of these were almost, if not completely, mastered as of January 2000

Emotional*
Increase in:
   Melt downs
   Anger/aggression
   Frustration
   High anxiety
   Impulsivity
   Perserverations:
      bugs
      frogs
      vegetarian
   Obsessive-compulsive activities
Unable to go to any other room in the house unless accompanied by someone**

Academic*
More obvious difficulties with learning since January 2000
Unable to recognize and replicate work that has previously been done and mastered
Sound blending/Symbol recognition
More than moderately delayed across the board academically according to his teacher, while
    academic testing with neuropsych has him mildly delayed in some areas, average in others.
    Definite Learning disabilities though.

Social
Increased difficulties with relating to peers*
Inappropriate, odd laugh*
Increased difficulty with relating to adults**

Sensory Integration*
Tactile:
     aggressive response to light touch
     intense input to all areas of the body
     issues with touching things and having dirt on hands
     inappropriate response to kisses (wiping them off more)
Vestibular:
     in response to rotations, Post Rotary Nystagmus has gone from 1-2 eye clicks
         afterwards, to none again
     need for spinning and swinging motions
     need for more intense movement activities
Proprioceptive:
     need for jumping and more jarring impacts to joints
     less awareness of body positioning and limb location
Auditory:
     inability to filter out other sounds and concentrate on one
     increased confusion about what’s being said to him, less able to follow more than simple
      auditory commands
     increased auditory processing difficulties

[Page 2:  1993-1998: Birth to 5]

---

Chance Updates