Hello, 

I have a child with a diagnosis of cerebral palsy since age 7. She is actually 20 years old now. CP is such a broad spectrum diagnosis and I have never known of a child with a diagnosis of CP that is like my daughter with all the same symptoms. I had a normal prenatal history and there was not any birth trauma. She had high apgar scores at birth, her head circumference at birth was normal (50 percentile) and she went home with me the day she was born. She appeared to be developing normal until she had her first seizure at 10 months old. However, she was always on the late end of meeting her mile stones. She learned to take steps with the help of P/T at age 19 months, but she had to wear a protective helmet, and her speech was severely delayed.  I am wondering if anyone has a child with the following symtoms that my girl has:

Severe speech impairment, but not absence of speech. Speaks in single words with some good articulation and some poor articulation; her vocabulary is limited

Poor oral motor control and infant/toddler

Global developmental delay; Severe intellectual impairment/disability (or "severe mental retardation" as her official medical diagnosis actually reads)

Short attention span

Ataxia/balance disorder; poor coordination; wide based gait with feet apart and arms up and flexed at forearms and wrists; walks with unsteady gait

Poor fine motor skills, but with steady improvement over time- never any regression in any skills

Seizure disorder (mixed generalized epilepsy with history of tonic-clonic and myoclonic seizures and history of status epilepticus (especially with myoclonic seizures with tremulousness). Seizures are rare these days though. But until about age 9 her myoclonus status was extremely difficult to control.

Microcephaly (post natal- her head circumference was normal at birth, but was at 5 percentile by age 2) 

Sleep disturbance (she will awake often between 1:30 and 4:30 a.m. and stay awake without napping the next day and will often awake like this for several nights in a row. This sleep disturbance pattern has been life long. Other times she sleeps just fine though, so it's not every night that she awakes like this, but she only sleeps about 5 to 6 hours at night max. Sometimes she takes a nap the next day. 

Drooling excessively and frequently

She has mild scoliosis (2%) and mild strabismus in right eye

She is generally happy and has always been very easily excitable and easily brought to laughter- she has always gotten extremely excited and has always had bursts of laughter that was very easily provoked; she flaps her hands when extremely excited and her laughter can be contagious

She can be hyper-motoric

She is very social with social seeking personality; will hug strangers if allowed 

Motivated by food; perseveres over food often

She has a fascination with crinkly plastic and/or paper items (she likes to twist them as this seems to soothe her)
She had a fascination with water/baths when she was little

She is still not potty trained at age 20, only habit trained. She cannot dress or bath herself and can never be left alone unsupervised for her own safety

She can get frustrated easily and had a history of self-injurious behaviors when she was little, but for the most part she is very happy and lovable

That's mainly it...

Anyway, just wondering if anyone has a child or knows a child who has CP with this same array of symptoms? I have pursued genetic testing because I have never known of another child with CP that has all the same symptoms, but the genetic testing hasn't revealed a syndrome, so I am hoping there are others with CP that have all these same symptoms... I have always told myself that she just can't be the ONLY one... somewhere out there I believe there just has to be someone else.

Thank you in advance for your help,

LaRae, Melanie's mom.




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