to whom this may concern.
my son is five years old...at age 3 months he began to have infantile spasm type jackknifing seizures. these ceased by age 1 year. he has had other seizures since including fixed gaze(until age 2) and febrile, (every time he gets a fever over 101)
an mri given at about 6 months initially revealed a global decrease in white matter with 'bright spot' at the rear (occipital) sinus and other visualized anomalies. he has had one follow up mri done which was not remarkably different from the initial mri
.i am his mother by adoption, his birth mother was my daughter, she took many drugs while he was in utero. he was born premature and 4 lbs 11 oz by emergency ceasarian section due to abrupted placenta and trauma. he has been diagnosed with a slight spastic diplegia/cerebral palsy and pdd/nos high functioning autism. he has the usually associated 'meltdowns'. he is very intelligent. he no longer has any communication issues generally. socially he is severely inept and doesn't go to school because of this in part.
he had severe sensory integration disorder issues which with therapeutic measures have almost all been resolved. he still wears diapers, and doesn't appear to be able to know the difference between have to go...am going...or have gone.
he also has juvenile polyposis and a lack of appetite that necessitates supplementing nearly 75 to 80 % of his nutrition with pediasure drinks. these problems are long standing...really all his life for the appetite one...he has had three surgeries that have removed more than 12 hamartomous type polyps from through out the whole length of his colon.
he is a beautiful boy, who also seems to be gender confused and has tried to get rid of his penis, until i told him that when he's old enough to get a tattoo, if he still feels like god got it wrong to make him a boy's body, a doctor can help.
he is interesting and intelligent...learned to talk by echoing phrases from movie dialogue...i love him with all of me.
lately(for about two weeks daily) he has had bad headaches that don't resolve with over the counter meds. he has also undergone a change in behaviour, and mood...altho he has always had the classic autism 'meltdowns', now he gets exceedingly sad, almost suicidal...and is lethargic, doesn't play much, has difficulty focusing on lessons or just drawing which used to be a passion for him.
i am worried because the neurologist that used to see him at ucsf, a doctor Scherr, told me that these are things to look out for, so i am having his primary care doctor schedule another follow up mri...i would pay a professional to read it and allay my fears, if i knew of a good one.
since moving to pensacola, florida area i am not pleased with the medicaid available neurologist...
please help by suggesting a pediatric neurologist to whom i could send the mri study for review...also, any reading materials on any of the mentioned disorders with regard to his neurological conditions that you could recommend would be appreciated.
i thank you in advance of your assistance
I am so sorry to hear both u and ur son are having to deal with all these issues.I saw a ABC special and in reading what u wrote, made me think of it....I copied and pasted the info from the web.It can not resolve all the issues he has, but may help with the depression.
I pray someone in the forum will have more info for u.
ABC News: Born With the Wrong Body
Apr 25, 2007 ... "We were getting dressed, and he wanted to wear a dress. ... Transgender Children: Frequently Asked Questions · What Is Gender Identity ...
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