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Nurse Susan
Nurse Susan, Nurse (RN)
Category: Health
Satisfied Customers: 1084
Experience:  RN, BSN, MSN-ED, Nurse Educator whose passion is helping people understand their health and wellness
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My son has a history of neurological issues He has a new doctor who is interested in the fact that he has white eyelashes on one side and a few light colored spots
s of hair througout his head The doctor is just an internist not a neurologist but feels it might have significance Justin has never been able to be completely figured out by doctors He had poor neuro responses as a newborn He had hearing problems that spontaneously resolved around age 5 He began having grand mal seizures that resolved around age 14 Hetested ataround
90IQ at age8 50 at age12 and about 60 age 18. The tests show extreme inconsistancies and always difficult to interpret. He also had severe ADHD. He is 18 now He has significant bouts of depression couled with a very impulsive personality He has one suicide attempt that resulted in2 days in ICU. I'm wondering if someone seeing all his history together if it is consistant with any specific syndrome. I also forgot his most significant disability is speach and language. He did not speak until he was 4 and then it unintellible to everyone else but me until about age 7. He learned to read and he was at about the second grade level and then at about age 10 he lost that ability At this time he does not read even at akindergarten level. He has ataxia.
Submitted: 2 years ago.
Category: Health
Expert:  Nurse Susan replied 2 years ago.
HelloCustomer

It must be so hard to see your sons struggles...my sympathies are with you. I am going to try to help here...cant promise anything but I can at least make the attempt to help point you in the right direction. I have a few questions to ask you...you mention he has had tests, IQ tests. Has he had medical tests? MRIs of the brain, specifically? If so, what did it show? Did he have any genetic testing done?

Thanks for elaborating,
Sincerely,
Susan
Customer: replied 2 years ago.
he has had MRIs that show damage in the speach and language center. They tried to map his seizure but the results were always inconclusive He was tested fragilex These results confused the neurologist because the numbers were much higher than normal but did not meet the criteria for fragile x
Expert:  Nurse Susan replied 2 years ago.
HelloCustomer

No one can state anything with any certainty online, but here is my best most informed guess on the matter. I think your doctor is interested in the depigmented areas because they can indicate some conditions. Specifically, cafe au lait spots are whitish to brownish areas, and their presence can indicate disorders such as tuberous sclerosis. Tuberous sclerosis is also associated with delays and siezures.

More information on this...and how it can be assessed and tested...is here: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001791/

All doctors (and nurses) are not all equally bright and talented...there is nothing wrong with seeking a second or even a third opinion. But I would ask your own doctor specifically if he is thinking along these lines (tuberous sclerosis); there are pediatricians who specialize in genetic disorders (tuberous sclerosis is a genetic defect), a referral to one may be helpful.

I hope I was able to help you with this, and I wish you and your son the best in this year to come.
Sincerely,
Susan
Nurse Susan, Nurse (RN)
Category: Health
Satisfied Customers: 1084
Experience: RN, BSN, MSN-ED, Nurse Educator whose passion is helping people understand their health and wellness
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