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"Unilateral" Leukoencephalopathy - progressing?
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Hello,
My 11 year old son has been diagnosed with Unilateral Leukoencephalopathy with abnormal white matter signal and lacunes, with unknown etiology. In previous MRI and SPECT images, only the right hemisphere has been effected. Now, we do suspect some possible progression into the left hemisphere as well. His Neuorlogist has directed to go online to find support and help for my son with this illness, and so here I am, seeking any iformation that you could provide.
I have put together a small web site, listing his symptoms, along with some of his test results, and afew of his most current MRI images, which have not been read or dx.'ed at this time. I am seeking information regarding if there is any lesion or abnormalities within his left hemisphere, as is suspected. Could you please take a look at this web site?
I have also listed this site in my profile and am attaching images as well.
Any opinions, advice or any information what so ever is highly appreciated. I thank you for all your time and consideration.
Sincerely,
Carla D. Clark
Answer:
"Unilateral" Leukoencephalopathy - progressing?
Hi Seeas, thanks for your question. Please give me a complete history starting from family history (health problems in the family - parents, grandparents, siblings...), and your son's history starting from pregnancy, birth, growth and development, previous illnesses, trauma (details of the bicycle accident etc), infections, vaccinations, medication, allergies, exposures, detailed history of symptoms (from the beginning), also the doctor's and neurologists' reports and notes, as well as lab test results, geographical location, living conditions, the whole story. You can send all that to me confidentially via e-mail instead of posting it here. I will then post some of it, along with my answer, after editing it at my discretion. Once I have all this information, I'll look into this, but of course I cannot promise that I can provide anything new - you son has been examined by the proper specialists, and I am not a neurologist (I am a neurosurgeon and as such far less educated in complex neurological diseases such as this one) - but I'll try to give you as much information as I can.
Answer:
"Unilateral" Leukoencephalopathy - progressing?
Thank you so much for all your reply. It is greatly appreciated, as this has been a long haul. I have all of the family history, previous medical exams, lab reports, etc. on disk and will email them to you. Feel free to post or otherwise distribute the information.
As to my original question, I found out from his Neurologist today that the lesion has indeed progressed, more changes cystic structure than in actual location, with a increase in the right partial lobe. These cysts are benign, though I'm not actually sure WHAT they are. I was told that we need to watch these cystic changes due to the increased possibility of intracranial pressure, and in which case we would be referred to the Neurosurgeon. What type of procedure is used to relieve intracranial pressure? What are the symptoms of this pressure? (my son has been having some "blank outs" and periods where he suddenly "falls asleep" for seconds at a time, he is sometimes "heavy headed" and is dizzy almost all of the time) We are now scheduling a PET scan (this will be his first) to find out what it may reveal.
I will get the information you inquired about in order and get it sent to you within a few days. Thank you for all your time & consideration. Any information that you may be able to provide is most appreciated.
Sincerely,
Seeas