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Posted by KATE on March 07, 2000 at 15:22:07:

In Reply to: HELP MY SONHAS ( PSEUDO TUMOR)NEED INFORMATION posted by PAUL BARTLETT on March 05, 2000 at 09:24:32:

TO PAUL: MY SON ALSO HAS PSEUDOTUMOR CEREBRI, SINCE HE WAS 13 YEARS OLD, HE IS 16 NOW. IT CAME ON VERY SUDDENLY WITH SEVERE, SEVERE HEADACHES AND VISION PROBLEMS. HE ALSO HAS HAD NUMEROUS SPINAL TAPS TO RELIEVE AND MEASURE THE PRESSURE.
HOWEVER, HIS HEADACHES HAVE NEVER GONE AWAY AND HE IS NOW 16 YEARS OLD. HE HAS HAD SOME RELIEF FROM MEDICATIONS AND BELIEVE IT OR NOT, WE ARE NOW USING ACUPUNCTURE FOR PAIN RELIEF AND IT IS HELPING HIM. MY SON WAS NOT OVERWEIGHT WHEN IT STARTED, HOWEVER, AFTER 3 YEARS OF CONSTANT HEADACHES AND FIGHTING THIS ILLNESS, HE NOW IS OVERWEIGHT AND HAS BATTLED DEPRESSION. HAS YOUR SON SEEN A PEDIATRIC OPTHOMOLOGIST OR NEURO-OPTHOMOLOGIST TO CHECK HIS EYES? IT IS VERY IMPORTANT THAT YOU DO THIS AS SOON AS POSSIBLE, AS THIS DISEASE CAN CAUSE PERMANENT VISION DAMAGE, THE EXTRA FLUID PUTS PRESSURE ON THE OPTIC NERVES OF THE EYES. MANY PATIENTS HAVE HAD SHUNTS PUT IN TO DRAIN THE FLUID OR HAVE HAD EYE
SURGERY TO SAVE VISION. THERE IS A GREAT PSEUDO TUMOR CEREBRI SUPPORT GROUP AND THEY HAVE JUST PUBLISHED A HANDBOOK ON THIS DISEASE, WRITTEN BY PARENTS OF PATIENTS AND PATIENTS WITH THIS DISEASE. THE ADDRESS IS: PSEUDOTUMOR CEREBRI SUPPORT NETWORK, 4916 ST. ANDREWS CIRCLE, WESTERVILLE, OHIO 43082 (614) 794-0442 FAX: (614)
794-1403 PCT@ONELIST.COM, PCT-SUPPORT-GROUP@ONELIST.COM
ALSO, THEY HAVE NEVER BEEN ABLE TO DETERMINE WHAT CAUSED MY SON'S ILLNESS, ALTHOUGH, HE WAS SICK WITH THE EPSTEIN-BARRE VIRUS AND EAR INFECTIONS RIGHT BEFORE HE GOT PSEUDO-TUMOR. I HAVE ALSO READ THAT CERTAIN MEDICATIONS CAN CAUSE THE DISEASE AND VITAMIN A OVERDOSE. THERE IS SO MUCH MORE INFORMATION IN THE HANDBOOK AND CHECKOUT THE E-MAIL ADDRESSES ABOVE, THE SUPPORT GROUP IS VERY HELPFUL. THERE ARE OTHER PARENTS WHO CAN GIVE YOU HELPFUL INFORMATION AND ARE VERY SUPPORTIVE.
I HOPE THIS HELPS YOU. GOOD LUCK. KATE


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