If you want to read the article yourself...check out the following link...Even mentions the Tanne family! (Although they still mention that awful "weight" word as being the cause of the disease...dislike!)

http://www.dispatch.com/live/content/local_news/stories/2010/04/29/childrens-starts-clinic-for-painful-disorder.html

ty monkeymum i am awaiting the chari episode on house to show my family how big all this brain stuff is but the fact there is a special wing dedicated to this has opened some of there eyes

This is good news....so little the DRs appreciate the pain. Caiti and I requested all of her records from the hospital, and the number of times the DRs in ER said she 'looked fine' just blew us away. One DR actually wrote on her chart the she had a 'personality disorder' because of the way she was acting I guess. Maybe it's tough to come across as 'normal' when it feels like your head is gong to blow off.

I am over joyed to see they are doing something for these children. I can't imagine being the parent of a child that had an illness I couldn't comprehend. This is great news for these families.
No doubt there will be more research done due to this special wing.

Thank you for sharing this with us. I hope the few members here for their children see this.

Is this the same thing? Here is a youtube video about it.

http://www.youtube.com/watch?v=V6W848ZqRhs

Yep...this is the same thing! LOL! Judie, I am so sorry that you and your daughter were treated so poorly for so long by the medical community. I've no doubt that many here can share similar stories...myself included. It took many years before my diagnosis was finally made. I had been told everything from "It's all in your head" (Yes... actually, it is!) to being diagnosed as bipolar and placed on a good deal of psychotropic meds that only made me feel worse. In fact, it was most likely one of those meds...a drug called Seroquel that I believe may have caused my IIH. This drug has been linked to diabetes as it causes extreme weight gain and I would notice that when I took the drug the "whooshing" in my ear would worsen and pressures would rise. I have not been on any psych meds for two years now...and guess what??? I'M NOT CRAZY!!! In fact, now that doctors know my diagnosis they are actually apologizing to me for telling me I was bipolar in the first place. Now that I've said that, let me also say that bipolar illness, depression, etc. are serious chemical imbalances and I don't believe that those who have it are crazy...it is a disease like any other. Believe me when I say that after being treated very poorly by the medical community when they thought I was bipolar, has really opened my eyes to the way the mentally ill are treated as a whole. I will say though, that one has to wonder what all the pressure that has put on our brains subjects us to. I'm certain that my hormonal fluctuations and missed periods are due to high pressure...so, could it not also stand true that the pressure could cause emotional imbalances as well?

I digress.... Point is that hopefully, with these new strides in the treatment of IIH future generations won't have to suffer the poor treatment that we have. Best part is that the medical community is beginning with the smallest of victims...our children. Thank God for small miracles!

Much love,

MM3 (Khrystine)

Hi everyone. My son was diagnoised with pseudotumor cerebri in feb. 2011. He is being seen at the pseudotumor cerebri clinic at Nationwide Children's Hospital.
I'm looking to hook up with other parents who have kids with PTC. I would like for us to start a support group.
Its TOUGH. I would much rather it be me that had this then my young son. Before his LP surgery he was terrified asking me 'why is this happening to me momma???' BROKE my heart. :*(

hey mm3, thanks for sharing. That is very cool.