Thank You!

[nevergiveup]

Today, I am hopeful and optimistic about what the future holds for our children. Although my dd still struggles with this disease, she is much improved. I am so thankful to Diana whom talked with me at my dd's most desperate time and got us medical help with Dr. L. Plus Tmom, SFmom, Peglem, Melanie, Ellen, Elizabeth and Keith,Cindy and Jackie, Vicki,mommd, Shaesmom, Shannontown, and many others whom after reading your posts daily inspired me to keep searching. And thanks to Buster and Eamom for all the science which gave me the justification to push harder and challenge my physicians to fight harder for my dd. I am inspired and hopeful because of all the parents efforts whom have changed the course and helped to move the medical community forward so our children will receive treatment and this illness will start to be treated as an autoimmune disease. With the white paper and Name Change soon to be released, this will allow for many children to finally get some treatment and also may redirect some of the kids into rheumotology and immunology so that further progress and drugs will be considered. All of this awareness will change the outcome for many. Its amazing what our Pandas docs and all of these parents have accomplished. For all the parents out there whom were belittled, insulted and sometimes attacked by their neurologists or pediatricians becuz you knew this was treatable and an autoimmune illness, I understand. And it will be hard to watch those same docs now use the new "named" illness in order to avoid conflict with past patients whom clearly asked about Pandas and were told it didn't exist. In my case, I was told countless times to "Get off the internet, everything your reading has already been disproven". In some ways it makes u wonder if the major players couldn't come on board until they could save face. How will they face that same mother they rolled their eyes at 1 year ago at the suggestion of Pandas. So Progress in medicine is Name Changing, apparently this is a pretty popular thing amongst the medical community. Its part of the "spin" to save their professionalism. Ok I will go with whatever it takes to find treatment and help for our children. This illness is debilitating and serious and needs to be treated as such. I know now that treatment is available and will continue to be for our children, this struggle and fear I have lived with (nontreatment) is now over, I am sleeping better at night just knowing this. Now I can concentrate more effort on enjoying my dd and our lives, even though I know now a whole new challenge lays ahead, more research and finding better drugs and a cure, the really hard work has been done by Diana and her coworkers, and I just needed to pause today to Thank them and say Wow, what an amazing thing u have done for so many! Oh and anyone from Cinci area, if your child has pandas go see the immunologists in the Bone Marrow Transp-Hemoc-Oncol Clinic, they are the best!(There are two divisions of immunology, only one treats) Neurology does not treat and for some odd reason does not refer either?

[bgbarnes]

Wonderful post! I am optimistic too!!!!

Brandy

[thereishope]

I love reading inspiring posts. Thank you! I totally agree with the name change and getting past naysayers on board now by being able to "save face". Gilbert is doing a PANDAS presentation at the Univ of Cincinnati in August. I contacted the coordinator to try to get in and you have to be a student there. Anyone a student at the Univ of Cincinnati? I would love to know what he says. I wanted so bad to be able to sit in that audience and speak up. The day will come, it just isn't the right time yet perhaps.

Edited July 31, 2010 by Vickie

[philamom]

I agree...beautiful post. I am also forever grateful for all the help I received from this forum (amazing Mothers and Dads). I will Never, Ever forget Diana who led me to the right path instead of psychotherapy drugs. <HUGS>

[nevergiveup]

Vicki,

 

How can he present on something he will not treat! I will see if I can get tickets, contact u later with details,

 

I love reading inspiring posts. Thank you! I totally agree with the name change and getting past naysayers on board now by being able to "save face". Gilbert is doing a PANDAS presentation at the Univ of Cincinnati in August. I contacted the coordinator to try to get in and you have to be a student there. Anyone a student at the Univ of Cincinnati? I would love to know what he says. I wanted so bad to be able to sit in that audience and speak up. The day will come, it just isn't the right time yet perhaps.

[tpotter]

Wonderful post. Thank you for saying everything you have said. It is so inspiring.

[JAG10]

Well said!

 

With regard to the name change...... we will have to let go of our panda pix/cracks.......

 

If they go with PAN Complex......... perhaps we too will have to be flexible and change to a cartoon of a mother hitting her child's idiot doctor over the head with a PAN and a bubble saying "I told you so!!!!!"

[Johnsmom]

Ditto!

 

Wonderful post. Thank you for saying everything you have said. It is so inspiring.