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Newly diagnosed

Pittsburgh Message
26 Jul 2011, 03:16 AM

Hello, A few days ago my nephew (3yrs old) was diagnosed with ROHHAD and we are overcome with the lack of information we have been able to gain thus far. We are hping to be able to get information on the dissorder and interact with people wo have experience with the dissorder. If anyone is able to help us we would very much appriciate it. My nephew it still in th PICU at childrens and it is a very scary time for all of us. Please help. Thank you, Brian
jandm1102 Message
26 Jul 2011, 04:42 AM

Hi Brian, i am a mom whos daughter has ROHHAD diagnosed in jan of 2010 after yaers of fighting with NY drs, Drs in Virginia and childrens hosp phildelphia for a diagnosis. its not an easy diagnosis to come by and not an easy one to deal with. after diagnosis i found a support group on facebook- just search Rohhad and youll find it. i meet a mom when i went to chicago for studies and diagnosis in jan 2010 with my daughter. the support group is great becouse of other families with similar problems and different ways we have approached the problem. childrens hospital chicago (CAMP) Dr. weismeier is doing a clinical study which we are part of. hope this is helpfull any questions i may be able to help with im happy to. send me a message and ill answer what i can or send you info on others in the same situation or my number if it will help. YOUR NOT ALONE it just seems that way becouse their are so few of us.. sorry to add you to our list but will help where i can
Pittsburgh Message
28 Jul 2011, 03:50 AM

Thank you so very much! My nephew received a blood transfusion last night in order to help his O2 saturation improve, it is working thus far and he has stabilized. CHP Dr.'s are working very hard on a treatment plan. I will share this info with my family (his parents) and help move them towards getting the support and knowlege they need. I will be sure to contact you soon and "pick your brain" for some help. Again Thank you so much for reaching out to help! It's a scary time and it's nice to see that others care enough to help. God bless
Pittsburgh Message
5 Aug 2011, 02:55 PM

JandM, JI just wanted to update you on the situation with Marky. They found a mass on his adreanal gland yesterday and have stabilized him. He is on his way to CHI to be seen by the team out there that are more versed on ROHHAD. If you or any one you know can help in the expences for Marky's trip please send them to this site. "your link text": With 7 children to take care of his mom and dad need all the support they can get. Once again thank you for your help and support, I do believe that it help make a difference in his treatment. ~Brian