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Hi.  My name is Mark Perrotte.  I live in Desert Hot Springs, Ca and have an 8 year old son with Duchennes.   I have been very happy with the school that he attends, but am very upset with the lack of quality healthcare and resources.  Loma Linda Medical Center misdiagnosed my son with Rhabdomyosis in 2005, and now my attending Neurologist doesn't even examine my son.   Fortunately, I was just approved to go to O.C. or L.A County Children's Hospital.

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Hi Mark,

We live not far from you, Riverside.  Our son is 13 and we have another son (12), not duchenne.  We've also had lack-luster DMD care at LLU and subsequently travel, to Columbus Ohio for everything with the exception of some trips to UC Davis for the (heart meds) clinical trial he's in.  Feel free to contact us if we can be of any help to you guys.  Or if you'd like to meet up sometime.

cheryl

Hi Cheryl.  It is great to hear that I am not the only dissappointed with Loma Linda.  I am basically upset with almost every service provided here in California.  Its crazy.  Thats great that you take your son back east, believe me the care is much more caring.  I travel through Riverside from time to time and would love to meet up sometime.  Are you boys attending camp?  I am also having problems with the Healthcare Coordinator there..lol.  I know I am the common denominator, but I just hold people in their positions to a high standard.  Our kids are not numbers, they are little guys who need compassion.  If you have a facebook, please look me up..Mark Perrotte...and also check out my sons page..LIVING WITH DUCHENNES...its my outlet so to speak.  Being a single dad has made dealing with things tough, because their mom and I don't have the same passion in fighting this illness.  Once again.thank you..BTW...What do you think about UCLA...I heard they are starting to try new things there?

Mark, You  might want to check out the clinic at UCLA. We are in the Long Beach area and went there for the first time in December. It was a bit overwhelming for us since we have done things a bit differently up until now. We did come away with a lot of information. They are really working at building up a great multidisciplinary clinic. Our son will be 21 this Friday and was diagnosed when he was 9.

http://www.cdmd.ucla.edu/

Thank you Susan.  I continue to hear UCLA.  I think I may contact them and find out if I can schedule an appointment with them.  I appreciate you responding.  Mark

Susan Rathfelder said:

Mark, You  might want to check out the clinic at UCLA. We are in the Long Beach area and went there for the first time in December. It was a bit overwhelming for us since we have done things a bit differently up until now. We did come away with a lot of information. They are really working at building up a great multidisciplinary clinic. Our son will be 21 this Friday and was diagnosed when he was 9.

http://www.cdmd.ucla.edu/

Wow, I am glad to hear that I am not the only one that feels that way.  I am also going to be setting up in UCLA.  I was just getting ready to schedule with CHOC, but they are still linked to the OC MDA office, which in my opinion is not much better than Michaelson.  They should know what these kids need.  They didn't even show up to my last appointment.  I Look forward to talking more...Thanks..Mark

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