Resources

Resources

Pam Resources Page 1

pediatrician

Dr. Delphis Richardson usually has the right answer. He’s never cut me short on an office visit no matter how many and varied or repetitive questions I tried to fit in. He was the one who sent us for an MRI immediately when I brought James in for a persistent head tilt at 9 months old after two previous doctors had told me it was just a stiff neck and sent us home. He is not allowed to retire until he can find an adequate replacement or James turns 19, whichever comes first.

Developmental Pediatrician recommended by friends: Dr. Kessler  

Developmental Psychologist: Dr. Amanda Wood

 

neurosurgeon

Dr. Peter Sun, we were told in the beginning, has performed so many miracles in the O.R that we just expect it now. James is living proof of that. When even St. Jude threw their hands up, Dr. Sun said he could get at least 90% of the tumor, maybe all of it. If you are told that your child’s problem is inoperable, check with Dr. Sun first, then you will know for sure. Here’s a great video from Dr. Sun.

Oncologist

Dr. Michael Graham knows when you’re waiting by the phone for MRI results. Compassion and patience inform years of experience. You understand that he is on your side. If you are faced with an oncology – related decision it’s important to know that all hospitals have access to the same menu of treatment protocols. It is not the case that one hospital can give you something that another can’t, it’s more a matter of which treatment doctors believe has the best chance to work. Dr. Graham, as well as the International experts at Oakland Children’s hospital, are worth contacting for second opinions no matter where you live. You can always have the protocol they recommend carried out closer to home. Here’s a video peek of Dr. Graham.

OCH

During the 4 to 5 years James fought brain cancer I came to learn who was the best of the best in pediatric medicine. There were many others who made a difference, but I thought these are the categories that would be most searched for. If you need these people, you will come to meet the others. The Oakland, CA docs mentioned here are all from Oakland Children’s Hospital. They are consistently brilliant, compassionate, professional and patient. I think for these reasons they achieve things that other hospitals don’t. They kept going when everyone else gave up. If you have a problem and no one else can help, this is the real A-Team.

Ophthalmologist

I’m including Dr. O’Neil because he’s a great eye surgeon and I trust his judgement. He’s achieved amazing results for James over multiple surgeries. Full disclosure requires me to add that office visits are an ordeal, with a minimum hour delay every single time, months out to book an appointment, and front desk staff who clearly would rather be somewhere else. But there is not an  abundance of good pediatric eye surgeons and  if you have a child with special needs the vast majority of the time you need a pediatric eye doctor in your Rolodex. Dr. O’Neil sees a lot of special needs kids. You may or may not have to compromise on good bedside manner if that is a high priority, but you can trust that your child’s eyes are in good hands. Dr. Brandon Cassidy also comes well recommended with a better office experience.

AdditionalResources

Dr. PandyaAmazing Orthopedic Surgeon if you’re local and need a second opinion.

The National Association for Rare Disorders: This came highly recommended by trusted professionals.

Special Education and Special Needs Law in Phoenix, AZ: Unfortunately, once you make it past the hospital stage you may need to deal with special education.. At some point, at many points, you will have to fight there too. In AZ these two lawyers are among the best and most caring:

Lori Bird: When you need an advocate to attend IEP meetings with you.

Kirsch-Goodwin & Kirsch, PLLC: When you need litigation.

Wrights Law: Good resource for special needs law and other factual things. I can’t stress enough that you need to inform yourself accurately of your and your child’s rights, the school districts will not, no matter how nice they may seem to be.

Also…
It’s a good idea to search for groups on Facebook to connect with other parents in similar situations. Seek out other parents at your school. You don’t need to have them over for dinner if you don’t want to, but you do need to talk. You need to know each other. These Facebook groups are often private and restricted to families, barring school district employees. When your opponent is the school district, they aren’t going to tell you who your friends are. And you need friends. Not so much for emotional support, though that is there if you need it, but to share information that you wouldn’t know otherwise. *If you’re not in Arizona and you have no idea where to start, I’m sure these people can at least point you in the right direction in your area.