Dr. Kenneth Heym, MD

My daughter was diagnosed with a rare disease by Heym in 09. He has been responsible for increasing treatment dosage and checking her blood to make sure everything was working properly. We were told early on about all of the symptoms that can come with this disease by her specialist. He told us that one of the things that would be controlled by the right dose of the therapy was her bone health. This was something that she would not have problems with as long as she received the proper dose and if the proper tests were run to make sure the dose did not need to be increased. This summer, we found out that she had been receiving the wrong dose for at least the last 3-4 years. Another parent told us that her child was receiving a much higher dose than our daughter and weighed less than she did. She was being treated as weighing 28 lbs instead of 50 and has been for several years. We also found out she was supposed to have yearly MRIs to check her bone health and he hadn’t ordered one in… nearly 3 years. We immediately began looking for another doctor after being advised to do so by the maker of the drug. They informed us that C.C.'s Hematology was “very hard to communicate with and not willing to learn about the disease”. After seeing another doctor, we were told that her Chitotriosidase levels were elevated and had been for at least 8 months. They were rising through every blood test Heym had done and he never mentioned increasing the dose. He always told me that her blood results were great. I even asked his nurse why the dose was not increased when the levels were high in November and then even higher in May. She just kept saying she didn’t know. That level being elevated should have been the first clue that something was wrong on top of the fact that she had obviously been gaining weight over the years. She developed a limp in July without any cause. Once her new doctor had all of her blood results and was aware of the limp, he sent us for an MRI. The medication was also immediately increased to twice the amount she had been given while Heym was her dr. She had fractured the femoral head on the left side of her body, without an injury. The MRI showed that her bones were in terrible shape. She ended up having to have a plate and screws put in BOTH sides to keep them stable because of all of the damage. We were told this all could have been prevented. In my opinion, this is a direct cause of Heym’s incompetence, negligence, and complete carelessness. She is now in a wheelchair for several months. This will affect the rest of her life. The surgery was incredibly painful. More than I could ever tell you. Because he let it get this bad, she is now having to have weekly treatments to play catch up. The surgery and extra treatments billed to our insurance is almost $200,000. More than anything, this man has taken something from my 9 year old that she will never get back. She is a little girl that should be able to run around with her friends. This was something the disease wouldn't have taken from her. I believe Heym took this from her and other, more experienced doctors, agree. She already lives a very difficult life and all he did was make it much worse. He was careless with my child's life. I am so incredibly thankful for the new team of doctors behind my daughter now. One day, she should be somewhat back to normal but her bones might not ever be back to 100% normal. The dr we are seeing now has told us he can get her bones back in decent shape but that it will take several years. He cannot undo the surgery and what all comes with a major surgery like this. Please make sure that this man does not do this to your baby. I would give anything to go back and NEVER let him be my daughter’s dr. He has done nothing but cause us pain and heartache. My daughter would not be able to survive without treatment. Receiving HALF of the right dose for too much longer could have been even more catastrophic than it already has been.

Dr. Heym has been a wonderful Doctor to my son through out his cancer treatment. My so really thinks highly of Dr. Heym. he loves the nick name given to him "Mo Jo". I would highly recommend Dr. Hymes and his staff. Thank you all for you help.