Guest guest Posted April 23, 2007 Report Share Posted April 23, 2007 ----- Original Message ----- From: Racheal s To: advocate@... Sent: Monday, April 23, 2007 4:16 PM To whom it may concern: My son has been a patient on and off at Doernbecher's. He has CHARGE Syndrome. Most of the staff has been a blessing, However I have rising concerns about one of your specialtists. My son is s. He has had 4 heart surgeries which have been successful. At the age of 61/2 months he started having siezures. This is due to his CHARGE along with brain abnormalities. If you read up on the syndrome you will find that in fact children whith CHARGE if they are going to start having siezures they typically start at that age. Since he has been diagnosed by Doernbecher's neurology dept. with having siezures he has been sent back and forth from Medford to Doernbechers with concerning siezures. Now we are at the point where the Head of Nuerology Dr. Koch will not discuss 's siezures because now they don't think that is what they are, When they are the ones who diagnosed him. Dr. Koch has indeed been rude to 's pediatrician, and barely offers her the help she needs to treat him when he is home. He has been re-hospitalized again the day after we got back from up there. He was completely taken off his Phenabarbitol within two days instead of a slow wean. I believe this caused a slew of siezures. One that lasted 45minutes this past Saturday. Thankfully my son is o.k. I feel that he is not getting proper care by the Nuerology team at Doernbecher. I am thouroughly disappointed. These people are here to try to help in any case scenario and to give families the best care and unfortunately in 's case I feel he did not get that from Dr. Koch. We have a specialists here in Medford who has done an EEG on and found that these are indeed siezures. It's good to know there is someone who doesn't treat his patients and families with such disrespect. On one last note, my opinions are towards Neurology. I have great respect for the cardiology team, the PICU nurses,and the 9th floor nurses. Marchenke has been a great asset to my sons care. Sincerely, Racheal s Quote Link to comment Share on other sites More sharing options...
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