Phoenix Children's Hospital
Doctor: Neurology Department
Uncaring Neurologists
Hospital Complaint About: Phoenix Children's Hospital - Neurology Department
Author: Kelli Vogt
Hospital Service: Hospital Staff Was Terrible
Occur date: May 10 2010
Post date: Feb 10 2012, 05:45:32 PM
Doctor Complaint: Neurology Department - Phoenix Children's Hospital
My son was diagnosed with generalized epilepsy, having tonic clonic, drop attack, and absence seizures in 2009. We were first seen at St. Jose bs and then switched over to PCH in May 2009. We were seen at PCH until May 2010. During that year, I was not at all pleased by the care my son received. Nor did I feel that I, a parent, was treated with any respect. We were told we needed to try a few more medications or have the VNS implanted. The VNS didn't have as high of a success rate at the time and that opinion varied between then two Neurologists, Dr. Williams and Dr. Jarrar. The Ketogenic Diet was brought up but we were told that we would not be able to do it because of Bryson's diet at the time and also because of his personality. So that was not an option. Basically our option was medications. During that time we tried many medications. All of them had side effects which included increased seizures. I was told that there was no way the medications could increase seizures. Even when asked about Depakote, which he had been given before at St. Josephs and went into Status Elipticus, there was no way that could happen. So for a second time, Bryson was loaded up on Depakote, while hooked up to an EEG , Bryson went into Status Elipticus. All over the Internet, and pharmacies it says specifically these medications could cause increases in seizures. But I, the mom who was around Bryson all day, was wrong. Hospital stays were horrible. Some of nurses were rude. When phone calls were made to try to contact the Doctors, a person was never reached and many messages were left that were never answered. We soon switched over to a Neurologist at Cardons in May 2010, which at the time we were having over 100+ seizures a day.
Bryson has since been tested for so many different things at Cardons. Different alternative options were given. A few more medications were tried, but stopped immediately when the seizures increased. We had an MRI done in July 2011, with which our Neurologist wanted us to get a second opinion on it from an Eliptologist at PCH. We were advised to see Dr. Bucchalter, but were declined. He refused to see us, saying that the other two Eliptologists were perfectly capable, but we had seen them in the past and had no so great experiences. So naturally we wanted to see someone new, but were refused.
Bryson is currently doing fabulous. We started the Ketogenic Diet in August 2011. By October, we were down to having 3-5 tonic clonic seizures a week, with no drop or absence seizures. In December, we were advised to start Bryson on Nexium after having an Endoscopy done at PCH. We were to put him on the packets that you add to water. The GI doctor and nurses were very aware of the Ketogenic Diet and medications that he was on, telling me he would be fine. Seizures increased, and after much research was done by numerous people, we found out the Nexium increases two of the benzodiazepine medications he is on, and also is loaded with sugar, which you can't have on the Ketogenic Diet. Calls were placed numerous times, messages left, and we got no response. Medication was discontinued, seizures decreased. We switched to Cardons, just recently.
I am not writing this by any means to disrespect any of the doctors or talk bad about them. I have a very high respect for them all. I am writing as a mother of a child, recently diagnosed with a developmental delay due to having so many seizures for so long, who loves her little boy so much and who has a broken heart because of this. I feel that I was constantly disrespected, treated as though I knew nothing about the medications, or epilepsy and that my opinion meant nothing. Here I was a mother watching a 100+ seizures a day for 3.5 years, which is probably a hundred times more seizures than any of these doctors will see in their whole career. I saw my son pass a kidney stone(topirimate). I watched his language deteriorate(topirimate). I watched him be drugged up where he couldn't even stand, nor talk(klonopin, topirimate). I was hit, cussed at, had toys thrown at me because of rage (Keppra). I saw Keppra, Topirimate, Lamical, Depakote, Zonisimide, Banzel, and more increase seizures every time, but was told that could not happen and if I weaned him, his seizures would spiral out of control. Yet, they still did. How could they sit there and tell me I was wrong, when I was and am around Bryson every day all day. I was made to feel afraid of the Ketogenic Diet, told that I could not do it. Had I started it years before, my little boy may not have this developmental delay. He would have had less seizures, and less damage done.
My point is this: do not underestimate the power of a mother and the love she has for her child. When a mother tells you something is wrong, you listen. And most importantly, don't ever tell a mother she can't do even the most difficult thing to help her child. The Ketogenic Diet has saved my little boy. The diet that I was told was to difficult and couldn't do has proved to be the miracle in our life.
I am hoping that by writing this changes will be made. I am hoping to save another mother and child from going through the heartache and pain we have. It is devastating when you find the one answer to helping your child, is the one you were told you couldn't do and how years of pain could have been lessened.
I am hoping that by writing this changes will be made. I am hoping to save another mother and child from going through the heartache and pain we have. It is devastating when you find the one answer to helping your child, is the one you were told you couldn't do and how years of pain could have been lessened
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