Adrenoleukodystrophy treatment in 1 Oncology clinic in United States with additional parameter

We unfortunately had a five night stay at the NICU over the Thanksgiving holiday. The staff provided excellent care to our kid and were extremely compassionate to us as parents. We were grateful for the private sleep rooms and shower, and they even had a free Thanksgiving dinner for everyone. The parent / family lounges have places to grab coffee and store food, and everything is very clean and organized. The doctors and nurses were very communicative and kept us in the loop the entire time.

Absolute terrible service , my child who has a seizure disorder and potential c- diff was made to wait in the ER for 3 and half hours plus without even being properly triaged . She didn’t receive a wrist band , at any point & we can run the cameras back , no one was alerted to her allergies , there was no band received for that as it typically is .. and she begin to have diarrhea thru the long wait due to the virus she’s had the past week and in turn she begin to get worked up and her fever returned . I asked how much longer the wait would be abd for an approximate timeline .. as I’ve observed plenty of patents come in after one in which I knew personally with less servere circumstances… literally come and go and my child was still suffering in the ER … the Nurse on duty was unaccomidating and almost seemingly unwilling to engage .. as I waited for some kind of answer on when my severely sick child would be seen . I asked if it would be more then another 30 mins and he said he couldn’t promise but shouldn’t be . Well it was . After 45 mins of them calling more then 3 patients who arrived after us .. I reluctantly decided it best to take my fevering , baby who now was covered in feces home.. as she was in her 3rd bowel movement and we had difficulty changing her in the nasty public restroom . I ultimately watched them call two more patients who had come after us exhibiting no signs of eminite health scares then I ordered our ride so I could take my child home to change her and give her medicine to help reduce fever and prevent seizure . I am pissed and very upset that my child and I spent. 3 plus hours we can’t get back in the ER after already being across the street at the Berger building for 3 hours prior this was wayy less then pleasant This is the second poor experience in this particular Emergency Dept but this is the first time it was so horribly handled that I had to leave with not only an even sicker baby then I arrived with . She still now will have to go to another ER to be seen .. because she did infact have a seizure once we got home from her fever that arose& I informed them but that did nothing to medicate the situation or get her seen. Now my kid is home fevering still sick potentially has c-diff and I am skeptical to return her to this terrible hospital because they haven’t even returned my call. I called to speak with charge nurse after filing formal complaint and was told by Jennifer in WR I could not speak to any charge nurse and then she took my information and said a nurse on duty would call back and it’s been an hour with out a returned call. This is negligence and unprofessionalism tht promoted us to leave in the first place and CHOP is looking at a pretty decent lawsuit if we do go to another practice and something is severely wrong with my child with so much documented instances of me trying to get her helper seen and have a team leader consult about next steps. This place wasted my time , cash as it’s costed money I didn’t have to travel to and from and I felt like the poor treatment was racially motivated , as as kid who came in after us was pulled to the back cuz her mother told them she was seizing but I was looking at the child. Who literally just had woke out her sleep. This place is incompetent , and of all the amazing experiences we’ve had here . Today ultimately casted a shadow on them all and I will be contacting the PA board of insurance aswell to file a formal complaint because they need to do better on managing and transparency in the ER wait times. We got there at 12:15 and didn’t receive a text saying my child’s room was ready until 4:15 pm that’s 4 freaking hours for a child who had 2 seizures in past week, has a virus, and cold and caught fever while there … when she has a history of febrile seizures … 0/10 would not recommend. Shame on u all

Very friendly staff and amazing doctors. The information desk is very helpful. The front lobby is well designed and honestly fun to be in due to it's design: there is a meandering ramp that goes up several stories with interesting interactive stops on the way. The lobbies on each floor are also all well laid out: they have great views outside and inside were designed with children and comfort in mind. The plaza out front and the cafeteria/Cafe are both relaxing places to recharge.

My brother was in this hospital because he had appendicitis and had to get surgery and He said the nurse was nice! I think this place is really nice because it's clean and Its nice looking, I know that because I was there to visit him in the hospital. I also want to thank you for saving my Brother before more consequences happened to him and that he could've died.. but thank God this hospital was there! Once again, thank you for saving him🙏🤍 Also I definitely Recommend this place if you want nice doctors and want to feel less anxious and comfortable here.👍

This hospital isn't what it used to be! It seems to be loosing patient focus and fast. We've been a CHLA family for 11 years and I think it's time to switch. My autistic son was SCHEDULED for Dental Surgery. Originally it was supposed to be at 1pm and us be here at 11am. When we got the call from the nurse last night that we needed to be here at 530 AM we were like no one told us! But we got here right on time. We'll let me tell you that they took him upstairs to Surgery PreOp it took over 4 hours to get him into the the surgery room, because he needed to be admitted after surgery and no beds were available. This hospital needs to have better planning for these types of things OBVIOUSLY there will be emergencies that come in over night THAT SHOULD'VE ALREADY BEEN ACCOUNTED FOR!!! Maybe you need more staff and more beds!!! Because to have a child basically starving because you couldn't plan Accordingly is just plainly ridiculous! Then when I spoke to the Charge Nurse in the Surgery Dept she tells me that if my autistic son has an outburst that the anesthesiologist and nurse are there to help give him something to calm down. So basically if my son has an autistic outburst they will just drug him up. I'm like realistically drugging my son just to calm him down because your hospital didn't plan accordingly is uncalled for and unnecessary! Again I am seriously contemplating switching hospitals even though my son is on the Heart Transplant List!!! -A Frustrated Autistic Heart Mom

Ok so I had open heart surgery 20 years ago. I was well cared for and was in icu for three days and then went to a step down room where I was later discharged home after only three days at the hospital. My team was so amazing and so supportive and loving. And a picture of me twenty years later.

Got first-rate care, had a great experience and a positive outcome! Kudos to the Nurses, Doctors/Surgeons/Anasthesioligists, Physical Therapists, Dieticians/ Food Service, Fellows, Interns and Students.Special shout-out to my postoperative caregiver- Karina Valentine. She kept me going through the most challenging part of my surgical journey- enduring procedures to facilitate the OUT in outpatient. Lest we forget the unsung heroes that keep the hospital so hygienically safe and superior- I must now sing my praises to the custodial technicians: 🎶We could eat off of the floors But we don’t have to They give plates and forks Don’t spill dessert (I got strawberry shortcake 🍰)

Duke has reached a new low in Health Care. I'd give them stars in the minus categories if I could. My son had eye surgery and every time we went for an appointment we waited over 2 hours to be seen. I can tell you I read 150 pages of a book on one visit. We actually saw people leave without being seen because they had waited so long. My son objected to the long wait one day and was told by the surgeon that he was ruining her day. Because of the wait he asked to talk to the manager or an administrator. While waiting the police came made him leave because they said he raised his voice. He was not allowed to talk to the administrator and was escorted out. This is not the first problem we have had with Duke. My son was in the emergency room waiting for the specialist on call when the Emergency Doctor came in and told him that the specialist on call was already home and refused to come in to see him. We were told he should go to the specialist's off the next day. We did that and he was seen for less than 10 minutes and told to go back to another doctor. Seems the specialist could have cut through the chase and just told us that to begin with. My impression is that almost every one in the hospital system is very impressed with themselves and seems to think it below them to interface and deal with patient who have some real problems. I can, in no way, recommend any Duke Service. I could continue with examples but it would sound repetitive. I practiced Nursing for 45 years and never came up against any care that is this poor in quality. Giving them -5.

There is good and bad. I recently gave birth at Duke University Hospital and I want to say that my experience with Doctor Clifford, and nurses Lexi, Brenna, Tabitha, Josephine among others was phenomenal. I was blown away by the care and compassion I received so I will say it was a four star experience. However, I have one major complaint about the experience and feel it's important enough to try to voice it. The postnatal recovery rooms are terrible. They are the size of walk in closets and if you have a support person such as your husband staying with you, they have to sleep on what is essentially an airplane chair. My husband could not do it, and it made the end of my experience at Duke hard because I needed him there with me. I felt like me and my baby were locked in a cell and I was going crazy by the time I was discharged. Thank god I was discharged early. There were many people coming in and out of my closet those last few days and nights, and it was definitely too many people. After receiving an emergency C section, I felt I was improperly educated on the repercussions. I had no idea I would have trouble producing milk after my blood loss in surgery and I was not informed about any of the medication I was prescribed. Again, it would have helped if my husband could have been there because maybe I actually was given information but was too out of it for it to sink in.