Childrens, Kennedy Krieger or CHOP?

[Anonymous]

Which has best reputation?

[Anonymous]

What specialty?

[Anonymous]

Neurology

[Anonymous]

KKI

[Anonymous]

Went to Kennedy Krieger after consult with children's for numerology. Definitely KK!

[Anonymous]

Anonymous wrote:Went to Kennedy Krieger after consult with children's for numerology. Definitely KK!

Sorry stupid auto correct. I meant nuerology. The scheduling people are good at KK and the doctors are also amazing. Our dd had an MRI and we were happy with the nurses as well.

[Anonymous]

For what condition? I worked at both Children's & KKI so I may be able to help.

[Anonymous]

CHOP for seizures - not sure for neurology as a whole.

[Anonymous]

My daughter has a rare and catastrophic form of epilepsy and we have been to all three. I vote Kennedy Kreiger.

[Anonymous]

Anonymous wrote:For what condition? I worked at both Children's & KKI so I may be able to help.

Thanks. Issues related to dyspraxia, low muscle tone, motor delays, processing issues.

[Anonymous]

Anonymous wrote:My daughter has a rare and catastrophic form of epilepsy and we have been to all three. I vote Kennedy Kreiger.

Thanks PP

[Anonymous]

Anonymous wrote:

Anonymous wrote:Went to Kennedy Krieger after consult with children's for numerology. Definitely KK!

Sorry stupid auto correct. I meant nuerology. The scheduling people are good at KK and the doctors are also amazing. Our dd had an MRI and we were happy with the nurses as well.

Thanks

[Anonymous]

Anonymous wrote:Went to Kennedy Krieger after consult with children's for numerology. Definitely KK!

Thanks

[Anonymous]

Anonymous wrote:

Anonymous wrote:For what condition? I worked at both Children's & KKI so I may be able to help.

Thanks. Issues related to dyspraxia, low muscle tone, motor delays, processing issues.

Definitely KKI. We started out at Children's for this. It was 18 months of seeing neuros who we felt like didn't remember or recognize our child; who would ask us questions and read our chart while "listening." We never got an actual diagnosis although it was pretty much crystal clear what was going on and our child is severely disabled. He had not walked or sat up or rolled over at any time we were seeing Children's neuros. I kept asking if CP was a possibility and everyone hemmed and hawed. They discussed different diagnoses and argued amongst themselves. Doctors went on vacation and passed us back and forth. I felt like I was being gaslighted.

Finally someone in the community recommended Alec Hoon at KKI. We took our child there at about age two. Hoon spent three hours with us, assessing and talking. He told us plainly our child was disabled and diagnosed our child. It was a huge relief. He brought in two specialists to see us that day and introduced us to a neurogeneticist we are still working with to this day who is like a family member. The neurogenetic testing, which unfolds over many months if not years in complex cases, has led to a refined diagnosis.

I will never, ever, return to Children's Hospital, maybe to the ER, but the experience we had in their neurology department keeps me up at night because I feel like those two years were a waste of two years of PT, OT, treatment etc. and planning for our child. I don't think it was malpractice but my impression of Children's neurology is that they are fixated on the "sexy" cases where immediate diagnosis via bloodwork and imaging reveals a rare disorder that a teaching team can hype. There are no experienced clinicians like Hoon who, via close examination of a child with movement and muscle tone problems, will discern carefully that there is a disability (or not).

I also want to add that there is no team approach at Children's for kids who have motor/muscle problems. When you have a kid with such problems, you need other specialists: geneticists, physiatrists (doctors of rehabilitative medicine to give botox shots, to prescribe afos, etc.) You need orthopedists. You cannot get this at Children's. It's simply impossible. Our "team" would disappear, retire, or we couldn't get appintments for six months to a year.

Finally -- and I realize this is turning into a screed but I'm going to put it out there -- KKI is a facility that is meant for kids with motor problems and associated problems. Children's is not. When you go to KKI, your car is valet parked, for free. You are treated with courtesy, kindness, and respect your entire visit. When you go to Children's, hahahaha. When you go to Children's, be prepared for ugly remarks from staff about your child, if your child has a noticeable disability.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:For what condition? I worked at both Children's & KKI so I may be able to help.

Thanks. Issues related to dyspraxia, low muscle tone, motor delays, processing issues.

Definitely KKI. We started out at Children's for this. It was 18 months of seeing neuros who we felt like didn't remember or recognize our child; who would ask us questions and read our chart while "listening." We never got an actual diagnosis although it was pretty much crystal clear what was going on and our child is severely disabled. He had not walked or sat up or rolled over at any time we were seeing Children's neuros. I kept asking if CP was a possibility and everyone hemmed and hawed. They discussed different diagnoses and argued amongst themselves. Doctors went on vacation and passed us back and forth. I felt like I was being gaslighted.

Finally someone in the community recommended Alec Hoon at KKI. We took our child there at about age two. Hoon spent three hours with us, assessing and talking. He told us plainly our child was disabled and diagnosed our child. It was a huge relief. He brought in two specialists to see us that day and introduced us to a neurogeneticist we are still working with to this day who is like a family member. The neurogenetic testing, which unfolds over many months if not years in complex cases, has led to a refined diagnosis.



I will never, ever, return to Children's Hospital, maybe to the ER, but the experience we had in their neurology department keeps me up at night because I feel like those two years were a waste of two years of PT, OT, treatment etc. and planning for our child. I don't think it was malpractice but my impression of Children's neurology is that they are fixated on the "sexy" cases where immediate diagnosis via bloodwork and imaging reveals a rare disorder that a teaching team can hype. There are no experienced clinicians like Hoon who, via close examination of a child with movement and muscle tone problems, will discern carefully that there is a disability (or not).

I also want to add that there is no team approach at Children's for kids who have motor/muscle problems. When you have a kid with such problems, you need other specialists: geneticists, physiatrists (doctors of rehabilitative medicine to give botox shots, to prescribe afos, etc.) You need orthopedists. You cannot get this at Children's. It's simply impossible. Our "team" would disappear, retire, or we couldn't get appintments for six months to a year.

Finally -- and I realize this is turning into a screed but I'm going to put it out there -- KKI is a facility that is meant for kids with motor problems and associated problems. Children's is not. When you go to KKI, your car is valet parked, for free. You are treated with courtesy, kindness, and respect your entire visit. When you go to Children's, hahahaha. When you go to Children's, be prepared for ugly remarks from staff about your child, if your child has a noticeable disability.

Wow, thank you PP for this detailed response. Much appreciated. Great to hear that you received good care for your DC once you found this doctor at KK.