Anonymous wrote:

Anonymous wrote:

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.

Hi PP- if you see this, can you let me know what issues/diagnosis etc you DC had/has? I tried making an appt with Dr. Hoon and was told he said I should see his colleague Hilary Gwynn. Thanks.

Hi, I'm that PP. My child has CP caused by a genetic disorder. Dr. Gwynn has a great reputation.

Anonymous wrote:

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.

Hi PP- if you see this, can you let me know what issues/diagnosis etc you DC had/has? I tried making an appt with Dr. Hoon and was told he said I should see his colleague Hilary Gwynn. Thanks.

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.

Anonymous wrote:We also loved Dr. Hoon at KKI. Our son has complex genetic deletions causing Hypoplasia of the Corpus Callosum, facial paresis, hearing loss and ADHD(aquired). We saw him maybe three or four times and all appointments were at least an hour. When we mentioned that it was taking forever to get any progress with walking via Early Intervention (DS was using a walker from 20-28 months) he got on the phone and called the FIT clinic (Focused Intensice Therapy) (it may be called something different now) We were able to go right over to the KKI Farimont facility and get signed up. Nate was walking in 2 weeks of daily therapy. WORTH EVERY PENNY.

Also, Hoon is not afraid to admit he isn't versed in a particular treatment. When we needed ADHD medicatioin advice he set us up with another Dev. Pedi there, Dr. Wong (who we also love). Good Luck!

Anonymous wrote:We also loved Dr. Hoon at KKI. Our son has complex genetic deletions causing Hypoplasia of the Corpus Callosum, facial paresis, hearing loss and ADHD(aquired). We saw him maybe three or four times and all appointments were at least an hour. When we mentioned that it was taking forever to get any progress with walking via Early Intervention (DS was using a walker from 20-28 months) he got on the phone and called the FIT clinic (Focused Intensice Therapy) (it may be called something different now) We were able to go right over to the KKI Farimont facility and get signed up. Nate was walking in 2 weeks of daily therapy. WORTH EVERY PENNY.

Also, Hoon is not afraid to admit he isn't versed in a particular treatment. When we needed ADHD medicatioin advice he set us up with another Dev. Pedi there, Dr. Wong (who we also love). Good Luck!