I am very interested in Max seeing Dr. Wong at some point before he starts steroids, but the trip will be an expensive one since we're in Texas. When we go for the first time and spend the money and vacation time, I want it to be a worthwhile visit. Have any of you taken babies/toddlers to see Dr. Wong? What happens at an appointment with such a little one? I know there is quite a wait to see her, so I want to try to make an appointment soon, I'm just trying to figure out how soon. TIA!

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Lane was 26 months old the first time we visited Dr Wong. Lane turned 8 in August...and we still see Dr Wong but we are fortunate to live in Kentucky. When we first visited Dr. Wong it was unheard of to start steroids that early...after some lengthy discussions she agreed to let me start Lane on Deflazacort when he turned 3. Lane was the first she started at this age. Lane is still running and even jumping and can pedal a bike! Dr. Wong told me in April by starting him on steroids when we did, we have added 5 yrs to his life!
Thanks, Amy. That's great that Lane is doign so well!

Anyone else have an opinion on when to take Max? I was wondering if there is a nurse/assistant I can talk to in Dr. Wong's office about the timing of our first visit.

Amy Kendrick said:
Lane was 26 months old the first time we visited Dr Wong. Lane turned 8 in August...and we still see Dr Wong but we are fortunate to live in Kentucky. When we first visited Dr. Wong it was unheard of to start steroids that early...after some lengthy discussions she agreed to let me start Lane on Deflazacort when he turned 3. Lane was the first she started at this age. Lane is still running and even jumping and can pedal a bike! Dr. Wong told me in April by starting him on steroids when we did, we have added 5 yrs to his life!
We have our almost 9 year old in a Drug Trial PTC. So we visit CCHMC every 6 weeks, First of all, CCHMC is by far the best hospital we have been to in terms of organization, scheduling, and patient focused, We have been very impressed with the staff and hospital. We even have Columbus Children's hospital which also does a lot of research for DMD and is only 20 mins away. But CCHMC is worth the travel. Taking a 3 year old is a personal decision. We have a 15 month old and has been seen coincindentially by Dr Wong since his older brother is in the study, Paula Morehart is an RN with Dr wong. She maybe able to help you. Paula.Morehart@cchmc.org.
Veronica, My son was 15 months when I started going with Dr. Wong (he is now 3). At that time I was living in Venezuela. I moved to Cincinnati because him. You can stay with us with if you want when you come visit Dr. Wong. I really mean it. We have 3 kids, a 3yr old (with DMD) a 2 yr old and a 5 month old so we have lots of toys for your son!! (which could make the experience more enjoyable for him). Now, I can also help you if you want getting you a babysitter that could go with you so that you can focus on the conversation with Dr. Wong. This is what I did sometimes since our boy was very whiny and it was difficult to really take advantage of our visit and limited time with Dr. Wong while hearing our baby crying and whining... so having the Nanny to go with you can be a nice option and I think I can help you with that - on getting someone you can help you and someone you can trust.

Here is my phone in case you want to call me - (513) 765 9416

Warm regards,

Leslie
Leslie Guzman said:
Veronica, My son was 15 months when I started going with Dr. Wong (he is now 3). At that time I was living in Venezuela. I moved to Cincinnati because him. You can stay with us with if you want when you come visit Dr. Wong. I really mean it. We have 3 kids, a 3yr old (with DMD) a 2 yr old and a 5 month old so we have lots of toys for your son!! (which could make the experience more enjoyable for him). Now, I can also help you if you want getting you a babysitter that could go with you so that you can focus on the conversation with Dr. Wong. This is what I did sometimes since our boy was very whiny and it was difficult to really take advantage of our visit and limited time with Dr. Wong while hearing our baby crying and whining... so having the Nanny to go with you can be a nice option and I think I can help you with that - on getting someone you can help you and someone you can trust.

Here is my phone in case you want to call me - (513) 765 9416

Warm regards,

Leslie

Thank you so much, Leslie!! I called last week and talked to Dr. Wong's secretary, and she said they are booked through July! I'll definately let you know when we have something booked. :)
Ok, I'll be waiting for your call. We are very much interested on helping you have an enjoyable visit! - Good luck booking your appointment. We wish you the best in this Christmas - your babies are lovely.

Leslie

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