I am taking my 4 year old son to see Dr Wong in Cincinnati.  We have heard nothing but good things.  Can anyone give us first hand experience.  Any replies would be greatly appreciated.

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Take a stroller, it is BUSY!!! Get free passes to the Childrens Museum...you all will love it! Probabaly too cold for Zoo. I remember our first visit....so angry to have to go, so glad there was somewhere to go! Most people love it and I know that I feel 'safe' there...like it will all be ok. Finally a Doc (well, more than one) that knows more about DMD than I do! Meet other parents going at the same time...ask here and on FB about who is going the week you are there. Do you need hotel advise? The hospital has lots of discounts. Flying or driving? You can fly for free (may be too close to do that now, but for future reference, let me know if you need it). Oh yeah, take snacks in a bag so your son won't get hungry if things run late (and they probably will). Dr. Wong or Dr. R makes you feel like you are the only person in her office. that is great when she is with you....but she is doing the same for the other families, so take your patience! You will get your 'turn' and you will not regret it! It is not a scary place....you won't see lots of older boys, I don't know why, I rarely do...I know that was one of my concerns on my first visit. Now, I know so many that I would LOVE to see them! THere are other docs in the neuro area, so all kids may not be there for DMD, but you know the signs so find them and make friends. After all, we are all now members of a family.....Good luck! Lori

Hi Theresa and Rob,

  Our son was diagnosed almost 2 years ago and we have been there 3 times.  Yes I agree with Lori, bring a stroller.  And the children's museum is the best one I have ever seen.  If you go to guest services (I think it's called) at the hospital you can get free passes. Also I've learned that if you are going to be driving around Cincinnati at all, have a GPS.  Some of the neighborhoods down by the hospital are a little scary, so if you can avoid getting lost, that's always a good thing. 

     Again like Lori said snacks are great. You will likely stay in one room for all of your appts.  (depending on what they are) so bring books, toys, etc.  There is a tv in every room so you can watch cartoons and such. As far as hotels go, stay about 10 to 20 mintues away and you might get a better deal.  There is no traffic (not sure why) so you won't have to worry about getting stuck.  We usually allow ourselves about 40 minutes to get to the hospital, because of parking and construction.  The cafeteria is pretty good and very responsibly prices.  Don't be scared, it was the best decision we have made on this DMD journey. 

    If you go during the winter, the roads are sanded and taken care of very well.  And I don't really now why, but ice and snow don't generally stick to the road.  We're from Seattle and it's pretty wet here so winter travel can be terrible. 

    Good luck.  It's hard to explain what it's like until you get there.  But once you have been you will understand.  There truly is no other place I would rather have my son receive care.  It's truly an amazing place.  And Dr. Wong, is a gem! My husband calls her the YODA of DMD, you'll see why when you meet her.

        Take care. Melissa

 

Ask lots of ??  Diet, supplements, braces, stretches, IEP.  You will leave feeling like it was worth it.  We travel every year from Oregon.  Great and caring team.  Everything is pretty much laid out for you. 

Go to patient services and get your free passes to the zoo.  We stayed in Covington, KY. 

I have taken my son to various doctors in and out of the states...Dr Wong and the set up in Cinci is by far the best I've seen!

My son is older...almost 11... so we had 3 days full of different doctors{cardiology/pulmonology/pysical therapy....the works}

Take a notebook...they give you so much info you're going to want to take notes.....and a folder with all his previous exams..

The hospital is great at helping you get discount hotels and free tickets to attractions..but don't "overplan" your days or you'll be wiped out.....Eat a GOOD breakfast....and take snacks.....All the waiting areas are kid friendly with TV's and drawing activities....they even have TV's in the doctors offices while you're waiting.......All the people there REALLY care....you're going to feel as if you've come home to family after a long trip........Good Luck!!!!!!!!!!!!!!! 

We went once last year, and are going again in May, and had a great experience there! The only thing I'd add is if you go to the Children's Museum (which is SUPER fun -- definately recommend it!), bring an additional set of clothes. They have an awesome water area, and while they provide raincoats, my kids got soaking wet!

Hi Lori thanks so much for the response.  What part of the country are in? My wife and I would like to speak to you if you have the time my email is robcap9MM@aol.com. I would really like to hear from you....thanks so much Rob

Lori Ware said:
Take a stroller, it is BUSY!!! Get free passes to the Childrens Museum...you all will love it! Probabaly too cold for Zoo. I remember our first visit....so angry to have to go, so glad there was somewhere to go! Most people love it and I know that I feel 'safe' there...like it will all be ok. Finally a Doc (well, more than one) that knows more about DMD than I do! Meet other parents going at the same time...ask here and on FB about who is going the week you are there. Do you need hotel advise? The hospital has lots of discounts. Flying or driving? You can fly for free (may be too close to do that now, but for future reference, let me know if you need it). Oh yeah, take snacks in a bag so your son won't get hungry if things run late (and they probably will). Dr. Wong or Dr. R makes you feel like you are the only person in her office. that is great when she is with you....but she is doing the same for the other families, so take your patience! You will get your 'turn' and you will not regret it! It is not a scary place....you won't see lots of older boys, I don't know why, I rarely do...I know that was one of my concerns on my first visit. Now, I know so many that I would LOVE to see them! THere are other docs in the neuro area, so all kids may not be there for DMD, but you know the signs so find them and make friends. After all, we are all now members of a family.....Good luck! Lori

Theresa and Rob,

Cincinnati Children's Hospital is a wonderful place! Our first trip was in June, 2008. We had been taking Bradley to a neurologist in St. Louis who seemed to just stand back and watch the progression instead of being proactive about his care. When I told my husband about what I had heard about Cincinnati Children's, he agreed that we could go once and see what we thought. He was tired of the doctors (neurologist and cardiologist) sitting back and doing almost nothing.

Our intention was to go and if it was really as good as what we were hearing. If it was we had planned to alternate visits between Cincinnati Children's and St. Louis Children's.

Our first visit consisted of 3 days of tests/appointments. Dr. Wong spent 2 hours evaluating Bradley on the first day and another 30-45 minutes the 3rd day. We were used to waiting 1-2 hours for the doctor; only to spend 5-10 min. with him. The only thing the doctor really did was prescribe prednisone.

He refused to approve deflazacort and always wanted to increase the prednisone which was causing more and more weight gain. I finally started telling him I didn't want an increase, I wanted a decrease in the dose. He'd always agree on keeping it the same but never wanted to decrease it.The cardiologist would not prescribe lisinopril, even though it had been shown in a study to delay cardiomyopathy. He told us there were too many side effects and he didn't need it. When we went to Cincinnati the first time, Bradley already had mild cardiomyopathy and Dr. Cripe prescribed lisinopril.

Dr. Wong was willing to try deflazacort an alternative steroid that we had tried getting the previous doctor to support. She encouraged us to come back to Cincinnati in 6 months so he could be followed up on after the deflazacort. We also feared the St. Louis neurologist would want to switch Bradley back to prednisone which was causing Bradley to gain a lot of weight. We agreed to come back in 6 months. When we walked out of the hospital that day, my husband said, " I want us to bring Bradley here to Cincinnati every 6 months. I don't want to go back to St. Louis at all." For my husband, such a decision was huge. The doctors and staff at Cincinnat Children's made an impact on each of us, even on my daughter who had before felt invisible at visits in St. Louis.

I know there is a lot of detail here but these are just some examples to show you the proactive nature of the doctors at Cincinnati. The care that you will get for your son is incredible!

We are leaving tonight from Southern Illinois for appointments Wednesday and Thursday (Jan. 5-6). We will be staying in Hanniford Suites which is a great hotel with a great continental breakfast which include omelets made to your order. You can get a discount through the hospital.

Lisa Jones (mother of Bradley, who will be 14 in March)

I wanted to also let you know when we stayed at Hannaford Suites this week, the cost was $55 because of the winter months. When we have stayed there in the past, it has always been $69 regardless of season. You probably already have a hotel chosen but I wanted to tell you.

Very surprised to have of your disappointment with St. Louis ! Which doc did you see ? We are very happy there.

Lisa Jones said:

Theresa and Rob,

Cincinnati Children's Hospital is a wonderful place! Our first trip was in June, 2008. We had been taking Bradley to a neurologist in St. Louis who seemed to just stand back and watch the progression instead of being proactive about his care. When I told my husband about what I had heard about Cincinnati Children's, he agreed that we could go once and see what we thought. He was tired of the doctors (neurologist and cardiologist) sitting back and doing almost nothing.

Our intention was to go and if it was really as good as what we were hearing. If it was we had planned to alternate visits between Cincinnati Children's and St. Louis Children's.

Our first visit consisted of 3 days of tests/appointments. Dr. Wong spent 2 hours evaluating Bradley on the first day and another 30-45 minutes the 3rd day. We were used to waiting 1-2 hours for the doctor; only to spend 5-10 min. with him. The only thing the doctor really did was prescribe prednisone.

He refused to approve deflazacort and always wanted to increase the prednisone which was causing more and more weight gain. I finally started telling him I didn't want an increase, I wanted a decrease in the dose. He'd always agree on keeping it the same but never wanted to decrease it.The cardiologist would not prescribe lisinopril, even though it had been shown in a study to delay cardiomyopathy. He told us there were too many side effects and he didn't need it. When we went to Cincinnati the first time, Bradley already had mild cardiomyopathy and Dr. Cripe prescribed lisinopril.

Dr. Wong was willing to try deflazacort an alternative steroid that we had tried getting the previous doctor to support. She encouraged us to come back to Cincinnati in 6 months so he could be followed up on after the deflazacort. We also feared the St. Louis neurologist would want to switch Bradley back to prednisone which was causing Bradley to gain a lot of weight. We agreed to come back in 6 months. When we walked out of the hospital that day, my husband said, " I want us to bring Bradley here to Cincinnati every 6 months. I don't want to go back to St. Louis at all." For my husband, such a decision was huge. The doctors and staff at Cincinnat Children's made an impact on each of us, even on my daughter who had before felt invisible at visits in St. Louis.

I know there is a lot of detail here but these are just some examples to show you the proactive nature of the doctors at Cincinnati. The care that you will get for your son is incredible!

We are leaving tonight from Southern Illinois for appointments Wednesday and Thursday (Jan. 5-6). We will be staying in Hanniford Suites which is a great hotel with a great continental breakfast which include omelets made to your order. You can get a discount through the hospital.

Lisa Jones (mother of Bradley, who will be 14 in March)

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