|
BeckerMD Forums |
|
|
|
|
|
|
|
|
|
|
Subject :BOSTON CHILDREN'S HOSPITAL..
2008-03-29 22:30:49
|
|
|
| Evans' Mother |
|
| Experienced |
 |
Joined: 2008-03-26 04:43:09
Posts: 37
Location: |
|
|
|
|
|
Hi we are taking a trip to Boston Children's hospital. They do a lot of research in muscular dystrophy.
Does anyone have more information? |
IP Logged
|
|
|
|
|
|
Subject :..
2008-04-04 07:58:34
|
|
|
| Roxanne |
|
|
| All Star |
 |
Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
|
|
|
|
|
|
Hi there, I can't help you there; I am living in Canada but if you become a member on www.parentprojectmd.org there are many on that site that can help you.
Best of luck |
|
IP Logged
|
|
Roxanne Mom to Nicholas (10) with BMD |
|
|
|
|
|
Subject :..
2008-04-04 10:35:02
|
|
|
| kgoodfellow |
|
| All Star |
|
Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
|
|
|
|
|
|
I have had wonderful experience at the Harvard medical center. They also have good MD doctors that are familiar with and treat adults. Most of the children's hospitals are very good places for children with MD. They have a wide range of experts available.
MD care for adults is sorely lacking in most parts of the country. |
|
IP Logged
|
|
K. Goodfellow |
|
|
|
|
|
Subject :Cincinnati Children's Hospital..
2008-04-23 02:32:21
|
|
|
| Meisa |
|
|
| Experienced |
|
Joined: 2007-11-14 11:37:47
Posts: 39
Location: |
|
|
|
|
|
|
I am considering taking Jordan to Cincinnati to see Dr. Brenda Wong. Has anyone on here been to this clinic? We have several MDA clinics here in the Bay Area but none seem to be as well organized and experienced as the one in Cincinnati.
My son was diagnosed at Stanford but I have a hard time scheduling other appointments with cardiologists, pulmonologists, etc. It seems that since my son doesn't have very obvious symptoms, the neurologist is not very motivated to refer us to other specialists. I do want to be more proactive than they are, is that wrong? I feel that if we detect things early on, it will be easier to treat and better in the long run. Thank you in advance for your advice on this.
Meisa (Jordan's mom) |
|
IP Logged
|
|
|
|
|
|
Subject :Boston Childrens..
2008-04-23 07:30:12
|
|
|
| Evans' Mother |
|
|
| Experienced |
|
Joined: 2008-03-26 04:43:09
Posts: 37
Location: |
|
|
|
|
|
|
Hi Meisa,
I have also heard great things about Dr. Wong. However it will take a very long time for them to see my son (maybe 1 year from now). I have an appt. with Dr. Kang who studied under Dr. Kunkel on May 12. We are flying from Miami. I will let you know how it goes.
Kindest Regards |
|
IP Logged
|
|
|
|
|
|
Subject :..
2008-04-23 08:32:37
|
|
|
| Meisa |
|
|
| Experienced |
|
Joined: 2007-11-14 11:37:47
Posts: 39
Location: |
|
|
|
|
|
|
Hi Jessica,
Thanks for your message. You're right about the amount of time it takes to get in; it's not quite a year- our appointment is in the middle of September. They do say if after reviewing the results so far the doctor feels it's necessary to see him earlier, they will arrange that. I am just glad they have a lot of experience with BMD and sounds like they'll be quite thorough.
Boston for us would be quite a haul from Northern Ca but it's semi close for you. I'm glad you were able to get in and I hope all goes well with Evan's appointment. It's hard getting the attention when there aren't very many symptoms present. Jordan, like Evan, still can walk and seems like a normal boy. His only symptoms now are that he fatigues easily, has muscle pain upon too much excersice and has some weakness in his left shoulder and hip. To me, that's a lot but to our current Neurologist, it's not that bad. I just don't want it to get worse too fast.
Sorry, I keep getting carried away. This has been a lot to take in and I need to know I'm doing everything I can to help my son. I'm sure you know the feeling.
Take care and keep us posted on your findings.
Meisa (Jordan's mom) |
|
IP Logged
|
|
|
|
|
|
Subject :Dr Wong's Cincinnati clinic..
2008-05-22 09:58:47
|
|
|
| sethsmom |
|
|
| Experienced |
|
Joined: 2007-03-24 09:44:07
Posts: 26
Location: |
|
|
|
|
|
|
Meisa,
We take Seth to see Dr Wong in Cinci once a year. We live in NC and pay the cost out of our pocket to see her. Yes, it takes forever to get in, but in my opinion, she and her colleagues are worth it. After you see her the first time, your visits are scheduled for the same time the next year (well, at least Seth's are). We get our regular clinic visits at Duke University's MDA clinic, but go to Dr Wong also. We still receive funding from our local MDA for mobility issues, so that doesn't go away.
My suggestion is that you take your son to your local MDA clinic so that you will have that experience to compare with a visit to Dr Wong's clinic. Go see her once for the experience, if you can afford it. She has the only Clinic we've been to (yes, we've been to 4) that looks at all parts of the boys (heart, lungs, PT, OT, Nutrition). The clinic organizes all your visits and tests, then sends you a summary at home along with all of your test results a few weeks later. JMHO, but she is worth the wait. |
|
IP Logged
|
|
|
|
|
