We took Cade to an Orthopedist to see if he could treat Cade's toe walking. He suspected DMD right away, but didn't say anything. He told us to take him to a neurologist, just to rule some things out before they treated his toe walking. The neurologist did an exam and ordered blood work. I am sure that she (the neurologist) knew what was wrong - she hugged me twice before I left her office.
About Dr. Wong - we could not have been more pleased with our visit with her. We were there 2 weeks ago. She helped us see exactly how Cade was affected and exactly what we should be doing right now to best meet his needs. :)
I looked up Dr. Wong and she has great credentials. I really want my son to see her, I'm still trying to convince my husband, he doesn't understand why she would be much different then Lotze, I told him she seems much more focused and has more experience with MD then I think Lotze has, if you read about Lotze he has several other disorders that he does.
I did check my insurance, I have a PPO, and Wong takes my insurance. I would need to make plans, air, hotel and such for Wong so I would need the time, did you bring any medical files with you? I called the MDA to get an appt with Lotze and they told me I would have to fill out some HEPA release papers and send them back only then could they make an appt. So no telling how long before I can get in there. I'm going to call my Ped tommorrow and see if she can get copies of the files for me. I will keep you posted, let me know if you find out any thing about protein levels, I'm going to call Katie the genetic counsler at TCH and see if she can explain this to me.
Are you in Fairfield? I used know people that lived there. They all moved closer in before all the shopping came over there.
.I 'm close to the Renisance Festival in Magnolia.
With my insurance I did not need a referral to see Dr. Wong. We also got lucky b/c the hospital, Wong and most of the others we saw were covered under our plan--it did not matter that it was out-of-state. I hope you have the same good fortune. I will get you a number to call for an appt.
I have no idea about the protein levels--I have never even heard of that in regards to dmd. I will have to see what I can find.
What part of Houston are you in? I am in the NW part, off of 290. Good luck getting an appt. with Wong and Lotze--I waited about 2 mos. for both;) Will chat with you later. Jill
Hi, Kathy. No, we're not far. And when I'm working, I'm in Magnolia at Canrig. We've never seen any of the doctors here. We lived up in Cincinnati when Sam was diagnosed, so we've been seeing Dr Wong from the beginning. We have no plans of switching. I highly recommend her, although, her schedule is becoming quite full. Other options are Kevin Flannigan in Utah and Brian Tseng (he's new, but has a great passion for helping ou boys) in Boston.
Hopefully y'all can join us when the Houston group gets together again. The boys all have such a great time.
Kathy we live in the Northwest side of Houston, Champions Forest, and have family and good friends in Magnolia. Our heart is broken for the diagnosis of your son as I would love to see an end of people joining the PPMD Community due to reason's of having a son or close loved one newly diagnosed with DMD or BMD. I can't wait until the time that PPMD goes out of business.
You have come to the best place for knowledge and support. PPMD is light years ahead of MDA or other organizations when it comes to sharing information and supporting the best research going on out there for our sons.
Feel free to contact us any time. We just learned of our 2 1/2 year old Son Connor's DMD diagnosis on May 22, 2008 making this the hardest summer of our lives. We attended the PPMD conference in Philadelphia in Mid July and found it to be very informative. We saw Dr. Lotze the following week on July 25th and we can offer you our thoughts on the Houston MDA clinic. We are going to travel to meet Doctor's with other MDA clinics and we can give you detail on that as well when we come back.
Unfortunately or Fortunately depending on how you look at it, it seems the Houston area has one of the largest representations with the PPMD Community. We have met many great people from the Houston area like Jill Keenan who has posted on your profile as well.
Good Luck and God Bless Jonluke and your family.
I for sure think that it is sooo worth going to Dr. Wong!! She is smart as a whip--whe knows her stuff!! She is getting harder and harder to get into though. It won't hurt to go see Lotze but if you have the means and ins. coverage, I would go to Wong. Lotze is a good dr. (esp. compared to horror stories I have heard about other md drs.); he is just a little behind the times. (If you decide to start steroids, then Dr. Wong runs a ton of tests to get baselines on the heart, bone age, bone density, and to also check calcium and vit. d levels--talk to me before you start steroids and I can give you the "low-down.") If/when you see Lotze, I would have him track down what "abnormal dystrophin" means, i.e. an actual %age, which the lab where he had the biopsy done should be able to tell you. It sounds like your son is very mild and I do wonder if he has bmd or is an outlier, which is what the nurse was referring to. Wong explained to us that it is like a continuum--you have severe, moderate, mild dmd, then outliers, then severe, moderate, mild bmd. With him showing very few symptoms, I would guess/hope that he was on the bmd side. But I have no idea--that is what the biopsy should have told you. (They are supposed to keep the frozen muscle samples for a long time, so if they didn't measure the dystrophin amt., they should be able to get that with what is left. I would insist on it--but that is me. You had it done, the answer is there, they should find it for you!!) I am also wondering what info. could be gathered from the MRI. Did they get a close look at the muscle on his thigh? My son had an MRI and Dr. Wong said the results looked like something she might see in a severe bmd, which is one reason why we had a biopsy--to know the amt. of dystrophin. (We have about 8 wks left before we know the results.) Dr. Lotze might be able to look at those MRI pics. (if it was a close look at the muscle) but not sure if he uses that as a tool but Dr. Wong would be able to. She told us to think of the muscle MRI like a rib eye with the marbling--that's kind of what damaged muscle looks like and the less marbling, the better. She could then tell (somewhat) how much damage is done--probably comparing to other boys his age. As for his passing out episodes, I have never heard another parent say that their son does this, so I bet that is not related to b/dmd. (But again, I have no idea:)
I am so very sorry to hear about your son--thanks for sharing your story. I know how devastating this news is and seems to come completely out of the blue. Time doesn't heal all wounds, but it does seem to soften the blow a bit. Somehow we pick ourselves up off the floor and go on, and find happiness in our lives thru our sons and families. We are blessed to live in a time where research is giving us hope for real treatments to prolong our sons lives and give them a better quality of life. B/dmd men are living much longer than before and much longer than the internet states!! Feel free to contact me anytime. Hope I answered some of your questions and if I didn't, you can ask me again:) Have a good day! Jill
hI - Welcome. So sorry about your son. My son, Alex is 8 almost 9 with DMD. I saw the town you live in. I grew up in SE Texas, near Beaumont. My dad grew up in Magnolia. My aunt and grandmother lived there through my childhood. I spent alot of time there growing up...lots of memories. My aunt had a small house right across from the railroad tracks. We had lots of family reunions there. Take care.
It is a sad day when yet another beautiful boy is diagnosed with DMD. I truly feel for you and I can understand that it will take a while to "come to terms" with the whole change in you and your son's future. Though I may not be in the US, I am in the same boat as you and I am here to support anyone who needs it. I am trying to raise awareness of this disease so we can get more money and research and find a cure sooner, rather than later.
Your son is beautiful, you must be one very very proud mum! Even though this disease sucks, you are lucky you have found out about Jonluke's dmd as now you can take action to try and prevent him from deteriorating too fast. This diagnosis, obviously a total shock, will take some getting used to. My son was diagnosed at 2 years of age, 2 years ago. I still cry with my husband every other night - it doesn't get any easier. We just learn to cope better and hide our feelings a little more in public.
You have stumbled upon a great site - all these people are fantastic and so supportive. They will travel this road with you every step of the way.