It was great hearing from you. It's amazing my daughter is 9 and I have the same worries. My biggest worry besides the MD has been making sure that she never feels left out and that she understands what's going on. I'm so sorry that you are going through this. And information overload. I know how that goes. At times I get so angry about everything but can't figure out where to direct that anger. But I have realized that I need to take it one day at a time and cherish every single moment.
By the way it would be nice to meet you and your family when you are in Elk Grove in November. I live in Natomas, really it's about 20 minutes away. Keep in touch and hopefully we can meet.
You are so welcome! If you have any other questions feel free to ask! If I can't help you, then I'll find some one who can=) I am so sorry that your son has been diagnosed. I know your heart is breaking and know what you are going through. I will say that with time coping becomes easier. You have your good and bad days--I've found it's like a cycle for me; one that I have gone through many times and expect that will not change! The folks in this community will give you much strength and information which will make the journey easier! Sometime when you are nearby you should stop in so we can meet=) TTFN! Jill
Hi Veronica! I saw your post but wanted to answer on your page b/c I knew it would be a long post=) Didn't figure everyone would want to read it! We live in Houston and also felt so lucky that we lived only 20 min. from one of the best children’s hospital!! And while it still is, I feel that MD is just not their area of expertise. I don't want to "trash" another dr on here, as he is a fine dr. (esp. compared to horror stories I have heard about other MD drs) --just not the best for dmd, in my opinion. Dr. Wong knows her stuff. I attended the PPMD conference this year and sat in on a session with Wong and 2 other experts in the dmd field; Drs that I know are very good in this field. That said, I was soooo impressed as I listened to Dr. Wong. She is smart as a whip and pays attention to her patients and keeps track of the data received from them. This has allowed her to give parents un/official stats, i.e. how boys and their hearts and lungs have fared while on/off steroids. As parents, this was invaluable information for us. It was real” information on her own patients – no names of course=) Lotze is just not as current on dmd as Wong is. For example, if/when you decide to start steroids, 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 before ever taking a pill. Lotze doesn’t do this until after starting steroids. Meanwhile your son is at risk for osteopenia(sp?), something that happened to my friend’s son. This could have been so bad for him—broken bones, as you probably already know, are not good for our sons. Lotze only told us to take tums for calcium, when my son, Wyatt, was actually really low in Vit. D. She has him taking 2 – 1000 iu’s of vit. D daily, plus he is taking calcium.
Wong also wants to make sure that the boys are caught up on their “live” vaccines, like chicken pox and their TB test. I can’t tell you why but the combo of steroids and “live” vaccines are not good for our boys. (I think there is a discussion about this somewhere on this site.) I just don’t think Lotze is as aggressive as Wong is and I like to be aggressive (safely) when it comes to dmd.
Another example: Wyatt, who was 4 at the time, has a deletion of 45-46 and, still hoping he might have bmd, I asked Lotze if that was an area of deletions for bmd and he said no, that bmd deletions were in the "lower" #'s--like exons 1-20. Well, I asked Wong about this and she said 45 is a hot spot for bmd. I wondered why the heck Lotze wouldn't know this. The first time we saw Wong, she walked in with papers written about Wyatt's deletions and told us that his was usually in-frame and usually leads to bmd. We already knew this but it was so nice to finally have a doctor that showed us she had a vast knowledge in b/dmd --and had done some homework before we ever met. As it turns out, the results from Wyatt's muscle biopsy that he had done in Cincy, show that he has 25-50% dystrophin and she told us that puts him in the mild to moderate bmd category. (We are so thrilled!!!! We were hoping for maybe 3-10%, which we were told is the minimum amt. for dystrophin to be functional!) So, Lotze was a bit off in saying that there was no way this was bmd in the 45-46 exon range.
I think the other great benefit to Cincy is the comprehensive care approach. She has put together a team that is so knowledgeable about dmd and they stay current in (most) research areas. In addition to all of the tests she runs and the other Drs on her “team,” she also has PT’s, genetists(sp?), an orthotist(sp?) (he doesn’t usually make the night splints but can really help in getting your son to have properly fitting splints.), nutritionists, etc. I’m sure I’m leaving someone or something out=(
Sorry this was so long but wanted to give you detailed information on Dr. Wong. She is awesome and is dedicated to saving our sons. Her staff say they don’t know when she eats or sleeps b/c she is constantly working—I know I have received emails from her at 3 am, and this was when she was on vacation!!! (Her staff is wonderful, too!)
I am so very sorry that you had to find us here but this is such an awesome resource for parents--I have learned soooo much from this site. I hope you find it useful as well. Feel free to drop me a line anytime!!
Hi, Sharyn. Thank you! I just took that pic last week and had to post it! Your son is a cutie too!
Three of my mom's brothers had DMD, so I've known since I was 12 that it was a possibility. When I found out I was pregnant with a boy at 20 weeks, I decided to test my carrier status, thinking it would be negative, and the result would just lift that worry from my mind. After I found out I was a carrier, my plan was to not test Max until he was one, so I could live in ignorant bliss for awhile, but the constant wondering and worrying was anything but blissful. It is definately bittersweet to know so early. On one hand, I feel robbed of a "normal" time with my baby, but on the other hand, I cherish him even more than I would have had I not known, I think. He is such a joy to me and our family!
I'm very glad I found this site. I look forward to getting to know you too. :)
Jennifer, I'm not really computer savvy, but I think I responded to your comment somewhere. :) Just can't find it.
What a gorgeous little boy! I am so sorry to hear he too has DMD. How did you have him diagnosed so young? Having them diagnosed so young is very bittersweet. My son was diagnosed at 2 years and I am so thankful he was and that we could start treatment ASAP, but I am sad for the "naive" years we could have had he we not taken to the doctor who gave the diagnosis.
Anyway, this is a wonderful place for you to be. Everyone is so helpful and supportive - we are all here for each other.
Welcome! I'm sorry you had to join our community, but glad you found us. I just wanted to say your little Max is just the cutest thing! I was just drawn to that picture!!! I'm Jennifer, Mom to Xavier who is almost 7 (on October 20th), I'm not too active on here as I work full time (I'm on my lunch break right now). But whatever you need you will find it here, that is for sure. Take care and God Bless!