Hi my son Christian "Shane" and his little brother Zane 20 months have DMD. we live in West Columbia 50 Miles SE of Houston. Your sons are adorable. I just wanted to say hello as we live kinda close to each other.
Hello Misty! Haven't heard from you in a while and was just checking in to see how you are holding up. Any luck with TCH or did you say that you were just going to try to get in with Dr. Wong? Are you going to the conference in a few weeks? I think I am heading there by myself--so if you are going, maybe we can be roommates. Let me know. Sorry for all the questions--just worried about you. Hope all is well. Jill
We did have a great time on the lake this weekend--it's nice to get away sometimes. I just realized that I did not give you my email so that we could exchange #'s and talk. It's firstname.lastname@example.org.
Dr. Wong's info is:
email: email@example.com (I know she is out of the office this week and I have also heard that she is backed up with emails.)
Her nurse: Andrea--513-636-4222; firstname.lastname@example.org
Shirley--clinical concierge: 513-636-5151. She is the person I scheduled Wyatt's appts. with.
I hesitate to email Dr. Wong as she is so extremely busy but she is always prompt in her replies. I try to get ?'s answered by others first before going straight to her. I think you would find the trip well worth it--my husband tells me thank you over and over again for finding her because he feels she has given us at least 10 more years with our son. We are lucky in that CCHMC, and Dr. Wong were covered under our in-network insurance. I think most of the others we saw were covered as well but haven't received all the statements from insurance. There might be a fairly long wait time to see her as well. A friend called back in April for their first visit and she has an appt. for the end of Sept. but it will be worth the wait--Wong is very positive and so is Shirley. Shirley is a sweetie and was so kind to me and told me that it is Dr. Wong's mission to save these boys!! We kind of had gloom and doom at TCH--but I can tell you this much easier over the phone=) (Although I really like Dahlia there; don't know if you talked to her.)
A friend also gave me some info. about free flights. I have not used this as I heard that you have to plan in advance, and I waited until it was too late--or rather guessed it was too late.
American Airlines 817-963-8118
1 time, 4 wks notice
Miles for kids in need
Northwest Kid Cares 612-726-4206
Child and 1 attending adult
1 time 2-3 wks notice
Miracle Flights for Kids 800-359-1711
2-3 wks notice
Operation Lift Off 314-298-9770
3-4 wks notice
Ask for Gene
Need Doctor's name, phone # and fax
5-7 day notice
Hope this helps! Email me anytime--look forward to talking to you. Jill
I'm Jessica and my son Nathan also had DMD. He is almost 6 and taking deflazacort. I noticed that you were waiting to get into the neurologist office at Children's. Is that the one in Dallas? I live there and have seen Dr.Ionnicone. I would highly recommend going to see Dr.Wong in Cincinnati. We have been twice and she got us in in a month. She is the best! Let me know if you'd like information on how to reach her. This is a difficult thing to deal with but I feel like my son is making lots of progress with the steroids and therapy. We go to hippo therapy (horseback) and water therapy twice a week. It's really made a difference in Nathan's quality of life.
I am going to Canyon Lake this weekend, so why don't you email me and we can exchange phone numbers and on Monday (or whenever it's convient 4 u) we can talk. (I will be with my kids the whole time and don't want them to hear everything I say about this disease, otherwise I'd call you this weekend.) Talk to ya soon.
Great name : ) I just joined in so far everything looks great. My heart goes out to you and your very cute boys, The John Deer Tractor is Awesome !! And Bless grandma for being there for you. I couldn't have made it this far with my son without the love and support from my entire family! Here is a pic of my farm family when Luke was 9. The family has added 5 grandkids since!
You have been waiting a whole year to get in??? That is ridiculous. Are they saying why it is taking so very long? We thought we had it bad when we had to wait 2 mos. to get in at TCH. So, you are still on the wait list and have no set appt.? I am just speechless! Although I must say that we now go to Dr. Wong in Ohio and she is soooo totally more up to date than Dr. Lotze was. After our first appt. with him, we came home feeling very depressed and not so hopeful. He was like "yep, steroids is all we've got" and I had to ask him about all the treatments that I read about. He basically said he'd heard of the stuff I was referring to, but that was about it. On our second visit we found out that Wyatt has a deletion of exons 45-46. We were still hoping that he had BMD or LGMD and not DMD (who doesn't) and he told us that BMD does not have deletions "down" in that range; only in like the single digits to the late 20's. We went home and found otherwise--that a deletion of 45-46 usually leads to BMD. Well, on our first visit with Dr. Wong, she walked in with one of the papers we had read about regarding del. 45-46. She just knows her stuff--could answer any and all of the very many questions we threw at her. It is totally worth looking into but that said I think you can get good care at TCH--you will just have to keep your doc updated on the current research or demand that he does it himself. I don't know if you are considering steroids or not but if you are there are certain immunizations (boosters) that have to be given proir to use and several tests that should be done PRIOR to starting steroids that Lotze thought we could wait on. I can help you figure all that out (as best I can and if I can't we'll find someone who can!!) so you can demand that those are done beforehand. So, I'm guessing that you don't know their mutations yet. You must be going crazy. I know I would be. Good thing you are a bit distracted with your schooling. I know it is a bit of a drive but you and your boys are welcome to come and swim or hang at our house anytime. I would love to visit with you and Wyatt is really into playdates with friends lately! Maybe if we plan it right, I can have the other Mom's of DMD boys I know come over and the other ones that I haven't even met yet! Take care and look forward to hearing from you.
Bless your heart! I am so very sorry to hear that either of your sons have DMD let alone both of them. My heart goes out to you! I hope through this site you are able to gain the knowledge and comfort that I'm sure you crave and need. Feel free to reach out to me anytime--I am still learning (diagnosed 6 mos. ago) but am a very good listener! You should join the Texas group on here--it's for families and friends from TX. There might be someone who lives close to you that you could get together with. Anyway, welcome and God Bless!