Hi Brenna, Lucky indeed!!! I am so hopeful for this trial. Danny needs 45 which is on there short list! How is Sawyer doing? We are about 5 hours from each other :( Maybe we can meet up at some point when we are camping or something, then we will go a little further into Northern WI. I would love to meet and hang out! My son is 6 (7 in August) and we don't know or I should say have any friends close enough! Hope all is well and am very anxious to hear about your experience with the trial :)
Hi Brenna....my name is Karen and we will be taking our son Lucas on the 26th of this month to Columbus for his evaluation for the AVI study. How was your experience???? When I spoke to Dr. Mendel last month,he still didnt have many of the details. I hope this is what we've been praying for, for all our boys!!! Will touch base after our visit!!!
Hello Brenna. We have Ethan (our 1 year old) enrolled in a research study at the hospital in Minneapolis for DMD boys 3 and under. Joseph is not enrolled in any clinical trials. Exon 51 wouldn't work for him. He and his brother have the deletion 45-50. I believe the only exon skipping that will work for them is exon 44 so unfortunately we wouldn't even be eligible for any exon 51 trials. Sorry!! Please feel free to contact me anytime! We will be coming up to Minneapolis on May 6th for Ethan's research study. We as in Ethan and I as his brother has school. I hope the MDA office gave you my e-mail and phone number. If not my e-mail is firstname.lastname@example.org. I have instructed the Madison office to give my info out to any families that ask so hopefully they have been. Talk to you soon.
Unfortunately, we have not participated in any clinical trials to date. Cullen is scheduled to visit Dr. Day at the U of M next week for screening for possible future trials with non-ambulatory boys. I'd like to hear more about the exon skipping trial Sawyer is taking part of. What is his deletion range? We have a daughter in school in Mpls. so we travel through your area often...It would be nice to meet you and your family sometime..
Hello...my name is Candace Miller. I have a 4 year old diagnosed with DMD in July and I am also 22 wks pregnant with another boy (just found out yesterday). I saw you were from WI so I thought I would drop a note and say hello. I live near Madison and have been searching for anyone nearby (WI or any neighboring states).
I heard you got to meet Xavier and my Sister in Law at camp yesterday. Suzie said that Sawyer is quite a cutie! Xavier had an absolutely awesome time at camp. He is quite unhappy he had to come home. I hope things are going well with you. Our next 6 weeks are crazy but after that I would still love to try to get together sometime!
Hi Brenna, I have a son who is now 17 years old with duchenne and he to was diagnosed at that age of 6. His father and me did decide to put Dillon on steroids as soon as we found out (deflazacort) and I have no regrets on doing this. This enabled him to walk longer than other children we know. He did not go into his wheelchair until he was 12 years old and I am thankful for that. He just recently went through back surgery which is alot later than most kids with duchennes. I hope that this helps you out if you have any questions please do not hesitate to contact me. Penny
HI Brenna, Just thinking about you today. Hope you have a good visit with the Dr today. Well, you know what I mean. I hope you like him and hope he answers all of your questions. I hope you walk away with a good feeling about your Dr. Have a great time on your vacation. We went on vacation shortly after our diagnosis also. I tried to just focus on the present and not the future. Just think about today. Take Care, AMY
I know how you feel, we are not having anymore children either. It is really suprising how many parents are nurses. Patrick was 2 when he was diagnosed and he will be turning six in January. We are having some behavior issues right now and I am looking into changing from Prednisone to Deflazocort(hopefully less side effects). Take care.
sorry I haven't gotten back to you. I know your appt is coming up fast. Why don't you email me at my home email email@example.com and maybe we can talk on the phone to help you get ready for your appointment. I think Amy W and I are going to try to get together this weekend if you want to try to meet us?
Oh, I am so sorry. How old is Sawyer? This is a total roller coaster ride. It does help to be a nurse so you can understand all of the medical terms. When I first started to research it was like reading French!! I bet you have some great peds Drs and nurses backing you. You are lucky to be seeing Dr Day. I have heard he is one of the best dmd docs in the country. I don't know if you know about cureduchenne.org. This is another site that has helped me from the beginning. Let me know when you would like to get together. Personally I was a puddle for the first couple of months!! Then the more I read, the more I could talk about it. It is still hard, but at least I can carry on a conversation now. PPMD has helped me more than words can say. Hang in there!!! AMY
I live in Rochester, MN. I have asked Jennifer Shumsky to meet with me sometime also. Maybe the three of us could meet together. I have a little guy who just turned 4 in July. We have lived in the dmd world for a little over a year now and it is hard to find people who live near us who have this. I would love to start a little support group. I used to work at Mayo clinic in Peds (desk work and rooming patients). Now I bring Alec to all of the drs and nurses I used to work with. It is so hard to be on the other side of the fence. When did you get your sons diagnosis?
Hi There, We did not hesitate to put Xavier on Deflazacort. We chose that over the predinsone as we felt it had a lower side effect profile. We thought really hard about steroid therapy. Dr. Day had us think about it for 6 mos. In that time we had Xavier's tonsils out as that was something that he needed done and we wanted that done pre-steroid. All the research show the benefits of steroid therapy and our feel was if he had side effects we would deal with them as they came, but we had to give him every chance possible to last as long as possible until a cure is found. We are very lucky that he has not had significant side effects and he is doing FANTASTIC! The side effects he has had is increased hair growth on his back and stunted growth. He has only grown about 1/2-1 inch in the past 2 years and that is something we are looking at, but that's not such a bad thing. We also did baseline psych testing at Gillette before you start steroids (that is something Dr. Day likes to do) so that you can track any behaivior changes. We do have to pay quite a bit of money to import the deflazacort, but we have never doubted our decision to choose that med over the prednisone and we have never doubted our decision to start it. We also do some supplements (calcium, D3, CoQ10, MVI) and he just started on Prilosec for stomach pains we associated from the steriods. Xavier did start swallowing his pills at age 4 1/2 so it can be done and that makes things alot easier when it comes to meds. He prefers to swallow meds to chewing them or liquids.
Hope this helps a bit and I hope you are all hanging in there. I am serious that we should meet for coffee sometime. Maybe us girls first, or just your and your husband and me and mine first and then with kids next time around. It's up to you!
I just joined PPMD. My 7 year old son was diagnosed with DMD July 6th. Our world as well fell apart on that day. I can so feel what you are going through. Our story is so similar. Disbelief for sure. My blog is www.thelamberstonstory.blogspot.com.
Please visit it, I am sure you will relate strongly.
I have co-workers that drive in from Hudson, you are not to far at all! Your story sounds like ours. I think we all have that similar story. We started Xavier on Deflazacort soon after his diagnosis and have not regreted it for a minute. We too have a younger daugher, Erica is 3 years younger than Xavier, in fact he was diagnosed on her first birthday. We definately should try to meet up sometime. It really does help to physically meet other families either just as adults or as families. I'm more than willing to drive to you or we can meet half way. We are just 20 min south of the cities in Shakopee. Take care and we'll talk soon! My email is firstname.lastname@example.org
Oh goodness. I am so sorry for your heartache. I received my diagnosis for my son on Feb 13, 2007. I was expecting it though since in December of 2006 I had already cried my eyes out hysterically and pretty much knew it my heart of hearts that he had it. My son just told me the other day that he hates MD and yesterday I had to tell him that I do too and that if I could I would take it for him, but that is not what is. So, we discussed what is and that we can gather our strength from our faith in God. This is a rough road. But it does get a little easier to deal with as time goes on. Thankfully, we now all have this great community resource from PPMD to connect and help each other through as best we can. Hang in there.