Yes, I have heard that too. I can't wait to meet her. There is a meeting at the University of Washington on Feb 4 that my husband and I are attending where we will meet this new doctor (at least that's the plan). I can't wait to hear what she has to say. From what I understand she has big plans to improve our MD clinic in Seattle.
I don't want you to get me wrong, the doctor that told us there wasn't anything that could be done, was not a MD doctor. I liked the MD doctor in Seattle alot, however, no matter how much he means well, the system isn't set up to allow him to do his job as effectively as I know he wants to. The staff there is wonderful, I truly don't have anything against Seattle Children's, I just think the communication system needs to be improved. And from my understanding that's what the goal of this new doctor is.
I heard that now you have a very good doctor in Seattle. Mindy Leffler posted something about the new doctor and she got very good feedback from her previous patients. So things got better it looks like.
We asked Dr. Wong about CoQ10 at our first appt (when Robert was 8 months old) and she said that 50 mg would be fine at that time. I increased the dose to 100 mg when he was 18 months. I started giving him 1/2 Protandim when his weight was 25 lbs...I read that we should not exceed 1/2 Protandim per 25 lbs so I thought that would be an ok dose. Now, it it difficult to make him take Protandim b/c of the taste. I ground it and put it in food, but some days he does not take it so I'm not sure if it helps since I cannot make him take it every day... I also recently decided to cut the half pill in 4 small pieces and give it with yogurt which worked great for a while but now he doesn't eat the yogurt anymore. :-( Very difficult to get that one into him. CoQ10 is liquid so that's fine. I do not know Mellisa, as time passes I feel more and more the need for a decent treatment for our boys, not what we are doing today... I do not feel like that's good enough for this very aggressive disease, it is too aggressive to make a difference using only vitamins, supplements and steroids... The last couple of weeks were hard on me, 5 DMD boys died, 4 ages 16-17 and one 31...
I am interested in starting Wyatt on both Protandim and CoQ10, but I have no idea how to determine the dosage and when the right time to start is. I think when he's 2 (in about 3 months) would be a good time. I would apprecaite any imput you might have on that. Where do you get Protandim and how much do you give Robert. How much does he weigh? (I'm sure the dosage is based on weight, right?)
About exon skipping. She said that the trial was to begin in March, but she hasn't received the protocal yet. She thinks March is still a possibilty but she's hoping by May at the latest.
What I meant by he is doing better than we would have done is that our local doctors didn't even recommend vitamin D. They told us there was nothing that could be done at all. I don't believe that. I think making the decision to take him to CCHMC was just the first step in making us advocates for him. I too have not been advised to do anything other than vitamin D, but because of CCHMC and going there I have met countless people (parents) who I trust that have advised me of the other suppliments and things that are out there. I have made a network of friends who will help us fight this battle for Wyatt.
You know what I think the biggest thing is, is that they care about our kids (not that my local doctors don't) and want to give them the best care. They don't leave any stone unturned. They want to have the full picture. Wyatt is not having any DMD symptoms at this point. But that isn't stopping CCHMC from dealing with other issues that he has. I feel like they are encouraging us to fight Wyatt's battle not simply give up like our local doctors made us feel. I'm not sure he has progressed any differently by going to CCHMC, but I feel like they have a plan in mind and they listen to our concerns The last time we saw our local doctors they didn't even examine him. They just said, okay, looks great, any questions, okay go home. That's not the kind of care that we want for him.
I just read your blog about your recent Cincinnati visit. You said that Wyatt is doing so much better than he could have b/c you decided to go there. We also go to Cincinnati and Columbus Childrens. Robert is 2 year old now and doing very well. Our first visit at Cincinnati was when he was 8 months old (he was diagnosed through newborn screening). Well, I do not feel that anything we are doing/did has anything to do with his progression/development. We were advised to give him Vit D3 that was it. We also give him CoQ10 and Protandim (we were not advised to give those to him, just our decision). Other than Vit D3 we were not advised to do anything by Dr. Wong so I definitely cannot say that he is doing better now b/c we went there. He developed quite fine so far, started walking at 15 months, his speech is good, at 2 he has a large vocabulary (100-200 words), he sings (picks up new songs very fast) and he knows all the numbers and most letters. Of course, that doesn't have anything to do with the doctors we are seeing so I was wondering what you were advised to do that makes you confident that his progression is better due to attending Cincinnati Childrens.
Also, did Dr. wong say anything about exon skipping, both Wyatt and Robert are candidates for skipping 51.
Thank you! I am a friend of the Leffler family. Since you live in Washington, perhaps you'll be interested in an upcoming event I'm helping the Schneiders and Lefflers with at UW:
SAVE THIS DATE!
Thursday, February 4th, from 7-9pm at the University of Washington
DMD families are invited to get together, get acquainted, and hear from local area researchers and doctors about projects that could affect all ages of boys with DMD. Presenters in this non-fund-raising event include:
>Dr. Susan Apkon, the new Medical Director of Rehabilitation Medicine at Seattle Children's , speaking about her vision for this clinic.
>Dr. Stanley Froehner, UW scientist speaking about his current research project investigating the effects of Viagra on strengthening the heart muscles in DMD mice.
>Dr. Rzyard Kole from AVI, speaking on AVI's exon-skipping research.
>Dr. Jeff Chamberlain, UW scientist speaking on micro-dystrophin constructs for gene therapy. (Tentative)
Attendance is limited to about 90 people, so if you know you can come, please RSVP asap to John Schneider at firstname.lastname@example.org or 206-547-7698, and your space will be reserved. We'll send out a confirmation mail, along with directions in mid-January.
Please pass this on to any DMD families you know who may wish to attend.
Just 17 weeks left. I'll be 22 weeks on Saturday. So Feb. 11th is what I'm planning....we haven't officially scheduled it. I am having a planned C-section as I am having my tubes tied as well. So many birthdays in February in my family and my boyfriends. Mine is on the 9th. My sister, Stefani, is the 9th and my sister, Mikaela, is on the 17th. My step-dad is on the 13th. JoJo is on the 24th. My boyfriends sisters are on the 3rd and 12th. I also have probably 4 or 5 cousins in February too. It's like Christmas all over again with our family!
Hello! How are things with you? Just found out we are having a boy. He's due on Feb. 20th but we will probably be having him on the 11th as I am having a planned c-section. Ethan Scott Heimlich Hope all is well!
THANK YOU so much. Yes, we did recieve the check. I am so sorry I haven't responded sooner. I don't check this email often... but yes we did receive it. And thank you so much for doing your event.
Have a great weekend.
I've been good. Fighting a kidney infection but good otherwise. The teacher at the school called me on Friday and said she went to the main office and made sure they put the paperwork in the mail so I should get it tomorrow. Then all I have to do is sign some paperwork, walk it across the street to her, and set up the evaluations. Hopefully he'll start in the next few weeks. How are thing going with you?
Thanks so much Melissa. We have been looking into going to see Dr. Wong.Thanks for the info on the supplements. What is the Vitamin D for? my son Noah takes a multi vitamin. He also receives PT through Early Intervention in PA once a week for an hr. He started walking independently at 18 months old. We don't have any problems with weight. Thanks again and I hope to keep in touch with you. Have a good day!
Absolutely, you will be at a perfect place to do very, very well. I think you will make your goal, I know you will do everything you can to raise money and awarness. I'm so glad we met in person, I think you are such a wonderful gal!! I'm so glad you are all set with your Kohl's as well, that is awesome. I am sending you all the best mojo possible and I know no matter what you will do great :-). Tonya
Thanks for the message! Microsort ended up not working out before we even got through the cycle (long story but would be happy to share if you have questions). We are now planning IVF/PGD but feelng a bit alone with that as well. Hope your little one is doing okay- I have a brother with MD so have known I was a carrier since I was 12. Some days are hard but I am glad science gives us some options.
Melissa you are a blessing...we are slowly figuring things out, we still don't have a definite diagnosis, but things, as of now aren't looking too positively as Trey's CK levels have jumped from 29000 to 32000. I am completely devastated...although I have alot of support, from the military, family, friends, all of you. I sit here and wonder how in the world I am going to make it through this. I look at him and think how in the world could this be happening...and why. He is my light, and knowing that 'my little sunray' is going through this is the most difficult thing in the world. I sit here and understand that we have no choice, but what keeps the tears from falling, keeps you in the here and now? I keep thinking about the future and I know that there are some great studies out there to help our boys, but what if it isn't soon enough, it is tearing me to pieces.
We actually haven't been to see Dr. Wong yet -- we go May 2010. I'm excited about seeing her and her team, and looking forward to a vacation! We are going to drive there, but take our time stop to see sites in several states along the way.
We didn't go swimming as much as I wanted this year. Next year, we're doing lessons for Holly and Mommy and Me swimming with Max come heck or high water!!