It's good to talk to you too. The supplements I got today were coQ10 and an anti-oxident drink. I'm started him slowly on all the things I've read about. I plan to start him on Protandim in about 6 months. (Speaking of supplements, if there are anythings you think I should try or things I should stay away from please let me know.) He's only about 22 pounds so I don't want to throw too much stuff at him at once. Dr. Wong is very optimistic. When she saw him 6 months ago, wasn't crawling, no where close to walking, didn't do much. He was barely 15 pounds she was very worried about him. Not necessary the DMD, but some other condition that he might have. He's been through every test you can imagine too, poor baby. Thankfully (aside from the DMD) everything else has been normal. Then he gain 7 pounds. She was thrilled by his progress. She said DMD not really a concern yet. She did however give us a prescription for the nighttime "boots" He doesn't really need them yet, but between the stretches which we've been doing since you told me to and the boots we hope to get him used to them so it won't be a battle later.
I'm sure that you will see results some with the GH therapy. I hope so anyway. and you're right how do you not let a 7 year old gain any weight. I'm sure you will figure out a way, if there is anything I can do please ask.
Hey I wanted to thank you! You were the first person I met on this site and I appreciate the friendship from the beginning about 355 days ago I got Wyatt's diagnosis and I thought my world ended. You helped me realize that hope is a powerful thing, Thanks for helping me get through the toughest year of my life.
I look forward to meeting you in person too. We really need to do that. I hope you and the family are well. Happy New Year. It's really funny that I got this email from you today, I've been out supplement shopping! I've talked to a lot of Moms and got their recommendations. On my way home I started thinking that Wyatt deserves to have 2010 be good to him. All the tests and procedures and hosptial visits he's gone though this year, he really needs a "quiet" year. Take care and please let me know when we can get together.
Thank you so much for the info. We are seeing Dr. Rutter in Feb.
i hope that Ihave the GH issue resolved through Chop b/f then, but am very happy to hear that falling off the growth curve is enough, as Jordan, who will be 8 in Jan, has already fallen off the curve, and has a bbone age of 5. He has only been on the deflaz a year. I noticed that his growth was stopping even before we found out about the dmd.
Thank you so much!! We had her on Monday October 19th. Her name is Giuliana and she weighed 7lbs 6oz. She is a very calm baby and all of us are really enjoying her. I very much look forward to meeting you as well :-). See you in Feb. Tonya
Thanks for getting back to me so quickly about Dr. Apkon. We'll I'm still really wanting to stay with Dr. Wong, but just curious of your thoughts. No new supplements or anything for us, just the same as before. Yes, my husband and I are going to the Feb 4th meeting, I was hoping that you would be there too. Are you coming?? I would love to meet you in person :-). I hope it goes okay with the GH for Will, all of this stuff is just so hard. I have a feeling that Gavin will also need GH at some point here. He is 3 1/2, but really looks 2 and he is really small. We actually did start steroids in August, so far so good. Dr. Wong put us on a very low dose at 6mg and he seems to be tolerating it okay for now. Sometimes he complains his tummy hurts so I try to make sure he eats as much as possible in the mornings. Tomorrow actually I am having a baby girl. My husband and I ended up doing PGD/IVF and it worked the second time. Wasn't an easy process, but we wanted just one more. Thank you so much you give Will a big hug back from us. Let me know how it goes with the GH. Also, I hope you are coming in Feb.
How are you? I hope you are doing well. I just wanted to touch base with you and ask your opinion on something. Have you talked with the new doctor from Denver that is heading up the rehab clinic here in Seattle? I just wanted to find out your thoughts and if anything here may be changing for the better of our boys. I know you usually see Dr. Wong, but I wondered if that has changed or if you have any input for us. Hope all is well with Will.
Thank you for your message, Char. I have gotten a lot out of just reading things on this site, so this is great! Thank you for your e-mail address, I appreciate it.
How old is your son? He is adorable! Colin is 4. I will send you an e-mail- mine is firstname.lastname@example.org. Right now, I am trying to learn as much as I can about the disease, and all of the preventive and proactive things I can be doing. There is so much to learn, but that is a good thing. Thanks again. Jeni
hey char yes i am friend of mindy i can not tell you how exctied i am for the half marathon, i am in tranning with a personal trannier i have jump start with the hills its been two months. i ha ve hip displaya 14 surgers serval dyslexa . cope with server anxity desspion plus serive my father veral and phycial abuse. i am to on misson to find this cure so i have realy the trops, to walk and run kimmy
Wow. That sounds really cool. My question was if you know how they treated patients from the Cinc. area. It sounds like you see several or most specialties on the same 1-2 day visit. Erik has to go totally different days so instead of missing 2 days of school he misses 8. Just wondering if locals get treated the same as out-of-towners. Thanks for your responses.
Thanks, Char. Your thoughts mirror my own. I plan to write to Kiko this week and I will include your thoughts (I won't send your e-mail). Do you want me to give your name?
When I spoke with Kiko I mentioned coordinating appts so that the kids don't have to miss school. She said they did this for clients in Alaska and asked if Cinci did this for local families as well. I didn't know the answer. Do you?
Oh OK. I just saw a lot of familiar faces. It's going to be in Denver next June so maybe there will be more NW people at that one. Mindy Leffler's Dad was there. I introduced him to Susan.
I think Katherine is trying to get another fireside chat in Seattle. That's always a good gathering point.
I'm not sure what her specialty is. She arrives at Children's the first of September. Seattle Children's has a ways to get up to speed, but I got a good feeling from her. They've got to start somewhere. Traveling with older boys (men) is not so fun. Erik (dmd) is 17. He's goind to be a senior at Burlington-Edison HS. We are looking at colleges...big transition. When we go to Children's next week I will ask for more details about Apkon.
By the way, did you see that AVI is moving to Bothel? They are wanting to bring their dmd research up here...maybe some clinical trials are in our future.
Her name is Susan Apkon. I believe she is going to run the muscle clinic under Ross Hayes Rehab umbrella. In other words I think she will be coordinating the dmd clinic at children's. We see Dr. Hays next week so I will ask him about her roll. She seemed very nice, even e-mailed me a couple of weeks ago. She is interested in interdiscplinary clinics, clinical trials and making things work for families. Time will tell.
Char, how are you? We haven't talked in a while, thought I would see how Will is doing. Wyatt has done so many new things recently, he's keeping me on my toes. About a month ago he started crawling on all fours, pulling up and cruising around furniture. Now I'm in trouble, ha-ha-ha. Just yesterday he climbed onto the door of the dishwasher and sat there. Fun, fun, fun!!! Take care, talk to you soon.