Have you recieved my messages? I forward them fromJason @ Rush. I amwriting to ask you your age and educational level. I am working on my demographic tables and forgot to ask when we met. I willshare with no one! my personalemail is email@example.com
Hi, I am wondering if your eldest son would be intrested in helping me with research? You can see more on my profile (donna Gluck) OR my web site. dgcounselinginc.com
I am a doc student trying to finish my dissertation. Meeting with boys that have DMD. Asking them to draw a picture and tell me story about it.
Where in Rockford did u live? We live in Loves Park. How is your son Nick doing? Is he on steroids? Do you ever feel that u should move closer to Brenda so later on the travel would be easier on you? Also, Justin (61/2) and i are in this study down in Gainesville Florida. We go in the month of Feb. and August for about 4 or 5 yrs. Thank you for writing. Johanna Schroeder
Deacon will do great in a Early Childhood classroom in the fall. With all the therapists at the school it's made a world of difference for my boys. He will get an IEP that will stay with him throughout his schooling so other schools and staff there will know that he needs some extra help. I never minded asking for extra help for my children b/c their worth every cent. Thanks. I'm so happy i could help and share some of my stories with you. Johanna
Thanks I will totally check it out. All his nuero. here recomended was putting him in early childhood in the fall. I'm not sure what all they do there? Physical therapy maybe? Besides large motor skills he has no other delays. Thanks for the tip. It's always nice to have someone to talk to.
Deacon should be able to still receive services through the state. Even though he's past the 3 yr. mark i believe he should receive some therapy. My youngest who's going to summer school and gets speech. I also have him in individual speech through a hospital center. Also check around with hospitals b/c they might have therapy services. Thanks. Johanna
Deacon was a late walker too, about21 mo. also very healthy,besides this. He did receive therapy thru birth-3 program, but now that he is 3 he no longer qualifies. Glad we could talk.
i'm sure Dr.Wong will help too. I have only heard good things. keep in touch. Alicia
Our oldest Justin who will 7 in Sept. He did everything late. He walked at 18 months and i got very concerned so i got in touched with Children and Family Connections and started therapy right away. They are both very healthy except for this disease. Have you checked around about starting him in some kind of therapy? The boys were also fitted for night braces so while they slept their heel cords were stretched. I'm sure Dr. Wong would maybe want that for him. But starting the steroids have helped my boys very well. Dr. Wong is an excellent Dr. and i'm sure she will make you feel better and your son. Johanna
Thanks for getting back to me! Did your boys show symptoms at an early age?If not what made you suspect something was up? Deacon never crawled,and had a hard time getting into a sitting position,so @ about 16 mon. our Ped. sent us to a nuerologist and for P.T. nuero. ran a bunch of tests, not really telling us what we were looking for. I was a little uncomfortable, so asked my Dr. to refer me to Mayo,in Rochester,Mn They did a muscle biopsy there in mar.08 And in May told us it was "probable Becker" And said come back in a year. No special diet,no meds,no P.T.nothing. Istarted reading on here and thought more could be done for him. He can't run,jump,climb,and he falls a lot. I heard about Dr. Wong and emailed her.the next morning Shirley called me. she was amazing, I finally felt like someone cared, she should call back sometime this week to set appt. I don't know much about any of this, but would love to see a differance in Deacon's activity level. as of right now he gets no therapy, only me stretching his heel cords. Hoping Dr. Wong will help. she really sounds great. Sorry for the book:) Hope I didn't scare you off. Get back to me when you can. Thanks for listening.
Our Ped. told us about a specialist in Chicago. We saw the Dr., but i wasn't that impressed with him. He didn't seem very concerned and willing to start Justin on steeroids. My husband read a lot on Parent Project MD and he was thrilled to hear such great things about Dr. Wong. I emailed Dr. Wong about our situation. So she emailed me back right away and told me Shirley would call me and schedule an appt. Well, in Oct. it will be 3 yrs. since we started seeing her. Dr. Wong and her staff have just been wonderful. Oh, I also got a call from Dr. Wong on my cell phone prior to going to Cininnati Ohio to see her. That's how caring and thoughtful she is.
Our boys currently are taking Orapred ODT (prednisolone sodium phosphate orally disintegrating tablets) Equivalent to prednisolone 15 mg. The steroid is working wonderfully b/c they both are running faster and jumping a little bit more. The steroid is a chewable and grape flavor.
Are you getting any type of therapy for your son? take care. Johanna
Did you take your boys to any other Dr.'s before you started seeing Dr.Wong. We are waiting to get an Appt. w/ her. Her staff was super sweet. Have you seen any impruvement(sp?) or side effects from the steroids? Sorry for all ?'s,but ouor Dr's don't recomend anything for my son. He just turned 3 and has always had motor issues,I'm hoping Dr. Wong will offer me a little more info. Get back to me when you get a chance. Thank you