"We're very lucky not to have had the cognitive or developmental issues, but the behavior is tough. Hard to tell whether it's frustration in not being able to keep up, or DMD. His docs say he does not have ADD, because he CAN…"
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Tagni McRae
- Female
- Dallas, TX
- United States
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Tagni McRae's Groups
Tagni McRae's Discussions
DMD a stem cell disease?
Started this discussion. Last reply by John Gorman Dec 22, 2010. 19 Replies 0 Favorites
DMD a stem cell disease
Started this discussion. Last reply by Antonis Nikolits Dec 10, 2010. 1 Reply 0 Favorites
Tagni McRae's Page
Latest Activity
Tagni McRae commented on Lisa Jones's group Cincinnati Children's Hospital Medical Center"What are the specific behaviors? Very short fuse? Trouble dealing with frustration? Won't listen or follow instructions? Mean to little sister?
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Tagni McRae commented on Lisa Jones's group Cincinnati Children's Hospital Medical Center"Most of the people I have heard about got it done locally. But I'll bet Dr. Irina or the others at Cinci could make a referral. We have not had it done yet, but take our son to a licensed social worker for counseling. Not sure if…"
Tagni McRae commented on Lisa Jones's group Cincinnati Children's Hospital Medical Center"We also had behavioral concerns and she discussed it with us, although she's not a behavioral specialist. But she has a lot of patients, so can refer to their experiences. Know that lots of the parents in our area have gone to…"
Tagni McRae commented on Lisa Jones's group Cincinnati Children's Hospital Medical Center"We have gone to Dr. Rybalsky for several years and we love her. She is really great with Graeme and passionate about treating DMD in general. Also very knowledgeable about research and related topics. "
Tagni McRae replied to Cathy Johnson's discussion 10% for Height in the group Early Years (diagnois-age 6)"My son has been on Deflazacort for a couple of years and he has moved to the 10th percentile for height, too. In Cincinnati, Dr. Rybalsky told us that as long as he's still on the chart, he's o.k. The issue, I think, is if his…"
Tagni McRae joined Lisa Jones's group
Dr. Wong-Cincinnati Children's Hospital
For families who take their children to Cincinnati Children's Hospital for DMD/BMD medical care.See More
Tagni McRae added a discussion to the group Deletions
Deletions of exons 6 and 7
Does anyone's sons have deletions of exons 6 and 7? Looking for ideas about what this means to the progression of my son's DMD.
Profile Information
- About me:
- I work in communications at the American Heart Association, am a married mother of two, striving to balance work and family life and do all I can for my son, Graeme who was diagnosed a year and a half ago.
- About my family:
- Married to Richard with a two year old daughter, Keira and five year old son, Graeme.
- Name(s) of child(ren)/individual(s) with Duchenne:
- Graeme
- Age(s) of child(ren)/individual(s) with Duchenne:
- 4-6
- City and State:
- Dallas, Texas
- Country:
- USA
Tagni McRae's Photos
Comment Wall (14 comments)
- At 9:45pm on October 8, 2009,
Darcy Tumminello said… - Yes, sounds great. The manual chair will be a long way off..
Did you do anything fun in Cinci?
Darcy
- At 8:03am on October 8, 2009, Darcy Tumminello said…
- Tagni,
Go to MDA and they should help you out. Call a local office. I did not have to use insurance. MDA will provide.
- At 9:15pm on October 7, 2009, Darcy Tumminello said…
- Tagni,
How old is Graeme? I would make decision on his size. You will notice increased strength and engery once he starts the meds. He will probably not stay in the chair that much..of course unless long distance. I only started using the convaid stroller chair I believe last year and it's great. He only uses it on long distance trips. I would go for one of the stroller type chairs. My suggestion only. Good Luck!
Darcy
- At 5:38pm on October 2, 2009, Darcy Tumminello said…
- Tagni,
Let me know how it went and what you thought?? GREAT HUH Did you get to have a little fun while you were in Cinci?
Darcy
- At 3:02pm on July 10, 2009,
Christine Stalling said… - Hi Tagni, we stayed at the Holiday Inn Riverside. I was really happy with the place, very nice people and the place was comfortable. The location looks a little sketchy but it was a very short distance to the hospital and to nicer parts. Kind of a funny little section. I would go back. I am so happy that you will be heading to Cinci so soon. I will look forward to hearing how it goes.
- At 7:37pm on July 9, 2009,
Wyatt's Mommy, Melissa said… - We weren't able to attend the conference, my husband did Run for our sons 1/2 marathon in Seattle, it was the same weekend. I heard Denver next year, is that right? We are looking forward to going in the future. I'm glad you got to meet both Wendy and Dr. Wong, and you're right they are great. Best of Luck.
Melissa
- At 5:49pm on July 9, 2009, Wyatt's Mommy, Melissa said…
- Wendy is incredible. She's this tiny little, red head that is everywhere. Every appt we had she showed up at, just to see how it was going. We scheduled a last minute CT scan and she showed up at it. She's amazing, you are going to love her. You are going to get so much good information and doctors who truly care. In fact, Dr. Wong called my family doctor in Washington personally to talk to him about the PLAN. Who does that seriously? Dr. Wong is one of a kind. And I mean that in the most amazing way. The second we walked in the door and met Wendy in person my husband said, "Wyatt is always coming here, no matter what." Let me know how it goes. September right? We are back the first week in December. I am so happy for you and your family that we get to go to Cincinnati. We feel blessed everyday that they took Wyatt as a patient. Talk to you soon.
Melissa
- At 1:08pm on July 8, 2009, Wyatt's Mommy, Melissa said…
- Hi. You're kids are beautiful. We live in Washington State and ended up getting pretty good airfare rates by flying into Columbus. It's about a 2 hour drive, which wasn't bad, but we made the drive after a over night flight. (I won't do that again, crazy, up all night then driving 2 hours, no way) But since there isn't much traffic, the drive is pretty easy. There is an amusement park just outside of Cincinnati that was pretty fun. Our son is only 16 months, so it wasn't that big of a deal for him, but your son would love it. We stayed in a hotel in Blue Ash, which is about 1/2 hr from the hospital. It's a nice area, resturants and a mall near by. I wish you the best of luck. I didn't really understand why everyone I talked to on PPMD Community encouraged us to take our son Wyatt to CCHMC until I got there. Everyone is so wonderful. We are so thankful that there is a doctor like Dr. Wong and her staff too. Your son is in the best hands going there! Keep in touch and let me how Graeme is doing and of course how your appt. goes. Since your son is a preschooler and not a baby like ours it may not matter, but if possible give yourself a day in Cincinnati before and after your scheduled appts. We left on Friday morning, which in our case made it difficult. Once we got there they wanted to do additional tests on Wyatt that they couldn't get scheduled because we were leaving so early on Friday. If we had been at CCHMC one more day then all the things they wanted to test could get done. Example. When we got there (May 26) they decided that they wanted to do an MRI. Well, they couldn't get it scheduled so I need to do it in Seattle. It can't get done until September. (that's 4 months later). Our son was only diagnosed 6 months ago, so it's new for us too, but if you have any questions please email me on this site. I truly hope you find what you're looking for at CCHMC, we did.
Melissa
- At 11:41pm on July 7, 2009,
christine good said… - Tagni,
We just got back a few weeks ago. We flew from OR. We actually got 3 free flights thru operation liftoff. You can apply online on their website. Also look up Angel flights.
- At 10:27pm on April 26, 2009,
Sarah Combs said… - Hi Tagni. My son Baden is 8 and my son Porter is 2. We only see Dr. Iannacconne. We have always had good experiences at Childrens Dallas. We asked Dr. I to be very upfront and direct with us and I think she would have been than way even if we hadn't asked. I think her directness turns a lot of people off. I really enjoy Heather Gilbreath, Dr. I's physicians assistant. Baden sees Dr. I every four months and Porter every 6.
We live in Flower Mound. I would be happy to answer any questions you might have.
sarah.combs13@gmail.com
Would be great to hear from you,
Sarah
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Paint for Peyton to end Duchenne
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