I'm hoping that he will want to drive. I signed him up for the online class to get his learner's permit and have taken him out a few times but he doesn't feel very comfortable. When we're in Cincinnati I'm going to see if the occupational therapist can check him out and give an official opinion on whether or not he's strong enough to drive. I definitely think he is, but he's extremely cautious and I think the only thing that would convince him is an "official" opinion.
I tried to get Jordan into that growth hormone study but couldn't because he started puberty already. I'm going to ask Dr. Wong about prescribing it though since he's only 5'3" and it's bothering Jordan a lot. Hope it helps Jonluke!
We kind of go in cycles with stretching. Right now we're doing stretches together at night--hamstring and heel cord. He can still get to 90 degrees on heels and doesn't toe-walk but I have noticed that he is flat-footed now. I think that happened because he made such a conscious effort not to walk on his toes. His calves are HUGE-definitely bigger than his thighs. We did the night splints when he was first diagnosed for about 6 months but he hated them and his flexibility was still so good we didn't push it. He hasn't worn them since. No problems with finger flexors that I'm aware of. He's on the computer constantly--not sure if that helps or hurts.
So good to hear from you! I hope Jonluke has a great first year in middle school!
Just checking in to see how Jonluke is doing. It's so hard to believe Jordan is a junior in high school! He's still getting around remarkably well and without a wheelchair. The counselors and teachers at his school are wonderful. They have done everything we needed without hesitation. He's really getting interested in computer programming. I'm just so happy that he's interested in something other than video games.
Guess that's all for now. Write when you can! I would love to hear from you!
Jordan was not diagnosed until he was 10 years old but looking back on it, there were signs when he was 5 or 6 that we completely missed. By age 10 he started pulling himself upstairs with his hands and was toe-walking. We took him to the pediatrician, who had never had a patient with DMD before, and after several tests was finally diagnosed.
Yes, Jordan has an IEP. We have been extremely fortunate that everyone at both of the schools that he's been to have gone above and beyond to accommodate his needs. Like you, I had to educate everyone else about Duchenne. I found that after talking to his 5th grade class, all of the kids were more understanding and compassionate.
Yes, Jordan is taking Deflazacort daily and started about 4 years ago. His initial dose was 30 mg but Dr. Wong reduced it to 22.5 mg because his face got really puffy and he was having trouble sleeping at night. He has been on that dose ever since and now weighs 85 lbs. We have never had any trouble with him being overweight because he's such a picky eater. It's not so much the texture or consistency...he just doesn't like fruits or vegetables. But, he loves fish, chicken, steak, potatoes, pasta and anything sour (Sour Patch Kids). Hope this helps. Have a good day!
Great to hear from you! This mutation seems to be much milder than most of them...most people don't even know that Jordan has a disability. He started high school today and I think it's going to be a great year! He's very bright and is in 4 PreAP classes AND the engineering academy. I worked very closely with the head counselor at his school to schedule his classes as close together as possible, got him 2 lockers, an elevator key and a handicapped placard that his friend can use to park just outside the building. He didn't complain at all about the walking. I am hoping that we can make it through high school without a wheelchair. Would love to keep up with you and Jonluke.
We actually haven't had any night splints made here yet. Our last pair were made in March 2007 when we still lived in Cincinnati. I've been given a name here in the area, but I have not idea right now where I put it. I'll let you know once I find it. So far Sam's braces still fit since he's barely grown.
I'm glad y'all had a good visit with Dr. Wong. We'll be up there the 16th & 17th of February.
Soooooo glad to hear that he thinks it's bmd!! Of course no md would be the ultimate:( But, if you are like me, at this point, I will take whatever break I am handed=) Lotze is nice--I just wish he was more aggressive and up to date! Like you getting the feeling that it wasn't a big deal to know if it is for sure bmd vs. dmd. To you as a parent it is a big deal and also treatment for the 2 are different--if he was dmd, steroids would be highly pushed. Once you cross to the bmd, I would guess, the negative vs. positive use of steroids would have to be considered. (If it's severe bmd, I'm sure that Wong would want him to be on steroids--that's what she told us about Wyatt.) We had already started Wyatt on steroids when we got his biopsy results so, Wong wanted to leave him on until our next appt. in Feb. just to see if there was any improvement. I am thinking we might opt to take him off then, es. if he has wt. gain or any other neg. side effects, but will see what she thinks.
And your cardio was right, the steroids do help his heart (and the lungs)--another reason I would want to know for sure which kind to be able to assess the benefits, etc.
Glad to hear that you got an earlier appt.--that's a rarity=) You probably already knew this, but Dr. Poysky is on the ppmd board and his son also has dmd--so great resource for us here in TX!!
Thx for keeping me updated!
I came across your post to Eileen about heart complications and was wondering where you talked to a Cardiologist Geneticist? We are going to see Dr Wong in November and I can't wait as I hope to have some real answers.
Don't let me fool you--I really am just starting this journey but I have a read a ton on dmd. My problem is retaining the info and relaying this to others, as it is all sooo complicated and over my head. I have not been to the site you mentioned but sounds like I should. I sure am hoping that your son will fall into the "non-conforming" category. This whole issue with not measuring the dystrophin is so odd to me. Why did they do the biopsy? What were they hoping to learn from it? As far as getting Lotze or Wong to re-run the test on the tissue, my first choice would be Wong but I also wouldn't want to wait until after Jan. to know the answers. Maybe you could email one of the nurses and ask what lab(s) would do the testing and then see if it is the same as Lotze would use. I know someone who had a biopsy done and the lab didn't keep the sample frozen, so the biopsy was for nothing. I would definitely ask Lotze about the results--maybe he can get a complete copy of the report or be able to interpret what the result of "abnormal amts. of dystrophin" means. And then, if he can't give the info. based on the report, I would ask him how you could get the amt. of dystrophin measured and what that would entail. If they have to send it somewhere else, I would be wary of doing that (esp. if it is Athena labs--this is the lab that didn't keep the sample frozen. Wong said it happens a lot with Athena.). I would hate for the lab to mess up and send it "thawed." I would tell Lotze you will think about it and then ask Wong what she thinks. Sorry to go on and on but would just hate for that muslce tissue to get wrecked--it potentially holds some anwers for you.
Good luck tomorrow. And let me warn you that there were a lot of kids in wheelchairs in the waiting room. It was pretty depressing. Now all of those were not dmd kids but we found the waiting room to be a real slap in the face. The kids were darling but it was hard to face reality. Lotze isn't a dr. full of personality but he was nice and never rushed us. We asked a lot of ?'s and he did his best to answer those according to his knowledge. We had already done our homework and knew he was off base on most things he said but............THANK GOODNESS for DR.WONG!! (and others like her.) Lotze does offer an Rx for deflazacort--I got one to use as a "back-up" in case I ran out of meds and needed a refill before I saw Wong again. (Although, I bet she would fax a script for you; idk.)
Hope all goes well tomorrow. Keep me posted! Jill
P.S. You should swing by sometime when you vist your brother or maybe when you are over this way shopping, we could meet for lunch=)
Hi Kathy! It's been a while since I have heard anything from you, so I went to your page to see what was going on in your life and saw a post that you wrote to me but you posted it to yourself (can't tell you how many times I've done this=). Sooo, I never replied to it=0) (I cut and pasted it to my page so I could add it to our "thread.")
Have you had any luck in convincing your husband to see Dr. Wong? Lotze is just not as current on dmd as Wong is. For example, Wyatt has a deletion of 45-46 and, still hoping he might have bmd, I asked if that was an area of deletions for bmd. He said no, that bmd deletions were in the "lower" #'s--like exons 1-20. Well, I asked Wong about this and she said 45 is a hot spot for bmd. I wondered why the heck Lotze wouldn't know this. The first time we saw Wong, she walked in with papers written about Wyatt's deletions and told us that his was usually in-frame and usually leads to bmd. We already knew this but it was so nice to finally have a doctor that showed us she had a vast knowledge in b/dmd --and had done some homework before we ever met. As it turns out, the results from Wyatt's muscle biopsy that he had done in Cincy, show that he has 25-50% dystrophin and she told us that puts him in the mild to moderate bmd category. (We are so thrilled!!!! We were hoping for maybe 3-10%, which we were told is the minimum amt. for dystrophin to be functional!) So, Lotze was a bit off in saying that there was no way this was bmd in the 45-46 exon range. I think the other great benefit to Cincy is the comprehensive care approach. She has put together a team that is so knowledgeable about dmd and stay current on (most) research areas.
I had copies of Wyatt's charts (from Lotze and his ped.) sent to Dr. Wong so she could review them before seeing Wyatt. (And she does review them--she referred to things in his ped. chart several times.)
Did you get an appt. with Lotze yet? It took us about a week to get our appt. booked--for 2 mos. out. Waiting was so difficult. I just wanted answers pronto--I did not want to wait. Then we had to wait 2 more mos. for the dna testing results after our initial appt. (To be fair--this is pretty normal I think. It wasn't Lotze's fault.)
Have you been able to make head or tails of any of your lab reports yet? Or are you just going to wait for Lotze or Wong to look at them?
I am not in Fairfield--I live in Coles Crossing, which is 290 & Barker Cypress. (Just a couple of exits down from Fairfield.) My daughter's best friend lives there and they both were life guards there this past summer.
I have never been to the Renaissance Festival-- I have always wanted to go but stuff always gets in the way. Maybe this year=)
Let me know what's going on in your world--would love to hear from you.
I picked up on the discussion regarding deletion 3 to 7, our boys most probally have this, but here they did not test for 3. Anyway regarding the heart, Justin now 8 has been on heart medication since 6. His heart was noticeably weaker than lower normal, he is on a drug called tritace, and basically since then has had a normal heart function.
He is on steroids, calcium and vitamin D. We also let our boys live a relativly normal life in activities, JUST manage the strenious excercise without exception. We beleive that we want to preserve their mobility and health so they can enjoy the little things a little longer, why go through all the potential risks and side effects of the drugs and they do not get a chance to benefit from this.
I am also curious to find the common symptoms and conditions for simular deletions, but so far for every match I have found, therer seems to be as many mis matches.
Hope this gives you a little more info in your quest.
Well it was their hearts were what gave out in the end. But that was with no treatment. Now they really watch their hearts. In OH they will do a cardiac MRI and or a echo. So far my boys hearts are in really good shape. You will see Dr. Cripe in OH and she is really good. Our regular doctor put them on Losartan a couple of years ago because there was a promising study that it can really help with DMD plus it helps reduce the load on the heart muscle and Dr. Cripe increase the dose. It is a good idea if you are a carrier to have an echocardiogram every 5 years. My first one was good. Exersise is such a double edged sword. It is good for them to a point and it really depends on the type. Non load bearing exercise like swimming and bike riding are really good. But you want some weight bearing too because it is good for their bones. These boys tend to have low bone density and then if they take steroids that can make it worse. So they will check that and their calcium and vitamin D levels. We try to let them just be as active as they can be and let them rest when they feel they need to. Jared is still playing soccer and he played better than ever at his last game on Sat. I is also very important to make sure they are really well hydrated.
Anyway I know this is a lot. They will go over every detail you will need in OH. They are so great! I love Dr.Wong. She really loves these boys. We were just there in Aug. They doctors were all really happy with how the boys are doing.
Well, I will have to check with his doctor on Monday and see. They have not done a great job at informing us at Children's...which is supposed to be such a great hospital. We have been disappointed that there is no "expert" here in Birmingham that just treats DMD and follows the research. That is why we are going to see Dr. Wong.
Just curious, what are your son's symptoms of DMD?
My boys and I have deletion 3-7 also. We also see Dr. Wong. Calvin is now 12 and walking really well and has been on deflazacort for 2 years. He was diagnosed when he was 9. Jared is 9 and he also is on deflazacort and still loves to run.
I wanted you to know about my uncle and 2 first cousins who had this. My uncle lived to be 39 and by cousins both lived into their 40's all with really no treatment at all. They never had any resp. problems. Do you have any family history? Do you know Jordan from Austin TX
I read your post on the issue of talking with the class and about Jonluke being told he cannot bring a rolling bag. My question is whether you have requested an IEP for him...this can be mandated that he use a backback with wheels. I fought to get Riley an IEP as soon as we found out he had DMD so that we could address any needs he would have as soon as they came up. The school system cannot deny your son accomidations he needs due to a disability as long as an IEP is in place. A good person to talk to about this is Jill Castle. Hope this helps.
Hello Kathy - I got your e-mail with some questions. Send me an e-mail to my personal e-mail address at firstname.lastname@example.org or my wife's e-mail at email@example.com or call our cell phones at 713-859-9586 (me) 713-302-5068 (deanna). We would be happy to answer your questions either way.
Just to clarify, I do know about the proteins with regards to dmd--just had never heard it in that context, i.e. "The genetic Dr is the one that said that all but one of his protein levels were normal and one was abnormal." I am out to lunch most times but didn't want you to think I was a complete dufus=)