When to start P/T
Our son Brandon who is 8 was diagnosed last week as having DMD. He has a deletion of exon 33. At what stage did your sons start physical therapy? His neurologist and pediatrician don't seem concerned with starting soon, because he is so flexible, and maybe it's because this is so new, but I don't want to take any chances with loosing flexibility before starting to preserve it.
Replies to This Discussion
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Permalink Reply by Karen Barnett on
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PT or starting stretches on your own with him every day is recommended right away regardless of the age to maintain and prolong flexibility. PPMD has a DVD on stretching. Also orthodics or AFO'S for nighttime wear are recommended to keep the achilles tendon stretched at night.
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Permalink Reply by Lori Ware on
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Hi Jim and Melissa, I am sorry to see that you have joined us, but glad you have found this community since you have DMD. My son was diagnosed at 3.5, but we were in PT since he was 15 mths old and not walking. As Karen said, PT or daily stretches are recommended EVERY day to keep him as flexible as possible and wearing night splints (AFO's) is normally recommended to give the heel cords a good stretch each night.
Also, I believe it is critically important to find a very well versed Dr in DMD (not just MD) who is PROACTIVE and does not wait until our boys begin to decline before doing anything ! There is much hope for DMD on the (very near, I hope) near horizon for our boys and maintaining muscle and strength is critical.
Where do you live? I am sure there are some on this board near you....
Good Luck and I will add Brandon to my prayers.
Lori
www.caringbridge.org/visit/seph
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Permalink Reply by Jennifer Collier on
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Hi Jim and Melissa,
My son, Ryan, was diagnosed on May 29, 2008. He has been receiving PT since about 20 months because he wasn't walking. Ask your pediatrician to write a prescription for PT and obtain it on your own. With a prescription, the insurance company should pay for it. In most states, you can also apply for Medicaid due to his disability. Hope everything works out for you and your family.
Jennifer Collier
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Permalink Reply by Keith Van Houten on
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Our son was diagnosed last year at age 8 and started PT immediately. He does 30 minutes of hamstring and heel cord stretching daily.
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Permalink Reply by Kulwant Pannu on
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Neel is 2 and was diagnosed about 6 weeks ago. However, he has been in physical therapy now for almost 4 months. I can't stress enough how important those sessions are for him and myself. When performing his daily massages and stretches I don't doubt myself as to if I'm doing it right. Our physical therapist has been great. She shows me everything step by step and has been a lot more helpful than our docs!
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Permalink Reply by Stacey Andrews on
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Melissa,
Just seeing the question and it is a good one. I started physical therapy right when we got our diagnosis. Which was the spring of 2004. My son was 9. We went once a week for 3 years. This last year we started going every other week. And as of this summer we do not go at all. But that is because he stopped walking this summer. I think it is important to have a physical therapist to watch him, and help you emotionally. I think you do whatever you can to keep him ambulatory as long as you can. I know you are new to this, but the biggest support you will have is your therapist. You only see your doctors every 6 months, some once a year. And in all honesty, IN MY CASE , it's like...just a check in. Since there is no real cure - and not much treatment options other than PT, predisone, and Cozaar - seeing the doctors is just a check. It's nice to have it documented in his file that he has lost muscle strength, but hey - I'm his mom - I could have told you that! The doctors give you the meds - and they regulate the does - but your physical therapist will be the person who routinely sees your son and helps you with his status quo on a daily basis. She will give you the ideas of lifestyle changes, like a transfer board to move from a chair to his bed. That doesn't come from you doctor.
Fortunately for us, our therapist had seen a duchenne boy as a patient when she lived up North before moving to Nashville. But we were the only ones going to EAster Seals who had that diagnosis. Now she has moved back up north - just this summer - and the new therapist was a little hesitant to deal with Grey, on the side of just not over working him. That's when I came in and said - you know - we are going to take a break from PT. He is down now - and the best thing for him really is swimming, and I can take him to do that. So - without Marci in the last few years of this - I would REALLY have felt alone. She really was the support system for us. Your insurance will only cover so many visits ...you can try and appeal that to get more. Or you can pay out of pocket for some which is what we ended up doing. But you could spread them out to fit the insurance plan that you have. Also - you have 4 kids and a busy life - those other siblings alone keep him moving. Point being - a few times at PT what they did was have Grey play the Wii ......well...we have a wii. So you will start to see some opportunities in your own home that are good choices for PT.
My plan once diagnosed was PT once a week- and high does predisone weekend only and Cozzar for 3 years. This last year was PT every other week and we moved to a every other day low dose of predisone, and cozzar. And now that he cannot walk at all as of June - no more predisone. He only takes the cozzar for his heart - and he takes Zoloft to even him out ...has for a few years.
There is no cookie cutter plan because they are all different. But those are the basics. If they had cancer we would be in treatment, radiation, tests, multiple visits, everyone would say how sorry they were. Here, people don;t understand the disease unless they have had a relative with some sort of muscle disease . You do what you can do that is positive for you and your son and part of that is PT. In my opinion it is your greatest opportunity for emotional support from the medial community.
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Permalink Reply by Sharyn Thompson on
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I am so sorry to hear about Brandon's diagnosis - it truly sux! You have done a wonderful thing by getting on this site to learn as much as you can about his disease and how it affects him (as well as those around him).
Anyway, without the risk of sounding offensive, I'm sorry but it seems to me that your son's neurologist and pediatrician do not have your son's best interests in mind when they say not to start PT straight away. The thing we have to remember is "early intervention". Many of our boys are diagnosed when they are very young and not showing any signs, and yet we start PT as part of their daily routine to maintain that level. Find a good PT, with experience in DMD, and ask them to show you how to massage and stretch him EVERY night (after bath, before bed is a good time). I am all for early intervention, as I want my son to be with me, and walking, for as long as possible.
As the others have said, find a great doctor with DMD experience and a good PT as soon as you can! I am sure there are people on this site who live in your area, and they can perhaps recommend a doctor that they use. I can't stress how important this is.
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Permalink Reply by Veronica E. on
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Hi, guys. So sorry that your son has been diagnosed with DMD. We are new to this too and this site has a wealth of information and supportive people!
Sorry to hijack, but would you guys recommend we start PT or stretching on my six-month-old Max? Our neurologist said we should start stretching at 18 months, but now I'm wondering if we should start now. I just don't want to do anything incorrectly and cause more harm than good.
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Permalink Reply by Jim & Melissa Smith on
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I have just started learning the rules myself, so I am not sure. In most cases, it seems muscles develop normally for a little while, before starting to break down. If that is correct, I would not think stretching would be needed yet. I don't know if you need to play by different rules at such a young age though. Perhaps if you start another discussion, you might get answers from people more experienced with younger kids. PPMD does have a lot of info, and a stretching dvd, that is very helpful, I just don't know about using it with a 6 month old.
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Permalink Reply by Paul Johnson on
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Veronica,
I don't know about if it is physically appropriate to stretch your 6mth old, your PT & Dr's would know best. But I do think something that wouldn't hurt, would be to start developing the routine that eventually becomes your stretching time. For our youngest, he's 2, we in the beginning didn't really stretch him, but more or less played with him while doing the motions (without the strecth) that would eventually be his stretches (if that makes sense). So I think by getitng them used to laying down and you manipulating him it will make the time when you actually start the stretching easier. If 18mths is the appropriate time to start stretching then I would think a month or 2 beforehand start developing the routine of stretching.
Also - on my page (My Page) there is a link to a page I where I collected a bunch of links to Physical Therapy papers, studies, videos etc... so you may find alot of useful information collected there.
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Permalink Reply by Ofelia Marin on
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Veronica,
We are seeing 2 doctors, Dr. Wong and Dr. Mendell. They recommended different start age for physical therapy and stretching.
We were advised by Dr. Wong to start stretching very early, our son was 7 1/2 mths old when we had the 1st appointment. She showed us how to do a very easy 20 sec stretch. It is quite difficult to do it when he is awake (he is full of energy and doesn't sit for too long), so we do it when he sleeps.
She also recommended starting early intervention physical therapy (our son is 1 year old now), but we decided to wait until he starts walking independently (as was recommended by Dr. Mendell) -- he seems very close to that now.
Ofelia
Veronica E. said:Hi, guys. So sorry that your son has been diagnosed with DMD. We are new to this too and this site has a wealth of information and supportive people!
Sorry to hijack, but would you guys recommend we start PT or stretching on my six-month-old Max? Our neurologist said we should start stretching at 18 months, but now I'm wondering if we should start now. I just don't want to do anything incorrectly and cause more harm than good.
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Permalink Reply by Jennifer Shumsky on
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We actually started PT prior to diagnosis, in fact it was the PT that really diagnosed Xavier. I would recommend PT from the start. Even if it's just every other week I think it's good to have someone keeping an eye on him to have a professional measure taking place.
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