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On Jan. 9, 2012, I recieved confirmation that my son Preston has Duchenne's. It will not be untill May that he is seen in the muscle clinic. I am wondering if there are any families that can help me fill in the blanks as to what to expect. I would also like to speak to families from Saskatchewan or Alberta Canada, regarding the services I can access for my son. Thank you.

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Comment by Leeandra Arhdeacon on January 26, 2012 at 7:27pm

Hi Geraldine, I just wanted say that I am so sorry for this diagnosis. We all welcome you with open arms and lots of support. 

Comment by Jennifer Klazek on January 26, 2012 at 7:02pm

Hi Geraldine,

Thank you for getting in touch. We are at a similar stage of coping with this as we received muscle biopsy confirmation in early December. Eli is 3 1/2 and is receiving speech and physiotherapy - his delayed speech was the first symptom. Our physio said she can't emphasize enough the importance of stretching, especially heel cords and hamstrings.

We have a phillipina nanny too, who we love and it has crossed my mind how great it would be if she would stay on with our family long term. Usually I can see the blessing of being given time to adjust to each stage of progression but I'm still not past the unfairness of it all. Such sweet wonderful boys we all have. This site is amazing though.

I haven't had a chance yet to discover what the provincial coverage is for various things but we have given the government disability forms to our pediatrician to fill out. May as well take advantage of these savings now. Take care for now and stay in touch!

Comment by Joshua's mom on January 23, 2012 at 10:28pm

Hi Geraldine,

Joshua will be 9 next month.  We live in Manitoba.  When your son was diagnosed, the info, if it was anything like ours, goes in one ear and out the other, just because you go into shock.  Feel free to ask any questions you have.  We are all in this together so someone always has an idea, answer, or resource to recommend.  We are your new DMD family!

Comment by Geraldine Coolidge on January 23, 2012 at 6:17pm

Again, Thank you  for all this information, I will definatly look into all you have suggested. Andrea to answer your question regarding Preston's ankles locking. The best way I can discribe it was that he had a charlie house in both his legs. Nothing we did would help the ankles to rotate at all, this was different that the tight achilles tendon that he seems to have on a regular bases. Preston could not set his feet flat on the ground.  He had some discomfort with this, but not much. Thank God!!!

Comment by Andrew Kerr on January 23, 2012 at 5:19pm

Hi Geraldine,

We haven't had that problem with Hayden or Cameron, so I'm not sure what help we can be.  Realistically, if our nephew wasn't several years older (he'll be 10 next month), we probably wouldn't even have our diagnosis yet.  I'd definitely bring it up with the Neurologist and the physical/occupational therapists you'll be seeing.  I know some stretching and toe walking is common, but not quite sure if that's what you are describing.

One thing I'd mention (though its low on the priority list) is to get your son listed as disabled with the Government.  The form you need is here:  http://www.cra-arc.gc.ca/E/pbg/tf/t2201/README.html

It'll give your family some pretty significant tax breaks.  Our doctor pre-dated the form to when Hayden was 3 or 4, so we got a fair bit paid back from Revenue Canada as well.  Another thing to consider is an RDSP for Preston.  Its like an RRSP but for persons with disabilities.  The Government will do some matching of contributions based on household incomes.  There were some restrictions on them before, but I think they're probably a good idea now that those restrictions have been removed.

Comment by Andrea Cleary on January 23, 2012 at 5:11pm

Hi Geraldine,

Preston will be given a daily stretching program to do that will help his ankles. That tip-toe walking with the tight Achilles tendon is one of the classic symptoms of DMD, along with enlarged calf muscles and doing the Gower sign. I'm just curious, when you say "locked up", do you mean there was a cramp at the same time (was it at all painful)?

Comment by Geraldine Coolidge on January 23, 2012 at 4:52pm

Thank you both for contacting me so quickly. It is so nice to talk to people who know the place I am in right now. I do have one other question. The reason we discovered Preston had Duchenne's was because his ankles locked up during gym class and we were unable to get him off his tippy toes. This is why I took him to emergency...the rest of the story has brought me here. My question is, is this common with Duchenne? They have locked up once since. How would you reccommed I deal with this?

Comment by Liisa Underwood on January 23, 2012 at 3:19pm

So sorry to welcome you to our family, but this is a great family to be apart of for ourselves and our sons.  Everything is overwhelming so take many deep breaths and don't be afraid to call anyone of us. 

 

My son is 6.5 and is above average for his age in terms of progression. In other words, he is not as declined as most boys his age.  He still walks and runs, just not as well as his friends.  We started him on steroids when it appeared his physical tests plateaued.  However, you are just beginning and should work with your muscle clinic crew to determine Preston's current level.  The steroids sound scary with all their risks, but the benefits are critical to our boys' entire quality of life and not just to keep them walking.  Our son is also on a growth hormone treatment because the steroids depressed his growth.  Between the two medications, he is able to walk up stairs without help. 

 

Here is a link to the standards of care document.  http://www.parentprojectmd.org/site/DocServer/120409Lancet_Neuro_on...  This is your bible.

Start organizing medical records.

I think the biggest advantage we had knowing so early is being able to make big financial decisions with DMD in mind.  Without a cure and/or treatment, future medical expenses will be a challenge.  Plus, home modifications, a move to a home with modifications already made or doing modifications on a home that requires less than what you have now (the last is the boat we are in. Our current home does not support handicap accessibility).

This is a start but I have to get back to work.  I can write more later.

Hang in there!

Comment by Andrew Kerr on January 23, 2012 at 3:10pm

Hi Geraldine,

Welcome to the site, I'm glad you found it.  I'm sorry to hear about the diagnosis.  Preston is about the same age as our oldest (Hayden turned 6 in November, 2011).  We're quite a ways from you, in Weyburn, but if there's any specific questions you have, please ask me.

We have two children, both with DMD.  As I mentioned, Hayden just turned 6, and Cameron just turned 3.  First thing I'll suggest, is start slow.  This is a horrible condition, and its heartbreaking, but you do have time.  Preston is young, there are lots of promising drugs in clinical trials now.  Not much is going to change right now.  Hold on to that.  That's one small comfort is that at least at this stage, its slow to progress.

After you've seen all the doctors and therapists, you'll more than likely be presented with steroids as a drug to help at least slow the effects.  We've had very good results with Deflazacort, which only just recently was approved for the exceptional drug status list (its covered now by provincial health care).  We do have to pay a small shipping fee (about $10 every three months).  Only the University Hospital in Saskatoon carries it.  Its sort of the accepted drug in Canada for DMD.  Other countries use Prednisone, but the consensus is that Deflazacort has fewer side effects.

I'm not sure what else to tell you at this point.  PPMD is a great site.  I check here regularly, but feel free to send me a message anytime, and if I can answer any questions you have, I will.

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