We're new....Does it ever get easier???

I copied this in from the other Parent Project message board and it was suggested I post here as well. So here it goes:

Well, we're new to this game here. My son was diagnosed with DMD initially on April 21st (one week to the day of his 5th birthday). Official diagnosis confirmed based on genetic testing on June 10th - point mutation. We SIMPLY went to the doctor's for his kindergarten physical and through very casual conversation his nurse practicioner decided to run a blood test (cpk)- I really didn't know why, nor honestly was I worried - afterall, there was NOTHING wrong with him. The only thing we noticed was some tippy toe walking that he started in the fall and progressed in to the winter and we thought (or I thought) it was because he didn't wear socks in the house and we tend to keep the house on the cold side in the winter, so I thought his feet were cold - I know, sounds stupid now, but have you ever gone out into your garage in the winter without socks on?? What do you do, you walk on your tippy toes.... Anyway, the nurse noticed his heel cords were alittle tight as well. At 6pm on April 21st, the call to end all calls came and my heart was broke, for what seems like forever. His cpk level was 4487. By the end of the week, we were at the University of Iowa Children's Hospital to work with Dr. Matthews, Neuromuscular Pediatrician in the MDA Clinic. This is her specialty. Because of his mutation, it sounds like he may be eligible for the PTC124 study. We chose to start him on steriods, deflazacort, first because of the risk he could get a placebo and that would mean a good year of no treatment. We really don't notice much difference with him as his symptoms are so mild and his doctor said we probably wouldn't notice much either (both preschool's he attended were floored - neither saw him as a "red flag"). After six months, we will begin the pretrial testing for PTC124 - the walking and the muscle biopsy, etc. He is handling the deflazacort quite well; alittle more chatty, if that's possible. He wears his night braces all night and is so cooperative when it comes to his stretches. To say that he is a trooper is putting it mildly and to say that he is carrying my husband and I through this is an understatement. My son's name is Kyle (5). He has a sister, Erin (12), who adores her little brother more than you can imagine. He also has a brother, Joey ("almost" 10), whom Kyle just adores. I guess I just wanted to reach out and say "hi" and well to say quite frankly how much this SUCKS!!!! A few questions/comments:
1. Our first order of deflazacort went through someplace on the east coast that went to Switzerland - um, really expensive $460... This time I went through Masters Marketing and holy cow the price difference, upwards of $300 savings (mainly in shipping and handling). My order from MM just shipped so hopefully they come promptly.
2. At what point did you talk to your DMD son's about his condition? Kyle doesn't have a clue, nor should he I don't think - he's 5 and as far as he knows he's just like everyone else - he does everything every other kid at 5 does.
3. For any dad's out there - how did you overcome the anger My husband is just really angry - he's such a wonderful person - he can't fix this one and I think it's killing him. He's always been such a "future" thinker and I've dealt with the present. Of course the "future" is really, REALLY scary these days...... ..
4. For the mom's - did most of you get tested? I'm scheduled to even though our wonderful insurance company denied the insurance coverage. I just think I owe it to my daughter since this could affect her as well (oh, that's one added stress to the anger in #3 above - ie. the thought that she may have to go through this as well).
5. Does anyone go to the University of Iowa and Dr. Mathews?? Your thoughts if you do? I've been very, very pleased with them and our main nurse is absolutely wonderful.
6. I read in one of the topics about the guide dogs. Does anyone have one? I guess if we were thinking of it, we should sign up sooner rather than later the way it sounds for timing.
7. I guess, finally, how do you get your faith back after something like this?
Well, that's all for now. Sorry to take up so much space, but I'm a woman, and we have to talk through our stress.....
PS. i'll add pictures and more family info shortly.

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Comment by Kurt Harzke on September 30, 2008 at 12:01am

My son Jacob is also 5. We got our confirmation of Duchenne when he was 3 and have been living with it for the last few years. I am sorry that it is necessary for you to be here. But I am glad that you have found this network. I cannot speak to all your questions but I'll give you my 2 cents (now worth .65 cents since the stock market drop) on the questions I can.

To answer your questions, it does (and doesn't) get easier. There are days when you'll be better at coping and days that you'll feel like going to pieces. The challenges for your son will increase, but so will your ability to face them. It is hard, but like most hard things it is worthwhile. None of us would choose a life battling Duchenne, but you can learn to live and enjoy life in spite of Duchenne.

We have not officially talked to our son about his condition. He is aware that he takes medicine (and some kids don't). He knows that he is not as fast or strong as other kids his age. He occasionally asks questions and we answer them truthfully. We do not give him more information than he asks for. He is starting to put the pieces together on his own. One day he heard us talking about PPMD. He asked us what that was. My wife replied "an organization that helps kids with sick muscles." Jacob responded: "like me?" It was a shock to us both. We told him "yes" and he seemed satisfied with that.

Being a Dad typically means being the fixer. If the faucet leaks you fix it. If the car is acting up, you fix it, etc. Men in general are problem solvers, so it can be very frustrating to feel powerless to do anything about your own son's condition. As a Dad, I continue to struggle with my anger as well and like your husband I have all too often succumbed to the temptation to look into what seems like a very bleak future. This is what helps me:

1. Remember that NO ONE can see the future. There are somethings that we know we can expect, but it is too easy as parents (mothers do it too) to torture ourselves with the worst images imaginable. Those images are created in our minds from our fears and can be countered. I try to imagine Jacob's future as happy, full of people he loves who love him. My wife and I try to give him as many positive experiences as we can within his means (and our own). If he is taken from us too soon he will have had a rich life. But -- and this bears repeating -- NO ONE can see the future. There are new discoveries being made and progress toward a cure. Kids with DMD are living into their 20's and 30's. They are growing up, they are leading full lives and our sons may yet see a treatment or cure.

The other thing that has helped me (as a Dad) is being involved in organizations like PPMD and MDA. Sometimes it helps just to feel like I am taking some kind of action.

I wish you well. You and your husband are not alone.
Comment by Rhiannon Traigle on September 11, 2008 at 2:55am
I am glad you found this site and I am also sorry that you had to. My son was diagnosed at the beginning of this year and will be 6 in October. I gather that with any disease that robs a parent of the dreams they had for a child and eventually their child, it doesn't 'get easier', but I can truly say that my days are easier knowing that I have other families out there to lean on and learn from. I hope you find that here, I certainly have. My husband too was/is very angry about Riley having DMD and doubted his faith. I did question why God would 'choose' Riley for such a fate, and I even went and spoke to my priest (who is a cancer survivor and quite liberal I might add) about this. His experience with cancer caused him to question is own faith in God. After talking to him and just from my own personal experiences in life I've come to believe that we all need faith in something to get us through each day...that faith may be in God, a cure, the love of others, the strengh of our children, or the wisdom of our Doctors. Instead of being angry with God, I have chosen to put my faith in him and that is what gets me through each day. Like a lot of other parents here on this site, I try to look at life differently now (like Sharyn said...Welcome to Holland...I love that story). I quickly stopped asking 'why us' and though 'why not?' does anyone deserve this? I am thankful for each day I have with Riley and that I have to insight to know that each day counts in this life...I don't want to spend them being sad, I want to make the most of them. I belive it's our attitude that make our lives...not our circumstances. We've had a rough run with this diagnosis...poor doctors, messed up testing, no results still, having to travel for good care (Cincy to see Dr. Wong), etc. and believe me I do get irritated and angry. I worried about telling Riley about DMD too, but I know that he know he was different. First I told him that his muscles were 'sick' and that's why we went to the drs. He's just 5 and didn't seem to care much. I then decided to tell him that is has a name and it's called Duchenne. That didn't seem to matter to him much either. Before I even told Riley...matter of fact, before we had the diagnosis, he knew he was slower and different, I just gave it a name. The one thing I do know, is that for each of us our grief will be different and that we should not put expectations on how we deal with DMD. There is no time frame for how long you cry and how often. There is no marriage that won't feel the effects. It is ok to be angry, sad, happy, sorry, and proud. What I love is that no matter what I am feeling, thinking, or questioning, someone here will listen and understand. If you ever need to talk or vent I am here too.
Comment by Barbara Niederhoff on September 1, 2008 at 9:08pm
My son's 5. Our diagnosis timing was about a month ahead of yours, CK in March, DNA confirmation in May. I told him the name of the condition a few weeks ago and explained that *that* is why he gets tired so much, and why he's been going to the muscle clinic, getting AFOs, getting new medicine. Very "just the facts, ma'am" style (and only after I was sure to be able to do it that way). He doesn't need to know anything else yet, and we probably could have gotten away with not telling anything for a bit longer, but I did not want him to wonder about something nameless. Plus, my son already knows he's different from the others -- last year he talked about not being as fast as the other preschoolers, not being able to do the same things. Now he has a reason to put to it.

I will be getting carrier testing later. I have a grown niece who should be informed if it's familial.
Comment by Holly Bailey on September 1, 2008 at 1:20am
To answer your question about talking to your son about DMD. We decided from the beginning to not tell Roland anything until he ask. He is 11 now and was diagnoised at 5. I don't remember when he started asking questions, but we have always answered his questions as honestly as possible and only answered the question not giving more info than he is ready for. He still does not know anything about life expectancy.
Comment by Lisa Tepper on August 29, 2008 at 11:32pm
Hi Donna,

I'm sorry about your son's diagnosis. But since you have to go down this road I'm glad you found PPMD and this community site. My husband and I have learned so much from the other members here. Everyone is so willing to share information. And the support is great too. Everyone here can relate to what you're going through.

We are 9 months into this. My son, Brad, was diagnosed last November 6th - a couple months after turning 4. I can't really say that it gets any easier. But you have to go on so I'm learning to cope. I still have bad days, angry days but I have more good days than bad. He started kindergarten this week and that was just overwhelming. Trying to contact teachers and setting up meetings etc.

MicahsDaddy gave you good advice about living in the now and not looking to the future too much. I think we have to think about it some because the decisions we make today affect the future (I agonize over all the decisons). But we don't know what the future holds. I hope PTC-124 is able to help your son and gives him the future you dreamed for him before DMD entered the picture. I just try to enjoy every bit of every day with Brad and Ben (Ben is our youngest - he's 2 and thankfully doesn't have DMD).

We had to talk to Brad a couple of weeks ago about his condition. He asked why he had to go to the doctor so much now. (He rarely went before this.) We just told him that his muscles are weaker than other kids' and that we need to take really good care of them. So we go to the doctor and do stretches every night and soon he will take a medicine that will help and sleep in special "boots". I think he was kind of relieved to hear all that because he knows that he isn't able to run and climb like other kids.

My husband is angry too. He has been like a rock for me but I know he needs someone he can talk to as well. He doesn't want to upset me. I have been encouraging him to join the Dad's only group. Hopefully, that will help.

We need to research getting a guide dog too. Another item on my "to do" list.

I haven't been tested yet. My list is getting longer.

I have faith that this was no accident. God planned for Brad to have DMD. I don't know why and I may never know why. But He holds the future (the main reason I try not to worry - it's in the best hands possible). Like I said before, I still get angry. I don't want my son to have to go through this. But I just put my trust in Jesus to get us through every day. And I pray for a cure. I pray for the researchers and for the doctors. I pray that he will keep Brad strong until better treatments come along. I will pray for your son and family also.

Sorry, I answered your questions out of order but hopefully there was something in there that will help you.

Comment by MicahsDaddy on August 28, 2008 at 2:42pm
Hi Donna,

Sorry you are here, but given the circumstances, glad you found us.

In time, it does get easier. I walked around in the fog for a year and a half after our sons Dx. We got his Dx on May 4, 2005, one day before his 4th birthday. Nothing like having a Dx anniversary one day and a birthday the next, so I know how hard it will be for you next April.

For your #3 bullet, I can relate to your husband. It is tough feeling like your hands are tied. Not having a medicine to just give your child and take away the symptoms. Since that isn’t available to us, getting involved and being proactive took away my issues with the Dx. For me, joining PPMD’s Run for Our Sons team to raise money helped and joining a local DMD charity helped. It doesn’t fix my son today, but it does give me satisfaction that I am not just sitting around waiting, rather, I am contributing to something that will help save many.

A hard part is to not think too far ahead in the future. I used to be the same way. Now, I try not to. It’s time to live for the now, to enjoy everything and soak it all in. It’s always time to take that vacation and not push it off for when “you have more time”. It took me some time to understand the “now” and not the “future”, but 2 weeks ago, in a strange way, I was given a reminder of why the need is to focus on today.

We were visiting my family up in Oregon. We had a BBQ for my grandmothers 80th birthday. As soon as I pulled all the food off the grill, one of our guests had to leave to go to the hospital. His 19 y/o cousin had just been in a car wreck with his 19 y/o friend. The cousin was the passenger and was in critical condition. The friend who was driving, not so lucky. He died at the scene. 19 years old.

I kept thinking about how his parents just lost a child, unexpectedly, and how hard that must be. I hoped that they didn’t put things off, that they don’t regret anything. I think it would be harder for me to lose my child unexpectedly because I would dwell on all the things I never did, all the times I worked late instead of coming home when my child was growing up, the vacations I put off for another time, the trips to Disneyland, etc. Talk about being angry? I would be furious….and 100% at myself.

At least, with DMD, we have a timeline…and the timeline, for the most part, is extending. And, for those who’ll benefit from PTC-124, it looks like the future is gonna be good.

Also, about the Iowa clinic, they seem to be pretty good. I enjoyed their presentation at the PPMD Conference. Though it did kinda anger me…how can Iowa have a solid clinic with 3 million people living in that state and Southern California doesn’t with a population of 23 million? Ughhhh…

Take care.
Comment by Sharyn Thompson on August 28, 2008 at 1:16am
Hi Donna,

Welcome to Holland. I know it's not where you want to be, but it's where you have ended up and now you have to make the most of your "journey".

Firstly, I have written a blog about my journey, and how we came to be here. http://community.parentprojectmd.org/profiles/blog/show?id=1187424%3ABlogPost%3A13883

It answers a few of your questions, without me retyping it. Like you, my son’s diagnosis was a bit of a fluke. It came out of nowhere and hit us like a tonne of bricks. I am being honest when I say it doesn’t get any easier, but I am finding ways of coping. My husband sounds a lot like yours. He always wanted a son whom he could show the world to, teach all the things he loved as a child, guide him through his childhood to help him grow to be all he could. Many of those dreams were shattered upon the diagnosis, and we have never been the same since. I guess Julian’s way of coping has been to throw himself into raising money for research, and he is really making a difference – see our website www.tourduchenne.com. Even though our son’s diagnosis is out of his control, I think he likes to do this as it gives him a purpose, and he will do anything to save our son’s life.

We haven’t talked to James about his disease as yet. I have just ordered a book, Weakling Willie, from amazon.com and hopefully that will help him to understand his muscle weakness. I am dreading the real talk, where I am going to have to answer questions about his life expectancy – no parent should have to go through this!

Lastly, I am not a carrier – James’ dmd came about because of a spontaneous mutation. He, too, has a single point mutation, but he is still too young for the PTC124 trial. I am hoping by May next year they may still need boys to take part, though we will be in London by then (where treatment, doctors and therapists are so much better than here in Singapore). We have already contacted a foundation in UK to get onto the fundraising efforts.

Donna, you will have good days and you will have bad days. Many nights, you will cry yourself to sleep. Small things will make you angry. People not looking after their kids will make you angry. Life will get you down, but you just have to look at your son (and other kids) to remember to get up each morning and keep on breathing. That’s what keeps me going – my kids and knowing I have to do all I can to ensure I never have to bury my son. I know that this may eventually happen, but I need to know that I haven’t let it happen without a fight. I found a wonderful article by a lady on Action Duchenne in the UK – it really motivates me to just keep working to raise money and make a difference. You can read her article here, maybe get your husband to read it. http://www.actionduchenne.org/r-nav/135.jsp

Jsut remember that we are all there with you so if you ever need someone to talk to, or just to vent, we are the ones who will understand you the most. The people on this board are fantastic – get involved and get reading – you will learn so much!

Take care,
Comment by cheryl cliff on August 27, 2008 at 10:32pm
Hi Donna,

Like you we are somewhat new to PPMD and the world of DMD. Sorry you had to join up, nobody wants to be here. But, glad you found this group and I hope you find it as resourceful and supportive as we have. Regarding your first question- our son is just 10 and just diagnosed (last Oct). He knows he has a condition called Duchenne Muscular Dystrophy, that it affects his muscles, that there is no known cure right now, that he (his condition) had defied scientists all over the world (he takes great pride in that one), that he must take steriods, use a scooter sometimes, see Dr's, sleep in AFO's. All of which he does with enthusiasm. He knows nothing more. He may find out more later but then research is on the cutting edge of finding that better treatment/cure so we wait. He knows we are concerned and working all the time to help find a cure. His little brother knows all of this too and nothing more.

I just got results of carrier status testing (negative). I felt a responsibility to inform female relatives, especially ones of childbearing ages, of the particulars so they can make informed reproductive choices. If you are a carrier, and your daughter eventually tests as one there are ways to conceive and have babies without encroaching on moral issues. Probably you will learn more as your journey unfolds.

We started our son at the Univ of Utah since it is closest to where we live, So cal. So far it is working well with a few wrinkles we plan to iron out. We recently got two labrador puppies and they currently are being professionally trained for regular stuff then one will return later (when he is older) for further "special" training to assist our son. There are organizations all over the US where you can find dogs already trained for assistance, most for free. I understand the waiting lists can be long so doing this sooner rather than later might be worth consideration.

The faith question is difficult and on a lot of minds. In my head I never really blamed "god" for doing this or withholding the cure. God isn't Santa, giving to only those deemed worthy. Mutations happen in nature randomly. I also don't consider it a "blessing" of some sort that my child might be elected to go to Jesus. Nor am I a "special" parent. I see it as S*#& happens to nice people and we got some. We are like others, doing the best we can with what we have available. I did scream at the "gods" for several months at first, it helped to get some anger out.

Anger continues to crop up, usually when thoughtless people say something stupid in front of my sons. Or the teacher fries his energy with too much homework, or he shows frustration at not being like the "sporty" guys at school. Anger is exhausting and energizing at the same time. I try to keep the energy and transfer it to doing something good that day. Making my son's life a small bit easier, contacting friends/family for donations, researching the options out there, coordinating care issues, telling the clueless about DMD and most difficult - embracing each moment - even the bad ones. Because DMD or not, that is all we have, all of us.
Everybody does it differently, do what works best for you and your family.
keep well

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