To Steroid or Not to Steroid, that is the question

After reading a posting today, I thought I'd post a few things about making a decision on whether to treat a child with Duchenne Muscular Dystrophy with steroids or not.  There are currently 2 types of steroids that most folks use, Prednisone and Deflazacort.  Doctors are working on alternatives for the future too.  Deflazacort is a steroid, similar to Prednisone, but, that has shown to have less side effects.  Deflazacort can only be purchased by paying the full price and ordering it from England (which we do).  I do understand that a few folks have gotten their insurance company to cover the cost.  I have not tried that battle yet.  I believe Prednisone and Deflazacort are currently going to be under a new clinical trial too.  We decided to treat Kelvin after many months of study, asking other parents, talking to doctors, reviewing the risks, clinical trials, reviewing presentations from different PPMD conferences, etc.  We do realize the risks, which, can be great, even death.  I remember a year or so ago when a young boy in England died from his stomach rupturing.  My heart sunk.  We have always, always made sure that Kelvin eats breakfast first and that he drinks something, prior to giving him his steroid.  The doctors stressed this, that his stomach MUST be coated first, to be safter. Also, Kelvin's doctors have always told us to give his steroids in the mornings, as, otherwise, it will interfere with his normal cortisol levels.  We have done that too, but, have heard of others who don't.  I'm not sure why Kelvin's doctors said to only give it in the morning, as I'm not experienced in cortisol levels and what that really means.  I did see someone post recently that they give it at night, which helps with defiant issues.  I don't know the answer to this, but, it is interesting and I may have to spend some time researching when to give it. We give 15 mg per day, 1/2 pill, put in a spoon of Gogurt.  Kelvin has been on the same dose for nearly 3 years.  I also know that folks try many different regimens of treatment, for example, days on, days off, weeks on, weeks off, etc.  I do go to 2 different great clinics, Columbus and Cincinnati, Ohio.  They both have great doctors that are very proactive and informed and helped to inform me about the use of steroids.  My son Kelvin has certainly had the negative of the steroids.  Kelvin was always defiant and had a bad temper, but, steroids made it worse.  He can be very intense.  The first 6 months of steroid use, were the worst though.  Also, he has had some weight gain, and has now fallen below the growth chart with height.  Kelvin also has a lot of hair growth (on his back).  All and all, I wouldn't have changed anything, as far as the decision to use steroids, as with treatments for him still years away (I hope & pray that they aren't too long), we are trying to keep him walking, as long as possible.  We do know what the future may bring, but, with all the bad of steroids, having the possibility (studies show this) of walking around 2 years longer, and less spinal problems, fewer pulmonary issues, etc., was all we needed to continue on the path of steroids.  And, by the way, studies show that being shorter is actually better with Duchenne, as the impact can be less on the muscle.  I read a study done on height and there was a child with Dwarfism with Duchenne who did much better, they think, due to the height.  For those who have chosen not to use steroids, it is certainly a personal decision, one of which should take a lot of consideration, especially the risks.  We all find ways to treat our boys, in every way we think is best and because there is no treatment available yet (except those doing well on Vecttor), we are only left to make the decisions on our own and everyone is different, therefore, everyone chooses a different path.  I based most of my treatment options on what many worldwide doctors said that they would do, if they had a child with Duchenne. I'm going to post a few clinical trial links for folks to read, as well as, a nice powerpoint presentation that I feel is very informative in helping parents to make such a personal decision, if they are thinking of steroids.  The last link is a nice powerpoint from PPMD.

http://www.pedneur.com/article/S0887-8994(07)00554-1/abstract
http://www.ncbi.nlm.nih.gov/pubmed/15336688
http://www.ncbi.nlm.nih.gov/pubmed/11148511
http://www.nmd-journal.com/article/S0960-8966(06)00029-0/abstract
http://www.ncbi.nlm.nih.gov/pubmed/8170484
http://www.spineuniverse.com/professional/research/srs/2001/deflazacort-attenuates-progression-scoliosis
http://www.parentprojectmd.org/site/DocServer/biggar_steroids_2006.pdf?docID=1210

I hope this blog helps.  It is just a quick run down on steroids, but more specifically Deflazacort.
Take care, have a great day!

I try to post factual information, however, please notify me if I post something incorrect, so that I can edit/correct the posting.




 

All About You - Take Care and Money Saving Ways for PARENTS

I have found that most of us (parents of kids with Duchenne) that network on Facebook and other sources, are positive and fantastic people.  It is amazing that most of us can be so positive; after all, we are having to deal with some incredible pain and life changing situations dealing with a child with Duchenne.  Although life can be very difficult, it is extremely important for parents of kids with Duchenne (and other illnesses) to take care of themselves as well.  It is so easy to get caught up in doing, doing, doing for your child and others, but, your child needs you healthy, in order to take care of them.  I am referring to mental and physical health. I know we don't all have great health, however, it is very important to take care of yourself, as much as possible.  I have found many ways over the last 3 years to take care of myself and my finances, most of which I've learned recently (as it took a long time to learn to deal with everything that comes with raising a child with Duchenne - much of which I choose to do to help Kelvin as much as possible).

• I surround myself with family and friends who care about me and listen to me and care about Kelvin. 
• I network a lot, as many of us are there to help and support one another. 
• I have found that organizations like the MDA, Make A Wish and A Kid Again, have provided us the opportunity to do things that we may not have been able to do otherwise.  Spending time together as a family is more important that anything else in my life. 
• I take vitamins and am watching my diet too (of course, I have had to watch Kelvin's diet and he is on a low sodium diet because of his steroids).
• I spend more time with friends and family, and am grateful for some better/closer friendships both online and locally
• I do regular checkups at my doctor.
• I take more big vacations (I call big vacations, 1 week or so away from home, in which I have a lot of time to enjoy my children-no work-all play).  There is nothing like a smile on Kelvin's face! (and my daughter's too)

I have had to find ways to afford vacations too, as taking care of a child with Duchenne can be very expensive between co-pays, out of pocket hospital expenses, steroids (from England), supplements, healthier foods, visits to other destinations for doctor visits (hotels, food) etc.  I start with my tax refund, however, I have found a lot of other ways to save money and to also be able to afford to do more with Kelvin.  We are a family who never wants to look back and say that we wish that we had done that.  Following is a list of places I use to save money and to do more. 

• I buy the Entertainment Book, use LivingSocial.com, Restaurant.com, and Groupon.com.  I use coupons as much as possible, including Coupons.com, Redplum.com.  Those that know me, know how I am about sales, coupons, store clearances, etc.
• We are also a family who loves garage sales and thrift shops.  It saves us tons of money on all sorts of items that we need/want.  Garage sales are also my favorite thing to do for stress relief - get ready mom and family and friends, the season is near - I certainly hope the price of gas doesn't rise like they said it might
• To save money, we also buy from Ebay, Amazon, etc. as they often have great sales (like buy 2 get 1 free video games, etc.) and they also have items a lot cheaper than stores (well, for the most part, unless shipping is high). 
• My bank has rewards for every dollar I spend on my debit card (if I use it as a credit card).  I pay for everything with it and get lots of free gift cards per year (hundreds of dollars - I use them to help pay for Christmas, birthdays, special gifts, etc.). It is a very easy way to earn extra money.
• If you own a home, financing at low rates can help save money too
• Also, while grocery shopping, if I see an item that I normally use on sale much cheaper, then I buy multiple of that item
• On another note, my parents help us a lot, they are amazing and do whatever they can, whenever they can - we only live 4 miles from one another

Many of these things that I've listed to save money, aren't all done because I always have to, but, because I enjoy doing them and also it gives us that much more to be able to do things together, vacation and even donate to Duchenne organizations and other organizations as well.  I am always willing to lend a hand/$ to anyone in need and hope that this will enable/encourage others to do the same.  Doing for others is something that I enjoy, as I have found that it so important to make yourself happy first.  It makes me so sad to see/hear negative folks, as I know that if we can be positive with what we've been dealt, than anyone can. LIFE SHOULD BE ALL ABOUT LIVING FOR TODAY! SHOULDN'T IT?  Before my grandmother passed away (years ago), she told me that I shouldn't worry as much about the future (for when I'm old-if I make it there some day).  She worried about it most of her life and saved money, instead of enjoying it.  She had plenty of money when she died that she could have enjoyed things she wanted to do.  She told me to go and enjoy life and have fun.  I've never forgotten what she told me.  I am still responsbile for planning for the future, but I'm much more worried about living in the here and now.  Love one another, support one another, cherish one another, care for one another, provide to one another, respect one another, value one another, and always be there for one another.  Bye, bye for now..........

What we do for Kelvin: supplements, night braces, steroids, etc.

The picture here is of Kelvin and 2 other Duchenne boys, Danny and Carter, which many of you know.  This was at our first Cincinnati visit, in 2008.  Aren't they beautiful boys!                                                                         

When we found out that Kelvin had Duchenne, 3 years ago, we started the journey that many folks do or will have to do.  There are so many decisions to make, let alone the emotions that you are going through.  My family, friends, parents and I spent thousands of hours researching online to find out what we could do for our son.  I am hopeful that some "new" folks to DMD will read this and it may help others.  At first, we were told nothing, but, I wasn't going to stop at "nothing".  I knew there had to be something that could help Kelvin.  In fact, I have found that there are things that can be done to help our boys stay better longer.  At this time, that is all that we have.  There is no treatment and no cure and according to some doctors, it may be many years yet until treatments can be provided to our sons, even though there are many in clinical phases.  Until then, I'll soon describe what we found to work for us, for now.  Our son has exon deletions of 45-52 and I've found that every child with Duchenne is different in how they progress.  During our research, we read many clinical trial findings, found out what top doctors said they'd give their children if their child had Duchenne, asked other parents and other things, we are on our own.  Kelvin is doing well for age 8, he'll be 9 in Sept.  The doctors continually tell us to keep doing what we are doing, because Kelvin is doing so well.  Again, partly due to his specific deletions (which are ones that normally have a slower progression-according to his doctors), and partly due (we think) to what we are doing (we hope).  I'll list what we do/give to Kelvin and then I'll explain what a few items have done (in my opinion).  First, a list of supplements: 1 TBSP of Liquid Life Complete Nutrition-liquid vitamin, 1 D-2000 Nature's Bounty D3-recommended by Doctor, 1 Adora Calcium Supplement -500mg, 5 Gram Glutamine + 2.5 Gram Creatine - unflavored mixed with a drink mix/H2O, 1 Protandim, 157 mg of Green Tea Extract, 2 tsp of Lifetime Liquid Calcium Magnesium Citrate, 2 tsp of Qunol Liquid CoQ10, 1 drop nightly of Carlson Ddrops vitamin D3 1000 IU, 1 tsp of Barleans Kid's DHA-Omega 3,6,9, 1 tbsp of Noni Juice mixed with rootbeer.  Second:  takes 15 mg of Deflazacort per day (has been on same dose for 3 years) which is a 1/2 pill put in Gogurt.  Third:  Kelvin is massaged/stretched at least 6 times per week at night after he falls asleep (works for us).  He wears night splints on his hands (rotated between hands-1 day on right, 1 on left), and night splints on his legs, after being massaged and stretched.  Fourth:  We use a special stroller for long distances (not yet because he needs it always, but, because we make him-it is about conservation of his muscles).  We always keep him from doing too much.  Not too much walking, climbing, running, etc.  He does everything, but, we have a stopping point for everything Kelvin does.  He doesn't always like it, but, we are trying the best we can to prolong his walking. 
Explanations:  I'll explain a few items.  Noni Juice, our amazing juice.  For a real life testimony, go to http://www.trunoni.com/ and I've posted a testimony there.  I think this is making a real difference for Kelvin.  When he started to take 100% Noni Juice, immediately, he could breathe so well, it was really incredible.  For the first 5 years of his life, he always had problems with snoring, respiratory infections, etc.  Instantly, he was better and for 3 years now, his breathing is perfect.  He had never slept with his mouth shut, prior to taking Noni, and for 3 years, he has only slept with it opened a few times when he had a bad cold.  It tastes terrible, but, he drinks the 1 TBSP mixed in 4 oz rootbeer and tolerates it well (he won't even take his other supplements without it.  Please, please read up on Noni online.  It is hitting the world and other nations too, especially Hawaii, Central American, Tahiti, etc.  It is an amazing fruit. Many folks say it helps  with Asthma.  I am no doctor, but, it did something amazing to Kelvin, so, maybe it does.  My friend just saw it in another country while on a cruise.  It is selling everywhere in Belize, Central America too.

Protandim - this was amazing to us, just like Noni.  I never really believed in supplements, until Noni and Protandim.  Oh, and by the way, I added each new supplement, weeks apart, so I could see what might not work for him, as if you start many all together, then you might now be able to see what is helping/hurting.  Ok, Protandim, Kelvin changed so quickly, congnitive wise, when we gave Protandim.  He hadn't been able to use a computer or mouse at all (he was 5).  He kept getting very frustrated.  We didn't know how to help him.  Our daughter had been using the computer extensively by age 2, so, we didn't know what to do.  He started taking Protandim and not only could instantly use the computer and mouse, but, could play difficult computer games like Zoo Tycoon.  Also, he hadn't been able to use his sister's Nintendo DS, but again, instantly he could, I'm talking overnight.  It was amazing.  My entire family was witness to this.  Kelvin does struggle in school, but, I'm not sure where he would be without Protandim.  Kelvin has never had tight calf muscles, so, as many people find, I didn't really notice a difference in softness of his calves. 

Vitamin D:

We give multiple sources of Vitamin D, but, Kelvin's vitamin D in his blood and his bone density improved in a 12 month period, not sure why, but, according to his doctor, they highly recommend Nature's Bounty D-2000 Vitamin D3.  I realize it is cheap, but, after review of many children and what brand they were on, Kelvin's doctor found that boys do well on this brand specifically.  I guess they were right, maybe, as after changing to this brand, Kelvin improved, HOWEVER, we added 1 drop of Carlson Ddrops vitamin D3 1000 IU also, so, not sure what did it, but, I'm sticking with what I'm doing, after seeing an improvement.  We were moving towards Fosomax, but, didn't need to after improving a bit, at least not for now.

We feel very strong about what we give Kelvin, his doctors approve as well.  Just like others, the decision to use steroids/Deflazacort was a difficult one, knowing the risks.  Kelvin's height is now below the growth chart, but, I'm read multiple times where being shorter, may be better than elongated muscles, so, for now, we are dealing with it and sticking with it and have decided against growth hormone at the time (again, due to reading/researching that being shorter may actually be better).   I have also read situations where the growth hormone may be beneficial as well.  Wow, too many decisions!  Again, these are decisions that are all difficult to make and many times are left up to the parents.

Speaking of doctors, that was another decision we made.  We go to Cincinnati Children's once a year and also to Nationwide Children's in Columbus, as Cincinnati is a Comprehensive Care Center and Nationwide was not.  It has been a very good choice for us, but, we are lucky enough to be in Ohio and have some of the best doctors here, both at Cincinnati and at Nationwide. 

My hope is to continue to work together; both helping to educate one another and to educate others so that together we can gain resources (doctors, money, etc.) necessary to CURE DUCHENNE.  If anyone has any questions about anything I posted here, I'd be glad to help, if I can.  Oh, and I quickly write these, so, I apologize for spelling and grammatical errors.  Also, my opinion about the supplements is my own and I'm not paid nor do I benefit from promoting them.  It is only my opinion.

An inspiration

I had always wanted to start a blog for Kelvin, and today, after watching the Cure Duchenne Summit, including Debra and top Duchenne experts, I realized more than ever, that money, yes, money, is the main answer to finding the cure/treatment, so, I'm starting a blog to do 2 things:  to update folks about Kelvin and to do my part in advocacy for Duchenne, so we can raise more funds.  I mean look at that face at the top, how could I not try!!  There are amazing experts in the field, but, they are limited to research and trials, by the money they have, so, I'm on a mission.  Well, I'll try more than I have.  I'm hate, I mean hate, to ask for money, help, etc. and I don't take well to others doing for me (I'd rather be the person helping), but, Mindy and Debra and the others made me think more about it. I am calling this blog, Cans for Kelvin's Cause:  Duchenne, because, in fact, I do collect cans, sell them and put the money in a bank account for what Kelvin "may" need in the future.  I also donate a portion to charity, Duchenne Charities that is.  Just think if thousands of other people did something simple like us, getting groups involved (like Girl Scouts who go together to collect tabs, etc.).  Just think how simple this is to collect cans and what an impact it could have.  The money is endless (in states where this is possible).  The price of aluminum has increased, so, I'm throwing this out to everyone, for a start.  Oh, and with the Super Bowl coming, think of all of those beer cans being thrown away.  That is money for our boys, but is also something that we can all do to help the environment as well.  For those who find it hard to ask for money, it is easy to ask for cans, as many folks recycle anyway.  People at work save for me, so do neighbors, friends, family, my dentist, a local business and others. All you need is a place to keep them, until taking them to sell. I haven't even advertised, just word of mouth.  OK, now, I will advertise, as Debra of Cure Duchenne says, all money, no matter how small counts and together, WE CAN CURE DUCHENNE.  Please visit a video I posted on YOUTUBE about Duchenne and Kelvin at the following link.
Kelvin and Life with Duchenne

Thanks, Michelle Jones