I'm new to the discussion and searching for as much information as possible. I linked into your Caring Bridge website -- thank you for sharing. I'm hoping you can tell me what supplements you're using, and I'd love more information about the MRI study in Florida. My son was diagnosed just 3 months ago, and we're currently wrestling with the steroid issue. Any insights you can offer would be helpful. Thank you!
My son has been on steriods, creatine and glutamine for almost a yr. He is 3 1/2 yrs old and seems to have really picked up in the activity level even though he still doesn't seem to be as quick as others his age. So, i am also not sure if it is due to the supplements or the steriods. We have not used the CoQ10 yet. We were unable to find it anywhere local. What seems to be the most tolerable one (i know there are chews out there)
We started our son on steroids at four and it was a very difficult decision. We just did 10 on/ 10 day off until we were comfortable going to daily. It doesn't have to be all or nothing, you can start slow if you need to to wrap your mind around it. My son is now almost nine and doing great. If I had to do it over, I might have looked at weekend dosing when he was that young, that way there was still growth but also preservation. I think there are no easy answers and I certainly don't believe any which way is necessarily right. I think you have to decide as a family what you are comfrotable with. Don't forget, YOU are the expert in your son.
Hi Jenny! I am happy you found us, but sad you had to join us too. It's a lot to take in. I learned last September and am just now beginning to settle down from the shock. So take your time.
All the research I've seen says that if the boys can tolerate the steroids, then it's worth the risk because it reduces the chances significantly for scoliosis complications. One of the biggest problems for our boys is any compromised respiratory and cardiac care. Scoliosis is a BIG problem with maintaining optimal care because the spine curvature reduces respiratory capacity.
I was VERY skeptical too. My thoughts came from the point of why risk all the side effects for just a few years of extra walking. DMD parents, don't hate me for that statement because it's not about me wanting to see my son walk longer. I had no idea that the studies on steroid treatments clearly showed that the benefits in a longer life, not just quality of life. So Jenny... while you are in an unfortunate position like the rest of us to make a major treatment decision for your son, I truly believe this is a better alternative to the surgeries required for scoliosis and risks for increasing respiratory stress.
We get our liquid CoQ10 from epic4health.com. This was the site recommended to us by Dr. Wong. They also give a discount if you're a patient of Dr. Wong's...just put the information in the comment box when checking out.
I think this webpage had a lot of good information about supplements. It is www.mannatech.com. It has helped my boys with their education performance, you know better grades and stuff and behavioral issues. You can get it cheaper if you are interested through www.mannarelief.org. We sponosored our own children for like 120.00 for three months and got about 3,000.00 worth of supplements. It has lasted us 1 1/2 years.
Vitamin supplements are wonderful for the boys - providing you get the dosage right. (even water is toxic if you drink too much of it).
Creatine is an organic acid that supplies energy to muscles and nerves. About half of our daily creatine requirement is biosynthesized from the amino acids: arginine, glycine and methionine (which can be found in a variety of foods listed below), the rest of it we gain from our daily food intake.
Whilst it is not lethal, it is recommended to be taken only in small doses as it can cause kidney damage if taken in large doses. There have been initital studies that indicate long term use is not dangerous, however many nutrionists prefer a cyclic dosage if it is going to be taking for long periods of time. It is also important to note that water intake must be increased when on creatine, as the muscles absorb more water during periods of growth/activity, so dehydration can be an issue whilst on the supplement.
The three amino acids converted to creatine are all readily available naturally:
Arginine is found in dairy products, whey protein, beef, pork, chicken, seafood, wheat germ, soy beans and chocolate (yey) to name a few.
Glycine is mainly generated from another amino acid - threonine. This is found naturally in meat, dairy and eggs.
Methionine is in highest quantitires in sesame seeds, brazil nuts, spinach, potates and cooked corn.
So if your children are already getting plenty of these foods, a creatine supplement may not be as beneficial as it would for a child thats diet is lacking.
Lean cuts of meat will always provide your children with the amino acids they require, as they are of course animal muscle when all is said and done. All studies confirm that the essential amino acids needed for muscle growth are found in the highest quantities in fresh meat (which is why body builders favour a high protein diet).
CoQ10 converts food energy to cellular energy (ATP) to all cells containing mitochondria, but does have contraindications with certain medications, so it is important to always let your doctor/specialists know what supplements your son is taking.
If you are unsure about the dosage of supplements for your son (and these should be done on ug/kg basis, not on a ml/age basis have a talk with a sports nutritionist or a naturopath, as they will be able to work out the best regime for your son. They will also advise which supplements would be beneficial, as you could be doubling up (for example if you administer creatine with L-arginine).
Also check if there are any known contraindications with the steriods, or whether or not the supplements will increase/decrease the efficacy of them, as this can happen depending on what you are taking.
There is also one other factor that can often be overlooked when caring for our children - our own health.
Mums and dads were not designed to lift children once they could walk, but in our situation we have little choice. It is therefore important that you make sure you are getting sufficient quantities of essential amino acids - as your muscles will have to work much harder than is normally expected for a longer period of time. So if/when you start your son on supplements, don't be afraid to discuss your own needs as well - speaking from experience there is nothing more frustrating than trying to care for your son when you have put your back out.............
Hey "Squirrel!" Impressive as usual! Do you have Mitch on any of these supplements? (I know I will have to wait a while for the answer since you are half way around the world and should be sleeping about now:)
Joshua has been on creatine since he started his deflazacort. We get it prescribed and haven't had any weight issues. Joshua is also on COq10, a multivitamin, omega 3,6,9, calcium, magnesium, vit. D, and chocolate covered coffee/espresso beans for the ADD side-effect the steroids have on him. None have caused negative side-effects.
My son sees an ND. She ran a blood test to see what aminos, Kian was defiecient in and had a compund pharmacy make up a bottle. It is great. It is from metabolic maintanance. Does everyone on creatine push water?