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Hi Cindy,
Joshua is 6 and weighs 56lbs. He is on deflazacort instead of prednisone, but with it he takes:
1/2 Protandim,
100mg coQ10
Learning Factors School Aid
5mL Carnitine twice per day
1mg Folic acid
500mg L-arginine
multivitamin
1200mg Omega 3-6-9
1/2 B complex
Calcium & Vit. D (500mg & 200IU)
125 mg Magnesium
400 IU Vitamin D
2 x Calm 4 Kids at bedtime
chocolate covered espresso beans as needed throughout the day
We crush and mix it all up with whatever is his favorite that day. He used to be able to swallow them, but is unable to now for some reason. Whatever way we can get it down works though!
Naomi
At what age did you start giving all these supplements to your children. My grandson is only 4 1/2 years old. He is on Deflazacort, CoQ10 and Vit. D. Dr. Wong didn't recommend any other supplements. I assume most parents incorporate these supplements on their own, but at what age do you begin and how do you choose which ones??? Terry
Joshua's mom said:Hi Cindy,
Joshua is 6 and weighs 56lbs. He is on deflazacort instead of prednisone, but with it he takes:
1/2 Protandim,
100mg coQ10
Learning Factors School Aid
5mL Carnitine twice per day
1mg Folic acid
500mg L-arginine
multivitamin
1200mg Omega 3-6-9
1/2 B complex
Calcium & Vit. D (500mg & 200IU)
125 mg Magnesium
400 IU Vitamin D
2 x Calm 4 Kids at bedtime
chocolate covered espresso beans as needed throughout the day
We crush and mix it all up with whatever is his favorite that day. He used to be able to swallow them, but is unable to now for some reason. Whatever way we can get it down works though!
Naomi
For those of you giving your sons L-arginine, how are you giving it to them? The capsules I have are huge and my son can't swallow them.
Thanks,
Cindy
Sorry to hear about your son's diagnosis.
Our son takes Deflazacort. It really wasn't a choice we made. We live in Canada and that is the standard of care at our Children's Hospital. We saw an improvement as soon as he started taking it. I know this is not always the case though as all boys respond differently to the steroids. He was on the same dose from age 4 until about 6 months ago at age 11. He started to have a much harder time with stairs, we increased his dose to 24 mg/day and things seem to have levelled out a bit. He is quite small, only a bit taller than his 6 year old sister, but he is thicker through his middle.
The only side effects he had, which sometimes I forget about because it was so long ago, were dry mouth and he got hairier. These things only lasted for a short time. There may have been other minor side effects that went away too, but these are the only two I can think of at this time. He has no behavior issues or changes. He does not have cataracts yet. He is, of course, short, but that just makes it easier to walk - even if he doesn't like being smaller than all his friends.
Let me know if you have any more questions and if I can help at all through this very difficult time.
Angela
amit gupta said:
hi angela, we have a 7 yr old diagnosed 2 wks ago, so we are a wreck right now....does your son take defl or pred?
hi im KP mom, when my son was diagnosed at age 4 1/2 years of age i did my own research and started him on certain vitimins that was adult form because i knew that even though his body age was 4 his body was deterating alot faster he is now 18 happy to say doing well he was not sick until he was 15 almost 16 with first bout of pnemonia he has never taken any steroids i gave asataphalus and a protein drink and his multi, cal,e,grapeseed extract, fishoils,co enzemy Q10 replenex and started creatine about 6 months ago. he had a kidney stone removed in september surgery went fine but to intubate him they had difficult so they tryed three times and did some damage to his throat so he rushed back to hospital wasnt breathing due to the sever swelling lost him twice the day before he turned 18. but they got him back and said he is a srong kid he was in iCU for two weeks they put a feeding tube in after 5 days not beable to eat or speak we had to learn sign language real quick luckly my boyfriend had taught us some earler. and i crushed his vitimins up and gave it through the tube they said they thought he should have a trac and tube and he refused so we went home with a feeding tube and i started given him green tea and then with in a few days he could at least swollow and he asked for his supplemants and drink he had differculty with the tube in he said get it out and i can do it. So we took him to the drs and they removed it and he has been eating eversence and make sure he gets his supplements and cretine and his protein drink He will graduate this summer a national honor roll student and want to be a architectural designer. but all his test come back really well and the drs say what ever you are doing keep doing it because it is very unusual not to have not seen him by age of 15. and the whole time he was there for two weeks he was on no antibiotics and never got sick. no break down of skin either. what i would recomend is the turning bed as your boys grow it helps alot with circulation and keeping everything moving we just got his through donations when he got home from hospital and he is alot warmer and i dont have to get up and turn him every hour or two take care with all this i still feel i have been blessed we dont take life for grant it and be prepare for anything life changes in a blink of eye but you can always find something positive thank you sandy
Naomi,
I am amazed no one asked this,
because I'm dying to know (maybe I missed it):
why espresso beans?
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