Lowering CPK


One indication, as I understand, used in clinical trials to check Duchenne treatment efficacy is to check change in CPK's level.


I ask from all parents who changed their son's diet or supplements intake and checked the CPK before and after the change, to share their results with me, Hadas and all other
interested families and boys.


If you post thanks a lot. please try to post only facts and as much facts as possible and try to limit to facts around the period that the CPK checks conducted. (Falls around the CPK
checks? Steroids? If yes which? Mutation? Age ? Etc..).


Hadas's Two different CPK reading and diet change in between provided below:


1              Facts


·         Hadas born December 4th, 2006


·         3-7 duplication


·         Twisted his ankle on April


·         No steroids


 


2.            First Reading


CPK reading on May 27, 2010 ---------15047


3.            Diet & supplement change after May 27th , 2010


Food & supplements

Date started (day.month.year)

amount

comments

Milk and Diary

15.6.10

No milk, very limited diary

Based on research pointing to efficacy of it

Junk food, corn & sesame limiting

21.6.10

limited

 

Turkey

14.6.10

meal

(~3 times a week)

Green tea

21.6

400

Based on research pointing to efficacy of it

Q10

14.6.10

60

 

Vitamin E

14.6.10

400

 

Multi Vitamin

14.6.10

Including B3,B6

 

Omega 3

21.6.10

EPA 180

 



 


4.            Second CPK reading


CPK reading on June 28, 2010 ----12679


5.            Conclusion


 


CPK was lowered after change in Diet. This might have a correlation. I really don't know.


Lots of love to all family out there,


 


Nimi (Hadas's father)

Views: 2387

Replies to This Discussion

Hi Nimi, I have just seen this chat from quite awhile ago and wondering how things are going 2 years down the track for you.  We were diagnosed in July this year.  Dylan born 2003.  We started a no complex carb, (to iimprove gut function and digestability/absorption) for 6 months.  No processed foods, no dairy, no grains and no sugar and weren't too sure if it made a difference or not at the time, however, found this took its toll and required so much organisation. We went on holiday and came back and now back on grains, gluten free as wheat a noticeable change in behaviour, and noticing changes with Dylan.  He is falling over a lot more and complaining of sore legs, so we are not sure if it is the change of diet, and running out of l-carnitine at the same time, or just the condition worsening.  I have been looking for someone with the same or similar exons missing and also not taking steroids.  His CK levels did drop 3 months ago at last visit to paediatrician, next vist next month so will be interesting to see change.  We may go back to no complex carb diet, and we were eating more red meat and loads more veges and fruit but dont think rest of family will do it again so will be harder if just Dylan doing it.  Just wanted to know if you persued this and whether you thought it helped 2 years down the track.  Look forward to hearing from you.  Kindest regards.  Debbie  

Dear Debbie:

In a nutshell same here:

found all this dietary efforts took its toll and required so much organization so we dropped the efforts.

I did not run into any substantial study that will prove anything--except steroids and heart medication. Nothing else. Some supplements are in advance stages of clinical trials.

I wish a dietitian will conduct a multi national trial. mabye it has been. Please feed me with a study if you know of any recent done.

All the best to you and your family

Nimi

I am curious to find out anyone's opinion on Dr. Saul's approach to MD...

http://www.doctoryourself.com/dystrophy.html



Tammy said:

I am curious to find out anyone's opinion on Dr. Saul's approach to MD...

http://www.doctoryourself.com/dystrophy.html

Thanks Tammy for that - I think I came across this first when my son was diagnosed 2 years ago.  Since then we give him COQ10 mixed with peanut butter and his Vit D in the mornings, as it helps with absorption to be given with an oily food.  Plus he cant swallow tabs as has terrible gag reflex.

I have asked our biomedical paediatrician to take a look at that article to see what she thinks.  Our son is currently on the following:

Sujon blackcurrant powder - high antioxidant particular for muscles - 1 tsp twice daily

CoQ10 400mg /day

Vit D 6000 iu/day (tested every 3 months)

Acetyl l carnitine

ALA - taking a break at present

NAC - taking a break

Soaked chia seeds 1 tbsp in smoothie

1 tbsp flaxseed oil in smoothie

Blue/Green Algae

Vit b methyl cobalamin

Zinc (gel and tab)

Trialling Product B by Isagenix

Magnesium (spray and tab)

Good probiotic twice daily

Need to look at selenium, calcium, vit e and a product to help his gut as sensitive to the steroids.

Poor kid is amazing with what we give him, as takes it all, I suppose he is old enough to understand at 9. It is always good to review and try other things.  We did use Green Tea extract but found the blackcurrant much better.  Will post back once the biomed paed has been in touch with neurologist.  But once we had the vaccinations (Dylan unvaccinated due to asthma allergies etc) prior to having the steroids, his CK shot right up, and he got sick for the first time in 2 years.   Anyway dfz making a difference in his stamina, tho still falling over the same. Dylan only diagnosed 2 years ago and took us 2 years to decide about the steroids so we decided not to as they only offered prednisone here, and now we get dfz from the UK and get a liquid, which was not available before. Damned if we do and damned if we dont. First 2 years did massive supplementation instead of steroids and Dylan very healthy, CK low, but was getting weaker.

Thanks for bringing this to our attention again.  Misty Van Der Weele also now talking about importance of nutrition, especially gluten and nitrate free fyi.  Be good to carry on this discussion.  Good to have biomed paed on board as well. Luckily our health insurance covers as Dylan has ADHD due to chronic gut issues which biomed paed treating with use of supplements.

Thanks Debbie,

I found a very interesting video by Dr. Campbell McBride on ADHD and Gut disbiosis.... http://www.youtube.com/watch?v=Z_0NvcJZwa8

I have heard many successful stories from parents who have used her protocol for Autism and auto immune issues.  I contacted her and she recommends that we give our son CoQ10, high quality fish oil, cod liver oil, biokult probiotic and to follow the GAPS diet for two years. I am slowly introducing this, however our nutritional doctor believes we should limit a few of the recommendations in the diet.  

I will talk to him about some of the supplements you are using...  I know he mentioned avoiding all oils, raw foods and green tea.  He suggests cooking with turmeric and eating lots of pineapple.  Selenium is very important along with Vitamin E and DNA/RNA (supplement they use in baby formula).  We mix complete nutritional mix into his milk along with a glucose metabolizer you can find at www.natureshospital.com

 

Interesting you are trying that, the probiotics we use are from Dr McBride and I have read her book.  We did all do the GAPS diet but I was at home then and it was doable just very time consuming.  I have to work 4 days a week and just cannot do it, my husband who is a house husband and working from home just cannot do it himself, so we have given up on that unfortunately, but keen to know how you get on. We did it for 6 months but could just not sustain it, so I wish you all the very best.  We do what we can right.  Our Biomed deals mostly with autistic and adhd kids and the supps we use she has recommended but does not know much about duchenne md but has a neurologist friend in the States who she gets info from.  Interesting about the oils from your Dr, we use the flax seed oil as Dylan just wont take fish oil.  He also does better off Dairy so use Hemp Milk or grind cashews into milk, used to do Almonds, but changed to cashew.  Turmeric great for immune and we use this in our cooking a lot too, interestingly enough this is in the Product B mix of anti oxidants.  Pineapple definitely good for the gut.  Chia seeds also super food for muscles so we give those soaked overnight in the smoothie.  We soak organic whole grain oats tho not sure if they are contributing to tummy troubles or if its just the steroid and try to avoid too many grains for him.  What do you do for the tummy?  Let's swap notes, so great have met another mum who is like minded.  Our Neurologists here shocking, dont recommend COQ10 or anything else for that matter apart from huge Vit D tabs and all the allopathic stuff of course, including Losec for Dylan's tummy.  We are trying slippery elm instead a few hours after the steroid.  Ciao for now.

I think Dr McBride is brilliant!  I read the book as well.....fascinating!  Our nutritional dr says that MD boys have compromised GI tracts and everything they eat must be cooked (no lettuce, lunch meats etc). He also says if we give any (fish) oil it must be with pineapple and ginger. He says probiotics can cause constipation if too much is used, so we need to adjust the dose here and there.  Our doc recommends raw goat milk, however I have not been able to find a farm that offers this in our area yet, so I've been giving him raw cow's milk.  I've been sneaking all of TJ's supplements in homemade yogurt or a smoothie and he loves it, but he's only 4 so I'm sure that will change once he catches on.  The doc also recommends a liver detox & regenerator: 

http://www.nowfoods.com/Liver-Detoxifier-and-Regenerator-90-Veg-Cap...

we used to use this on a regular basis, but now his multi includes many of these ingredients so we just use that. We use Carlson lemon flavored cod liver oil and Eskimo brainsharp fish oil and TJ never has a problem with it (as long as its in a smoothie or yogurt with fruit). Frozen banana hides everything, haha.  TJ is not on steroids so he doesn't complain of stomach issues.  If you haven't already, you should also check out Joshua's Mom, her son is doing well and is on dfz but taking a lot of supplements that have really seemed to help...http://community.parentprojectmd.org/profile/Joshuasmom

Thanks Tammy, yes raw milk is great, a lot of our friends do it, and yes goats milk even better, my daughter was on it as a baby. I dont think we have raw goats milk either, only pasteurised, but evidently fat molecules smaller and more easily absorbed by our guts.  Will monitor the probiotics then from what you say.  Will check out Joshuasmom's site.  Will TJ go on the steroids?   What deletions does he have? How.is he doing.  Great you enjoy Dr McBride too, it certainly opened my eyes.  Will let you know if any further developments on the nutrition front.  Take care. Regards Debs

TJ has deletion of exon 45.  His doctor also recommended no sugar in his diet (except from fruit) and he also takes a chewable enzyme tablet with every meal.  This helps in digestion as well, along with beef or chicken broth.  http://www.amazon.com/NOW-Foods-ChewyZymes-90-Chewables/dp/B001B3ZO...

TJ used to fall a lot when we would go on walks, and usually tired out very quickly.  Now he rarely falls and has a little more stamina.  He still needs to lean on a wall or his leg to get up steps, but I can tell it gets much harder for him if we are off the supplements for a while, or if he's been eating a lot of processed foods (like at family functions or holidays).

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