ketogenic diet

[Guest guest]

My son was diagnosed at 8 months with a PDH deficiency and Leigh's

disease. The ketogenic diet has shown some success with his

deficiency so we began it last October when he was about 10 months.

He's tube fed exclusively so we don't have to deal with the struggles

of getting him to eat the foods on the diet. We had a lot of

struggles with the diet and it really took a lot of tweaking of the

diet to get it " right " and he struggled with it for a couple of

months. He has seizure activity and actually the seizures increased

while he was going into ketosis but levelled out later. He's

adjusted to it nicely by now, but I can't say that we've seen a

significant change in terms of energy increase. Whether it's slowed

the progression of the disease (which is why it's recommended) is more

difficult to tell but he's doing well overall so perhaps it's had some

benefit. I'd encourage you to try it if there's medical evidence that

it can help because you don't want to question yourself later. She

may take to it really well from the beginning, but if not, just be

patient and hang in there for a couple of months. The diet is also

problematic because if they get a cold, you have to worry about what

cough medicine, motrin, etc. to give because they're all sugar

flavored and you have to account for these carbs in connection w/ the

diet. Hopefully you have good contact w/ the doctor's office who can

help you out with this. Good luck!

>

>

> Hello all,

>

> I searched the archives to see if the Ketogenic diet has been a

> discussion in the past and came up empty handed.

>

> I was wondering if there is anyone who has tried the Ketogenic diet?

> especially with Complex I? I have read good results for Complex I

> patients in the Mito newsletters.

>

> My 8 year old daughter is scheduled to start it Mach 14. It seems

> very restrictive and difficult but at this time we are willing to

> try anything.

>

> Thanks for any advice, tips or words of encouragement.

>

> , Ci

ncinnati Support Group

[Guest guest]

We have been doing the ketogenic diet now for over 6 years. My daughter has

PDH which has responded well to this diet. Her seizures are under control

(no meds) and her energy levels increased. We initially did both oral and g

tube forms of the diet, but now only do g tube formula. (MCT version)

I am happy to try and answer any questions

ne, in Australia