L-Carnosine/Osteoporosis

[Guest guest]

Listmates,

I'm sorry I haven't posted sooner, and Saro I just realized I owe you a

response to Ainsley's Osteoporosis dilema.

First I'll comment on L-Carnosine. Yes, we are a Chez patient and decided to

try it. We were not part of his official study. He has the supplement

componded at Keefers Pharmacy in Mt. Prospect, IL. The cost is $25 per

bottle which lasts two weeks. The capsules come in 200 mg and the starting

dose is about 400 mgs 2x's per day.

There are a total of 4 of us Chez patients in contact with one another who

has/had their child on the L-Carnosine. 2 kids clearly saw benefits, and one

child saw probable benfits, but Mom stopped the supplement and will restart

to see if the imrovement was due to the L-Carnosine. As for Ainsley, I

believe that with coincidental timing it was NOT a benefit to her. She was

only on it for 2 weeks because I saw an increase in extreme silliness and

goofy behavior as well as the start of partial seizures

As I mentioned, was it just coincidental timing? One theory could be that

Ainsley was set to have an increase in seizures and the L-Carnosine kept them

on the mild side? What I believe the problem of the moment is, is that

Ainsley is growing and needed an increase in calories. So, we are waiting

and watching for the moment. I would consider trying the L-Carnosine again

at later date just based off the results my friends kids have had.

Okay, now on to osteoporosis. Last year the treatment goal was to wean down

on the ratio and really push alkaline foods, as well as physical therapy for

Ainsley's feet because she was not walking properly, and therefor not

benefiting from weight bearing exercise. She was not on Polycitra.

This July our world changed as Ainsley began to have her nasty myoclonic as

well as adding drop seizures. So, back up on the ratio and pray that the

seizures get back under control, deal with the osteporosis at a later date.

Current treatment for osteo? We are still choosing to not treat. I do have

a prescription for Polycitra LC that I will begin once Ainsley if comfortably

stable again. Ainsley's feet have improved immensely with therapy, so we do

take a 20 minute walk several times per week, and hope it helps. A friend of

mine's daughter was on the Calcitonin injections and they did not make much

of a difference.

I will be most interested in hearing how Rohan does with the infusion of

Pamidronate. My understanding is that this would probably be our next step.

One final comment, Ainsley is stable for the time being . . . not seizure

free, but she remains drug free. Every day that she maintains status-quo is

a good day for us. I believe that puberty hormones are running around in her

and I'm afraid we'll be no match for them. So we are taking one day at a

time.

Happy holidays to all!

Lori R.

(Ainsley has been a keto-kid for 5-1/2 years now