Re: Re: older keto kids

[Guest guest]

i wondered if anyone has had the problem of

osteoporosis with their teens or older kids. bill, you

mentioned that you stopped aeds because of this, did

your daughter actually get it? matthew saw a doc

yesterday who said that matthew did have osteoporosis

and that calcium was leaching out of his bones and

that this could cause kidney stones. the doc also

admitted that aeds do cause osteoporosis - a warning

to all of you with younger kids as i didn't know this

until bill mentioned it.

jill, are you out there? have you had any problem with

this? they want to give him injections of PAMIDRONATE.

i did some research on this and by the side effects

sounds like it would counteract all the good that the

diet is doing, it even says that it can cause

seizures!

we told the doc that we wanted to do some research

first. we are really wary of drugs after all the

damage they have already done.

what i am really asking is if anyone knows of any

alternate therapy for this. i feel that it may be too

late for that.if you know of anything , it would be

greatly appreciated.

cheers, andrea.

--- jasonsmom jasonsmom001@...> wrote:

> HI -

> I was so sad to see the post about also...it

> seems that a lot of people have had some good

> suggestions though. Maybe someone else has

> mentioned this, but I was curious if was

> still taking the carn-a-ware? I think I remember

> you starting it in the spring/summer? As for the

> metabolic questions, I'm afraid I'm no help there.

> Have you had any help from the local neuro and/or

> Dr. Wang and Theresa? It has to be so frustrating,

> but you are asking a lot of good questions and if

> anyone can find out what's going on, I'm sure you

> can! Have a wonderful holiday and keep me posted.

>

>

> gretchen_kissock gretchen_kissock@...> wrote:

>

> HI ,

> As I scrolled backwards through many of the posts

> I've missed

> recently, I just had to get to the original " Decline

> on the Diet "

> post. I'm so sad to see it came from you. You've

> had lots of

> responses, which I'll brouse if time allows. I'm

> sure others had

> some good suggestions for you.

> I'm baffled by the lack of congnitive progress.

> That goes against

> everything I assume about getting off meds.

> About the illnesses, I don't think these kids have

> much

> resistance. Ethan used to hardly ever get sick.

> When he struggled

> so much with siezures, we used to make a big deal

> about his strong

> immune system. But, he has been catching a lot of

> bugs this fall

> and winter. Sometimes every two weeks, as you have

> experienced.

> Ethan hasn't grown, either. Maybe only a

> fraction of a cm. This

> at a time when the girls in his class are all sky

> rocketing. Ethan

> looks to be years away from puberty. And he was

> small to begin with.

> But, in our case it is just the price we have to pay

> for the clear

> mind and no seizures, I guess. Hopefully, he will

> get off the diet

> before his main growing years are over.

> But, with you are not getting the

> cognitive results so it

> is harder to make this sacrifice.

> I'm all for gathering more info. I'll be

> curious to see what

> others say, but it seems to make sense to try the

> whole milk

> experiment.

> What about lowering his ratio to 3:1? Maybe he

> would do just as

> well on that as on 4:1. It would probably take

> awhile to see if

> that would help the cognition and growth, but you

> would probably

> find out pretty quickly about the seiszures.

> I'm thinking you are in the postition to make

> this decision

> better than anyone else. One of the many things I

> love about our

> nuero is that he really takes parental intuition

> into account in

> deciding upon course of treatment. (Or maybe he is

> just a master at

> making me think that!)

> I hope you get some answers. I'll always be

> pulling for .

> Gretchen

>

>

>

> > Hi gang-

> > For whatever reason, I've been questioning the

> > efficacy of the diet lately and wonder how much

>

> > is benefiting. I'm sure some of you may wonder

> from

> > time to time how your children may respond " off "

> the

> > diet if their seizures are somewhat controlled or

> 100%

> > controlled. I guess now I'm having some doubts

> > whether fully adjusting to running on

> ketones

> > vs. glucose.

> >

> > I just can't forget how not only regressed

> > cognitively but physically after starting this

> diet.

> > I don't believe in coincidence at all and just

> thing

> > it's plum strange how one wk. after being on keto,

> he

> > turned into a dif. kid. At first, he had huge

> > coordination issues and lots more seizure

> activity.

> > Then he started to lose words, regress

> cognitively,

> > then the hypotonia started in.

> >

> > 's growth has also been affected. He hasn't

> > grown (taller) in one year and has remained the

> same

> > shoe size for one year. Is this normal?

> >

> > In addition, it seems I've recognized a trend

> w/him

> > coming down w/illnesses every two wks. which bring

> on

> > a seizure at the onset of the illness. Granted,

> we

> > have 4 children so we are probably germ infested

> but

> > this also doesn't seem normal.

> >

> > 's been on the diet for 1.5 years (started

> the

> > diet at the age of 1.5).

> >

> > I guess I'm wondering if any of you can think of

> > anything metabolically that could be going on that

> > might have been unmasked by the diet.

> >

> > Hmmm.... or is it possible for the brain to just

> > resist ketones?? I have read that though the

> brain

> > naturally prefers glucose, it can adapt to

> ketones.

> > Yes, I know that but something tells me this diet

> > might have brought on whatever the underlying

> cause

> > for the seizures are.

> >

> > I read in Freeman's book that if you are a parent

> who

> > wonders how their child will do off the diet - to

> give

> > them whole milk in place of the cream for 2 wks.

> which

> > lowers the ratio to 3:1. If they tolerate it,

> wait

> > two more wks. then give skim milk in place of the

> > whole milk. Has anyone ever tried this?

> >

> > Well, thanks for listening - I just can't seem to

> > shake the feeling that has really declined

> > while being on the diet. The good news is, his

> > seizures are down to one every two wks. or so (and

> > occur between 4-6am) and the diet has allowed us

> to

> > get off of medication. Do these declines seem

> normal?

> >

> > Thanks! (mom to )

> >

> > __________________________________________________

> >