Re: Going out of my mind!!!! I need to vent!

[Guest guest]

Your message sounded very famaliar. I actually spent the evening last night writing a letter to our dietician since we have several areaa where we disagree and I wasn't getting anywhere over the phone. We were told to use BB sugar free too and when I asked if I could try to research (and verify with the company the carb content) another vitamin could I show it to them and have them approve it and the pharmacist (she is the one that does the supplements were we are, not the dietician) said absolutely not. I couldn't believe it! I have told several people this (including one doctor) and some of the other issues I am having and everyone said "It's YOUR daughter, you have a right to do what you want." It sounds so simple doesn't it. And it makes sense. Unfortunately, it doesn't always work that way. You have my sympathy! Good luck!

[Guest guest]

Ditch the dietitian. There are so many people on this list on their own

(myself not included because my dietitian makes sense). Can you count on

your neurologist's support if you talk about this with him or her? As

long as you have a good neurologist and meal planner, books and this

support group what do you need her for? Even Hopkins doesn't prescribe

Bugs Bunny. Hope you have better days! Ariane (Dillon,6,ketokid since

July)

[Guest guest]

Dear :

Here is a little clue to success-(this is not advice LOL) Just agree with her tell her you will do as she says and do what you feel is working. Listen to her-listen to this list and do what works best.

No one is going to check your cupboards or your sales receipts to see what you bought!

Hugs

Diane

Going out of my mind!!!! I need to vent!

Ok, here goes! I know I don't post often, but I really need to vent! Our dietician called today, and told me to take my daughter off the vit she is currently taking. (She takes Nu-Thera with P5P, and Kirkman's Vit C) She wanted me to put her back on the Bugs Bunny! I of course said, I refused to put her on the BB vit. An arguement ensued over what we would do... She then told me to use either, "Nature Made Century Vit" or "One A Day Max". ANY ADVICE????This is the same woman who didn't want my daughter to lose any weight, (she was 67lbs when she started the diet), 50% would put her at 50lbs... So she was 17lbs over the 50%, and they didn't want her to lose any weight!?!?Further, I was giving my daughter Flax Oil (started very slowly and worked up with no problems), she wanted me to stop immediatly! The list goes on and on... They have said no to MCT Oil, They wanted us to put her at a 4.2:1 ratio, etc, etc, etc...I'm just getting to my breaking point with them and needed to vent. "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

[Guest guest]

The whole team is like this! I made a call to another center today,

so we'll see, I'm waiting for them to call me back.

The doctor we were seeing there, is moving anyway in a couple of

months, so I think it's time for us to move on too!

[Guest guest]

Or you could just say "OK, I'm giving her the Bugs Bunny" but then just continue to give her what you're giving her. What reason's does she give for saying you shouldn't use the Kirkman's NuThera? If you're using the hypoallergenic one, it's carb free. I talked to their chemist myself about that one. Sounds like a lousy keto team to me.

Patti, mom to Katera

Re: Going out of my mind!!!! I need to vent!

The whole team is like this! I made a call to another center today, so we'll see, I'm waiting for them to call me back. The doctor we were seeing there, is moving anyway in a couple of months, so I think it's time for us to move on too!

[Guest guest]

Dont know how much help I can be but I do have this bit of advice that

I have heard from another woman on this list: "This is your child,

not the dieticians/doctors" You have to do what you feel is best for your

child.

We were told to use the centrum forte vitamin but my son couldnt swallow

them and they are hard to crush so we switched to the centrum jr complete

vitamin, he doesnt mind them as much as he can chew them. There is

carb in them (1g I believe).

On a different note - do you have the info for the kirkman vit c? I

need to find a keto friendly vit c (I remember someone saying they used

a powder and it was ok - if you are reading can you refresh my memory as

to where to find this?)

Mike is having problems with seizures due I think in part to constipation

(altho when he does go his stools are not hard at all)

I am not familiar with your daughters situation so I have no idea why

the dietician would want to increase the ratio and not include MCT oil

and stop the flax immediately but like I said before - you need to decide

what is best for your child and if you think something is working then

why rock the boat. My son takes MCT oil and he is doing well (despite

a rough few days with withdrawl seizures)

Good luck and let us know what you decide to do.

Jenn

shannon_and_todd wrote:

Ok, here goes! I know I don't post

often, but I really need to

vent! Our dietician called today, and told me to take my

daughter

off the vit she is currently taking. (She takes Nu-Thera

with P5P,

and Kirkman's Vit C) She wanted me to put her back on the

Bugs

Bunny! I of course said, I refused to put her on the BB vit.

I was giving my daughter Flax Oil (started very slowly and

worked up with no problems), she wanted me to stop immediatly!

They have said no to MCT Oil, They wanted us

to put her at a 4.2:1 ratio

[Guest guest]

With regards to the Vit C, we use " Kirkman Vitamin C 250 mg " , their

web site is: www.kirkmanlabs.com

Our daughter doesn't have good seizure control this go around (she

was on the diet for 2.5 years before with VERY good control.) I'm

certain the biggest reason for the lack of control is her weight,

although she is now down to 54lbs. She has always had poor ketones

in the am, which is why I wanted to use MCT oil. Their answer is to

increase her ratio to 4.2:1 (which by the way we didn't do!). She is

currently on a 4:1 (Previously on the diet she was as high as a

5:1). We saw the effects of this, which is why we will NEVER put her

above a 4:1....

UGH, I know ya'll are right about just say what they want to hear,

but I just dread her appointments anymore. I want a supportive Keto

team!!!! LOL I guess that's where you all come in! LOL

[Guest guest]

Forgot to add the reason the dietician doesn't want her to take the

Nu Thera is because she doesn't get any Iron, and a few others that I

asked her to tell me (which she didn't), and because she said that

with that much Vit B her liver or kidneys (I don't remember which)

would be toxic... Evidently the restriction of water and the

abundance of Vit B is not a good combination????

[Guest guest]

Okay -- I don't know about the iron, but I had asked

my dietician about iron and was told exactly the

opposite -- that unless she was anemic, she didn't

need an iron supplement. As for the B vitamins --

they are extremely important for anyone with a

neurological condition. I don't know about the

relationship to water restriction -- but we do not

have any fluid restriction. If we had, I would have

never done the diet, living in Arizona.

Here's what I would do -- call or e-mail Kirkman Labs.

They have a very knowledgable and responsive support

staff. Explain what you've been told -- ask them why

they don't include iron in the NuThera formulation and

ask about the B vitamin question. I would trust what

they have to say over what your dietician is telling

you -- especially any dietician who would recommend a

vitamin like Bugs Bunny!

It's frustrating, I know. Someone explained it to me

like this, though -- dieticians are essentially taught

to work the numbers -- this many grams of carbs, fats

and proteins. They are not taught much about the

value of what's in those grams. Therefore, a gram of

carb, is a gram of carb, is a gram of carb. Most (not

all) of them are simply not knowledgeable in stuff

like this.

Remember, too, this is your child, not theirs! Take

care--D

--- shannon_and_todd wrote:

> Forgot to add the reason the dietician doesn't want

> her to take the

> Nu Thera is because she doesn't get any Iron, and a

> few others that I

> asked her to tell me (which she didn't), and because

> she said that

> with that much Vit B her liver or kidneys (I don't

> remember which)

> would be toxic... Evidently the restriction of

> water and the

> abundance of Vit B is not a good combination????

>

>

__________________________________________________

[Guest guest]

sounds like your dietitian needs to be treated like I treat my dietitian

and Dr.... on

the " need to know " bacis.

Some things they just DONT NEED TO KNOW!!!!!

Barb

On Thu, 02 May 2002 01:15:56 -0000 " shannon_and_todd "

writes:

Ok, here goes! I know I don't post often, but I really need to

vent! Our dietician called today, and told me to take my daughter

off the vit she is currently taking. (She takes Nu-Thera with P5P,

and Kirkman's Vit C) She wanted me to put her back on the Bugs

Bunny! I of course said, I refused to put her on the BB vit. An

arguement ensued over what we would do... She then told me to use

either, " Nature Made Century Vit " or " One A Day Max " . ANY ADVICE????

This is the same woman who didn't want my daughter to lose any

weight, (she was 67lbs when she started the diet), 50% would put her

at 50lbs... So she was 17lbs over the 50%, and they didn't want her

to lose any weight!?!?

Further, I was giving my daughter Flax Oil (started very slowly and

worked up with no problems), she wanted me to stop immediatly! The

list goes on and on... They have said no to MCT Oil, They wanted us

to put her at a 4.2:1 ratio, etc, etc, etc...

I'm just getting to my breaking point with them and needed to vent.