Re: Oooh did I get a tongue lashing!

[Guest guest]

Halina,

<<He told me that he had a patient die on the diet because s/he wasn't

compliant.>>

I don't believe that! I think he's just trying to scare you! If a child died

while on the Keto diet, I'd bet that there was a lot of other stuff going on at

the same time....... possibly complicated by medication issues....... OR,

somebody wasn't doing their job and properly educating the parent and/or

monitoring the child! The diet is serious business for sure.... but a good team

can really minimize the risk. I truly think that doc is misleading himself if he

believes the DIET is what killed that child!

Sorry, that just really got to me!

I'd have to agree...... don't send e-mails to your dietician anymore if she's

just going to rat on you!

Patti

[Guest guest]

Hi Halina

I hope you see an improvement now that you have a proper set of scales to use.

If we had only trialled the diet for 1 month, would not have

continued on it. However, on Tuesday she will have been on it 1 year. We

have had many ups and downs and have had to be vigilant with finetuning,

but it has been worth it because she has been seizure free for a month now

and has made so many gains cognitively (and she is on less than half of her

lamictal).

Hang in there Halina . . . and don't quit the diet unless you believe it is

the right thing for your child.

Jill

At 11:02 AM 9/27/02, you wrote:

>I found out today that the dietician forwarded my email asking about the

>Carnitine to the neuro and in that email I said a few nasty things about

>him (like asking why he didn't give Kaitlynn Carnitor when she was on

>Valproic Acid instead of giving it to her now? Plus a few other things

>concerning the diet and how he just wants to push pills!)and he was not

>very happy with me. He told me that he had a patient die on the diet

>because s/he wasn't compliant. He said that Kaitlynn's seizure activity

>hasn't changed (We've only been on the diet a month!) Was it here that I

>heard that you should really check how the diet is progressing in three

>months? He's very adamant that it should only take a month and you will

>see definite results!

>I also told them that my scale broke and I'm not about to go out and spend

>another $200 for one and I told them that I was using the mechanical scale

>and that's when the dietician piped up and said that we were probably off

>by a gram or two so it would throw the diet off. Well after the meeting

>with the neuro, which to me felt like I was being told that the diet won't

>work and we will be going back to meds ( and I really don't have a

>choice, the neuro nurse asked my husband to come out or the room and I was

>wondering what they were doing so we ended the meeting and when I went

>around the corner Edgar (neurology nurse) was showing him a scale that we

>can use until we get ours back. OH was that a relief!! It's so nice

>having a proper scale again!

>I really didn't like this meeting because I was basically told that I have

>one month to show it is working or else it's back to the drugs! Mind you

>he did say that he would get a second opinion but this other doctor's

>first appointment is February 5th! So what is the point of going if our

>present neuro ends up taking us off the diet??. I'm going to try my

>hardest to show that it WILL work! So that was my interesting

>appointment! I guess I should tell the dietician to NOT forward my emails

>to the neuro next time, or else I'll just call her. Oh and the neuro also

>said that starting next week we are going to go in once a week to meet

>with the dietician and neurology nurse to see how things are going. Guess

>he figures that I will think it's a bother and won't want to do it. He

>doesn't know me very well! LOL! Well I think it will be better since I

>have a decent scale now )

>Halina

>We gain strength, and courage, and confidence by each experience in which

>we really stop to look fear in the face...we must do that which we think

>we cannot

>

>

[Guest guest]

Halina,

Oops!!! Why on earth did your dietician do a dumb thing like that? Wouldn't

worry too much though, neuro sounds like a bit of a worry - time to move on

to another???

Cripes - if everyone had that attitude, to only wait a month for results,

we've have a pretty empty keto board right about now..........

Guess you have to at least listen to what you're being told there, but you

also know that the parents here on this board are living this, and there are

a lot more around to personally 'speak' to than your neuro would have had

experience with.

Glad the scales issue is sorted for now - pretty important to get that

right!

Good luck, hope you're about to prove them all wrong too,

Hill

> I found out today that the dietician forwarded my email asking about the

Carnitine to the neuro and in that email I said a few nasty things about him

(like asking why he didn't give Kaitlynn Carnitor when she was on Valproic

Acid instead of giving it to her now? Plus a few other things concerning

the diet and how he just wants to push pills!)and he was not very happy with

me. He told me that he had a patient die on the diet because s/he wasn't

compliant. He said that Kaitlynn's seizure activity hasn't changed (We've

only been on the diet a month!) Was it here that I heard that you should

really check how the diet is progressing in three months? He's very adamant

that it should only take a month and you will see definite results!

> I also told them that my scale broke and I'm not about to go out and spend

another $200 for one and I told them that I was using the mechanical scale

and that's when the dietician piped up and said that we were probably off by

a gram or two so it would throw the diet off. Well after the meeting with

the neuro, which to me felt like I was being told that the diet won't work

and we will be going back to meds ( and I really don't have a choice, the

neuro nurse asked my husband to come out or the room and I was wondering

what they were doing so we ended the meeting and when I went around the

corner Edgar (neurology nurse) was showing him a scale that we can use until

we get ours back. OH was that a relief!! It's so nice having a proper

scale again!

> I really didn't like this meeting because I was basically told that I have

one month to show it is working or else it's back to the drugs! Mind you he

did say that he would get a second opinion but this other doctor's first

appointment is February 5th! So what is the point of going if our present

neuro ends up taking us off the diet??. I'm going to try my hardest to show

that it WILL work! So that was my interesting appointment! I guess I

should tell the dietician to NOT forward my emails to the neuro next time,

or else I'll just call her. Oh and the neuro also said that starting next

week we are going to go in once a week to meet with the dietician and

neurology nurse to see how things are going. Guess he figures that I will

think it's a bother and won't want to do it. He doesn't know me very well!

LOL! Well I think it will be better since I have a decent scale now )

> Halina

> We gain strength, and courage, and confidence by each experience in which

we really stop to look fear in the face...we must do that which we think we

cannot

>

>

[Guest guest]

WHERE DID YOU PURCHASE THE SCALE??

WE HAVE OUR ORIGINAL ONE (18 MOS NOW)

NOT SURE HOW LONG THEY LAST

THANKS

SANDI

[Guest guest]

WE ARE FINE TUNING THE DIET NOW

DID YOU CHECK BLOOD KETONES AND GLUCOSE DURING THIS TIME??

MY DAUGHTER HAS BEEN ON THE DIET FOR 18 MOS AND NEVER SEIZURE FREE BUT SO

MUCH LESS AND IMPROVED ACADEMICALLY

SO WE ARE TROUBLE-SHOOTING THE DIET NOW

ANY SUGGESTIONS??

SANDI, MOM TO ZARA 8 YRS OLD

[Guest guest]

Halina,

Sorry to hear about all your troubles. Why is it that dieticians and doctors

think they own our children? The ultimate decision to stop the diet is yours

not theirs. They can advise you and you should listen and make an informed

decision. But, if after 1 month you are not satisfied that the diet was given a

fair shot you should continue it until you are certain it's working or not.

Alot of us have these same problems with unsupportive ketogenic teams. It's up

to the parents to be in charge here and take some bold steps on our own. I know

I have to do it too. They force you to stop the diet and go back to meds if you

aren't comfortable with that decision. ly, I'd find a new neuro if they

had that kind of attitude. Good luck. Glad you got the scale thing figured

out. I ordered a small one off the internet. It only cost $45 and works great.

If you want more info on it I'll get it for you.

in KS

[Guest guest]

Halina,

The Freeman book says it can take 10 weeks in some cases before you see ANY

improvement. For that reason most clinics want you to give the diet a 3

month trial. In our case, we saw an improvement for a couple days

immediately after we left the hospital, then the sz actually got slightly

worse for a month or so. We really didn't see any significan improvement

until 6 weeks (and that was after doing a little fine-tuning). is not

seizure free, but we've seen about a 50-75% reduction in sz. The seizures

are also less severe and is able to recover more quickly. He's also on

very little meds so is actually able to function again. The diet was not the

miracle cure we'd hoped for, but we're very happy with the results and it

certainly beats anything else we tried. The diet may or may not work for

you, but if you give up so early, you'll never really know for sure.

Good luck

ashley

's mom

----------

To: <ketogenic >

Subject: Oooh did I get a tongue lashing!

Date: Thu, Sep 26, 2002, 8:02 PM

<< Was it here that I heard that you should really check how the diet is

progressing in three months? He's very adamant that it should only take a

month and you will see definite results! >>

[Guest guest]

I truly think that doc is misleading himself if he believes the DIET is what

killed that child!

Sorry, that just really got to me!

I think he truly does believe it Patti! The way he was talking he definitely

was blaming the diet.

I'd have to agree...... don't send e-mails to your dietician anymore if she's

just going to rat on you!

Patti

I've learned my lesson! She won't be getting anything from me!

Halina

[Guest guest]

Hi Halina

I hope you see an improvement now that you have a proper set of scales to use.

Thanks Jill! I've definitely seen an improvement with Kaitlynn and she's

measuring the highest on those keto stix (urine) and she's NEVER done that

before! It looks like we're on the right path now )

but it has been worth it because she has been seizure free for a month now

and has made so many gains cognitively (and she is on less than half of her

lamictal).

What wonderful news Jill! It makes me more positive when I hear results like

this ) I should print up my answers that I got to this post and throw them at

the neuro LOL!

Hang in there Halina . . . and don't quit the diet unless you believe it is

the right thing for your child.

Jill

I DO NOT want to quit but I will weigh the options at the end of the month. I

truly want her to do this and with everyone's help here I KNOW I can )

Halina

[Guest guest]

Our epileptologist told us the diet was " dangerous " . We switched doctors right

away because with everything I read I knew better, and I wanted to try the diet.

Best thing we ever did!

Bob

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