Re: tremor like shakes: diet related?

[Guest guest]

Hi Gretchen,

I guess I would suspect seizures too, (with our kiddies, how can we help

it...) but I don't know of any seizures has had that I would call actual

tremors. Well, except for when he was having tonic vibratory seizures late last

yr, but they were never just tremors, they started off with a hiss and a roar

that were very obviously seizures. No guess work was needed there

Stiffening, eyes wide open, a loud yell and then the vibratory/tremor stuff to

follow.

Do you mean 'tetany' below? As in muscle contractions? I def would get bloods

done to rule out any electrolyte/vitamin/mineral problem, but I think the EEG

(as long as he has an episode on there of course) is gonna be the only way to

know for sure.

Because even if his blood work is out of whack, it could be that the result is

a tremor from what your friend says, but it could also be that some seizure

activity is also occurring as a result.

Magnesium and calicum deficiencies are def ones that come to mind, but from

what I have read in the past, magnesium is not that accurately tested through

bloods, as most of it is stored in tissues. It would give you an indication

though, like if very low, then it may be a fairly simple matter of upping his

intake, can you get cal/mag 2:1 or 1:1 supplements ?

----- Original Message -----

From: gretchen_kissock

Has any one heard of shaking as a diet side effect. My son started

having Parkinson's-like shaking episodes last week. They sometimes

lasted 30-40 minutes. He is totally aware of his surroundings and

in control of his thoughts during these episodes, and when they are

over, he is perfectly fine. My neuro wanted to know my gut feeling

about them, and I said, " as much as I hate to admit it, my gut

feeling is that they are seizures " . But on further reflection, I'm

starting to wonder. A pediatrician friend of mine, who I think is

brilliant and sadly is moving away, suggests these shakes could be

due to an electrolyte embalance or a calcium deficiency. She used

the turn " tetne " . She said perhaps it is a long shot, but it could

explain the situation. We are scheduled for a short EEG on Tuesday,

but at this point I'm wondering if blood work might be the more

critical test. Any thoughts?

My son takes a calcium supplement, but Mg is needed to help absorb

the calcium. The vitamin supplement he takes contains only 25% of

the daily Mg requirement.

I hope Stella is recovering nicely from the VNS surgery.

Gretchen

[Guest guest]

We have seen this in Broc also and my feeling was that they were seizures.

He was already having many seizures a day so it wasn't that critical that we

identified them as seizures or not seizures but I always thought they were.

Mike

_____

From: gretchen_kissock

Sent: Sunday, November 21, 2004 9:58 PM

To: ketogenic

Subject: tremor like shakes: diet related?

Has any one heard of shaking as a diet side effect. My son started

having Parkinson's-like shaking episodes last week. They sometimes

lasted 30-40 minutes. He is totally aware of his surroundings and

in control of his thoughts during these episodes, and when they are

over, he is perfectly fine. My neuro wanted to know my gut feeling

about them, and I said, " as much as I hate to admit it, my gut

feeling is that they are seizures " . But on further reflection, I'm

starting to wonder. A pediatrician friend of mine, who I think is

brilliant and sadly is moving away, suggests these shakes could be

due to an electrolyte embalance or a calcium deficiency. She used

the turn " tetne " . She said perhaps it is a long shot, but it could

explain the situation. We are scheduled for a short EEG on Tuesday,

but at this point I'm wondering if blood work might be the more

critical test. Any thoughts?

My son takes a calcium supplement, but Mg is needed to help absorb

the calcium. The vitamin supplement he takes contains only 25% of

the daily Mg requirement.

I hope Stella is recovering nicely from the VNS surgery.

Gretchen

" 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]

We have not experienced this but I have heard that this can be a result of

the meds or the effects of what the meds have done to the CNS? Just last

night at work, a nurse that I wokr with was teeling me about her sister who is

forty and has tremors now. She said that the doctors said that it was side

effects from meds.

So sorry to hear this and I hope that they stop soon.

[Guest guest]

Yes, if you are on the diet, it could well be a vitamin or mineral

deficiency. It might also be medication related, either a toxic reaction

because of " new " metabolism on the diet or a withdrawal reaction if you

are weaning, sometimes showing up weeks later. Usually people use extra

magnesium along with the other supplements. Also make sure that fluids

are being satisfied.

Bill

gretchen_kissock wrote:

>

> Has any one heard of shaking as a diet side effect. My son started

> having Parkinson's-like shaking episodes last week. They sometimes

> lasted 30-40 minutes. He is totally aware of his surroundings and

> in control of his thoughts during these episodes, and when they are

> over, he is perfectly fine. My neuro wanted to know my gut feeling

> about them, and I said, " as much as I hate to admit it, my gut

> feeling is that they are seizures " . But on further reflection, I'm

> starting to wonder. A pediatrician friend of mine, who I think is

> brilliant and sadly is moving away, suggests these shakes could be

> due to an electrolyte embalance or a calcium deficiency. She used

> the turn " tetne " . She said perhaps it is a long shot, but it could

> explain the situation. We are scheduled for a short EEG on Tuesday,

> but at this point I'm wondering if blood work might be the more

> critical test. Any thoughts?

> My son takes a calcium supplement, but Mg is needed to help absorb

> the calcium. The vitamin supplement he takes contains only 25% of

> the daily Mg requirement.

> I hope Stella is recovering nicely from the VNS surgery.

> Gretchen

>

>

>

>

>

>

[Guest guest]

Hi Gretchen. Things have been going so well for Ethan and I'm sorry

to hear about these shakes. Good luck with the EEG on Tuesday.

Satnam, mom to Kristan, 23 months

Keto kid since Aug. 2003 and currently weaning from the diet

>

> Has any one heard of shaking as a diet side effect. My son started

> having Parkinson's-like shaking episodes last week. They

sometimes

> lasted 30-40 minutes. He is totally aware of his surroundings and

> in control of his thoughts during these episodes, and when they are

> over, he is perfectly fine. My neuro wanted to know my gut feeling

> about them, and I said, " as much as I hate to admit it, my gut

> feeling is that they are seizures " . But on further reflection, I'm

> starting to wonder. A pediatrician friend of mine, who I think is

> brilliant and sadly is moving away, suggests these shakes could be

> due to an electrolyte embalance or a calcium deficiency. She used

> the turn " tetne " . She said perhaps it is a long shot, but it could

> explain the situation. We are scheduled for a short EEG on

Tuesday,

> but at this point I'm wondering if blood work might be the more

> critical test. Any thoughts?

> My son takes a calcium supplement, but Mg is needed to help

absorb

> the calcium. The vitamin supplement he takes contains only 25% of

> the daily Mg requirement.

> I hope Stella is recovering nicely from the VNS surgery.

> Gretchen

[Guest guest]

Gretchen

Funny you describe the tremors as " Parkinson's Like " shakes. I have been trying

to explain the same thing to our docs. is just shaking all the time.

His hands at times, curl in (as if they were atrphying due to no use) and just

twicth and shake.

We just dicontinued the diet on Nov 2. I could not take it any more. I am a

single mother and is a seeker. In addition to his epilepsy and ADHD, I

am going crazy with keeping him on the diet. He always wanted to eat.

Since going off the diet he has gained 8 pounds and discovered some allergies.

Wheat, Eggs, Milk and Peanut. He has had diahrrea for 3 weeks now with no

underlying illness (bacteria or viral) We have to go in for more test with an

allergist soon. But, with the runs came the shakes. I can not get them to go

away. They docs added phenobarb right before going off the diet, in addition to

the klonpin, B-6 and the Diamox.

I would be interested in the answer too. I feel that his shaking are seizures

and they last all day long. Go away when he falls asleep and return about 3-4

am for the remainder of the day. Needless to say, I am not sleeping very well.

Jenn

tremor like shakes: diet related?

Has any one heard of shaking as a diet side effect. My son started

having Parkinson's-like shaking episodes last week. They sometimes

lasted 30-40 minutes. He is totally aware of his surroundings and

in control of his thoughts during these episodes, and when they are

over, he is perfectly fine. My neuro wanted to know my gut feeling

about them, and I said, " as much as I hate to admit it, my gut

feeling is that they are seizures " . But on further reflection, I'm

starting to wonder. A pediatrician friend of mine, who I think is

brilliant and sadly is moving away, suggests these shakes could be

due to an electrolyte embalance or a calcium deficiency. She used

the turn " tetne " . She said perhaps it is a long shot, but it could

explain the situation. We are scheduled for a short EEG on Tuesday,

but at this point I'm wondering if blood work might be the more

critical test. Any thoughts?

My son takes a calcium supplement, but Mg is needed to help absorb

the calcium. The vitamin supplement he takes contains only 25% of

the daily Mg requirement.

I hope Stella is recovering nicely from the VNS surgery.

Gretchen

" 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]

What meds is he on? My son used to have tremors, it sounds like this,

though 30-40 min. is a long time. His entire body or parts? Lamictal gave

my son tremors, that's one specific one I remember.

Barb Swoyer

>

> >

> > Has any one heard of shaking as a diet side effect. My son started

> > having Parkinson's-like shaking episodes last week. They

> sometimes

> > lasted 30-40 minutes. He is totally aware of his surroundings and

> > in control of his thoughts during these episodes, and when they are

> > over, he is perfectly fine. My neuro wanted to know my gut feeling

> > about them, and I said, " as much as I hate to admit it, my gut

> > feeling is that they are seizures " . But on further reflection, I'm

> > starting to wonder.

[Guest guest]

For what it's worth....my son was tested via spinal tap for neurotransmitter

diseases. Showed that he was dopamine deficient. A dopamine deficiency can

cause " Parkinsonian " type movements. I think it's more gait related, but

might be " shakes " related too. Do a google search about symptoms of

dopamine deficiency. It can be supplemented, if warranted. Or, this might

be something to ask the neuros about.

Barb Swoyer, Jake's mom

tremor like shakes: diet related?

> Has any one heard of shaking as a diet side effect. My son started

> having Parkinson's-like shaking episodes last week. They sometimes

> lasted 30-40 minutes. He is totally aware of his surroundings and

> in control of his thoughts during these episodes, and when they are

> over, he is perfectly fine. My neuro wanted to know my gut feeling

> about them, and I said, " as much as I hate to admit it, my gut

> feeling is that they are seizures " . But on further reflection, I'm

> starting to wonder.

[Guest guest]

Jaxs had the same tremors on the lamictal. He has not been on that drug since

this last spring. Now that the diet is gone and he is back on Phenobarb, the

tremors are back. I just think that it is not good for the brain to constantly

shake. Seizures beget seizures! The other meds he is on are klonopin, B-6 and

Diamox.

I am trying to think of what drug where the tremors were not present.... I will

have to look into this more. I think that I remember the first time on

phenobarb. THen we switched to another drug (which ended up not working), but

hte tremors went away. Depakote was horrible, as was Dilantin. Zaratin and

Zonogram cause extreme prolonged seizures. His drugs really seem to inpact his

seizure length and severity. He has fail 28 drug combinations all together. He

is waiting for the VNS consult with the UC neurosurgeon. Maybe this will

work.?!@

Jenn

Re: Re: tremor like shakes: diet related?

What meds is he on? My son used to have tremors, it sounds like this,

though 30-40 min. is a long time. His entire body or parts? Lamictal gave

my son tremors, that's one specific one I remember.

Barb Swoyer

>

> >

> > Has any one heard of shaking as a diet side effect. My son started

> > having Parkinson's-like shaking episodes last week. They

> sometimes

> > lasted 30-40 minutes. He is totally aware of his surroundings and

> > in control of his thoughts during these episodes, and when they are

> > over, he is perfectly fine. My neuro wanted to know my gut feeling

> > about them, and I said, " as much as I hate to admit it, my gut

> > feeling is that they are seizures " . But on further reflection, I'm

> > starting to wonder.

" 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]

I just wrote to Barb about Jess doing something like this years ago

pre-diet with Clobazam. Is he on any drugs?

gretchen_kissock wrote:

>

> Has any one heard of shaking as a diet side effect. My son started

> having Parkinson's-like shaking episodes last week. They sometimes

> lasted 30-40 minutes. He is totally aware of his surroundings and

> in control of his thoughts during these episodes, and when they are

> over, he is perfectly fine. My neuro wanted to know my gut feeling

> about them, and I said, " as much as I hate to admit it, my gut

> feeling is that they are seizures " . But on further reflection, I'm

> starting to wonder. A pediatrician friend of mine, who I think is

> brilliant and sadly is moving away, suggests these shakes could be

> due to an electrolyte embalance or a calcium deficiency. She used

> the turn " tetne " . She said perhaps it is a long shot, but it could

> explain the situation. We are scheduled for a short EEG on Tuesday,

> but at this point I'm wondering if blood work might be the more

> critical test. Any thoughts?

> My son takes a calcium supplement, but Mg is needed to help absorb

> the calcium. The vitamin supplement he takes contains only 25% of

> the daily Mg requirement.

> I hope Stella is recovering nicely from the VNS surgery.

> Gretchen

>

>

>

>

>

> " 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]

Gretchen,

We have not been on the diet that long and haven't seen the shaking

you are describing recently. But, Adrielle did a lot of that before

we started the diet. For us, our neuro suspected that her dose of

Lamictal was too high and once we decreased, the " shakes " went

away.

Her shaking episodes also looked like someone with Parkinson's but

included her head moving side to side as well as her hands shaking.

She too was alert and mentally " with it " , and she was able to

perform all of her tasks in therapy.

I know this doesn't help you much, but I wanted to share what we

have seen as well. I know med levels tend to rise in the system

once the diet is initiated, and if anyone else's child is on

Lamictal it could account for some of it. The shakes are a common

side effect of the drug.

Please let us know what you find out.

Take care,

& Princess Adrielle, Keto-Princess, seizure free since 11/5 and

worth every effort!

> For what it's worth....my son was tested via spinal tap for

neurotransmitter

> diseases. Showed that he was dopamine deficient. A dopamine

deficiency can

> cause " Parkinsonian " type movements. I think it's more gait

related, but

> might be " shakes " related too. Do a google search about symptoms

of

> dopamine deficiency. It can be supplemented, if warranted. Or,

this might

> be something to ask the neuros about.

> Barb Swoyer, Jake's mom

>

> tremor like shakes: diet related?

> > Has any one heard of shaking as a diet side effect. My son

started

> > having Parkinson's-like shaking episodes last week. They

sometimes

> > lasted 30-40 minutes. He is totally aware of his surroundings

and

> > in control of his thoughts during these episodes, and when

they are

> > over, he is perfectly fine. My neuro wanted to know my gut

feeling

> > about them, and I said, " as much as I hate to admit it, my gut

> > feeling is that they are seizures " . But on further

reflection, I'm

> > starting to wonder.

[Guest guest]

My daughter on the diet and off medications is very calm, even though

she has hypertonia.

With the Cub and Scout groups that I help with, some of the kids are on

meds for " hyperactivity, depression, etc. " and a lot of them have the

shakes.

Bill

byhisgrace08 wrote:

>

> Gretchen,

>

> We have not been on the diet that long and haven't seen the shaking

> you are describing recently. But, Adrielle did a lot of that before

> we started the diet. For us, our neuro suspected that her dose of

> Lamictal was too high and once we decreased, the " shakes " went

> away.

>

> Her shaking episodes also looked like someone with Parkinson's but

> included her head moving side to side as well as her hands shaking.

> She too was alert and mentally " with it " , and she was able to

> perform all of her tasks in therapy.

>

> I know this doesn't help you much, but I wanted to share what we

> have seen as well. I know med levels tend to rise in the system

> once the diet is initiated, and if anyone else's child is on

> Lamictal it could account for some of it. The shakes are a common

> side effect of the drug.

>

> Please let us know what you find out.

>

> Take care,

> & Princess Adrielle, Keto-Princess, seizure free since 11/5 and

> worth every effort!

>

>

>

>

>

>

>>For what it's worth....my son was tested via spinal tap for

>

> neurotransmitter

>

>>diseases. Showed that he was dopamine deficient. A dopamine

>

> deficiency can

>

>>cause " Parkinsonian " type movements. I think it's more gait

>

> related, but

>

>>might be " shakes " related too. Do a google search about symptoms

>

> of

>

>>dopamine deficiency. It can be supplemented, if warranted. Or,

>

> this might

>

>>be something to ask the neuros about.

>>Barb Swoyer, Jake's mom

>>

>> tremor like shakes: diet related?

>>> Has any one heard of shaking as a diet side effect. My son

>>

> started

>

>>> having Parkinson's-like shaking episodes last week. They

>>

> sometimes

>

>>> lasted 30-40 minutes. He is totally aware of his surroundings

>>

> and

>

>>> in control of his thoughts during these episodes, and when

>>

> they are

>

>>> over, he is perfectly fine. My neuro wanted to know my gut

>>

> feeling

>

>>> about them, and I said, " as much as I hate to admit it, my gut

>>> feeling is that they are seizures " . But on further

>>

> reflection, I'm

>

>>> starting to wonder.

>>

>

>

>

>

>

>

[Guest guest]

Gretchen,

Is your son on Keppra, by any chance?

I'm asking because we saw something similar which we

thought was due to Keppra.

Saro...Rohan's mum