Re: Can we stop the diet for a while????Help please

[Guest guest]

Carolyn,

I would either call my doctor or take him into the emergency room at the

hospital.

I am not smart enough to help you but I think he has more urgent problems

than the diet.

Hallie

Can we stop the diet for a while????Help please

Hello,

aël is still very bad, he vomits every day, he's tired, has rings

under his eyes, can't drink at all,if I give him orange juice he vomits

immediately...The biologist came this mornig and his blood control shows a

lake of iron, and TGP high,I gave him a bit of sugar to see if he's better

he has been better for 1 hour and after sick again!

I'm desesperated!

Could you tell me if I stop the keto diet for a while if it's a solution?or

it will be impossible to take it back?

I'm scared, I'm alone.

He vomits the trileptal too....

H'e has a better control of seizures since the biginning of the diet and the

dose of trileptal but he's still have t c sz.

He's having a seizure now!!!

I leave you, help please

Carolyn, Nath's mum

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[Guest guest]

Carolyn,

I would either call my doctor or take him into the emergency room at the

hospital.

I am not smart enough to help you but I think he has more urgent problems

than the diet.

Hallie

Can we stop the diet for a while????Help please

Hello,

aël is still very bad, he vomits every day, he's tired, has rings

under his eyes, can't drink at all,if I give him orange juice he vomits

immediately...The biologist came this mornig and his blood control shows a

lake of iron, and TGP high,I gave him a bit of sugar to see if he's better

he has been better for 1 hour and after sick again!

I'm desesperated!

Could you tell me if I stop the keto diet for a while if it's a solution?or

it will be impossible to take it back?

I'm scared, I'm alone.

He vomits the trileptal too....

H'e has a better control of seizures since the biginning of the diet and the

dose of trileptal but he's still have t c sz.

He's having a seizure now!!!

I leave you, help please

Carolyn, Nath's mum

----------------------------------------------------------------------------

----

[Guest guest]

Carolyn,

I would either call my doctor or take him into the emergency room at the

hospital.

I am not smart enough to help you but I think he has more urgent problems

than the diet.

Hallie

Can we stop the diet for a while????Help please

Hello,

aël is still very bad, he vomits every day, he's tired, has rings

under his eyes, can't drink at all,if I give him orange juice he vomits

immediately...The biologist came this mornig and his blood control shows a

lake of iron, and TGP high,I gave him a bit of sugar to see if he's better

he has been better for 1 hour and after sick again!

I'm desesperated!

Could you tell me if I stop the keto diet for a while if it's a solution?or

it will be impossible to take it back?

I'm scared, I'm alone.

He vomits the trileptal too....

H'e has a better control of seizures since the biginning of the diet and the

dose of trileptal but he's still have t c sz.

He's having a seizure now!!!

I leave you, help please

Carolyn, Nath's mum

----------------------------------------------------------------------------

----

[Guest guest]

I can hear such desparation in your email. My

thoughts and prayers are with you. These kids don't

deserve any of this!! Please let me know if you need

anything. I wish I had some advice. We're still

waiting to begin the diet!!

Hugs and kisses

~Jake's mom

--- caronath caronath@...> wrote:

>

> Hello,

>

> aël is still very bad, he vomits every day,

> he's tired, has rings under his eyes, can't drink at

> all,if I give him orange juice he vomits

> immediately...The biologist came this mornig and his

> blood control shows a lake of iron, and TGP high,I

> gave him a bit of sugar to see if he's better he has

> been better for 1 hour and after sick again!

> I'm desesperated!

> Could you tell me if I stop the keto diet for a

> while if it's a solution?or it will be impossible to

> take it back?

> I'm scared, I'm alone.

> He vomits the trileptal too....

> H'e has a better control of seizures since the

> biginning of the diet and the dose of trileptal but

> he's still have t c sz.

> He's having a seizure now!!!

> I leave you, help please

>

> Carolyn, Nath's mum

>

>

>

>

--------------------------------------------------------------------------------

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

[Guest guest]

I can hear such desparation in your email. My

thoughts and prayers are with you. These kids don't

deserve any of this!! Please let me know if you need

anything. I wish I had some advice. We're still

waiting to begin the diet!!

Hugs and kisses

~Jake's mom

--- caronath caronath@...> wrote:

>

> Hello,

>

> aël is still very bad, he vomits every day,

> he's tired, has rings under his eyes, can't drink at

> all,if I give him orange juice he vomits

> immediately...The biologist came this mornig and his

> blood control shows a lake of iron, and TGP high,I

> gave him a bit of sugar to see if he's better he has

> been better for 1 hour and after sick again!

> I'm desesperated!

> Could you tell me if I stop the keto diet for a

> while if it's a solution?or it will be impossible to

> take it back?

> I'm scared, I'm alone.

> He vomits the trileptal too....

> H'e has a better control of seizures since the

> biginning of the diet and the dose of trileptal but

> he's still have t c sz.

> He's having a seizure now!!!

> I leave you, help please

>

> Carolyn, Nath's mum

>

>

>

>

--------------------------------------------------------------------------------

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

[Guest guest]

I can hear such desparation in your email. My

thoughts and prayers are with you. These kids don't

deserve any of this!! Please let me know if you need

anything. I wish I had some advice. We're still

waiting to begin the diet!!

Hugs and kisses

~Jake's mom

--- caronath caronath@...> wrote:

>

> Hello,

>

> aël is still very bad, he vomits every day,

> he's tired, has rings under his eyes, can't drink at

> all,if I give him orange juice he vomits

> immediately...The biologist came this mornig and his

> blood control shows a lake of iron, and TGP high,I

> gave him a bit of sugar to see if he's better he has

> been better for 1 hour and after sick again!

> I'm desesperated!

> Could you tell me if I stop the keto diet for a

> while if it's a solution?or it will be impossible to

> take it back?

> I'm scared, I'm alone.

> He vomits the trileptal too....

> H'e has a better control of seizures since the

> biginning of the diet and the dose of trileptal but

> he's still have t c sz.

> He's having a seizure now!!!

> I leave you, help please

>

> Carolyn, Nath's mum

>

>

>

>

--------------------------------------------------------------------------------

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

[Guest guest]

Blood gases to check for acidosis as a cause for the vomiting are

definitely required Carolyn, and the other possibility is perhaps med

toxicity. The level of medication required to help a bit with the seizures

may have gone too high for him to cope with - vomiting is a common toxicity

symptom.

You probably are at the point of needing to know exactly what is causing

it, if it is acidosis, then taking him off the diet should rectify this, if

he continues to vomit while not in ketosis, then it may point more to med

toxicity.

Taking away ketones may take away some of the meds potency though, as most

med levels are increased by ketosis, so even then you may have trouble

finding out what was causing what.

Yes, you can take him off, and then restart the diet, never having done it

here though, I cannot comment on how easy that process is - if you do go

ahead with this, I would recommend slowly weaning the diet if possible, as

sudden metabolism changes are possibly not gonna be the best for him right

now.

However, if he is having any sort of adverse diet reaction, you may not be

able to wean slowly...

I know your Drs have been very unsupportive with the diet, perhaps this

time round they will be better, both when it comes to deciding whether to

take him off, and how to go about it? Before making that decision, I

personally would want full blood work to see if there is a definite reason

(like acidosis) for the vomiting, as if you take him off and then restart

it, you will need to be aware of what these reactions have been from, so how

to prevent them happening again - once again though, requiring a Dr's input

and interpretation.

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

Hello,

aël is still very bad, he vomits every day, he's tired, has rings

under his eyes, can't drink at all,if I give him orange juice he vomits

immediately...The biologist came this mornig and his blood control shows a

lake of iron, and TGP high,I gave him a bit of sugar to see if he's better

he has been better for 1 hour and after sick again!

I'm desesperated!

Could you tell me if I stop the keto diet for a while if it's a

solution?or it will be impossible to take it back?

I'm scared, I'm alone.

He vomits the trileptal too....

H'e has a better control of seizures since the biginning of the diet and

the dose of trileptal but he's still have t c sz.

He's having a seizure now!!!

I leave you, help please

Carolyn, Nath's mum

[Guest guest]

Carolyn,

Where are your doctors? Why are you doing this all alone? I'm

sure you have described your situation, I just have a hard time

keeping track of everyone. I think giving sugar is too drastic.

What about giving iel 8 oz of applejuice instead? I don't

think you would want to stop the diet and then have to restart, but

certainly if iel's life is in danger then you should stop. I

don't think you are to that point, even though I know things are

tough. What about just going to a lower ratio? Call your doctor and

demand help.

Gretchen

>

> Hello,

>

> aël is still very bad, he vomits every day, he's tired, has

rings under his eyes, can't drink at all,if I give him orange juice

he vomits immediately...The biologist came this mornig and his blood

control shows a lake of iron, and TGP high,I gave him a bit of sugar

to see if he's better he has been better for 1 hour and after sick

again!

> I'm desesperated!

> Could you tell me if I stop the keto diet for a while if it's a

solution?or it will be impossible to take it back?

> I'm scared, I'm alone.

> He vomits the trileptal too....

> H'e has a better control of seizures since the biginning of the

diet and the dose of trileptal but he's still have t c sz.

> He's having a seizure now!!!

> I leave you, help please

>

> Carolyn, Nath's mum

>

>

>

> -------------------------------------------------------------------

-------------

>

>

>

>

[Guest guest]

How about Sodium-based fluids via IV just to keep ketosis going? My

son had to do this while he was in the hospital with pneumonia. He

bounced right back the same day! I would call Pillas at

Hopkins for Emergency Help if you are not getting anywhere with your

docs. After hours, have the Pediatric Neurology resident on-call

paged. They are trained to work with the diet as well. I know they

will tell you that in the worse case scenario, get him hydrated first

and worry about ketosis last.

Best of luck; keep us posted. Please don't wait it out if he won't

eat and has dark circles under eyes with vomiting. Get him to the

hospital.....the pediatrician can get him admitted on the Peds floor

so that you can bypass the ER. This is the set-up I have with my son.

-Sue Ellen:)

> >

> > Hello,

> >

> > aël is still very bad, he vomits every day, he's tired, has

> rings under his eyes, can't drink at all,if I give him orange juice

> he vomits immediately...The biologist came this mornig and his

blood

> control shows a lake of iron, and TGP high,I gave him a bit of

sugar

> to see if he's better he has been better for 1 hour and after sick

> again!

> > I'm desesperated!

> > Could you tell me if I stop the keto diet for a while if it's a

> solution?or it will be impossible to take it back?

> > I'm scared, I'm alone.

> > He vomits the trileptal too....

> > H'e has a better control of seizures since the biginning of the

> diet and the dose of trileptal but he's still have t c sz.

> > He's having a seizure now!!!

> > I leave you, help please

> >

> > Carolyn, Nath's mum

> >

> >

> >

> > ------------------------------------------------------------------

-

> -------------

> >

> >

> >

> >

[Guest guest]

Carolyn

I think the blood gasses might give you a really important idea of whats

up with Nath, and could mean at this point whether you give up on the

diet or are able to do something with it. If not neuro, is there anyone,

ped or family dr who will write requisition for you? It can be done as

capillery (finger prick) or from the arm, its no worse than any other

bloodwork. If there is some way, by hook or by crook, that you can get

it done, I think it would be well worth it. If you got it, and posted

all of teh numbers here (don't let them just give you one number, you

would want ph, bicarbonate, CO2 and base excess numbers) we should be

able to give better adivce as to what to do next.

Also I agree he probably needs an IV to be rehydrated, but no glucose or

dextrose in it. Could you make a deal with one of the drs, get them to

give you IV to rehydrate them and take blood gasses, tell them if they

do that for you and if with that info, you still cannot turn things

around, you will stop the diet for now??

Sending you strength and prayers

, 's mom

caronath wrote:

> It's too difficult really!!!

> I try to contact neuro at hospital and they are intouchable so they

> say I 'll call you back...and I'm waiting for ages!!!

> I'm sure when I 'll got him he 'll say that I have to stop the diet

> without checking blood gaz, I'm nearly sure of it!!!

> Nath is still vomits, even on ratio 3.1

> He drunk 50 ml of jelly water....

> He has had 2 big seizures last night...

>

> I give you some news later,thank for beeing there

>

> Carolyn, aël's mum

> Re: Can we stop the diet for a while????Help

> please

>

>

> Blood gases to check for acidosis as a cause for the vomiting

> are

> definitely required Carolyn, and the other possibility is perhaps

> med

> toxicity. The level of medication required to help a bit with the

> seizures

> may have gone too high for him to cope with - vomiting is a common

> toxicity

> symptom.

> You probably are at the point of needing to know exactly what is

> causing

> it, if it is acidosis, then taking him off the diet should rectify

> this, if

> he continues to vomit while not in ketosis, then it may point more

> to med

> toxicity.

> Taking away ketones may take away some of the meds potency

> though, as most

> med levels are increased by ketosis, so even then you may have

> trouble

> finding out what was causing what.

> Yes, you can take him off, and then restart the diet, never

> having done it

> here though, I cannot comment on how easy that process is - if

> you do go

> ahead with this, I would recommend slowly weaning the diet if

> possible, as

> sudden metabolism changes are possibly not gonna be the best for

> him right

> now.

> However, if he is having any sort of adverse diet reaction, you

> may not be

> able to wean slowly...

> I know your Drs have been very unsupportive with the diet,

> perhaps this

> time round they will be better, both when it comes to deciding

> whether to

> take him off, and how to go about it? Before making that decision,

> I

> personally would want full blood work to see if there is a

> definite reason

> (like acidosis) for the vomiting, as if you take him off and then

> restart

> it, you will need to be aware of what these reactions have been

> from, so how

> to prevent them happening again - once again though, requiring a

> Dr's input

> and interpretation.

>

>

>

>

> ----- Original Message -----

>

>

>

> Hello,

>

> aël is still very bad, he vomits every day, he's tired,

> has rings

> under his eyes, can't drink at all,if I give him orange juice he

> vomits

> immediately...The biologist came this mornig and his blood control

> shows a

> lake of iron, and TGP high,I gave him a bit of sugar to see if

> he's better

> he has been better for 1 hour and after sick again!

> I'm desesperated!

> Could you tell me if I stop the keto diet for a while if it's a

> solution?or it will be impossible to take it back?

> I'm scared, I'm alone.

> He vomits the trileptal too....

> H'e has a better control of seizures since the biginning of the

> diet and

> the dose of trileptal but he's still have t c sz.

> He's having a seizure now!!!

> I leave you, help please

>

> Carolyn, Nath's mum

>

>

>

>

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a

> last resort! "

>

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>

[Guest guest]

Oh Carolyn, I'm so sorry ael is having a hard time. I'm afraid

I don't have an answer, but I will pray that ael gets better

and that you are able to figure all this out, I'm sure someone on

here will provide you with some answers.

Satnam, mom to Kristan, 20 months

Keto kid since August 2003

>

> Hello,

>

> aël is still very bad, he vomits every day, he's tired, has

rings under his eyes, can't drink at all,if I give him orange juice

he vomits immediately...The biologist came this mornig and his blood

control shows a lake of iron, and TGP high,I gave him a bit of sugar

to see if he's better he has been better for 1 hour and after sick

again!

> I'm desesperated!

> Could you tell me if I stop the keto diet for a while if it's a

solution?or it will be impossible to take it back?

> I'm scared, I'm alone.

> He vomits the trileptal too....

> H'e has a better control of seizures since the biginning of the

diet and the dose of trileptal but he's still have t c sz.

> He's having a seizure now!!!

> I leave you, help please

>

> Carolyn, Nath's mum

>

>

>

> --------------------------------------------------------------------

------------

>

>

>

>