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Sorry to abord you like that but I'm crying, I'm so desesperated!

aël is vomiting!!!!I'm sure it is because I've increased the ratio to

2.5.1, he's on acidosis again!

I have to stop the diet and it was our last hope!I'm so scared to stop it!

And of course I'm alone!

I don't even know why am I telling you all this ???Maybe I fell less alone

talking to both of you...

Carolyn,aël's mum

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Carolyn,

It is so hard, I know. There are just so many things that can go wrong

with the diet. If you don't have any help, it is much worse. Vomiting is

so common on the diet until you get things right and your child is

accustomed to it. It could be ketones being too high. You can check the

signs for too high ketones.

It could also be from reflux, constipation or too much food at once, or

something else.

If you have to reduce the ratio to stop the vomiting, then you have to

do it until he is able to handle the higher ratios.

It is all so confusing when you don't know the reason(s) for the problems.

We had much the same experience when we started the diet.

Bill

caronath wrote:

> Sorry to abord you like that but I'm crying, I'm so desesperated!

> aël is vomiting!!!!I'm sure it is because I've increased the ratio to

2.5.1, he's on acidosis again!

> I have to stop the diet and it was our last hope!I'm so scared to stop it!

> And of course I'm alone!

> I don't even know why am I telling you all this ???Maybe I fell less alone

talking to both of you...

>

> Carolyn,aël's mum

>

>

>

>

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Carolyn,

can you do a fast for 24 hours with just water to try and get him into

better ketotis? Have you given him a drink of orange juice at all?

hang in there, you are not alone. Do you have an disability office

near you, you should call and see if they can give you any help. Maybe

they can sponsor you to go to England or the US for a consult.

amanda

On Wednesday, September 15, 2004, at 12:36 PM, caronath wrote:

> Sorry to abord you like that but I'm crying, I'm so desesperated!

> aël is vomiting!!!!I'm sure it is because I've increased the

> ratio to 2.5.1, he's  on acidosis again!

> I have to stop the diet and  it was  our last hope!I'm so scared to

> stop it!

> And of course I'm alone!

> I don't even know why am I telling you all this ???Maybe I fell less

> alone talking to both of you...

>

> Carolyn,aël's mum

>

>

>

>

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Dear Carolyn

Here are instructions I've got from Sick Kids hospital.Names of

medications are what we have in Canada,so you should check for

analoges with your local pharmacy

Vomiting and Diarrhea

1.Monitor for signs of dehydratio and ensure that lost fluid is

replaced

2.Measure urine specific gravity,it should be below 1.035

The signs of dehydration are:

irritability

decreased urine/few wet dipers

dry mouth or tongue

dark circles around eyes

fatigue

Vomiting

1.Give a Gravol suppository immediately to relieve nausea.Follow the

instructions on the package

2.Encourage your child to drink all of the fluid allowance and give

small amounts often

3.Provide an oral rehydration formula(such as Pedialyte) wich can be

purcgased at your local pharmacy.Dilute it 1:1(i.e 250 ml

Pedialute+250 ml of water).Provide this until meals are tolerated

4.Monitor urine specific gravity to check hydration status

I hope it helps

Natasha , mom to 2 years old ph, suspected SMEI/Dravet's

syndrome,keto kid since August 23 2004

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Carolyn, I'm so sorry you're going through such a difficult time.

I'm afraid I don't know what to say to help you, as I don't know

anything about reflux or acidosis. Francesca vomited in the

beginning, but it was clearly because her ketones were sky high, and

it seems ael's ketones are not so high.

Maybe a 24 hour fast would be a good idea, to increase his ketones,

but obviously keep the fluids up to keep him hydrated.

What drugs is he still on, you were weaning one I believe?

I feel so helpless saying you're not alone, and I just wish we could

do more. Do you have any friends/family to be with you and support

you through this?

I am thinking of you, Carolyn.

, Mum to Francesca, Keto Kid since September 03, drug free

since May 04

> Sorry to abord you like that but I'm crying, I'm so desesperated!

> aël is vomiting!!!!I'm sure it is because I've increased

the

ratio to 2.5.1, he's on acidosis again!

> I have to stop the diet and it was our last hope!I'm so scared

to stop it!

> And of course I'm alone!

> I don't even know why am I telling you all this ???Maybe I fell

less alone talking to both of you...

>

> Carolyn,aël's mum

>

>

>

>

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Carolyn

I am wondering......just because he vomits, it may not mean that he is

too acidic, he shouldn't be at a 2.5:1 ratio, not unless he had some

sort of pre-existing problem with acidosis or is somehow similar to

's daughter, Langan. Perhaps the vomitting with the new ratio is

from reflux, his tummy just has trouble with the fat. Perhaps try

Bill's suggestion for reflux first and see if that helps the vomitting.

Its really not a high enough ratio that acidosis should be a problem

, 's mom

wendymmw wrote:

> Carolyn, I'm so sorry you're going through such a difficult time.

> I'm afraid I don't know what to say to help you, as I don't know

> anything about reflux or acidosis. Francesca vomited in the

> beginning, but it was clearly because her ketones were sky high, and

> it seems ael's ketones are not so high.

>

> Maybe a 24 hour fast would be a good idea, to increase his ketones,

> but obviously keep the fluids up to keep him hydrated.

>

> What drugs is he still on, you were weaning one I believe?

>

> I feel so helpless saying you're not alone, and I just wish we could

> do more. Do you have any friends/family to be with you and support

> you through this?

>

> I am thinking of you, Carolyn.

>

> , Mum to Francesca, Keto Kid since September 03, drug free

> since May 04

>

>

>

> > Sorry to abord you like that but I'm crying, I'm so desesperated!

> > aël is vomiting!!!!I'm sure it is because I've increased

> the

> ratio to 2.5.1, he's on acidosis again!

> > I have to stop the diet and it was our last hope!I'm so scared

> to stop it!

> > And of course I'm alone!

> > I don't even know why am I telling you all this ???Maybe I fell

> less alone talking to both of you...

> >

> > Carolyn,aël's mum

> >

> >

> >

> >

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Carolyn,

When Tanner was vomiting the Nuero told us it was from the seizures.

Hallie

Re: Re: HELP HELP PLEASE!!!

Carolyn

I am wondering......just because he vomits, it may not mean that he is

too acidic, he shouldn't be at a 2.5:1 ratio, not unless he had some

sort of pre-existing problem with acidosis or is somehow similar to

's daughter, Langan. Perhaps the vomitting with the new ratio is

from reflux, his tummy just has trouble with the fat. Perhaps try

Bill's suggestion for reflux first and see if that helps the vomitting.

Its really not a high enough ratio that acidosis should be a problem

, 's mom

wendymmw wrote:

> Carolyn, I'm so sorry you're going through such a difficult time.

> I'm afraid I don't know what to say to help you, as I don't know

> anything about reflux or acidosis. Francesca vomited in the

> beginning, but it was clearly because her ketones were sky high, and

> it seems ael's ketones are not so high.

>

> Maybe a 24 hour fast would be a good idea, to increase his ketones,

> but obviously keep the fluids up to keep him hydrated.

>

> What drugs is he still on, you were weaning one I believe?

>

> I feel so helpless saying you're not alone, and I just wish we could

> do more. Do you have any friends/family to be with you and support

> you through this?

>

> I am thinking of you, Carolyn.

>

> , Mum to Francesca, Keto Kid since September 03, drug free

> since May 04

>

>

>

> > Sorry to abord you like that but I'm crying, I'm so desesperated!

> > aël is vomiting!!!!I'm sure it is because I've increased

> the

> ratio to 2.5.1, he's on acidosis again!

> > I have to stop the diet and it was our last hope!I'm so scared

> to stop it!

> > And of course I'm alone!

> > I don't even know why am I telling you all this ???Maybe I fell

> less alone talking to both of you...

> >

> > Carolyn,aël's mum

> >

> >

> >

> >

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I am not sure that a fast would be that helpful. He has been doing

poorly for some time and must be weak and have lost weight.

I do of course agree with keeping fluids up as that is essential.

If anything I would suggest reducing calories to 1025 and going to 3

meals and 2 snacks, as that would address reflux which I believe is the

most likely candidate for the problems being experienced.

Sorry to disagree, but I hope that I have the best interests of

aël in the fore.

Bill

stansfield/lyonsfamily wrote:

> Carolyn,

> can you do a fast for 24 hours with just water to try and get him into

> better ketotis? Have you given him a drink of orange juice at all?

> hang in there, you are not alone. Do you have an disability office

> near you, you should call and see if they can give you any help. Maybe

> they can sponsor you to go to England or the US for a consult.

>

> amanda

> On Wednesday, September 15, 2004, at 12:36 PM, caronath wrote:

>

>

>>Sorry to abord you like that but I'm crying, I'm so desesperated!

>>aël is vomiting!!!!I'm sure it is because I've increased the

>>ratio to 2.5.1, he's on acidosis again!

>>I have to stop the diet and it was our last hope!I'm so scared to

>>stop it!

>>And of course I'm alone!

>>I don't even know why am I telling you all this ???Maybe I fell less

>>alone talking to both of you...

>>

>>Carolyn,aël's mum

>>

>>

>>

>>

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Carolyn,

I take tums if I need to for reflux which is an antacid. If ael is

acidic the bicarbonate would help that and make him less acidic at the same

time.

Has he been tested lately to see if he is really too acidic? Hallie.

Re: HELP HELP PLEASE!!!

> I am not sure that a fast would be that helpful. He has been doing

> poorly for some time and must be weak and have lost weight.

>

> I do of course agree with keeping fluids up as that is essential.

>

> If anything I would suggest reducing calories to 1025 and going to 3

> meals and 2 snacks, as that would address reflux which I believe is the

> most likely candidate for the problems being experienced.

>

> Sorry to disagree, but I hope that I have the best interests of

> aël in the fore.

>

> Bill

>

> stansfield/lyonsfamily wrote:

> > Carolyn,

> > can you do a fast for 24 hours with just water to try and get him into

> > better ketotis? Have you given him a drink of orange juice at all?

> > hang in there, you are not alone. Do you have an disability office

> > near you, you should call and see if they can give you any help. Maybe

> > they can sponsor you to go to England or the US for a consult.

> >

> > amanda

> > On Wednesday, September 15, 2004, at 12:36 PM, caronath wrote:

> >

> >

> >>Sorry to abord you like that but I'm crying, I'm so desesperated!

> >>aël is vomiting!!!!I'm sure it is because I've increased the

> >>ratio to 2.5.1, he's on acidosis again!

> >>I have to stop the diet and it was our last hope!I'm so scared to

> >>stop it!

> >>And of course I'm alone!

> >>I don't even know why am I telling you all this ???Maybe I fell less

> >>alone talking to both of you...

> >>

> >>Carolyn,aël's mum

> >>

> >>

> >>

> >>

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Carolyn,

My heart goes out to you. I know you are all alone and you are

struggling. I wish you had better support from doctors and family.

I have no answers for you, but you have my complete admiration and

empathy. You are one tough mom. If I think of anything to help,

later, I will post. I see a lot of posts to you; hopefully they

contain helpful suggestions.

Thinking of you,

Gretchen

> Sorry to abord you like that but I'm crying, I'm so desesperated!

> aël is vomiting!!!!I'm sure it is because I've increased the

ratio to 2.5.1, he's on acidosis again!

> I have to stop the diet and it was our last hope!I'm so scared

to stop it!

> And of course I'm alone!

> I don't even know why am I telling you all this ???Maybe I fell

less alone talking to both of you...

>

> Carolyn,aël's mum

>

>

>

>

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Oh Carolyn, I'm so sorry you are alone in this. I wish I could give

you some advice. I'll pray that you can get through this and things

settle down soon.

Satnam, mom to Kristan, 21 months

Keto kid since August 2003

> Sorry to abord you like that but I'm crying, I'm so desesperated!

> aël is vomiting!!!!I'm sure it is because I've increased the

ratio to 2.5.1, he's on acidosis again!

> I have to stop the diet and it was our last hope!I'm so scared to

stop it!

> And of course I'm alone!

> I don't even know why am I telling you all this ???Maybe I fell

less alone talking to both of you...

>

> Carolyn,aël's mum

>

>

>

>

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