Re: help needed desperately

[Guest guest]

Patti,

Well, I really don't have my wits about me. I'm a complete sobbing mess.

OK- no IV. The first one blew and every time they tried to get another one

in she had a seizure.

Electrolytes are fine. Potassium is 140 if I remember correctly.

Dairy has caused seizures in the past, but maybe....... Do you think it

would work better than what I've done so far?

I will try coconut oil in the morning.

We have two friends that practice Reiki and Jin Jitsu. One is out of town.

Left a message for the other one and haven't heard back yet. Hoping we can

get him to come tomorrow.

Thank you so much. I wish you could hold my hand too. I need something like

that. It must be obvious, because one of the residents actually gave me a

big hug out of the blue.

Jen

[Guest guest]

Oh, Jen.... I'm so sorry this is happening. I barely know what to say. I'm not sure I would have my wits about me at all if I were in your situation. It just sounds like this virus has totally wracked her poor little body. I will just throw out some ideas but please remember, I'm not sure if any of these are suitable for Marissa... (allergies, etc?)....or if you've already tried them....

I assume they have her on an IV? Are you absolutely sure of what's in it? How about electrolytes? (I may be just saying some things that are totally dumb here... so bear with me) Are they giving her anything to rebalance electrolytes? Have they checked her potassium level?

Can she have cream? Would it maybe be worth a shot to get her ketones back that way? I can't remember if she can have dairy at all.

Have you tried coconut oil? You would have to melt it and mix it with other pureed food. Coconut oil is an anti-viral, so maybe it would help, although, it sounds like she may not be absorbing much right now. At least it might take out some lingering virus bugs on it's way through her?? (I told you, I'm grasping at straws here.) I just know it's very healing.

Don't you know someone who does Reiki? Maybe I'm remembering wrong. It might be worth a shot just having someone lay hands on her body.... get her energy rebalanced as much as possible???? Is there anyone you could call? I wish you lived near us.... I have a good friend who would be there in a heartbeat.

I don't know if this helps but I just looked Keppra up and it says it's primarily metabolized through the kidneys, not the liver. I would agree... you have to do something to stop this cycle.... but I know how reluctant you must be to put her on anything. (((((((((Jen))))))))))

I don't know what else to say but I'll post again if I think of anything. Wish I could be there to hold your hand through this.....

Patti

help needed desperately

Hi everyone.Marissa is still in the hospital. She has been there a week now. Seizures started two weeks ago with a bought of the stomach flu.Last Saturday we were sent home in the morning, only to return by ambulance at 10pm. She started seizing at 9am and stopped at 10pm. Diastat did nothing.Sunday was slightly better in the morning. She was at least a little alert. Then gone again by nighttime. Monday morning was horrible but last night she was actually playing even though she couldn't hold her head up well. Then today has been beyond horrible. She has had only 6 tonic clonics all day. But she is not recovering at all. She does not respond to her name. She doesn't look at me. Her reflexes are gone. Ketones in blood are small. In urine they are small as well. I have been giving straight oil through her tube because she is not able to eat. It does nothing to raise ketones. She is not able to hold her head up or even wiggle her fingers. I am afraid she is dying. And no one has given me any reasurrances that she isn't. We are most likely starting Keppra in the morning. She has been drug free since June 2000. She had problems with her liver with drugs before where the docs were wondering about transplant. So I'm terrified. I don't want her to live in a drug stupor again. But I have to do something.Here's all I can think of to share. Maybe someone can help.She has had Tai brand coconut milk (calculated the new extra carbs in) and oil, heinz chicken, gerber apple sauce, and safflower oil through her tube. Tried 6:1, 5:1, 4:1 and straight oilShe lost 4 pounds in two weeks during and after the fluI used to give Carnitor. Stopped a while ago. Had levels done and found she was slightly deficient. Didn't start it again until yesterday because her poop is so oily I don't think she is absorbing the fat. The dietician says it will take a week to know if the Carnitor is it.No meds other than diastat, which doesn't work anyway most of the time latelyNo lotions or soaps aside from the natural baby shampoo I have always used.Please please give ideas. I think Marissa is going to die one minute and then the next I think I can help her. I hope the latter is true, but i don't know.Thank youJen "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]

Jen,

One more thought.... have they checked her blood sugars? When the body is fighting an infection, the sugar will run high no matter what you're feeding her..... and that could be the cause of the constant seizing. Trouble is, how to get past the virus or infection. I have heard that this flu that's going around is just terrible and goes on and on.... I just thought maybe this could be a clue to whether or not her body is still doing battle with the bug... cuz there is no way you would see high blood sugars given what you are feeding her. I don't think I would stay with just the straight oil if this is so.... she's going to have to have *some* carb and protein or you could risk her sugar dropping too low, too. I would ask them to check it.

love,

Patti

help needed desperately

Hi everyone.Marissa is still in the hospital. She has been there a week now. Seizures

[Guest guest]

Can you try some olive leaf extract?? Also an anti-viral.... I don't know if that makes any sense to try herbs and such. Black elderberry extract, too (tho it has some carbs). I just don't think I would worry too much about sticking strictly to the diet. Everything is out of whack and her body isn't going to respond in the usual way and produce ketones when she's in this state. Do you have any Bach flowers? Rescue Remedy? You could just rub that on her temples and wrists... she doesn't have to injest it. YOU could use some, too, for that matter. It's helpful for shock and trauma.

Like I said.... grasping at anything that comes to mind.

Poor sweetheart, it sounds like even trying to get the IV in was just a shock to her and any little thing is setting her off.

Where are you? I can't remember where you live..... just so I can focus my thoughts in your direction.... I'm right beside ya, in spirit.

Hang on.... and don't forget to breathe.

Patti

Re: help needed desperately

Patti,Well, I really don't have my wits about me. I'm a complete sobbing mess.OK- no IV. The first one blew and every time they tried to get another one in she had a seizure.Electrolytes are fine. Potassium is 140 if I remember correctly.Dairy has caused seizures in the past, but maybe....... Do you think it would work better than what I've done so far?I will try coconut oil in the morning.We have two friends that practice Reiki and Jin Jitsu. One is out of town. Left a message for the other one and haven't heard back yet. Hoping we can get him to come tomorrow.Thank you so much. I wish you could hold my hand too. I need something like that. It must be obvious, because one of the residents actually gave me a big hug out of the blue.Jen "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]

Oh, Jen. . . I don't know how much wisdom I have. I

just wish I could give you and Marissa a big hug. It

just sounds like the virus and meds (the Diastat she

has had) have her completely out of whack. When

went status, it was a few days later that she was like

what you describe, not so much from the seizures, but

from the Ativan working its way out of her system. I

didn't know if I'd ever see my little girl again --

but I did.

Can you go back to just being very basic with the diet

for now -- like eggnog (oh yea, that's cream. . .would

that work?).

Can you contact your homeopath and see what he/she

recommends -- would the hospital even let him/her near

there?

I guess you could start the Keppra just to see if you

get some control and then always wean later. . . it's

adding another variable in, though.

The ratios you listed are pretty high -- could she be

too deep in ketosis?

This is all I can think to offer right now. . .except

lots and lots of prayers. Take care, go for a walk if

you can, go sit in the chapel or sit outside --

whatever helps you stay strong.

I'll keep thinking. . . please keep us posted.--D

__________________________________________________

[Guest guest]

You are doing all that you can, and then some. I am no doctor, but have

some experience with the diet and the flu. It is awful. Complete lack of

control for at least 3 weeks, maybe 4. Can only say that it is expected

on the diet, but not to that extent.

Can just advise that health comes before the diet.

You should cut back on water, calories and ratio until she recovers. Her

activity level is very low and she is not burning calories like normal.

Maybe try 3.5:1 at half calories for a bit.

We saw exactly the same with poor digestion. Food was going right

through her.

We had to give yogurt, (acidopholis should work as well) to get bacteria

back into the GI.

Weight loss with the flu is expected.

Ketomommie@... wrote:

>

> Hi everyone.

> Marissa is still in the hospital. She has been there a week now. Seizures

> started two weeks ago with a bought of the stomach flu.

> Last Saturday we were sent home in the morning, only to return by ambulance

> at 10pm. She started seizing at 9am and stopped at 10pm. Diastat did

> nothing.

> Sunday was slightly better in the morning. She was at least a little alert.

> Then gone again by nighttime. Monday morning was horrible but last night she

> was actually playing even though she couldn't hold her head up well. Then

> today has been beyond horrible. She has had only 6 tonic clonics all day.

> But she is not recovering at all. She does not respond to her name. She

> doesn't look at me. Her reflexes are gone. Ketones in blood are small. In

> urine they are small as well. I have been giving straight oil through her

> tube because she is not able to eat. It does nothing to raise ketones. She

> is not able to hold her head up or even wiggle her fingers. I am afraid she

> is dying. And no one has given me any reasurrances that she isn't.

> We are most likely starting Keppra in the morning. She has been drug free

> since June 2000. She had problems with her liver with drugs before where the

> docs were wondering about transplant. So I'm terrified. I don't want her to

> live in a drug stupor again. But I have to do something.

> Here's all I can think of to share. Maybe someone can help.

> She has had Tai brand coconut milk (calculated the new extra carbs in) and

> oil, heinz chicken, gerber apple sauce, and safflower oil through her tube.

> Tried 6:1, 5:1, 4:1 and straight oil

> She lost 4 pounds in two weeks during and after the flu

> I used to give Carnitor. Stopped a while ago. Had levels done and found she

> was slightly deficient. Didn't start it again until yesterday because her

> poop is so oily I don't think she is absorbing the fat. The dietician says

> it will take a week to know if the Carnitor is it.

> No meds other than diastat, which doesn't work anyway most of the time lately

> No lotions or soaps aside from the natural baby shampoo I have always used.

> Please please give ideas. I think Marissa is going to die one minute and

> then the next I think I can help her. I hope the latter is true, but i don't

> know.

> Thank you

> Jen

[Guest guest]

Bill,

This is great advice.... glad you mentioned the acidophilus. I hadn't thought of that but it should be helpful.

Patti

Re: help needed desperately

You are doing all that you can, and then some. I am no doctor, but havesome experience with the diet and the flu. It is awful. Complete lack ofcontrol for at least 3 weeks, maybe 4. Can only say that it is expectedon the diet, but not to that extent.Can just advise that health comes before the diet.You should cut back on water, calories and ratio until she recovers. Heractivity level is very low and she is not burning calories like normal.Maybe try 3.5:1 at half calories for a bit.We saw exactly the same with poor digestion. Food was going rightthrough her.We had to give yogurt, (acidopholis should work as well) to get bacteriaback into the GI.Weight loss with the flu is expected.

[Guest guest]

Another thing that just came to mind is (I doubt this is the case there

again just thinking out loud) that when Mike was in hospital and they gave

him steroid treatments for his breathing problems his blood sugars went

way up. The dietician says that is normal. Dont know if there

is anything they are doing that may cause blood sugars to rise. Just

a thought.

Jenn

Patti wrote:

Jen, One

more thought.... have they checked her blood sugars? When the body is fighting

an infection, the sugar will run high no matter what you're feeding her.....

and that could be the cause of the constant seizing. Trouble is, how to

get past the virus or infection. I have heard that this flu that's going

around is just terrible and goes on and on.... I just thought maybe

this could be a clue to whether or not her body is still doing battle with

the bug... cuz there is no way you would see high blood sugars given what

you are feeding her. I don't think I would stay with just the straight

oil if this is so.... she's going to have to have *some* carb and protein

or you could risk her sugar dropping too low, too. I would ask them to

check it. love,Patti

help needed desperately

Hi everyone.

Marissa is still in the hospital. She has been there a week

now. Seizures

"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 don't know how to help, but am so sorry to read this. It sounds like she

needs some type of consistent med to try and break the cycle. Adding or

trying a med won't necessarily put her into a drug stupor....we've added two

meds back w/ Jake and he's basically fine in that regard. Can't be worse

than what you're dealing with right now. You're right though, just be very

cautious re; the liver.

Have they used Ativan? Diastat/Valium has never worked for Jake ,how about

trying Ativan if you haven't? I would think the doctors would have done

this though. At least to snap her out of this funk.

Re: straight oil, I would honestly worry about ketosis later and try and get

her strength back for now. Oil won't do much for her nutritiously. Will

she tolerate normal feeds? Or even eggnog? I would try that and you can

always ease back onto the diet.

Where are you in the hospital? Hang in there Jen. Use us as much as you

need.

Barb Swoyer, Jake's mom

help needed desperately

> Hi everyone.

> Marissa is still in the hospital.

[Guest guest]

Jen,

When Marissa is not 'visibly' seizing, is there a possibility she is in

electrical status? Is she having EEGs? did not respond to diazepam

(diastat) with is last bout of status with the chickenpox. If her body is

still 'unwell', she may need something else to control the resultant

seizures. ended up having a midazolam infusion, worked quicker than

anyting I have ever seen with him before. She would be pretty well sedated,

which would give her little body and mind a well deserved rest.

Downside is, she would have to be weaned down from the initial dose, some

can get away with not gong home on an oral weaning equivalent

(benzodiazepine), some, like , can't.

His EEG on discharge was perfectly clear, when he had been having seizures

continuously, his brain was so aggravated, he had needed a long break in

seizure activity to have a chance to return to normal.

Thinking of you,

Hill, mother to 5, in NZ

help needed desperately

> Hi everyone.

> Marissa is still in the hospital. She has been there a week now.

Seizures

> started two weeks ago with a bought of the stomach flu.

> Last Saturday we were sent home in the morning, only to return by

ambulance

> at 10pm. She started seizing at 9am and stopped at 10pm. Diastat did

> nothing.

> Sunday was slightly better in the morning. She was at least a little

alert.

> Then gone again by nighttime. Monday morning was horrible but last night

she

> was actually playing even though she couldn't hold her head up well. Then

> today has been beyond horrible. She has had only 6 tonic clonics all day.

> But she is not recovering at all. She does not respond to her name. She

> doesn't look at me. Her reflexes are gone. Ketones in blood are small.

In

> urine they are small as well. I have been giving straight oil through her

> tube because she is not able to eat. It does nothing to raise ketones.

She

> is not able to hold her head up or even wiggle her fingers. I am afraid

she

> is dying. And no one has given me any reasurrances that she isn't.

> We are most likely starting Keppra in the morning. She has been drug free

> since June 2000. She had problems with her liver with drugs before where

the

> docs were wondering about transplant. So I'm terrified. I don't want her

to

> live in a drug stupor again. But I have to do something.

> Here's all I can think of to share. Maybe someone can help.

> She has had Tai brand coconut milk (calculated the new extra carbs in) and

> oil, heinz chicken, gerber apple sauce, and safflower oil through her

tube.

> Tried 6:1, 5:1, 4:1 and straight oil

> She lost 4 pounds in two weeks during and after the flu

> I used to give Carnitor. Stopped a while ago. Had levels done and found

she

> was slightly deficient. Didn't start it again until yesterday because her

> poop is so oily I don't think she is absorbing the fat. The dietician

says

> it will take a week to know if the Carnitor is it.

> No meds other than diastat, which doesn't work anyway most of the time

lately

> No lotions or soaps aside from the natural baby shampoo I have always

used.

> Please please give ideas. I think Marissa is going to die one minute and

> then the next I think I can help her. I hope the latter is true, but i

don't

> know.

> Thank you

> Jen

>

>

> " 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]

Jen,

Forgot to add, we made our own eggnog, and had that down the g tube

he had to have put in for the infusion. NB, the infusion for required

a pick line, (safer than IV nfusion wise, and they couldn't get an IV in

either, when seizing a lot, the veins seem to close somewhat)

dreadful lengths to go, but it sure was worth it to see him given a rest,

and the seizures dissipate.

Hill

help needed desperately

> Hi everyone.

> Marissa is still in the hospital. She has been there a week now.

Seizures

> started two weeks ago with a bought of the stomach flu.

> Last Saturday we were sent home in the morning, only to return by

ambulance

> at 10pm. She started seizing at 9am and stopped at 10pm. Diastat did

> nothing.

> Sunday was slightly better in the morning. She was at least a little

alert.

> Then gone again by nighttime. Monday morning was horrible but last night

she

> was actually playing even though she couldn't hold her head up well. Then

> today has been beyond horrible. She has had only 6 tonic clonics all day.

> But she is not recovering at all. She does not respond to her name. She

> doesn't look at me. Her reflexes are gone. Ketones in blood are small.

In

> urine they are small as well. I have been giving straight oil through her

> tube because she is not able to eat. It does nothing to raise ketones.

She

> is not able to hold her head up or even wiggle her fingers. I am afraid

she

> is dying. And no one has given me any reasurrances that she isn't.

> We are most likely starting Keppra in the morning. She has been drug free

> since June 2000. She had problems with her liver with drugs before where

the

> docs were wondering about transplant. So I'm terrified. I don't want her

to

> live in a drug stupor again. But I have to do something.

> Here's all I can think of to share. Maybe someone can help.

> She has had Tai brand coconut milk (calculated the new extra carbs in) and

> oil, heinz chicken, gerber apple sauce, and safflower oil through her

tube.

> Tried 6:1, 5:1, 4:1 and straight oil

> She lost 4 pounds in two weeks during and after the flu

> I used to give Carnitor. Stopped a while ago. Had levels done and found

she

> was slightly deficient. Didn't start it again until yesterday because her

> poop is so oily I don't think she is absorbing the fat. The dietician

says

> it will take a week to know if the Carnitor is it.

> No meds other than diastat, which doesn't work anyway most of the time

lately

> No lotions or soaps aside from the natural baby shampoo I have always

used.

> Please please give ideas. I think Marissa is going to die one minute and

> then the next I think I can help her. I hope the latter is true, but i

don't

> know.

> Thank you

> Jen

>

>

> " 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]

Jen,

I am so sorry about everything you are going through with Marissa. I just

wanted to reassure you that Keppra does not affect the liver. I will prayer

for your daughter.

Rona mommy to Wyatt

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Jen-I am also sorry to hear this. You have already gotten some good

advice. I am wondering if vitimin c can help. We use it alot and

have not been sick much this year(looking for wood to knock on here)

I read linus paulings book about it years ago. I think he was the one

who was given a fatal diagnoses and cured himself with vitiin c drips

and Marx brothers movies-made himself laugh as much as possible. I

was giving Jen really high doses last time she was sick with the flu

about 3000mg a day. She usually gets complications but didn't and

that has improved as she grows older too. There is a nasty stomach

virus going around though and kids have been sick for a long time with

it. I will be thiking about you. Keep us posted.

Joan

[Guest guest]

Patti,

I have had her blood sugar checked several times, but not the last few days.

I will do that today.

[Guest guest]

Started giving acidopholus yesterday.

Any idea how much I should give her each day?

Thank you

Jen

[Guest guest]

Oops, the acidopholus thing was for Bill. )

[Guest guest]

DeEtte,

I went back to using cream for now. Even though Marissa is allergic or

intolerant or whatever. I don't care at this point. I bought organic cream

hoping that would help. It has the same numbers as the kind we used to use.

I hadn't thought of making eggnog for some reason. I will do that for today.

I have been on the phone with the homeopath a ton since we've been there. He

is an MD, so he couldn't come to the hospital because he works out of town

and does not have privileges at our hospital. We have tried a few different

things. I eventually settled on Pulsatilla based on nothing but my own mommy

intuition. It turned out to be right on. Yesterday was wonderful. I cried

all day because I had been so sure Marissa was gone just the day before. She

went 32 hours with no seizures and started playing and holding her head up

and saying mama again. My hubby takes the night shift and called this

morning at 2 to say she had one seizure. Only one though, so far........

Thank you for the thoughts and prayers.

Love

Jen

[Guest guest]

Patti,

Rescue Remedy is a good idea. I have both liquid and cream. I will try

that today.

Direct your energy toward Michigan:o)

Marissa was much much much better yesterday. We shall she what today brings.

Love

Jen

[Guest guest]

Barb,

They never tried ativan. For some reason they seem to have a problem with

it. I suppose I could insist. It seems that most kids get better results

with that than diastat.

I stopped the straight oil. It wasn't doing anything anyway. Now I am doing

cream, coconut oil, acidopholus, chicken, applesauce. All through the tube.

She hasn't eaten by mouth in at least a week.

Trying eggnog today.

We are in one of the Grand Rapids hospitals this time- Spectrum health.

Thank you

Love

Jen

[Guest guest]

,

No EEGs have been done. We see a neuro who is in Detroit while we are in GR.

We would have gone to Detroit, but he is on vacation for two weeks. We have

not seen any neuro in GR as of yet, but the electrical status was something

that crossed by mind as well.

Never heard of Midazolam. I will check into it.

Thank you

Jen

[Guest guest]

Rona,

Thank you for the Keppra info. Hopefully we won't have to go there after

all, but we shall see.

Jen

[Guest guest]

Joan,

Thank you so much. Vitamin C has just been added to my list of things I am

going to try. Any particular brand better than another?

Jen

[Guest guest]

Jen,

I have never used it, just yoghurt, which I think that I gave 1 teaspoon

each meal for 2 or 3 days.

Bill

Ketomommie@... wrote:

>

> Started giving acidopholus yesterday.

> Any idea how much I should give her each day?

> Thank you

> Jen

>

>

> " 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]

This is such wonderful news!! Way to go Marissa!!! I am so glad she had

such a great day. What is the stuff that you gave her and what does

it do and where can I get it? this is a supplement I assume?

Jenn

Ketomommie@... wrote:

I eventually settled on Pulsatilla based

on nothing but my own mommy

intuition. It turned out to be right on. Yesterday

was wonderful. I cried

all day because I had been so sure Marissa was gone just the day

before. She

went 32 hours with no seizures and started playing and holding

her head up

and saying mama again. My hubby takes the night shift and

called this

morning at 2 to say she had one seizure. Only one though,

so far........

[Guest guest]

Any particular brand better than another?

There is only one brand I found in the little packets from the health

food store to make a drink with no carbs and with MSM. " Emer " gen-c "

www.alacercorp.com-they will send you free samples if you contact

them. You can also buy a powder in a jar. I used to use one that was

buffered & you could use high doses without stomach upset. I haven't

used that for years though. I also use a cap of friendly bacteria I

get at the Health food store that I open & add it to food.

Joan