Re: Flushed Cheeks and High Ammonia

[Guest guest]

Hyperammonemia can also be caused by an excess of protein. Symptoms include

extreme lethargy that can result in coma. It is definitely worth getting

checked along w/other labs.

Tracey

[Guest guest]

I think high ammonia is associated with Depakote but can't remember exactly

how...

Also, flushed cheeks, are you sure he's drinking enough? He could be

dehydrated? Diapers wet? Are you sure he's hydrated enough?

Hang in, it will get better. We started at about the same age. It was a tough

few months but things settled down into a routine after about 3 months. We did

end up back in the hospital w/ dehydration, acidosis a few times. Did they do a

bicarb level to see if he's too acidotic?

Barb Swoyer, Jake's mom

Flushed Cheeks and High Ammonia

So far this diet has just been horrible for us all. I really hope

this gets better. finally started eating and drinking, thank

the Lord, but he is still very wobbly. We are dropping another

depakote so hopefully that will help with the wobbliness. We finally

have him hydrated and his bowel movements are more regular. We have

little victories, but his seizures are still bad at times worse than

pre diet. Then we also have some times that are better. He had

several hours earlier today with very few. Pre diet he averaged one

myoclonic every minute or two. All this will be worth it if this

gets better. I am ready for that to happen. So far it is taking

alot to get him adjusted to the diet.

Now he has flushed cheeks. We read in the book where it could be

overly ketotic, but he still has times in the morning and afternoon

where he measures small to moderate ketones. He doesn't hit large

ketones until well into the evening. This makes me doubt that the

flushed cheeks are ketone related. Anyone have ideas about this?

Talked with his team today and they said his ammonia was high when he

left the hospital and they are taking more blood tomorrow to check

further. Has anyone had their child measure high ammonia.

Any thoughts?

Tina (very tired mom to - 17 months generalized myoclonics -

newbie keto kid)

" 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]

Yes, it is often terrible at the beginning, but it does get better and

easier. There are large changes to adapt to, and it takes time.

Medications seem to act differently with the diet and can be toxic. If

you are seeing some times with fewer seizures then there is definitely

hope for more improvements.

Yes, flushed cheeks can be a sign of high ketones. If it is accompanied

by strong ketone breath and panting, perhaps also vomiting then ketones

are likely very high. Ketones are usually lowest in the morning and rise

throughout the day. The urine measurement is indirect of course. What is

happening in the blood and in the brain are inferred from the urine reading.

I don't know about the ammonia. Our daughter had some readings that were

slightly above or below " normal " . One was amylase. And one of course was

cholesterol. Often some of the tests are thrown off by the high ketones.

Bill

Tina Buckner wrote:

> So far this diet has just been horrible for us all. I really hope

> this gets better. finally started eating and drinking, thank

> the Lord, but he is still very wobbly. We are dropping another

> depakote so hopefully that will help with the wobbliness. We finally

> have him hydrated and his bowel movements are more regular. We have

> little victories, but his seizures are still bad at times worse than

> pre diet. Then we also have some times that are better. He had

> several hours earlier today with very few. Pre diet he averaged one

> myoclonic every minute or two. All this will be worth it if this

> gets better. I am ready for that to happen. So far it is taking

> alot to get him adjusted to the diet.

>

> Now he has flushed cheeks. We read in the book where it could be

> overly ketotic, but he still has times in the morning and afternoon

> where he measures small to moderate ketones. He doesn't hit large

> ketones until well into the evening. This makes me doubt that the

> flushed cheeks are ketone related. Anyone have ideas about this?

>

> Talked with his team today and they said his ammonia was high when he

> left the hospital and they are taking more blood tomorrow to check

> further. Has anyone had their child measure high ammonia.

>

> Any thoughts?

> Tina (very tired mom to - 17 months generalized myoclonics -

> newbie keto kid)

>

>

>

>

> " 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 what all blood work they are doing tomorrow, but they

have an order in for tomorrow and then one for the 20th. I will ask

tomorrow to see if they are checking the bicarb level. What is that

by the way?

He is having quite a few wet diapers and we haven't seen any of the

uric acid crystals he had when he was refusing liquids. He is

allowed 32 ounces of liquid a day, but he only gets about 20-25

ounces a day though since he is only allowed to have 4 ounces every 2-

3 hours. He drinks every 4 ounces every 2 hours from 9AM to 9PM.

Thanks for the input. I feel like a detective. Maybe tomorrow we'll

find more clues.

Tina Buckner

> I think high ammonia is associated with Depakote but can't remember

exactly how...

> Also, flushed cheeks, are you sure he's drinking enough? He could

be dehydrated? Diapers wet? Are you sure he's hydrated enough?

> Hang in, it will get better. We started at about the same age. It

was a tough few months but things settled down into a routine after

about 3 months. We did end up back in the hospital w/ dehydration,

acidosis a few times. Did they do a bicarb level to see if he's too

acidotic?

> Barb Swoyer, Jake's mom

> Flushed Cheeks and High Ammonia

>

>

> So far this diet has just been horrible for us all. I really

hope

> this gets better. finally started eating and drinking,

thank

> the Lord, but he is still very wobbly. We are dropping another

> depakote so hopefully that will help with the wobbliness. We

finally

> have him hydrated and his bowel movements are more regular. We

have

> little victories, but his seizures are still bad at times worse

than

> pre diet. Then we also have some times that are better. He had

> several hours earlier today with very few. Pre diet he averaged

one

> myoclonic every minute or two. All this will be worth it if this

> gets better. I am ready for that to happen. So far it is taking

> alot to get him adjusted to the diet.

>

> Now he has flushed cheeks. We read in the book where it could be

> overly ketotic, but he still has times in the morning and

afternoon

> where he measures small to moderate ketones. He doesn't hit

large

> ketones until well into the evening. This makes me doubt that

the

> flushed cheeks are ketone related. Anyone have ideas about

this?

>

> Talked with his team today and they said his ammonia was high

when he

> left the hospital and they are taking more blood tomorrow to

check

> further. Has anyone had their child measure high ammonia.

>

> Any thoughts?

> Tina (very tired mom to - 17 months generalized myoclonics -

> newbie keto kid)

>

>

>

> " 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]

Hi Tina. The high ammonia indicates depakote to me. The diet definitely

makes a child more drug sensitive. And when you wean, you may see side

effects that you only anticipated with an increase, not a decrease.

Especially with his physical state, I think he's depakote toxic. My

daughter went through the exact same thing. The bicarb level is the

kidneys' attempt to compensate for ketosis. If he has been to ketotic

lately, his body may be trying to correct it and you may see a ketone drop

because of that. You ARE officially a detective. Welcome to the club.

Best wishes,

Ann Shepard

Flushed Cheeks and High Ammonia

> >

> >

> > So far this diet has just been horrible for us all. I really

> hope

> > this gets better. finally started eating and drinking,

> thank

> > the Lord, but he is still very wobbly. We are dropping another

> > depakote so hopefully that will help with the wobbliness. We

> finally

> > have him hydrated and his bowel movements are more regular. We

> have

> > little victories, but his seizures are still bad at times worse

> than

> > pre diet. Then we also have some times that are better. He had

> > several hours earlier today with very few. Pre diet he averaged

> one

> > myoclonic every minute or two. All this will be worth it if this

> > gets better. I am ready for that to happen. So far it is taking

> > alot to get him adjusted to the diet.

> >

> > Now he has flushed cheeks. We read in the book where it could be

> > overly ketotic, but he still has times in the morning and

> afternoon

> > where he measures small to moderate ketones. He doesn't hit

> large

> > ketones until well into the evening. This makes me doubt that

> the

> > flushed cheeks are ketone related. Anyone have ideas about

> this?

> >

> > Talked with his team today and they said his ammonia was high

> when he

> > left the hospital and they are taking more blood tomorrow to

> check

> > further. Has anyone had their child measure high ammonia.

> >

> > Any thoughts?

> > Tina (very tired mom to - 17 months generalized myoclonics -

> > newbie keto kid)

> >

> >

> >

> > " 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]

High ammonia is a def risk with depakote, esp in conjunction with being in

ketosis. Dr De Vivo (metabolic- neuro) has written a lot of papers on this

issue. This is one of the reasons he is so against the dep/diet combination,

but if a child is on them both, he believes that L-carnitine should be

supplemented. Apparently apart from preventing low carn levels, it can help

stop this hyperamonemia (sp?) developing?

Very high ammonia levels (basically liver gets overloaded, unable to flush

out or something like that?) can in extreme cases cause an encephalopathy,

which of course will bring with it the risk of increased seizures.

Sounds like needs a very close eye kept on him lab wise, they are

wise to be rechecking his levels,

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

> I think high ammonia is associated with Depakote but can't remember

exactly how...

> Also, flushed cheeks, are you sure he's drinking enough? He could be

dehydrated? Diapers wet? Are you sure he's hydrated enough?

> Hang in, it will get better. We started at about the same age. It was

a tough few months but things settled down into a routine after about 3

months. We did end up back in the hospital w/ dehydration, acidosis a few

times. Did they do a bicarb level to see if he's too acidotic?

> Barb Swoyer, Jake's mom

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

> From: Tina Buckner

> So far this diet has just been horrible for us all. I really hope

> this gets better. finally started eating and drinking, thank

> the Lord, but he is still very wobbly. We are dropping another

> depakote so hopefully that will help with the wobbliness. We finally

> have him hydrated and his bowel movements are more regular. We have

> little victories, but his seizures are still bad at times worse than

> pre diet. Then we also have some times that are better. He had

> several hours earlier today with very few. Pre diet he averaged one

> myoclonic every minute or two. All this will be worth it if this

> gets better. I am ready for that to happen. So far it is taking

> alot to get him adjusted to the diet.

>

> Now he has flushed cheeks. We read in the book where it could be

> overly ketotic, but he still has times in the morning and afternoon

> where he measures small to moderate ketones. He doesn't hit large

> ketones until well into the evening. This makes me doubt that the

> flushed cheeks are ketone related. Anyone have ideas about this?

>

> Talked with his team today and they said his ammonia was high when he

> left the hospital and they are taking more blood tomorrow to check

> further. Has anyone had their child measure high ammonia.

>

> Any thoughts?

> Tina (very tired mom to - 17 months generalized myoclonics -

> newbie keto kid)

[Guest guest]

Tina,

I vote for Depakote as the problem, too. I have education in

biochemistry and I became familiar with the finer points of Dep.

metabloism because it was the drug from hell for us, yet, it was the

only broad spectrum drug that was indicated for the seizures types we

were fighting. Too much ammonia is one (but not the only) of the

reasons Depakote causes liver problems. Stay on top of that level,

O.K.? I would also ask for arterial blood gases, too. Not a fun

test, but would be good to know, I think. Ammonia can goof up acid-

base balance, too. Acid-base balance is already goofed up by virtue

of being on the keto diet, so you don't want any other " monkey

wrenches " thrown into the picture. Have they checked his oxygen sat.

with the finger clip? That could give a clue, but a full set of

gases would be needed to be sure things are o.k.

When the body's metabolism shifts to using fatty acids as an energy

source, it produces an acid that is very closely related in structure

to valproic acid (depakote). It is not known for sure if this

acid " works " like valproic acid but it is logical to think that it

could. In fact, there is speculation that this is one of the reasons

the diet works to control seizures.... a built in AED effect without

taking the actual drug.

There is also a potential third way that depakote and the diet

together can cause toxicity--very difficult to explain--but it is one

more possibility. Based on all this, we hoped for a keto team that

would get us off depakote quickly. God is good... we found one. We

stopped (not weaned) 1000mg. per day of depakote as we initiated the

diet. We lived in fear and trepidation for the first few days but it

was the best thing we could have done. Not only did we not have

seizures, we saw incredible improvement in our daughter's cognitive

ability, affect and personality immediately. In essence, we

got " her " back.

Hydration is another issue. Hydration has a direct effect on the

urine ketone readings, which are not completely accurate in the best

of circumstances. Are you checking urine specific gravity (again,

not always too accurate, but it can give some clues) Is he panting

or breathing shallow? Does his breath have a ketotic odor (sweet,

fruity)? We stopped limiting overall fluid intake early on... we

only limited how much she could have at one time. Optimum ketosis is

different for each child. We needed less than most.

Did they forget to give you your official detective badge when you

left the hospital?? Yep, all those games of " clue " you played as a

kid will serve you well, now... you turn over one card at a time and

see what you find.. LOL

Hang in there. It's hard right now but you want to give the diet the

best chance you can. Hopefully, your keto team can guide you through

this wave... then smooth sailing!!

Cammie

> So far this diet has just been horrible for us all. I really hope

> this gets better. finally started eating and drinking, thank

> the Lord, but he is still very wobbly. We are dropping another

> depakote so hopefully that will help with the wobbliness. We

finally

> have him hydrated and his bowel movements are more regular. We

have

> little victories, but his seizures are still bad at times worse

than

> pre diet. Then we also have some times that are better. He had

> several hours earlier today with very few. Pre diet he averaged

one

> myoclonic every minute or two. All this will be worth it if this

> gets better. I am ready for that to happen. So far it is taking

> alot to get him adjusted to the diet.

>

> Now he has flushed cheeks. We read in the book where it could be

> overly ketotic, but he still has times in the morning and afternoon

> where he measures small to moderate ketones. He doesn't hit large

> ketones until well into the evening. This makes me doubt that the

> flushed cheeks are ketone related. Anyone have ideas about this?

>

> Talked with his team today and they said his ammonia was high when

he

> left the hospital and they are taking more blood tomorrow to check

> further. Has anyone had their child measure high ammonia.

>

> Any thoughts?

> Tina (very tired mom to - 17 months generalized myoclonics -

> newbie keto kid)