Help! Urgent again!

[Guest guest]

,

Drop attacks are horrible. Does Alice wear a helmet? Even a bicycle helmet

from your local sporting goods store would save her from any knots on her head

or concusions. It wouldn't protect her face, but it is better than nothing. We

used one at first, till we recieved Luke's professional helmet. They may look

awful, but they have saved Luke from many violent falls. On his really bad days

I spend hours playing with him on the floor ...legos, tractors, books, etc....

I know how you feel....it sucks! (sorry, I usually don't speak that way) I wish

I had a magic pill for all of this.....just please take a small comfort that you

are not alone in this.

I'm still trying to tweak our diet....sorry, I am not any help in that

department. Hang in there!

Quan Tang emilyqtang@...> wrote:

Can't believe I am here again ask for help. For those

moms read our first help, Alice is eating and drinking

agin, still has some temperature in the morning time,

but not too bad.

She had a drop attack Friday, and we took her in to

see her neuro. The blood test came back normal. She

had two drops Saturaday, got a bruise on her head.

And things went south today. She had over ten

drops!!! The first one happened in the morning, she

fell ahead in the carpet, nose bleeding, and her teeth

cut in her lips. My husband and I literally held her

all day long-- and thank goodness for doing so, we

prevented her falling down and hurting herself, even

end up in ER. We are exhausted, and wonder how long we

can prevent her from walking to keep her safe.

She had two outburst on the diet before this time.

Both were caused by not enough ketosis. This time,

her ketone is stronger than usual, over 160 all the

time, very dark. We tried to lower it down by giving

her 15cc orange juice this afternoon--it did brought

down her ketone level to 120, but seems if not

increased, no relieve from those drop episodes. We

plan try to catch her neuro again first thing

tomorrow.

I wish I have an idea what went wrong... And if we

couldn't get rid of those drop attacks, how should we

manage them? Alice is two and a half, not talking

yet. She doesn't understand why we don't let her

walk, and is quite fed up with us constantly stay less

than 4 " away from her.

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[Guest guest]

Claire was on Depakote and Lamictal and started to have 50 - 100 drop

attacks a day. She had reverted back to crawling because she was always

postictal. The school district bought a helmet and we bought a helmet.

Both covered her face and her head. The preschool class had a " Bike "

day and everyone wore their helmet the day Claire received and wore hers

for the first time. The kids rode bikes or other riding toys down the

hall with their own helmets on.

The school also ordered a walker with a seat in it. The bar on the

walker came up just below her armpits so that she couldn't flip over.

The seat attached to the walker and had Velcro to adjust for size. She

used the walker around the classroom and in the hallway as a means of

independence. She also disliked having to hold her hand all the time.

We brought the walker home with us everyday and over the summer.

Although we didn't use it in the house, we did take it to shopping malls

to let her walk around unassisted. We also took it friends houses

especially when we were outside.

When the Depakote started to affect her liver, we tried the diet, out of

desperation. It gave Claire her life back. She still has seizures but

only a few small myclonic twitches sometimes at night and a generalized

seizure lasting 30 seconds to 1 minute every four to eight weeks. It is

still to many but it is better than before. Claire is seven years old,

26 lbs and 36 " tall with both cognitive and physical issues. She has no

diagnosis or syndrome that explains her conditions.

I am taking her back to see her geneticist one more time to see if he

can diagnose her. If not, I will look for some help outside of

Michigan.

Regards,

Lois

Re: Help! Urgent again!

,

Drop attacks are horrible. Does Alice wear a helmet? Even a bicycle

helmet from your local sporting goods store would save her from any

knots on her head or concusions. It wouldn't protect her face, but it

is better than nothing. We used one at first, till we recieved Luke's

professional helmet. They may look awful, but they have saved Luke from

many violent falls. On his really bad days I spend hours playing with

him on the floor ...legos, tractors, books, etc....

I know how you feel....it sucks! (sorry, I usually don't speak that way)

I wish I had a magic pill for all of this.....just please take a small

comfort that you are not alone in this.

I'm still trying to tweak our diet....sorry, I am not any help in that

department. Hang in there!

Quan Tang emilyqtang@...> wrote:

Can't believe I am here again ask for help. For those

moms read our first help, Alice is eating and drinking

agin, still has some temperature in the morning time,

but not too bad.

She had a drop attack Friday, and we took her in to

see her neuro. The blood test came back normal. She

had two drops Saturaday, got a bruise on her head.

And things went south today. She had over ten

drops!!! The first one happened in the morning, she

fell ahead in the carpet, nose bleeding, and her teeth

cut in her lips. My husband and I literally held her

all day long-- and thank goodness for doing so, we

prevented her falling down and hurting herself, even

end up in ER. We are exhausted, and wonder how long we

can prevent her from walking to keep her safe.

She had two outburst on the diet before this time.

Both were caused by not enough ketosis. This time,

her ketone is stronger than usual, over 160 all the

time, very dark. We tried to lower it down by giving

her 15cc orange juice this afternoon--it did brought

down her ketone level to 120, but seems if not

increased, no relieve from those drop episodes. We

plan try to catch her neuro again first thing

tomorrow.

I wish I have an idea what went wrong... And if we

couldn't get rid of those drop attacks, how should we

manage them? Alice is two and a half, not talking

yet. She doesn't understand why we don't let her

walk, and is quite fed up with us constantly stay less

than 4 " away from her.

__________________________________

Do you Yahoo!?

New and Improved Yahoo! Mail - 100MB free storage!

http://promotions.yahoo.com/new_mail

" 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]

Right now Jake is starting to show signs of liver

problems. His ammonia levels are slowly creeping

upwards. His doctor has decreased the Depekote twice

in the last month. I think it has slowed down his

tonic clonic activity. I'm still seeing quite a few

jerk movements while he sleeps. I'm very happy that

he finally went 10 days without a t/c seizure. His

seizures are lasting anywhere from 30 seconds to 7

minutes.

I've never seen the walker that you're talking about.

That is great that she has that kind of independence.

Jake is going to turn 7 next month and I know all too

well of the independence that he seeks!! Good luck!!

~Jake's mom

--- " Valente. Lois " Lois.Valente@...>

wrote:

> Claire was on Depakote and Lamictal and started to

> have 50 - 100 drop

> attacks a day. She had reverted back to crawling

> because she was always

> postictal. The school district bought a helmet and

> we bought a helmet.

> Both covered her face and her head. The preschool

> class had a " Bike "

> day and everyone wore their helmet the day Claire

> received and wore hers

> for the first time. The kids rode bikes or other

> riding toys down the

> hall with their own helmets on.

>

> The school also ordered a walker with a seat in it.

> The bar on the

> walker came up just below her armpits so that she

> couldn't flip over.

> The seat attached to the walker and had Velcro to

> adjust for size. She

> used the walker around the classroom and in the

> hallway as a means of

> independence. She also disliked having to hold her

> hand all the time.

> We brought the walker home with us everyday and over

> the summer.

> Although we didn't use it in the house, we did take

> it to shopping malls

> to let her walk around unassisted. We also took it

> friends houses

> especially when we were outside.

>

> When the Depakote started to affect her liver, we

> tried the diet, out of

> desperation. It gave Claire her life back. She

> still has seizures but

> only a few small myclonic twitches sometimes at

> night and a generalized

> seizure lasting 30 seconds to 1 minute every four to

> eight weeks. It is

> still to many but it is better than before. Claire

> is seven years old,

> 26 lbs and 36 " tall with both cognitive and physical

> issues. She has no

> diagnosis or syndrome that explains her conditions.

>

> I am taking her back to see her geneticist one more

> time to see if he

> can diagnose her. If not, I will look for some help

> outside of

> Michigan.

>

> Regards,

>

> Lois

> Re: Help! Urgent again!

>

> ,

> Drop attacks are horrible. Does Alice wear a

> helmet? Even a bicycle

> helmet from your local sporting goods store would

> save her from any

> knots on her head or concusions. It wouldn't

> protect her face, but it

> is better than nothing. We used one at first, till

> we recieved Luke's

> professional helmet. They may look awful, but they

> have saved Luke from

> many violent falls. On his really bad days I spend

> hours playing with

> him on the floor ...legos, tractors, books, etc....

> I know how you feel....it sucks! (sorry, I usually

> don't speak that way)

> I wish I had a magic pill for all of this.....just

> please take a small

> comfort that you are not alone in this.

>

> I'm still trying to tweak our diet....sorry, I am

> not any help in that

> department. Hang in there!

>

>

> Quan Tang emilyqtang@...> wrote:

> Can't believe I am here again ask for help. For

> those

> moms read our first help, Alice is eating and

> drinking

> agin, still has some temperature in the morning

> time,

> but not too bad.

>

> She had a drop attack Friday, and we took her in to

> see her neuro. The blood test came back normal.

> She

> had two drops Saturaday, got a bruise on her head.

> And things went south today. She had over ten

> drops!!! The first one happened in the morning, she

> fell ahead in the carpet, nose bleeding, and her

> teeth

> cut in her lips. My husband and I literally held

> her

> all day long-- and thank goodness for doing so, we

> prevented her falling down and hurting herself, even

> end up in ER. We are exhausted, and wonder how long

> we

> can prevent her from walking to keep her safe.

>

> She had two outburst on the diet before this time.

> Both were caused by not enough ketosis. This time,

> her ketone is stronger than usual, over 160 all the

> time, very dark. We tried to lower it down by

> giving

> her 15cc orange juice this afternoon--it did brought

> down her ketone level to 120, but seems if not

> increased, no relieve from those drop episodes. We

> plan try to catch her neuro again first thing

> tomorrow.

>

> I wish I have an idea what went wrong... And if we

> couldn't get rid of those drop attacks, how should

> we

> manage them? Alice is two and a half, not talking

> yet. She doesn't understand why we don't let her

> walk, and is quite fed up with us constantly stay

> less

> than 4 " away from her.

>

>

>

>

>

>

> __________________________________

> Do you Yahoo!?

> New and Improved Yahoo! Mail - 100MB free storage!

> http://promotions.yahoo.com/new_mail

>

>

> " 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]

Dear Lois

So, the diet has been a success for Claire, which is the good news.

I do not think it uncommon not to have a syndrome or reason for the seizures and

delays. My daughter does not. They cannot point to anything as the cause. At

one point we were trying to see if Agent Orange was the culprit, as her

birthmother worked in an area still controlled by using AO. It would have meant

more tests... and there is not antidote, anyway, so I did not pursue it.

We are in Michigan, too. Are you getting good support services? I " hear " the

frustration, and wonder. You should be!

If I can be of any help, please let me know. , 's mum

" Valente. Lois " Lois.Valente@...> wrote:

Claire was on Depakote and Lamictal and started to have 50 - 100 drop

attacks a day. She had reverted back to crawling because she was always

postictal. The school district bought a helmet and we bought a helmet.

Both covered her face and her head. The preschool class had a " Bike "

day and everyone wore their helmet the day Claire received and wore hers

for the first time. The kids rode bikes or other riding toys down the

hall with their own helmets on.

The school also ordered a walker with a seat in it. The bar on the

walker came up just below her armpits so that she couldn't flip over.

The seat attached to the walker and had Velcro to adjust for size. She

used the walker around the classroom and in the hallway as a means of

independence. She also disliked having to hold her hand all the time.

We brought the walker home with us everyday and over the summer.

Although we didn't use it in the house, we did take it to shopping malls

to let her walk around unassisted. We also took it friends houses

especially when we were outside.

When the Depakote started to affect her liver, we tried the diet, out of

desperation. It gave Claire her life back. She still has seizures but

only a few small myclonic twitches sometimes at night and a generalized

seizure lasting 30 seconds to 1 minute every four to eight weeks. It is

still to many but it is better than before. Claire is seven years old,

26 lbs and 36 " tall with both cognitive and physical issues. She has no

diagnosis or syndrome that explains her conditions.

I am taking her back to see her geneticist one more time to see if he

can diagnose her. If not, I will look for some help outside of

Michigan.

Regards,

Lois

Re: Help! Urgent again!

,

Drop attacks are horrible. Does Alice wear a helmet? Even a bicycle

helmet from your local sporting goods store would save her from any

knots on her head or concusions. It wouldn't protect her face, but it

is better than nothing. We used one at first, till we recieved Luke's

professional helmet. They may look awful, but they have saved Luke from

many violent falls. On his really bad days I spend hours playing with

him on the floor ...legos, tractors, books, etc....

I know how you feel....it sucks! (sorry, I usually don't speak that way)

I wish I had a magic pill for all of this.....just please take a small

comfort that you are not alone in this.

I'm still trying to tweak our diet....sorry, I am not any help in that

department. Hang in there!

Quan Tang emilyqtang@...> wrote:

Can't believe I am here again ask for help. For those

moms read our first help, Alice is eating and drinking

agin, still has some temperature in the morning time,

but not too bad.

She had a drop attack Friday, and we took her in to

see her neuro. The blood test came back normal. She

had two drops Saturaday, got a bruise on her head.

And things went south today. She had over ten

drops!!! The first one happened in the morning, she

fell ahead in the carpet, nose bleeding, and her teeth

cut in her lips. My husband and I literally held her

all day long-- and thank goodness for doing so, we

prevented her falling down and hurting herself, even

end up in ER. We are exhausted, and wonder how long we

can prevent her from walking to keep her safe.

She had two outburst on the diet before this time.

Both were caused by not enough ketosis. This time,

her ketone is stronger than usual, over 160 all the

time, very dark. We tried to lower it down by giving

her 15cc orange juice this afternoon--it did brought

down her ketone level to 120, but seems if not

increased, no relieve from those drop episodes. We

plan try to catch her neuro again first thing

tomorrow.

I wish I have an idea what went wrong... And if we

couldn't get rid of those drop attacks, how should we

manage them? Alice is two and a half, not talking

yet. She doesn't understand why we don't let her

walk, and is quite fed up with us constantly stay less

than 4 " away from her.

__________________________________

Do you Yahoo!?

New and Improved Yahoo! Mail - 100MB free storage!

http://promotions.yahoo.com/new_mail

" 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