RE: Help! Urgent again! /

[Guest guest]

,

Thanks for sharing the helmet thing. We plan to get

one professional one for Alice even it won't be

covered by insurance--I will check with her neuro

about this. I spent all day on the floor with Alice,

trying to keep her down. I feel she is getting a

little weak from not getting any exercises, and how

she hated being hold hands when she walks...

Her fever or something else changed her metabolic

rate. Her Dilantin level dropped from 16 to 7, which

might be the reason when things went wrong. We

started to boost the Dilantin level up by giving her 2

extra pills today and tomorrow, and she will get 5

Dilantins after that (she is having 4 now.). That

will be the second time on the diet we got to increase

the drug dosage. I wonder when is our time to do the

wean. Not in the near future.

At this point, my faith of the diet is falling apart.

If Dilantin is the magic pill for Alice, why should we

stay on the diet? We have been on the diet for around

one year now... I really hope Dilantin works, and

about the diet, we will discuss with her neuro to see

if we should continue to do it.

Best wishes for Luke, let's hang in here together.

> > 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.

> >

> >

> >

> >

> >

> >

> > __________________________________

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> >

> > " 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

>

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