RE: Help! Urgent again!//Lois

[Guest guest]

Lois,

It is so so sweet to hear how your daughter's school

try all the means to keep her safe and independent,

and the " helmet " day is a great idea. I don't know

how much my daughter's school can do--they don't even

have a school nurse, but I will definitely present

those ideas to her teacher.

My daughter doesn't like to be hold up all the time,

or holding her hand when she walks. The terrible

thing with drops is we couldn't afford to miss one.

My husband skipped half day of work to stay close. It

is only two days, I am having serious back pain and

headache already. I am so happy that your daughter's

drops are so will managed and her preschool is so

considerate. We will learn to manage those episodes

with your inspiration.

By the way, where you buy the helmet with face bar?

Do you need special order for that?

Thanks, and wish the best for Claire,

> " 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.

>

>

>

>

>

>

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