...

[Guest guest]

I know that was really scary. So glad to hear she

bounced back. You definately should get another EEG as

soon as possible. That's what we did for when

he started having seizures after the infantile spasms.

Let us know what you find out from it. Good luck.

--- wrote:

> Don't I know it... This happened LAST Sunday. My

> hubby has been working

> part-time, in a restaurant. The place is being run

> VERY poorly. My hubby is

> big on organization, so he's taken it upon himself

> to try to straighten out

> the staff. Good luck !!! Anyway, he took my second

> oldest son, & wasn't

> supposed to be gone more then a few hours. 7 hours

> later, I was sitting in

> my bedroom, thinking bad thoughts about him ( what

> can I say, I'm only

> human )... I mean, he knew that I thought the baby

> didn't look right, but he

> said he had to go & take care of a few things (

> famous last words ) ...I

> heard my older daughter screaming. Since she has

> recently taken to screaming

> for every little thing, I asked her what was wrong.

> She yelled that the baby

> was seizing !!! I ran into my kitchen, & found

> Crystal on the floor. It was

> my 1st time witnessing her having a grand mal. I

> freaked out & called 9/11.

> I know that it lasted at least 3 minutes that I

> witnessed. Since she was in

> the middle of it, when we walked in on her, I have

> NO idea how long the

> actual seizure lasted. I'm very relieved to say,

> that her breathing appeared

> to be unaffected. That was what I was watching her

> for, knowing your

> problems with Cody...By the time the ambulance

> arrived, she was post -

> ictal. We transported her to the hospital, just to

> be safe...

> By the time her dad joined us, she was back to her

> normal ornery self.

> Trying to keep an active 4 year old on one of those

> hospital gurneys, is

> always a challenge. They didn't even run any blood

> tests, since her major

> med is Keppra, & there is NO way to test levels on

> that...( at least no way

> that is widely known )...Anyway, that's where we are

> right now. Her neuro

> now has her on 2000 mgs of Keppra a day....She has

> an appointment with him

> this Friday. I'm going to tell him that I want

> another EEG done on her. I

> want him to see where the seizure activity is

> originating from ( if he

> can ), & make sure that Keppra is the best drug of

> choice for her...

>

> Wish us luck !!!

>

> Give that adorable little Cody great big {{{ HUGS &

> KISSES }}} for us....

>

> Lotsa luv to you all...

>

> & her little maniac, Crystal Aquielle....

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

I know that was really scary. So glad to hear she

bounced back. You definately should get another EEG as

soon as possible. That's what we did for when

he started having seizures after the infantile spasms.

Let us know what you find out from it. Good luck.

--- wrote:

> Don't I know it... This happened LAST Sunday. My

> hubby has been working

> part-time, in a restaurant. The place is being run

> VERY poorly. My hubby is

> big on organization, so he's taken it upon himself

> to try to straighten out

> the staff. Good luck !!! Anyway, he took my second

> oldest son, & wasn't

> supposed to be gone more then a few hours. 7 hours

> later, I was sitting in

> my bedroom, thinking bad thoughts about him ( what

> can I say, I'm only

> human )... I mean, he knew that I thought the baby

> didn't look right, but he

> said he had to go & take care of a few things (

> famous last words ) ...I

> heard my older daughter screaming. Since she has

> recently taken to screaming

> for every little thing, I asked her what was wrong.

> She yelled that the baby

> was seizing !!! I ran into my kitchen, & found

> Crystal on the floor. It was

> my 1st time witnessing her having a grand mal. I

> freaked out & called 9/11.

> I know that it lasted at least 3 minutes that I

> witnessed. Since she was in

> the middle of it, when we walked in on her, I have

> NO idea how long the

> actual seizure lasted. I'm very relieved to say,

> that her breathing appeared

> to be unaffected. That was what I was watching her

> for, knowing your

> problems with Cody...By the time the ambulance

> arrived, she was post -

> ictal. We transported her to the hospital, just to

> be safe...

> By the time her dad joined us, she was back to her

> normal ornery self.

> Trying to keep an active 4 year old on one of those

> hospital gurneys, is

> always a challenge. They didn't even run any blood

> tests, since her major

> med is Keppra, & there is NO way to test levels on

> that...( at least no way

> that is widely known )...Anyway, that's where we are

> right now. Her neuro

> now has her on 2000 mgs of Keppra a day....She has

> an appointment with him

> this Friday. I'm going to tell him that I want

> another EEG done on her. I

> want him to see where the seizure activity is

> originating from ( if he

> can ), & make sure that Keppra is the best drug of

> choice for her...

>

> Wish us luck !!!

>

> Give that adorable little Cody great big {{{ HUGS &

> KISSES }}} for us....

>

> Lotsa luv to you all...

>

> & her little maniac, Crystal Aquielle....

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

We've run across some doctors whose attitude is, " the

kid is disabled so it's just a waste of money. " I make

sure to tell them off! Thankfully, we've only had one

like that this year!

--- wrote:

> - thanks, dear... I just hope taht the neuro

> agrees to it... He doesn't

> seem too keen to do any more testing ( other then

> occasional blood tests ),

> or to try any other drugs. I think he's a great

> advocate for Keppra. I'm

> really not too impressed by it !!!

>

> Luv & light...

>

> Chris

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

We've run across some doctors whose attitude is, " the

kid is disabled so it's just a waste of money. " I make

sure to tell them off! Thankfully, we've only had one

like that this year!

--- wrote:

> - thanks, dear... I just hope taht the neuro

> agrees to it... He doesn't

> seem too keen to do any more testing ( other then

> occasional blood tests ),

> or to try any other drugs. I think he's a great

> advocate for Keppra. I'm

> really not too impressed by it !!!

>

> Luv & light...

>

> Chris

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Luved talking to you all too lady, I hope her appatite picks up. Talk to them

about Dialantin, you can get a trough on part of her meds. if you can. The

seizures she's having " now " sounds like some of what Cody was experiencing. I

really belive it might be the meds for her. <hugs to Crystal> Take care &

let me know after you talk to the Dr.'s. ;-)

Your friend,

K.

<A

HREF= " http://banjosetupspecialist.homestead.com/index.html " >BanjoSetupSpecialist\

</A>

[Guest guest]

Luved talking to you all too lady, I hope her appatite picks up. Talk to them

about Dialantin, you can get a trough on part of her meds. if you can. The

seizures she's having " now " sounds like some of what Cody was experiencing. I

really belive it might be the meds for her. <hugs to Crystal> Take care &

let me know after you talk to the Dr.'s. ;-)

Your friend,

K.

<A

HREF= " http://banjosetupspecialist.homestead.com/index.html " >BanjoSetupSpecialist\

</A>

[Guest guest]

In a message dated 9/11/02 8:49:13 AM Central Daylight Time,

crsmoogie@... writes:

> . He believes

>

SUPER, It's great to find one that is worth a flip & tries, let us know!

[Guest guest]

In a message dated 9/12/02 3:33:46 PM Central Daylight Time,

crsmoogie@... writes:

>

No I'm glad you told me. At least I know, the dad blame Neuro should

have told me the drug that he was putting Cody on wasn't FDA approved... <hug>

Thank you ever so much for tell me lady, I owe ya a big one. I had NO idea.

;-) Give the sweet pea a hug!

KKS

[Guest guest]

In a message dated 9/12/02 3:33:46 PM Central Daylight Time,

crsmoogie@... writes:

>

No I'm glad you told me. At least I know, the dad blame Neuro should

have told me the drug that he was putting Cody on wasn't FDA approved... <hug>

Thank you ever so much for tell me lady, I owe ya a big one. I had NO idea.

;-) Give the sweet pea a hug!

KKS

[Guest guest]

In a message dated 11/6/02 7:17:51 PM Central Standard Time, ajb@...

writes:

> I don't know what is helping right now.

I'm so glad is doing MUCH BETTER! That's super news! Give her a

squeeze & a smooch from the family.

K.

<A HREF= " http://www.banjosetupspecialist.com/ " >BanjoSetupSpecialist</A>

[Guest guest]

Dear

I don't know what is helping right now. The VNS didn't seem to help

at first (ie. a week ago Sunday she was in Status for about 4 hours.) Since

then the seizures have been better (a lot). She hasn't had one for about 3

days! She is also on Lamictal , Clobazam, and Dilantin. She was on these

drugs before, though, while she was in the hospital, and she continued

seizing every 15 minutes. Even the neurologist won't say, though, whether

the seizures are improved from the VNS, the meds, or if the natural course

of her seizures is that they are taking a break. Either way, I'm glad we

tried the VNS. It sure beats having to keep her on the ketogenic diet. If

the seizures stay improved, maybe we will at some point wean down on some

meds. Who knows. Our thoughts (and our neurologists) are that her

seizures are bad enough that we needed to go after them with all tools

available.

I'm glad Crystal came home. I hope your stomach flu is better.

Take care of yourself.

- Bivens

...

> Thanks so much, hon...Crystal just got to come home today. It's

interesting

> what you said about cycles. We've noticed that Crystal will have one or

two

> bad days, followed by one or two better days. Weird...

> I'm so relieved to hear that is doing better. They've placed Crystal

> on Dilantin as a 3rd drug. I guess we also have to consider the VNS. Do

you

> think that it's helpd ???

>

> Anyway, please give your little great big {{{ HUGS & KISSES }}} to

> us...

>

> Take care & be well...

>

> Chris

>

>

>

>

[Guest guest]

Hi

I feel so sorry for your little Crystal and you to of course. It must be

so hard for you at the moment. Hang in there is all I can say. I am so

glad that Timon has no seizures to this point and hope he will never

have them. The only thing I am stuggling with at the moment is to find a

school for him were he can be together with normal kids and does not

have to go to an institution with only disabled kids. I don´t think his

delay in development , now about two years, he is 5.5 year, is that big

so why should he not go together with his brother and sister to a public

school? One positive thing the neuro said here is that Timon will not

learn more just because more people are pusshing him. He will hang on to

his own timesceduel and so why stress him just because people want him

to make up the time he is behind. Why is it so hard for some people to

understand that we love our children the way they are and just want them

to be happy and be able to cope with this way on their own terms?

Well, I am thinking of you and your little angel from this side on the

globe. Take care and have a nice weekend

Bianca

wrote:

> Nope... I've decided to stick it out with Dr. Goodman... He gave me a

> script

> for an EEG. The only problem is, there isn't an opening until the end

> of the

> month. The good news is, if she doesn't improve in a week or two, he wants

> us to consider a Vagal Nerve Stimulator. To do this, she has to be

> admitted

> to Dupont & they're going to run a battery of tests to try to determine if

> she has a focal point. This includes a video EEG ( 24 or 48 hour one ) &

> another MRI. I'm going to see if I can get him to run a pet scan, & spect

> scan also ( if they're not the same thing.. I'm really not up on this

> terminology ). Then we can decide if we want to try surgery. So, if she

> doesn't improve, he's going to take a more aggressive stance. He

> prescribed

> Tranxene. This is pretty heavy duty. He said that she can't go on

> having 30

> seizures in a day. He's afraid of it turning into an unbeatable pattern. I

> have to agree with him there. So, today we drop the Zonegran &

> Carnitine, &

> add the Tranxene. Shes' sleeping now for the 4th time today. This is the

> second day in a row of this. Dr. Goodman said it's because of the

> Dilantin.

> It's going to get worse with the Tranxene. I guess it's better then her

> seizing < sigh > ...

>

> Gotta go...Give your kids great big {{{ HUGS & KISSES }}} for us....

>

> Lotsa luv....

>

> & her sleeping beauty, Crystal Aquielle...

>

>

>

>

[Guest guest]

Hi

I feel so sorry for your little Crystal and you to of course. It must be

so hard for you at the moment. Hang in there is all I can say. I am so

glad that Timon has no seizures to this point and hope he will never

have them. The only thing I am stuggling with at the moment is to find a

school for him were he can be together with normal kids and does not

have to go to an institution with only disabled kids. I don´t think his

delay in development , now about two years, he is 5.5 year, is that big

so why should he not go together with his brother and sister to a public

school? One positive thing the neuro said here is that Timon will not

learn more just because more people are pusshing him. He will hang on to

his own timesceduel and so why stress him just because people want him

to make up the time he is behind. Why is it so hard for some people to

understand that we love our children the way they are and just want them

to be happy and be able to cope with this way on their own terms?

Well, I am thinking of you and your little angel from this side on the

globe. Take care and have a nice weekend

Bianca

wrote:

> Nope... I've decided to stick it out with Dr. Goodman... He gave me a

> script

> for an EEG. The only problem is, there isn't an opening until the end

> of the

> month. The good news is, if she doesn't improve in a week or two, he wants

> us to consider a Vagal Nerve Stimulator. To do this, she has to be

> admitted

> to Dupont & they're going to run a battery of tests to try to determine if

> she has a focal point. This includes a video EEG ( 24 or 48 hour one ) &

> another MRI. I'm going to see if I can get him to run a pet scan, & spect

> scan also ( if they're not the same thing.. I'm really not up on this

> terminology ). Then we can decide if we want to try surgery. So, if she

> doesn't improve, he's going to take a more aggressive stance. He

> prescribed

> Tranxene. This is pretty heavy duty. He said that she can't go on

> having 30

> seizures in a day. He's afraid of it turning into an unbeatable pattern. I

> have to agree with him there. So, today we drop the Zonegran &

> Carnitine, &

> add the Tranxene. Shes' sleeping now for the 4th time today. This is the

> second day in a row of this. Dr. Goodman said it's because of the

> Dilantin.

> It's going to get worse with the Tranxene. I guess it's better then her

> seizing < sigh > ...

>

> Gotta go...Give your kids great big {{{ HUGS & KISSES }}} for us....

>

> Lotsa luv....

>

> & her sleeping beauty, Crystal Aquielle...

>

>

>

>

[Guest guest]

Dear

I think we all know the frustation you're going through. Either she's so

doped up she's not the same kid, or she's seizing so much that she's not the

same kid.

I don't know if the VNS is working or not in , but today is about 6

days seizure free (zero). We still have a whole slew of other problems from

being hospitalized for so long, but through some quirk of fate, no seizures.

I think it is worth doing the VNS. 's medicines haven't changed in the

past 4 weeks, and you know how badly she was seizing just weeks ago. The

only thing which has changed is the settings on the VNS. I believe it is

either the device, or a natural break in her seizure cycle. Her Dilantin

levels were measured Thursday, and they are not even in the therapeutic

range.

The VNS is done (at least in Miami) as an outpatient procedure. There are 2

incisions: 1 by the left breast, and 1 on the left side of the neck. I

don't believe there is anything they will find on her EEG which can make her

a bad candidate for a VNS. The only thing that the EEG will determine is if

she is a candidate for brain surgery. If the disease is unilateral in her

brain or if it is focal (just one spot), they can remove that portion of her

brain. If it is bilateral (like ), they do not want to do surgery.

Even if only one area is seizing now, the other PMG areas have potential to

seize. With I asked them to remove the most stubborn area of seizures

in her brain. Her neurologist told me that the other areas which were

seizing only a little will probably just step up, and even if they don't,

they are no more likely than the bad areas to respond to medications.

I don't know anything about a PET scan, but I believe the way a SPECT scan

works is that immediately after a seizure, they inject a dye into the child,

and then follow up with the scan later. The scan will then light up the

area of the brain that was seizing earlier.

Good luck with whatever you decide.

Love,

...

> Nope... I've decided to stick it out with Dr. Goodman... He gave me a

script

> for an EEG. The only problem is, there isn't an opening until the end of

the

> month. The good news is, if she doesn't improve in a week or two, he wants

> us to consider a Vagal Nerve Stimulator. To do this, she has to be

admitted

> to Dupont & they're going to run a battery of tests to try to determine if

> she has a focal point. This includes a video EEG ( 24 or 48 hour one ) &

> another MRI. I'm going to see if I can get him to run a pet scan, & spect

> scan also ( if they're not the same thing.. I'm really not up on this

> terminology ). Then we can decide if we want to try surgery. So, if she

> doesn't improve, he's going to take a more aggressive stance. He

prescribed

> Tranxene. This is pretty heavy duty. He said that she can't go on having

30

> seizures in a day. He's afraid of it turning into an unbeatable pattern. I

> have to agree with him there. So, today we drop the Zonegran & Carnitine,

&

> add the Tranxene. Shes' sleeping now for the 4th time today. This is the

> second day in a row of this. Dr. Goodman said it's because of the

Dilantin.

> It's going to get worse with the Tranxene. I guess it's better then her

> seizing < sigh > ...

>

> Gotta go...Give your kids great big {{{ HUGS & KISSES }}} for us....

>

> Lotsa luv....

>

> & her sleeping beauty, Crystal Aquielle...

>

>

>

>

[Guest guest]

I hope the trip all falls into place very easily for you Chris. You deserve the

best and so does Crystal, and I know you would take her half way across the

world if need be. Those seizures of hers are taking their toll on her and also

on you, and I can see that you will do all that it takes to get them sorted.

I'll be thinking of you and look forward to hearing how the travel arrangements

come out.

Take care

[Guest guest]

Hi

good luck with your new project! I hope you will be able to manage it

and it will give Crystal and you the support you need. Keep us informed

and yes I wish you luck....

Keep smiling,

Bianca

wrote:

> That's wonderful news. I would miss you dreadfully, if you left. As you

> know, I live in NJ, USA. That's Egg Harbor Twp., NJ...

> Guess what ??? We're considering taking Crystal to see an expert on

> Infantile Spasms... The only problem is the distance involved... He works

> out of a hospital in Detroit, Michigan... My pediatrician says that it's

> about a 14 hour drive from here... The doctor's name is Harry Chugani.

> He's

> written over 100 papers on different aspects of the brain...He's also a

> specialist with the Pet Scan, & a reknowned Neurosurgeon...It's going

> to be

> very hard to pull this off. I'm just getting very tired of those Tonic

> Seizures...I watched her having one this morning while I changed her

> diaper...They scare me, cause when she stiffens up, she stops breathing...

> Anyway, I'm going to e-mail that doctor now & tell him our

> particulars...Wish me luck...

>

> As always, lots of love {{{ HUGS & KISSES }}} to you all...

>

> Your pal in the States...

>

> Chris

>

>

>

>

[Guest guest]

Hi

good luck with your new project! I hope you will be able to manage it

and it will give Crystal and you the support you need. Keep us informed

and yes I wish you luck....

Keep smiling,

Bianca

wrote:

> That's wonderful news. I would miss you dreadfully, if you left. As you

> know, I live in NJ, USA. That's Egg Harbor Twp., NJ...

> Guess what ??? We're considering taking Crystal to see an expert on

> Infantile Spasms... The only problem is the distance involved... He works

> out of a hospital in Detroit, Michigan... My pediatrician says that it's

> about a 14 hour drive from here... The doctor's name is Harry Chugani.

> He's

> written over 100 papers on different aspects of the brain...He's also a

> specialist with the Pet Scan, & a reknowned Neurosurgeon...It's going

> to be

> very hard to pull this off. I'm just getting very tired of those Tonic

> Seizures...I watched her having one this morning while I changed her

> diaper...They scare me, cause when she stiffens up, she stops breathing...

> Anyway, I'm going to e-mail that doctor now & tell him our

> particulars...Wish me luck...

>

> As always, lots of love {{{ HUGS & KISSES }}} to you all...

>

> Your pal in the States...

>

> Chris

>

>

>

>

[Guest guest]

Hi ,

I am so pleased to hear that is doing so well now that she is

home. Let´s keep our fingers crossed it will stay so.

Keep smiling,

Bianca

Hi

when the doc here saw that Timon has latent epilepsie ( do you say that

in english also this way?) not yet clinical I asked if he should get

seizures if they could operate and she also told me that in Timons case

this would not really be helpfull as it is not focal with him and the

impulses come from everywere in his brain.

Just for info from this side,

Keep smiling,

Bianca

Bivens wrote:

> Dear

> I think we all know the frustation you're going through. Either she's so

> doped up she's not the same kid, or she's seizing so much that she's

> not the

> same kid.

>

> I don't know if the VNS is working or not in , but today is about 6

> days seizure free (zero). We still have a whole slew of other

> problems from

> being hospitalized for so long, but through some quirk of fate, no

> seizures.

> I think it is worth doing the VNS. 's medicines haven't changed

> in the

> past 4 weeks, and you know how badly she was seizing just weeks ago. The

> only thing which has changed is the settings on the VNS. I believe it is

> either the device, or a natural break in her seizure cycle. Her Dilantin

> levels were measured Thursday, and they are not even in the therapeutic

> range.

>

> The VNS is done (at least in Miami) as an outpatient procedure. There

> are 2

> incisions: 1 by the left breast, and 1 on the left side of the neck. I

> don't believe there is anything they will find on her EEG which can

> make her

> a bad candidate for a VNS. The only thing that the EEG will determine

> is if

> she is a candidate for brain surgery. If the disease is unilateral in her

> brain or if it is focal (just one spot), they can remove that portion

> of her

> brain. If it is bilateral (like ), they do not want to do surgery.

> Even if only one area is seizing now, the other PMG areas have

> potential to

> seize. With I asked them to remove the most stubborn area of

> seizures

> in her brain. Her neurologist told me that the other areas which were

> seizing only a little will probably just step up, and even if they don't,

> they are no more likely than the bad areas to respond to medications.

>

> I don't know anything about a PET scan, but I believe the way a SPECT scan

> works is that immediately after a seizure, they inject a dye into the

> child,

> and then follow up with the scan later. The scan will then light up the

> area of the brain that was seizing earlier.

>

> Good luck with whatever you decide.

>

> Love,

>

> ...

>

>

> > Nope... I've decided to stick it out with Dr. Goodman... He gave me a

> script

> > for an EEG. The only problem is, there isn't an opening until the end of

> the

> > month. The good news is, if she doesn't improve in a week or two, he

> wants

> > us to consider a Vagal Nerve Stimulator. To do this, she has to be

> admitted

> > to Dupont & they're going to run a battery of tests to try to

> determine if

> > she has a focal point. This includes a video EEG ( 24 or 48 hour one ) &

> > another MRI. I'm going to see if I can get him to run a pet scan, &

> spect

> > scan also ( if they're not the same thing.. I'm really not up on this

> > terminology ). Then we can decide if we want to try surgery. So, if she

> > doesn't improve, he's going to take a more aggressive stance. He

> prescribed

> > Tranxene. This is pretty heavy duty. He said that she can't go on having

> 30

> > seizures in a day. He's afraid of it turning into an unbeatable

> pattern. I

> > have to agree with him there. So, today we drop the Zonegran &

> Carnitine,

> &

> > add the Tranxene. Shes' sleeping now for the 4th time today. This is the

> > second day in a row of this. Dr. Goodman said it's because of the

> Dilantin.

> > It's going to get worse with the Tranxene. I guess it's better then her

> > seizing < sigh > ...

> >

> > Gotta go...Give your kids great big {{{ HUGS & KISSES }}} for us....

> >

> > Lotsa luv....

> >

> > & her sleeping beauty, Crystal Aquielle...

> >

> >

> >

> >

[Guest guest]

Since we too just made that decision, thought I would just pass OUR thoughts

along. We decided on the VNS....we now have an appt. to " consult " with the MD

that will be doing the surgery.

After talking with our neuro we were convinced that it was the way to go.

According to him, even if the meds are working to some degree now, eventually

they will not be as effective at controlling seizures. There is of course no

guarantee that it will work, but if it does.........Carver could have less

seizures and possibly even get rid of a med or two. The MD doesn't think that

we can possibly stop Carver's intractable seizures, but he thinks it will help.

Other than the surgery to place the device, there don't seem to be any MAJOR

side effects. We too have to travel to get the procedure done, (albeit not as

far as you, just over an hour for us.)

Hope this helps, and good luck with whatever you decide.

It's the VNS

vs. trying Vigabatrin

[Guest guest]

Since we too just made that decision, thought I would just pass OUR thoughts

along. We decided on the VNS....we now have an appt. to " consult " with the MD

that will be doing the surgery.

After talking with our neuro we were convinced that it was the way to go.

According to him, even if the meds are working to some degree now, eventually

they will not be as effective at controlling seizures. There is of course no

guarantee that it will work, but if it does.........Carver could have less

seizures and possibly even get rid of a med or two. The MD doesn't think that

we can possibly stop Carver's intractable seizures, but he thinks it will help.

Other than the surgery to place the device, there don't seem to be any MAJOR

side effects. We too have to travel to get the procedure done, (albeit not as

far as you, just over an hour for us.)

Hope this helps, and good luck with whatever you decide.

It's the VNS

vs. trying Vigabatrin

[Guest guest]

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

From: Chris

I feel so badly for you & Gavan. No parents should have to deal with the pain

&

anguish that you've had to endure.

Thanks Chris

I am not bitter about it though. Its like the refiner's fire.... the gold starts

out in its crude and dirty state, but after much heat and fierce treatment it

comes out the other end of the process a more valuable and purified substance.

That's not to say that every day is okay, far from it, but every day is not

miserable either. I like to think that I have been refined to be more useful in

this world, and I am waiting to see in what way I will be used. I do know that I

want to help other parents of special needs kids, especially those who are just

starting out on the journey. I had nobody that I knew in the same shoes till

Hannah was well over a year old, and I see how valuable it would have been to

have that in the early days, and would like to offer tat support to others now.

Poor Crystal giving herself that bite. Hannah used to do the same. She would be

happily sucking on her knuckles or her thumb and then she would either have a

seizure, or her bite reflex would sometimes just kick in, right out of the blue,

and crunch..... she would draw blood before we could do anything about it.

Prizing her jaw open was the hard bit, because when the pain of the bite

registered she would tighten her jaw even more. Once I made the mistake of

pulling her finger out too quickly and I made the injury worse. I hope that

Crystal has better control soon. I can tell you are at your wits end.

luv'n'hugs

[Guest guest]

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

From: Chris

I feel so badly for you & Gavan. No parents should have to deal with the pain

&

anguish that you've had to endure.

Thanks Chris

I am not bitter about it though. Its like the refiner's fire.... the gold starts

out in its crude and dirty state, but after much heat and fierce treatment it

comes out the other end of the process a more valuable and purified substance.

That's not to say that every day is okay, far from it, but every day is not

miserable either. I like to think that I have been refined to be more useful in

this world, and I am waiting to see in what way I will be used. I do know that I

want to help other parents of special needs kids, especially those who are just

starting out on the journey. I had nobody that I knew in the same shoes till

Hannah was well over a year old, and I see how valuable it would have been to

have that in the early days, and would like to offer tat support to others now.

Poor Crystal giving herself that bite. Hannah used to do the same. She would be

happily sucking on her knuckles or her thumb and then she would either have a

seizure, or her bite reflex would sometimes just kick in, right out of the blue,

and crunch..... she would draw blood before we could do anything about it.

Prizing her jaw open was the hard bit, because when the pain of the bite

registered she would tighten her jaw even more. Once I made the mistake of

pulling her finger out too quickly and I made the injury worse. I hope that

Crystal has better control soon. I can tell you are at your wits end.

luv'n'hugs

[Guest guest]

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

From: Chris

I feel so badly for you & Gavan. No parents should have to deal with the pain

&

anguish that you've had to endure.

Thanks Chris

I am not bitter about it though. Its like the refiner's fire.... the gold starts

out in its crude and dirty state, but after much heat and fierce treatment it

comes out the other end of the process a more valuable and purified substance.

That's not to say that every day is okay, far from it, but every day is not

miserable either. I like to think that I have been refined to be more useful in

this world, and I am waiting to see in what way I will be used. I do know that I

want to help other parents of special needs kids, especially those who are just

starting out on the journey. I had nobody that I knew in the same shoes till

Hannah was well over a year old, and I see how valuable it would have been to

have that in the early days, and would like to offer tat support to others now.

Poor Crystal giving herself that bite. Hannah used to do the same. She would be

happily sucking on her knuckles or her thumb and then she would either have a

seizure, or her bite reflex would sometimes just kick in, right out of the blue,

and crunch..... she would draw blood before we could do anything about it.

Prizing her jaw open was the hard bit, because when the pain of the bite

registered she would tighten her jaw even more. Once I made the mistake of

pulling her finger out too quickly and I made the injury worse. I hope that

Crystal has better control soon. I can tell you are at your wits end.

luv'n'hugs

[Guest guest]

I know that feeling of waiting for the phone to ring, and every time it does you

answer with your heart in your throat. Gosh I wish there was an easier way of

life for you and that I lived close by to help you out. One day alone

with a seizing child is more than enough to make you crazy, and I know that you

have four kids and lots of issues to survive every day. The whole weekend must

have been tough.

I am thinking of you and pray that things will improve for Crystal and that life

will settle down for you.

Take care my friend

[Guest guest]

I know that feeling of waiting for the phone to ring, and every time it does you

answer with your heart in your throat. Gosh I wish there was an easier way of

life for you and that I lived close by to help you out. One day alone

with a seizing child is more than enough to make you crazy, and I know that you

have four kids and lots of issues to survive every day. The whole weekend must

have been tough.

I am thinking of you and pray that things will improve for Crystal and that life

will settle down for you.

Take care my friend