New member looking for advice

[Guest guest]

Hi Troy...

Unfortunately, as far as I know, there is no scoliosis brace that

wouldn't put pressure on your lungs.

I think there may be other subscribers to this list who have severe

pulmonary restriction and maybe they will have some advice.

I'm really sorry about your predicament and hope that you find some relief.

Regards,

[Guest guest]

Dear Troy

Have you seen any scoliosis specialists?

Sanette

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[Guest guest]

HI everyone,

I just joined the group and I'm looking for help and advice regarding my 3 year

old daughter.

Her basic problem is hypoglycemia -low sugars because of which she had seizures

in the neonatal stage and due to which she still has recurring seizing

activities even when her sugars are normal.

She was on Sodium Valporate and had episodes(always while sleeping ,stares to

the right,does'nt respond and is accompanied with nausea)once in 5 months on an

avg.She had an episode in August last and then her neuro changed her medication

to Keppra.She had her next episode today after just 2 months.

Now I dont know whether Keppra is working good enough for her or maybe it was

triggered by her not sleeping properly yesterday night.I'm just so confused and

was just wondering whether anyone who has switched medications have suffered

with more seizures.

Thanx in advance.

Arshiya

[Guest guest]

Hi Arshiya,

How is your daughter's nutrition?

especially foods high in B complex vitamins such as leafy green vegetables,

whole wheat bread and brown rice.

Kids are not known for healthy foods.

Anticonvulsant drugs can be powerful stuff that sometimes do more harm than

good.

arnold

[Guest guest]

I hope that your find the websites below helpful. I am not medically trained but

a member of my family had suffered from epileptic seisures. The seizures had

stopped for over a year now without drugs, using nutritional methods, natural

food suplements and homeopathic medicine. 

 

http://www.rense.com/general83/aspp.htm

 

http://www.communicationagents.com/sepp/2008/07/17/seizure_inducing_aspartame_ad\

ded_to_antiseizure_drugs.htm

 

http://health-fitness-solutions.blogspot.com/2008/07/aspartame-added-to-epilepsy\

-medications.html

 

Dr Mercola is one of the leading Natural Health Practitioners in America

http://articles.mercola.com/sites/articles/archive/2005/05/07/anti-seizure.aspx

 

http://articles.mercola.com/sites/articles/archive/2003/12/27/siezure-diet.aspx

 

See the article below about one ot the variations of the Natural Ketogenic diet.

by ph Brasco, MD

http://www.mercola.com/article/carbohydrates/scientific_evidence_low_grains.htm

 

http://www.mercola.com/article/carbohydrates/scientific_evidence_low_grains2.htm

 

In addition to the above diet and and avoiding excitotoxins and neurotoxins. I

believe that the following suplements have been helpful to a member of my family

to stop epileptic seizures, however she did not suffer from hypoglycemia.

Calcium Lactate

Cataplex F

Hypothalamus PMG

The company that makes these products is Standard Process and you can only get

these from a health care professional. You might call them for a doctor who

carries this line.

Standard Process Inc.

1200 W. Royal Lee Drive

Palmyra, WI 53156

800-848-5061 (toll free)

262-495-2122 (local)

info@...

We were origi nally advised by a Natural Health Practitioner that if this

protocol does not totally cure her condtion in 1-2 weeks then she would need to

go on a Ketogenic Diet as well.

Homeopathic medicine can also be helpful.

 

 

From: KewlChik7952 <arshiya4@...>

Subject: [ ] New member looking for advice

Date: Sunday, 25 October, 2009, 15:49

 

HI everyone,

I just joined the group and I'm looking for help and advice regarding my 3 year

old daughter.

Her basic problem is hypoglycemia -low sugars because of which she had seizures

in the neonatal stage and due to which she still has recurring seizing

activities even when her sugars are normal.

She was on Sodium Valporate and had episodes(always while sleeping ,stares to

the right,does'nt respond and is accompanied with nausea)once in 5 months on an

avg.She had an episode in August last and then her neuro changed her medication

to Keppra.She had her next episode today after just 2 months.

Now I dont know whether Keppra is working good enough for her or maybe it was

triggered by her not sleeping properly yesterday night.I'm just so confused and

was just wondering whether anyone who has switched medications have suffered

with more seizures.

Thanx in advance.

Arshiya

[Guest guest]

I would also like to add to my previous email that we avoid aspartame, sodium

nitrate, MSG any artificial sweeteners etc. This means that we avoid the

mayority of all processed food.

 

We do use herbs in our food like oregano, black pepper, coriander, turmeric

(curcumin), cinnamon which have some anticonvulsive effect. We also use garlic

in our food quite often to support our overall health. 

From: KewlChik7952 <arshiya4@...>

Subject: [ ] New member looking for advice

Date: Sunday, 25 October, 2009, 15:49

 

HI everyone,

I just joined the group and I'm looking for help and advice regarding my 3 year

old daughter.

Her basic problem is hypoglycemia -low sugars because of which she had seizures

in the neonatal stage and due to which she still has recurring seizing

activities even when her sugars are normal.

She was on Sodium Valporate and had episodes(always while sleeping ,stares to

the right,does'nt respond and is accompanied with nausea)once in 5 months on an

avg.She had an episode in August last and then her neuro changed her medication

to Keppra.She had her next episode today after just 2 months.

Now I dont know whether Keppra is working good enough for her or maybe it was

triggered by her not sleeping properly yesterday night.I'm just so confused and

was just wondering whether anyone who has switched medications have suffered

with more seizures.

Thanx in advance.

Arshiya

Messages in this topic (1) Reply (via web post) | Start a new topic

Messages | Photos

[Guest guest]

Actually nutrition is the main problem we are facing as she nearly just survives

on pediasure and milk.She's got feeding problems and is very very fussy with

food.

 

I was also wondering whether there are any side effects to Keppra??

 

Arshiya

From: arnoldgore@... <arnoldgore@...>

Subject: [ ] Re:New member looking for advice

Date: Monday, October 26, 2009, 1:54 PM

 

Hi Arshiya,

How is your daughter's nutrition?

especially foods high in B complex vitamins such as leafy green vegetables,

whole wheat bread and brown rice.

Kids are not known for healthy foods.

Anticonvulsant drugs can be powerful stuff that sometimes do more harm than

good.

arnold

[Guest guest]

Thank you so much for the links.I shall take the suggestions into consideration.

From: KewlChik7952 <arshiya4 (DOT) com>

Subject: [ ] New member looking for advice

Date: Sunday, 25 October, 2009, 15:49

 

HI everyone,

I just joined the group and I'm looking for help and advice regarding my 3 year

old daughter.

Her basic problem is hypoglycemia -low sugars because of which she had seizures

in the neonatal stage and due to which she still has recurring seizing

activities even when her sugars are normal.

She was on Sodium Valporate and had episodes(always while sleeping ,stares to

the right,does'nt respond and is accompanied with nausea)once in 5 months on an

avg.She had an episode in August last and then her neuro changed her medication

to Keppra.She had her next episode today after just 2 months.

Now I dont know whether Keppra is working good enough for her or maybe it was

triggered by her not sleeping properly yesterday night.I'm just so confused and

was just wondering whether anyone who has switched medications have suffered

with more seizures.

Thanx in advance.

Arshiya

[Guest guest]

My daughter took Keppra and it was a bad choice for her. Her sweet personality

turned violent. She even would get so angry that she tried to pull out her own

hair.

>

>

> From: arnoldgore@... <arnoldgore@...>

> Subject: [ ] Re:New member looking for advice

>

> Date: Monday, October 26, 2009, 1:54 PM

>

>

>  

>

>

>

> Hi Arshiya,

> How is your daughter's nutrition?

> especially foods high in B complex vitamins such as leafy green vegetables,

> whole wheat bread and brown rice.

> Kids are not known for healthy foods.

> Anticonvulsant drugs can be powerful stuff that sometimes do more harm than

> good.

> arnold

>

>

[Guest guest]

Hi Arshiya.

I'm sorry to hear about your daughter. Her seizures sound identical to the ones

my 6 year old son has (staring to one side, only occur during sleep, etc.) His

EEG was a complete mess, but almost immediately after starting Keppra, almost

all of the abnormal activity that was seen on his EEG disappeared and he hasn't

had a seizure since he started it this summer, so in those ways Keppra seems to

be very effective.

On the flip side, we also have seen behavioral and mood issues. He can get angry

very easily, and while he's not too physically aggressive at this point (which

is a potential side effect). he also gets depressed very easily. which is so sad

and scary to see in a young child.

So my husband and I are thinking about taking the suggestion of his neuro and

switching him to Lamictal, which we're told can also be effective with this type

of seizure and does not have the same types of side effects. (There is one side

effect - the Lamictal Rash - that you need to be very careful about though, so

if you do decide to try it your daughter will need to be slowly brought up to

full dose over weeks or months. With Keppra you can get to full dose very

quickly.)

I hope this is helpful. I'll be thinking good thoughts for you and your family.

>

>

> From: arnoldgore@... <arnoldgore@...>

> Subject: [ ] Re:New member looking for advice

>

> Date: Monday, October 26, 2009, 1:54 PM

>

>

> �

>

>

>

> Hi Arshiya,

> How is your daughter's nutrition?

> especially foods high in B complex vitamins such as leafy green vegetables,

> whole wheat bread and brown rice.

> Kids are not known for healthy foods.

> Anticonvulsant drugs can be powerful stuff that sometimes do more harm than

> good.

> arnold

>

>

[Guest guest]

Hi ,

 

Well thanx for your reply.Good for you that your son's doing fine.

 

I have'nt noticed any behavioural changes as yet with my daughter and it has

been a little more than 4 weeks since starting with Keppra.Only of late I have

began the full dosage of 2ml-0-2ml so I'll have to wait and watch fro any

changes.She is a very sweet happy going girl so I'm sure that any changes will

be evident.

 

Also the last time she had the episode it lasted for an hour.She came out of it

without medication.(by the time they had the lines in the seiz had passes).Did

you son's seizures ever last that long??Or anyone one else on this group for

that matter.And is it something to be very worried about.

 

Arshiya

 

From: li201 <lisa@...>

Subject: [ ] Re:New member looking for advice

Date: Monday, October 26, 2009, 5:28 PM

 

Hi Arshiya.

I'm sorry to hear about your daughter. Her seizures sound identical to the ones

my 6 year old son has (staring to one side, only occur during sleep, etc.) His

EEG was a complete mess, but almost immediately after starting Keppra, almost

all of the abnormal activity that was seen on his EEG disappeared and he hasn't

had a seizure since he started it this summer, so in those ways Keppra seems to

be very effective.

On the flip side, we also have seen behavioral and mood issues. He can get angry

very easily, and while he's not too physically aggressive at this point (which

is a potential side effect). he also gets depressed very easily. which is so sad

and scary to see in a young child.

So my husband and I are thinking about taking the suggestion of his neuro and

switching him to Lamictal, which we're told can also be effective with this type

of seizure and does not have the same types of side effects. (There is one side

effect - the Lamictal Rash - that you need to be very careful about though, so

if you do decide to try it your daughter will need to be slowly brought up to

full dose over weeks or months. With Keppra you can get to full dose very

quickly.)

I hope this is helpful. I'll be thinking good thoughts for you and your family.

>

>

> From: arnoldgore@. .. <arnoldgore@ ...>

> Subject: [ ] Re:New member looking for advice

>

> Date: Monday, October 26, 2009, 1:54 PM

>

>

> �

>

>

>

> Hi Arshiya,

> How is your daughter's nutrition?

> especially foods high in B complex vitamins such as leafy green vegetables,

> whole wheat bread and brown rice.

> Kids are not known for healthy foods.

> Anticonvulsant drugs can be powerful stuff that sometimes do more harm than

> good.

> arnold

>

>

[Guest guest]

Hello Arshiya,

There are some anecdotal reports that B12/B6 vitamin supplementation can help

with the mood swings due to Keppra. Look at the postings about this on the

Internet. Here are a few links to get you started.

http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=11 & thread\

id=86357

http://www.epilepsysociety.org.uk/Forum/viewtopic.php?f=3 & t=19977 & st=0 & sk=t & sd=a\

& start=0

http://www.epilepsysociety.org.uk/Forum/viewtopic.php?f=3 & t=19977 & st=0 & sk=t & sd=a\

& start=0

Mike

From: [mailto: ] On

Behalf Of khan arsh

Sent: Tuesday, October 27, 2009 12:06 PM

Subject: Re: [ ] Re:New member looking for advice

Hi ,

Well thanx for your reply.Good for you that your son's doing fine.

I have'nt noticed any behavioural changes as yet with my daughter and it has

been a little more than 4 weeks since starting with Keppra.Only of late I have

began the full dosage of 2ml-0-2ml so I'll have to wait and watch fro any

changes.She is a very sweet happy going girl so I'm sure that any changes will

be evident.

Also the last time she had the episode it lasted for an hour.She came out of it

without medication.(by the time they had the lines in the seiz had passes).Did

you son's seizures ever last that long??Or anyone one else on this group for

that matter.And is it something to be very worried about.

Arshiya

From: li201 <lisa@...<mailto:lisa%40lackoffocus.com>>

Subject: [ ] Re:New member looking for advice

<mailto: %40>

Date: Monday, October 26, 2009, 5:28 PM

Hi Arshiya.

I'm sorry to hear about your daughter. Her seizures sound identical to the ones

my 6 year old son has (staring to one side, only occur during sleep, etc.) His

EEG was a complete mess, but almost immediately after starting Keppra, almost

all of the abnormal activity that was seen on his EEG disappeared and he hasn't

had a seizure since he started it this summer, so in those ways Keppra seems to

be very effective.

On the flip side, we also have seen behavioral and mood issues. He can get angry

very easily, and while he's not too physically aggressive at this point (which

is a potential side effect). he also gets depressed very easily. which is so sad

and scary to see in a young child.

So my husband and I are thinking about taking the suggestion of his neuro and

switching him to Lamictal, which we're told can also be effective with this type

of seizure and does not have the same types of side effects. (There is one side

effect - the Lamictal Rash - that you need to be very careful about though, so

if you do decide to try it your daughter will need to be slowly brought up to

full dose over weeks or months. With Keppra you can get to full dose very

quickly.)

I hope this is helpful. I'll be thinking good thoughts for you and your family.

>

>

> From: arnoldgore@. .. <arnoldgore@ ...>

> Subject: [ ] Re:New member looking for advice

>

> Date: Monday, October 26, 2009, 1:54 PM

>

>

> �

>

>

>

> Hi Arshiya,

> How is your daughter's nutrition?

> especially foods high in B complex vitamins such as leafy green vegetables,

> whole wheat bread and brown rice.

> Kids are not known for healthy foods.

> Anticonvulsant drugs can be powerful stuff that sometimes do more harm than

> good.

> arnold

>

>

[Guest guest]

Thanx mike.

From: li201 <lisalackoffocus (DOT) com<mailto:lisa% 40lackoffocus. com>>

Subject: [ ] Re:New member looking for advice

<mailto:epilepsycur ed%40groups .com>

Date: Monday, October 26, 2009, 5:28 PM

Hi Arshiya.

I'm sorry to hear about your daughter. Her seizures sound identical to the ones

my 6 year old son has (staring to one side, only occur during sleep, etc.) His

EEG was a complete mess, but almost immediately after starting Keppra, almost

all of the abnormal activity that was seen on his EEG disappeared and he hasn't

had a seizure since he started it this summer, so in those ways Keppra seems to

be very effective.

On the flip side, we also have seen behavioral and mood issues. He can get angry

very easily, and while he's not too physically aggressive at this point (which

is a potential side effect). he also gets depressed very easily. which is so sad

and scary to see in a young child.

So my husband and I are thinking about taking the suggestion of his neuro and

switching him to Lamictal, which we're told can also be effective with this type

of seizure and does not have the same types of side effects. (There is one side

effect - the Lamictal Rash - that you need to be very careful about though, so

if you do decide to try it your daughter will need to be slowly brought up to

full dose over weeks or months. With Keppra you can get to full dose very

quickly.)

I hope this is helpful. I'll be thinking good thoughts for you and your family.

>

>

> From: arnoldgore@. .. <arnoldgore@ ...>

> Subject: [ ] Re:New member looking for advice

>

> Date: Monday, October 26, 2009, 1:54 PM

>

>

> �

>

>

>

> Hi Arshiya,

> How is your daughter's nutrition?

> especially foods high in B complex vitamins such as leafy green vegetables,

> whole wheat bread and brown rice.

> Kids are not known for healthy foods.

> Anticonvulsant drugs can be powerful stuff that sometimes do more harm than

> good.

> arnold

>

>

[Guest guest]

Hello,

My 7 year old son is on Keppra/Lamictal. He has been seizure free for quite

some time now. The beginning of Keppra was rough. He had crying spells,

anger problems......he is always a very sweet, laid back child. His Neuro

from Vanderbilt had us add 50 mg of B-6 and it took care of the problem. Do

a little reading on B-6 and Keppra online and you'll see that alot of Neuro

s recommend doing this. It DEFINATELY worked in my sons case. I wish you

the best. It has been a long road for us and took a while to get his med's

figured out but we finally did and he is doing well.

Margie