Borage oil and seizure disorders

[Guest guest]

Tammy - I thought this statement might get mis-interpreted. I said (below)

" seizures are usually not life threatening. " Which I believe is a true

statement. The millions living with a seizure disorder (including many in

my family) can attest to that fact. Of course, anything can cause loss of

life and that is why individuals with seizure disorders are closely

monitored.

Sorry for any confusion,

[Guest guest]

Okay, so I'm a bit reluctant to post anymore to this discussion since I have

not searched the archives. But I'll mention what my daughter's neurologist

just told me about adding the amino acid supplement to Myra's diet. He felt

it was no different than the fatty acid supplement. He doesn't believe it

will harm the child and also doesn't believe it will benefit her. He is

not convinced that the supplementation crosses the " blood brain barrier " . I

know there is controversy over this issue and I'll have to go back to the

Omega 3 RI site and read that paper about " Brain Uptake and Utilization of

Fatty Acids " . Anyway I took the opportunity to tell our Nuero just how

impressed we are with the increases in receptive language and was happy to

hear him say that he has never had any patient admitted to the ER for

" STATUS EPILEPTUS " because of amino acid or fatty acid supplementation. So

we're good to go. By the way in addition to the surge in receptive language

I have noticed an increase in independence. Myra has strengthened her mouth

muscles so that now she is able to purse her lips. Yes, this is beneficial

for speech but it made it more difficult for me to feed her. She wouldn't

let me put food in her mouth anymore. Yesterday, she pursed her lips and

then grabbed the spoon herself and wanted to do it on her own. She ate like

a champion. I am really struggling with an issue regarding braces for her

feet. She has low tone and her ankles pronate. Every PT we have used said,

" wait she'll gain strength, she's just and immature walker " . But the Ortho

said, " solid AFO's " , so I got a second opinion and gave in and had her

fitted for braces. The orthotist built a nice little dynamic supramallar

something or other. She acts like her legs are paralysed when she wears

them. The PT wants me to wait until she turns three use them which is just

a couple of months away. The braces don't do anything to strengthen the

ankle muslces but should help stabilize her a bit. Sorry, I got carried

away, this is group is suppose to be about talking not walking. I love the

little soccer game with paper and straws. It's much better than spit balls.

Adios!

Deirdre

[ ] Re: Borage oil and seizure disorders

> Dear Amber and everyone,

>

> Please calm down and stop panicking -don't forget that a few years

> ago in the apraxia world most of the panic was because your child

> wasn't talking, and was progressing so slow -and most of the posts

> were about that. At least quite a few of us have gone beyond that.

>

> If your child is prone to seizures -Dr. Chez a neurologist approved

> ProEFA for patients of his that are members in our group who have

> children with severe seizures and apraxia who are doing better than

> ever and starting to talk -and Dr Agin a developmental pediatrician

> who has seen and heard the same has posted that the good outweighs

> any possible risk. All of this -and many more like it from other

> doctors, and us, the parents too, is in the archives. I know that

> there are always new people that haven't seen these posts -so to many

> of us it seems we keep getting the same questions over and over (well

> it doesn't just seem like it -we are at times)

>

> When you have doubt -listen to all, including your own head and

> heart -consult with your own child's pediatrician or

> neurodevelopmental doctor (and if he says to use 4 ProEFA capsules a

> day and you do and your child is doing great then continue without

> driving yourself nuts. I'm not posting the amount here but I give my

[Guest guest]

Hi Tammy,

Let me make myself a little clearer on what I was told. I was told

that a seizure could " fry " your brain if it went on too long. I was

not told that a seizure could stop her heart. I am very surprised

that the docs at Children's Memorial Neurology department in Chicago

didn't make me aware of this. I was told to call 911 only if I have

to use the Rectal Diastat that is to be given if her seizure lasts

longer than 5 minutes. Otherwise, I am to call the neuro on call at

the children's hospital if she has more than one seizure. My point

is that I understand that seizures can be dangerous if not given the

proper attention, and that some are more dangerous than others.

I will refrain from making general statements about anything again.

thank you

Amber

-- In @y..., " Tammy Sowell " <Tammy_S68@m...> wrote:

> Wow, I'm not sure how you heard a seizure can't kill you but I

think that's inaccurate. My son used to have drop seizures as an

infant/toddler and I assure you all the specialists told me to call

911 IMMEDIATELY because it could be fatal if he didn't start

breathing again shortly on his own. During the seizures his heart

would stop too, or at least there would be no detectable

pulse/heartbeat. I don't want to relive those terrible days but I

didn't want to stay quiet on this on this one either.

> Tammy

>

[Guest guest]

My son went to a metabolic doctor and they ran numerous tests and they need

to run another test but they think the his Amino Acids are higher then

usually and that's what is causing his low muscle tone.

Take Care

Lori

[Guest guest]

Deirdre,

My daughter has cp so she has speech and walking issues. I just wanted to let

you know about our experiences with AFOs (braces). My daughter is 7 years old

and has pretty much worn braces since she was 2 years old. She's very skinny,

but one of the things that always looked strange was how big her knees seemed.

It wasn't until we went to a MEDEK therapist in Canada that we realized what was

so strange. Her calves are very thin and look very fragile and so they made her

knees look huge. As it turns out, years of wearing her braces prevented her

calf muscles from developing because the braces did the work for her. The

braces gave her stability and strength, but not because her muscle were doing

the work - the braces were. We now take off the braces as often as possible and

try to do her MEDEK exercises as well as some walking without them on. We can

see the difference because her calves went from flabby to actually developing

some muscles and firming up. She still wears braces, but we've also ordered

some shoes from a company called Piedro footwear that makes supportive shoes so

that hopefully, she won't need the braces as much anymore. One more thing about

the braces - I highly recommend looking at CASCADES - they're more expensive and

your orthotist will have to order them for you - but the comfort level is so

much better!

Vicky

Re: [ ] Re: Borage oil and seizure disorders

Okay, so I'm a bit reluctant to post anymore to this discussion since I have

not searched the archives. But I'll mention what my daughter's neurologist

just told me about adding the amino acid supplement to Myra's diet. He felt

it was no different than the fatty acid supplement. He doesn't believe it

will harm the child and also doesn't believe it will benefit her. He is

not convinced that the supplementation crosses the " blood brain barrier " . I

know there is controversy over this issue and I'll have to go back to the

Omega 3 RI site and read that paper about " Brain Uptake and Utilization of

Fatty Acids " . Anyway I took the opportunity to tell our Nuero just how

impressed we are with the increases in receptive language and was happy to

hear him say that he has never had any patient admitted to the ER for

" STATUS EPILEPTUS " because of amino acid or fatty acid supplementation. So

we're good to go. By the way in addition to the surge in receptive language

I have noticed an increase in independence. Myra has strengthened her mouth

muscles so that now she is able to purse her lips. Yes, this is beneficial

for speech but it made it more difficult for me to feed her. She wouldn't

let me put food in her mouth anymore. Yesterday, she pursed her lips and

then grabbed the spoon herself and wanted to do it on her own. She ate like

a champion. I am really struggling with an issue regarding braces for her

feet. She has low tone and her ankles pronate. Every PT we have used said,

" wait she'll gain strength, she's just and immature walker " . But the Ortho

said, " solid AFO's " , so I got a second opinion and gave in and had her

fitted for braces. The orthotist built a nice little dynamic supramallar

something or other. She acts like her legs are paralysed when she wears

them. The PT wants me to wait until she turns three use them which is just

a couple of months away. The braces don't do anything to strengthen the

ankle muslces but should help stabilize her a bit. Sorry, I got carried

away, this is group is suppose to be about talking not walking. I love the

little soccer game with paper and straws. It's much better than spit balls.

Adios!

Deirdre

[Guest guest]

Dear Vicky,

Thanks for your reply. These PT's see Myra once a week and they know her

better than the Orthopedic doctor who looks at her for 5 minutes. She's had

the braces a week and she wore them a couple of hours each day for the first

couple of days. She could barely stand in her bare feet after that. The

orthotist is saying she's a toe walker. That was a first but I could see it

in her left leg but it was becasue of the brace. She doesn't do that in

regular shoes. I think I will wait until she gets a bit older and then

maybe we can go to a corrective shoe or something. But the PT thinks the

problem is in the hip so we are working on increasing her range of motion in

her hips. So she has to practice pushing and extending like on a scooter.

That sounds like more fun and muscle strenghtening. I think swimming will

help increase her flexiblity and strength. Has your daughter tried walking

in a pool?

Deirdre Re: [ ] Re: Borage oil and seizure disorders

> Deirdre,

>

> My daughter has cp so she has speech and walking issues. I just wanted to

let you know about our experiences with AFOs (braces). My daughter is 7

years old and has pretty much worn braces since she was 2 years old. She's

very skinny, but one of the things that always looked strange was how big

her knees seemed. It wasn't until we went to a MEDEK therapist in Canada

that we realized what was so strange. Her calves are very thin and look

very fragile and so they made her knees look huge. As it turns out, years

of wearing her braces prevented her calf muscles from developing because the

braces did the work for her. The braces gave her stability and strength,

but not because her muscle were doing the work - the braces were. We now

take off the braces as often as possible and try to do her MEDEK exercises

as well as some walking without them on. We can see the difference because

her calves went from flabby to actually developing some muscles and firming

up. She still wears braces, but we've also ordered some shoes from a

company called Piedro footwear that makes supportive shoes so that

hopefully, she won't need the braces as much anymore. One more thing about

the braces - I highly recommend looking at CASCADES - they're more expensive

and your orthotist will have to order them for you - but the comfort level

is so much better!

>

> Vicky