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Input Please

Double_V

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Backstory to the topic: My 23 year old son has intractable epilepsy, which means we cannot stop the seizures. He has many kinds, none as you would typically think of. The ones that are the most dangerous are known as "Drop Attacks". With no warning his motor function is 'turned off', he is conscious but free falls. There is alot of stuff a person can/does get injured on. Of course our greatest fear is a grand mal, which can kill in a persons sleep. Frequently due to the tongue falling against the air way. Suffocation during the "rcovery" period post seizure in which a person is in a deep deep sleep, unconsious.

As as is common this came on at about age 17, and has steadily become worse. Age for a male to die with condition, 28 - 35. Usually due to stress, lack of sleep, lack of a consistant sleep schedule, illness or alcohol consumption reducing effectiveness of meds, or being alone/not having someone available to give assistance/call for help. Often causes memory loss, confusion, or stroke. Even in young people.

The drop attacks are our immediate problem, keep us on edge.

Okay, so here is what I am befuddled about. This morning my son fell and it created a rip about 2" long in his forehead and eyebrow. He was alone, he'd stepped to our shop with his brother who had just left for a swim meet. My husband hadn't walked into the shop yet, not that it would have stopped the seizure. All of that is an odd occurance in itself, we never leave him on his own anymore. Three minutes later I hear my son back in the house and I hear "Mahmmm". I know this sound. It means "Come here. I need help (something is wrong). Do not alert Dad". Before I got into the room I fully expected I was going to be taking him to the hospital. He says "Okay, don't freak out. I think I'm going to need stiches". Yup, a 1" rip across his eyebrow and then almost 2" straight up his forehead. I didn't say anything other than let me throw on clothes and let's go. My husband was within 2 rooms of us. I decided not to say anything until my son and I were walking out the door. At which point my husband walked into the room and I announced "He needs stitches, we're leaving for the ER right now, we aren't waiting, catch up to us".

Some 15 or 20 minutes (we live about a 2 miles to the ER) husband walks in the ER, looks at our son, turns ghost white. He cannot look at the wound, tho this is far from the first time or worst our son has suffered. He disappears. I assist the nurses and doctor, my son, give all the needed info, inspect the wound. While that is going on I hear two airy sobs. I step out of the cubicle to see if it's what I think. Yes, it is. My husband is huddled in the next space over against a wall sobbing. Sobbing within ear shot. I step over and grab him by his leather shoulder, hall him out of the ER and deposit him in the lobby, say "I'm not judging you, you cannot cry infront of him. Go head here. Get yourself together, here's a coffee, and come back in when you can. I'm going back in there now". He did manage to utter "I just feel so bad for him" in the middle of all of that.

My husband is an ESTJ, my oldest daughter is and ISFJ (and an EMT too). NEITHER attended my sons nuerosurgery last year. In fact all they did was ignore it, cry, or argue with me.

When we get home I see my husband had poured his coffee out in the sink from a high elevation, it's splashed far and wide across the sink and counter suggesting to me me he was emotional after we'd left for the hospital.

I almost went and cleaned the blood off the floor where this occured. I see my son tried o wipe it up himself, it's about 2 Sq Ft. This is a 'man cave' space I've asked the males to install rubber flooring in many times for fear of this very thing to no avail. I decided to leave the stain so perhaps they might "get it" and put the matting in as I'd asked. I know my husband is staying in the house right now because he can't deal with the idea of seeing that.

I am at a complete loss. What the fuck is the about? I can't imagine acting in such an emotional, self indulgent, unproductive way. And I find myself annoyed that I can never have a moment that I could even consider behaving in such unsupportive/indulgent (selfish) way. A point that I doubt has ever crossed my husband (or daughters) mind.

Thank you *off rant*

I'd appreciate some other input. I think I must not be able to see what their problem is. *shrug*
 

just george

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You're an entp - you see the problem in all its complexity, put all the little pieces together and know instantly what the best course of action is with the cards that you've been dealt. So for you, all of those nuances like keeping distress out of your sons range of perception are obvious.

Your husband and daughter aren't as pragmatic, can't deal with it and either dodge or melt down. It isn't their fault, since that's how they're wired and they don't have that instant appreciation of what actions are the best play for the situation (frustrating to you perhaps).

Your son has picked up on it obviously, which is why you're the go to person for this kind of stuff rather than your husband.

If I were in your shoes I would have a chat with your husband with the goal of imparting to and reassuring him that this is one of those things that he cant control, that is not his fault, that he shouldn't beat himself up over it (since imo that's what he's doing - he's feeling helpless and can't deal), and that when incidents happen, that he has to get into "deal with the situation with a poker face on" mode.

No doubt you wont be able to resist stressing to him that showing emotion around yours son is going to make your son feel guilty, which is hugely hard on him (since your son probably feels like it is his fault) since he's already dealing with the condition and ought not to have to deal with guilt too - but perhaps a good thing to do given your husbands personality is to give him a problem that he CAN solve - like putting in the rubber mats and removing any obstacles that would injure your son should it happen again.

Just my 2c. Good luck with an obviously uncool situation V
 

Cognisant

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You baby them, which makes them easier to deal with but also makes them useless, then again if you tell your husband to harden up and act like a man he's probably going to take it personally, not good for your relationship.

I'm not qualified to advise you, sorry :slashnew:
 
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I think what you might be observing is his realization that he won't be able to live through his son, a conflict of philosophy. Children are a genetic, social, and emotional investment in the future, and perhaps he's disturbed by the idea that "his" offspring is limited. There's a certain immortality factor involved in reproduction and child-rearing, and in a way a part of him is hurting/dying. This is Fi (an anchoring function) at work. Just my guess.

The blood on the floor also isn't helping in that respect.
 

Double_V

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Just came from a long bath to have a think. Will answer JG's last as there is alot I want to digest from it an the answer.

You baby them,

I know. It's true. Lol, the big bad mean ENTP mom spoils all. It's true.

which makes them easier to deal with

You know I don't think it's that. I think it is 'the curse of being a competent woman'. 'She makes it look easy', people are drawn to that, especially those who need someone like that in the first place. This covers my husband well.

My daughter the ISFJ (I'd mistakenly typed T before and have corrected that), has other issues. One is ISFJ's (need constant direction/support) children don't really match ENTP moms (free stylers!), and frankly she has always been jealous of the attention her little brother got. He was alwaysexcessively good looking and outgoing, popular, and it 'looked' like all things came easily to him. He and I always got along very, very well (we are similar). She has not been able to recognize it was/is time for her to grow up as an adult, and that he gets his parents attention/care/financial aid because he needs it.

The truth is I gave way more than what most kids ever get, certainly more than her friends/most class mates got, and more than what I ever got from mine. In fact, she is angry because she thinks I should give of myself to her what I give to him.

She does not understand, there is/was no more to give. I was spent.

but also makes them useless,

*Nods head in agreement*

And not just them. I think we all know we're all sort of useless against this. It feels awful and empty. Probably moreso for those who know it exposes - or makes them see any weakness they might have. *sigh*

Any sort of weirdness a family may have, any illness in the family stresses it and brings it right out of the woodwork. I remember when we used to be "normal".

then again if you tell your husband to harden up and act like a man he's probably going to take it personally, not good for your relationship.[/QUOTE]

I could tell him but don't think he would translate that into anything positve, or see it as non personal. <--- Not worded well on my part.

I'm not qualified to advise you, sorry :slashnew:

Eh, you did fine, thanks. I'm really just looking for ways to think about this 'outloud' or outside of my head. You helped.:)
 

Double_V

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I think what you might be observing is his realization that he won't be able to live through his son, a conflict of philosophy. Children are a genetic, social, and emotional investment in the future, and perhaps he's disturbed by the idea that "his" offspring is limited. There's a certain immortality factor involved in reproduction and child-rearing, and in a way a part of him is hurting/dying. This is Fi (an anchoring function) at work. Just my guess..

Thank you, and I'll do some reading on Fi.

I had very much thought the same and mentioned it before, he seemed to disregard the enire concept. He did convey that he can't fix it, and can't help to make it better.

I, on the other hand am having the problem you mentioned. And *I think* it is because he is the only kid I have who looks/acts like myself and my fathers family. And I think that is the twist, he was the only one who is like may dad, and we lost him and it's like loosing 'the same' person twice in away- and that family line may die. I think know my husband is having the same pecular thought/issue.

I have even thought maybe I should harvest/store eggs. Ludicrous!

The blood on the floor also isn't helping in that respect.[/QUOTE]

Well, this is true. Tommorrow morning I will suggest we go get the rubber flooring, and a helmet, again. And then I'll clean up the blood. It is man cave after all. I should not have to go in their space and do this for them, really.

And thanks for your help!
 

BigApplePi

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VV. Most bike riders here in NYC wear a helmet. At least 50 percent. I don't.
 

Duxwing

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Have you considered getting some family therapy? Also, don't suggest getting rubber flooring. Demand it: set a date and stick to it. If your ESTJ won't listen to reason, then sleep on the couch and give him the full silent treatment (wear a card that says "I'll start talking once we get rubber flooring just to keep that issue in his mind) until he realizes just how freaking ticked-off you are. Perhaps my method is excessive, but again, it relies on the assumption of him being utterly determined not to get rubber flooring: you wouldn't explain your wants and needs to your dog, why do it for someone who acts like one?

Sometimes, you need to be the one who puts a teaspoon of cement in their morning coffee and hardens the freak up. ISFJ doesn't like how you're treating her and won't listen to logic? If you're not at the therapist's office, then tell her to shove it. Husband being inactive on important issues that you agreed upon? Do it yourself when you have the time and tell him to shove it, too. Like you said yourself, the poker face is a necessary aspect of life. Like you didn't say, though, so is the War Face.

http://youtu.be/O6vHOR8lzTg?t=6s

-Duxwing
 

Double_V

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VV. Most bike riders here in NYC wear a helmet. At least 50 percent. I don't.

Could you go into psyche of that? Would you if you had (already) experienced multiple head injuries?

He's already had stitches to the forehead once. The under chin twice, including bone exposed. Had his teeth thru his lower lip once, and another time needed stiches under the lip. Plus a 2x broken and dislocated jaw (one event).

That's the area that doesn't usually get hit. It's usually his back (the tailbone injuries he does complain about). We've solved that with a Dainese Back Protector...

F27214460.gif


As you can see it also covers the shoulder blades, another spot that he was experiencing substantial repeat injury. This (Dainese- italian co. that makes motocross protective wear) I convinced him to wear a back plate suggesting it was no different than Ironman. And he's glad for it but it does cause alot of comments in public. One chick saw the front of it and spontaneously gave hiim a lecture on why lumbar support doesn't really work.

Today at the hospital the male (and female) nurse had an abrupt silencewhen they saw it, turned and asked "What's this?".

He also wants the piece that goes on the neck to prevent whip lash, but a helmet he is very resistant to. I don't understand that.
 

just george

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hey V, have you by any chance done a google search on the terms "gerson diet epilepsy"?

not to get your hopes up or anything, but if the therapy you're trying isnt working, it wouldnt hurt to have a go.
 

Double_V

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Have you considered getting some family therapy? Also, don't suggest getting rubber flooring. Demand it: set a date and stick to it. If your ESTJ won't listen to reason, then sleep on the couch and give him the full silent treatment (wear a card that says "I'll start talking once we get rubber flooring just to keep that issue in his mind) until he realizes just how freaking ticked-off you are. Perhaps my method is excessive, but again, it relies on the assumption of him being utterly determined not to get rubber flooring: you wouldn't explain your wants and needs to your dog, why do it for someone who acts like one?

Sometimes, you need to be the one who puts a teaspoon of cement in their morning coffee and hardens the freak up. ISFJ doesn't like how you're treating her and won't listen to logic? If you're not at the therapist's office, then tell her to shove it. Husband being inactive on important issues that you agreed upon? Do it yourself when you have the time and tell him to shove it, too. Like you said yourself, the poker face is a necessary aspect of life. Like you didn't say, though, so is the War Face.

http://youtu.be/O6vHOR8lzTg?t=6s

-Duxwing

Okay, this is another big one I'm gonna digest over night. First three thoughts.

1. Once I saw/realized the dept of unreasonablenees (word?) from my ISFJ daughterI stopped talking as it seemed in my best interest. I answered a single text with "I will only see or speak to you with therapist".

I did not hear back from her, but more or less she is quarantined. ALL of the males in my house were relieved. She'd complained endlessly to them, not me, about me.

2. Good God, when does an ENT female ever get a chance to not be pushing the teaspoon of cement? Let her hair down, her softer side show? Not at work, and not with a family, I'll tell ya that (thank god for friends, seriously)!

3. Yeah, consider family couseling. Thought a this point it was such a mess I better start with myself - I need my help :D - and then have done just that. I realize I feel alot better because I can feel (was in Enneagram 5 during neurosurgery crisis/s/s/s time and not really experiencing emotion). Now I am well enough to go 'WTF? We are all nuts!'.

Surprisngly the only one who seems 'normal' is my son with the problem. He's always been very pragmatic, and he is um, insulated. He also has some wiseness that I think comes from having a heaving burden. Great insight, understanding of others.
 

Duxwing

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Could you go into psyche of that? Would you if you had (already) experienced multiple head injuries?

He's already had stitches to the forehead once. The under chin twice, including bone exposed. Had his teeth thru his lower lip once, and another time needed stiches under the lip. Plus a 2x broken and dislocated jaw (one event).

That's the area that doesn't usually get hit. It's usually his back (the tailbone injuries he does complain about). We've solved that with a Dainese Back Protector...

F27214460.gif


As you can see it also covers the shoulder blades, another spot that he was experiencing substantial repeat injury. This (Dainese- italian co. that makes motocross protecting wear) I convinced him to wear a back plate suggesting it was no different than Ironman. And he's glad for it but it does cause alot of comments in public. One chick saw the front of it and spontaneously gave hiim a lecture on why lumbar support doesn't really work.

Today at the hospital the male (and female) nurse had an abrupt silencewhen they saw it, turned and asked "What's this?".

He also wants the piece that goes on the neck to prevent whip lash, but a helmet he is very resistant to. I don't understand that.

Can you imagine wearing a helmet for the rest of your life?

-Duxwing
 
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Have you considered getting some family therapy? Also, don't suggest getting rubber flooring. Demand it: set a date and stick to it. If your ESTJ won't listen to reason, then sleep on the couch and give him the full silent treatment

Like you said yourself, the poker face is a necessary aspect of life. Like you didn't say, though, so is the War Face.

http://youtu.be/O6vHOR8lzTg?t=6s
lol

Perhaps she'd have better luck framing it in terms of a modification that would likely lead to a better quality of life for all parties involved, and then demanding. (But the sign... It's certainly very ENTPish :D).
 

Double_V

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hey V, have you by any chance done a google search on the terms "gerson diet epilepsy"?

not to get your hopes up or anything, but if the therapy you're trying isnt working, it wouldnt hurt to have a go.

No, in fact I've never heard of it. I will.

We've been having some success with high fat diet. I'd noticed he did better the day after he had brats. The other big problem we were having was electrolytes, he kept get dehydrated (massive vomting too), which kept landing him the hospital. How much Gatorade can a person really drink.

I added a daily vitamin, an eletrolyte pill called eLites (this really worked), and he eats alot of cheese, butter, bacon, and sausage. He had immediate and serious improvment. Oh, and low carbs, NO sugar. We do Xylitol which I like, it also strengthens bones and teeth, and ya can't tell the difference from sugar at all. They also have mouth wash I buy.

Thanks JG, I will look at that tonight.
 

Double_V

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Can you imagine wearing a helmet for the rest of your life?

-Duxwing


:facepalm: No. I know but..

On a as needed, situational way... yes. Say like while walking from one building to another (on our private property where he mostly is). Or in man cave shop when not on rubber flooring. Yes! And on days when the fourth drop attack has hit by 10 a.m that either means Fuck it just stay seated in a safe spot or suit up including, especially, the head.
 

Da Blob

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People react to stress differently, with utilizations of different coping mechanisms. It is questionable that there is only one 'right' way to deal with stress.

Emotional outbursts as a means of coping, is usually not the first option, but there are situations were they are employed...

Such as events when one realizes one is utterly frustrated and feels totally helpless, except for expressions of emotion.
 
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One chick saw the front of it and spontaneously gave hiim a lecture on why lumbar support doesn't really work.

Is he basically of the philosophy that allows him to laugh off such things? I've learned that not giving a shit is a valuable life skill. This may carry over to varying degrees, but my own condition (schizoaffective disorder) is a part of me, and I can't be authentic without embracing it. This is rooted in existentialism.

Today at the hospital the male (and female) nurse had an abrupt silence when they saw it, turned and asked "What's this?".

He also wants the piece that goes on the neck to prevent whip lash, but a helmet he is very resistant to. I don't understand that.
I'm guessing a helmet would affect his self-perception?

Does he have any friends that he interacts with on a normal basis (i.e., they see past the superficial)? In my experience, this helps develop the aforementioned philosophy of laughter. (Also, see sig).
1. Once I saw/realized the dept of unreasonablenees (word?) from my ISFJ daughterI stopped talking as it seemed in my best interest. I answered a single text with "I will only see or speak to you with therapist".

I did not hear back from her, but more or less she is quarantined. ALL of the males in my house were relieved. She'd complained endlessly to them, not me, about me.
Have you introduced other family members to the MBTI? It's not perfect and some aren't as open to accepting it as others, but it could be a useful tool to highlight misunderstandings and facilitate communication.
Surprisngly the only one who seems 'normal' is my son with the problem.
Of all things, this would surprise me the least lol. :D
 

just george

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No, in fact I've never heard of it. I will.

We've been having some success with high fat diet. I'd noticed he did better the day after he had brats. The other big problem we were having was electrolytes, he kept get dehydrated (massive vomting too), which kept landing him the hospital. How much Gatorade can a person really drink.

I added a daily vitamin, an eletrolyte pill called eLites (this really worked), and he eats alot of cheese, butter, bacon, and sausage. He had immediate and serious improvment. Oh, and low carbs, NO sugar. We do Xylitol which I like, it also strengthens bones and teeth, and ya can't tell the difference from sugar at all. They also have mouth wash I buy.

Thanks JG, I will look at that tonight.
Please do. In a nutshell, Dr Gerson was a super brilliant doctor from the 1930s whose theory was that the environment that a persons food was grown in was their external metabolism - which is a fancy way to say that you really are what you eat.

He used dietary manipulation to change a persons health. His therapy has been used to treat (and cure) everything from cancer to tuberculosis to diabetes to epilepsy.

His theory holds water, medically speaking, and is fascinating. It's funny how medicine over the past two centuries has gone from "eat this root" to "drink this extract" to "swallow this pill" to "have this surgery" to "use this radiation regimen", gone full circle, and here we are again at "eat this root" :D
 

joal0503

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your husband isn't an ex high school chemistry teacher by any chance, is he?
 
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His theory holds water, medically speaking, and is fascinating. It's funny how medicine over the past two centuries has gone from "eat this root" to "drink this extract" to "swallow this pill" to "have this surgery" to "use this radiation regimen", gone full circle, and here we are again at "eat this root" :D
I'd like to see all of the above work in synergy, in terms of our holistic physiology. We're getting there: http://asdresearchinitiative.wordpr...the-human-microbiota-implications-for-autism/
 

Double_V

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Please do. In a nutshell, Dr Gerson was a super brilliant doctor from the 1930s whose theory was that the environment that a persons food was grown in was their external metabolism - which is a fancy way to say that you really are what you eat.

He used dietary manipulation to change a persons health. His therapy has been used to treat (and cure) everything from cancer to tuberculosis to diabetes to epilepsy.

His theory holds water, medically speaking, and is fascinating. It's funny how medicine over the past two centuries has gone from "eat this root" to "drink this extract" to "swallow this pill" to "have this surgery" to "use this radiation regimen", gone full circle, and here we are again at "eat this root" :D

Interesting. I just read a new study that showed epileptic kids are selnium and zinc deficient compared to non epileptic kids. Since selenium has to do with how the body cleans out (and his meds are seriously taxing those systems) I added a selenium tab to his diet. As long as it's below 1000 mcg it's safe. I went with 200, we'll see.

I was thinking of getting blood deawn to see what he's short on.
 

Double_V

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I'd like to see all of the above work in synergy, in terms of our holistic physiology. We're getting there: http://asdresearchinitiative.wordpr...the-human-microbiota-implications-for-autism/

A staggering statisic, 2 in 10 children in the US suffer from epilepsy - most commonly Absense Seizures. That number is signifigantly higher is children with autism. Schools don't even address that.

Famous childhood epileptics... Prince, Rick from Pawn Stars, and Charles Dickens.
 

Double_V

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I'm guessing a helmet would affect his self-perception?

I'll betcha that's it. I never thought of it. I only thought of it as a tool, a periodic aid, and something we could invent a version of that we liked. Something we thought cool, that we (had) made.

I actually never thought of 'buying' a helmet for anything other than to examine what was good and subpar to make a better one, for him.

I'll answer the rest tommorrow. Brain's tired.
 

ProxyAmenRa

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I did some reading up on medical marijuana a while back for sleeping troubles. Many people stated they taking it for their epilepsy. Made episodes less frequent and chilled them out. It is an idea...
 

Duxwing

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:facepalm: No. I know but..

I love poking people with the pointy stick of Logic. :D

On a as needed, situational way... yes. Say like while walking from one building to another (on our private property where he mostly is). Or in man cave shop when not on rubber flooring. Yes! And on days when the fourth drop attack has hit by 10 a.m that either means Fuck it just stay seated in a safe spot or suit up including, especially, the head.

Nevertheless, I agree with your revised statement. Helmets are helpful. I also second your idea that the helmet might affect his self-image and take it one step further: where does the buildup of safety equipment end? Your son might be wondering if you'll eventually cover him in bubble wrap or some equally jarring armor.

-Duxwing
 

joal0503

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I did some reading up on medical marijuana a while back for sleeping troubles. Many people stated they taking it for their epilepsy. Made episodes less frequent and chilled them out. It is an idea...

the typical medical response with cannabis...

"more research needed"...

well god damnt, fuck the DEA and just do the damned research.

its not necessarily going to be the THC...but CBD (Cannabidiol) lots of promising stuff there as far as an antiepileptic/anticonvulsant...and its been there for awhile...

9/14/12

http://articles.latimes.com/2012/sep/14/news/la-sn-cannabis-cbdv-epilepsy-20120914
According to the findings, reported this week in the British Journal of Pharmacology, CBDV also delayed and reduced seizures when used in conjunction with two common anti-convulsant drugs.

“There is a pressing need for better treatments for epilepsy,” said Dr. Ben Whalley, the lead researcher. “It’s a chronic condition with no cure and currently, in around one third of cases, the currently available treatments do not work, cause serious side-effects and increase fatalities.”

The study, he added, highlights “the potential for a solution based on cannabinoid science. It has shown that cannabidivarin is the most effective and best tolerated anticonvulsant plant cannabinoid investigated to date.”

The casual use of marijuana -- or cannabis -- to control seizures dates back to ancient times. Its most prominent component, THC, is among those shown in animal studies to have strong anti-convulsant properties, but its mind-altering effects have made it unsuitable for pharmaceutical development.

A number of the plant’s more than 100 cannabinoids are non-psychoactive, however. The most studied among them is cannabidiol, or CBD, which has shown promise for multiple sclerosis spacticity, nausea, epilepsy and schizophrenia. Animal studies with CBD have also shown it to be effective as a neuoroprotectant and cancer-fighting agent.

In recent years, California’s medical marijuana proponents have begun to breed plants for higher CBD content and develop customized tinctures for patients with a range of ailments. Those treatments combine high doses of CBD with smaller amounts of THC.

Yet CBD’s widely known structure and well-studied uses mean that the pharmaceutical industry has less of an opportunity to protect patents on its use and profit from any drug development, said Whalley and Raphael Mechoulam, the Israeli researcher who first identified the structure of the compound nearly half a century ago and has conducted many key CBD studies.

CBDV is a closely related chemical compound. While it was discovered in 1969, the research made public this week was the first conducted in animals, said Whalley, and only two small in vitro studies have been published, neither of them related to epilepsy.

“The commercial protection can be good even if the compound itself was identified some time ago, as long as the proposed use is novel,” he said. “The better described the ‘new use’ is, the stronger the protection.”

Medical marijuana proponents largely dismiss pharmaceutical industry efforts as too profit-driven, and say that encourages researchers to find a “magic bullet” compound rather than work with the complex benefits that the whole plant provides. Yet Whalley countered that “to make a cannabis-based medicine available and accessible to a global patient community, the only viable route is via conventional drug development, which is dictated by governmental legislation [and] regulation.”

















but i have NO idea how or IF it even relates to this specific condition of her son.
 

Double_V

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Double_V

Active Member
Local time
Today 4:41 AM
Joined
Jan 15, 2013
Messages
280
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You're an entp - you see the problem in all its complexity, put all the little pieces together and know instantly what the best course of action is with the cards that you've been dealt. So for you, all of those nuances like keeping distress out of your sons range of perception are obvious.

JG, you and I would be chatting up a storm for weeks if were ever together in RL. I think that almost everytime I see a post of yours.

The whole thing made my inner spirit feel like Tom Hanks "There's no crying in baseball!" http://www.youtube.com/watch?v=rWoD2sQ9LiU but I had no time for that. Instead I was effecient, spent the next day and a half w/o sleep to monitor my son and him went into my own down time, recovery period to decompress quietly w/o bothering anyone else.

Your husband and daughter aren't as pragmatic, can't deal with it and either dodge or melt down. It isn't their fault, since that's how they're wired and they don't have that instant appreciation of what actions are the best play for the situation (frustrating to you perhaps).

While I know this to be true, it is annoying. *I think* it's just more of how NT's and SJ's do not relate. I find it quite frustrating with them and SJ's in general. I always see something as 'what did we learn?' and 'how can we improve?'.

I absolutely hate rodundancy, especially failure. Like that bad old movie Time Machine were the guy keeps going back in time for a do over and each time his wife gets killed, again. It's like 'Can you not see that coming?!', 'Stop doing that!'.

Your son has picked up on it obviously, which is why you're the go to person for this kind of stuff rather than your husband.

Yes.

If I were in your shoes I would have a chat with your husband with the goal of imparting to and reassuring him that this is one of those things that he cant control, that is not his fault, that he shouldn't beat himself up over it (since imo that's what he's doing - he's feeling helpless and can't deal), and that when incidents happen, that he has to get into "deal with the situation with a poker face on" mode.

Yes, BUT... he can help by taking preventative steps. Matting on the floor, not placing/encouraging our son to do thinks which he is either in danger from or in harms way. Example: our son should not use a saw and I should not have to point that out. And when I do everyone should man up. Denial or reality is just prolonging the pain.

I have explained to my husband the very things you suggest plus I added that I am sure I am coping better because I was there for all the medical treatment and have armed myself with volumes of reading and information about the situation. I do feel as tho I am/have done all I can do, which I believe leaves me free of the guilt and feeling of helplessness. Plus I take every step I can as a preventative measure. Simple things like moving anything dangerous in the house to bringing him a plate so he doesn't have to walk. And even the other things like keeping track of his hydration status so we can prevent another trip to the hospital.

My husband has keyed into our sons hydration (notices lips which tell alot) but isn't coming to grips with having him in his shop... that is really dangerous.

No doubt you wont be able to resist stressing to him that showing emotion around yours son

So far he has shown no awareness the incident occured. He spent the first 24 hours looking very overwhelmed. Reminding me of a little bird, cold, perched with it's feathers fluffed trying to sleep but not really doing so. It may takes weeks for me to be able to attempt to address it. Which is fine, I like to digest things over a long period of time anyway.

And maybe he just thinks it's normal, or maybe he thinks it isn't and can;t be talked about.

is going to make your son feel guilty, which is hugely hard on him (since your son probably feels like it is his fault) since he's already dealing with the condition and ought not to have to deal with guilt too

Guilt was a major issue for the longest time with him. He frequently announced "I didn't want this" as tho it were fact that should alter reality (a/k/a Denial) and "I'm sorry". He said I'm sorry so often I really concentrated on saying back "Sorry, why? You have nothing to be sorry about. You didn't choose this". That opened the door to acceptance and non guilt. Eventually I detected he would say "I'm sorry" so he could hear the assurance 'you needn't be sorry, this is not your fault, you did nothing to cause this,'. Now he says "I'm sorry" it is courtesy gesture which states 'gee, here we are again, thanks for your help'.

- but perhaps a good thing to do given your husbands personality is to give him a problem that he CAN solve - like putting in the rubber mats and removing any obstacles that would injure your son should it happen again.

Ah, well a little progress has been made! I did leave the blood on the floor (as I said it isn't my space anyway so I generally do not intrude). The next day he did mop it, he did get a little upset, and then he put down that damn mat -which he admitted he had but just never did it! All I said was "Oh". It took all my female NT will power to not say 'You mean you actually have it, didn't' put it down like I told you a million times, and now look what happened!'. I knew it would be counter productive, so I didn't.

The mat is a baby step and I will take it. :D

Just my 2c. Good luck with an obviously uncool situation V

Thanks, JG. You know, I always value your perspective.
 
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