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Sometimes You Just Cannot Help Your Kids

 
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I feel so bad for my Oldest Child. She is in 8th Grade, a hard place to be in life anyway, and she has seizures, two types of seizures, and a lot of them.

Her Grand Maul Seizures, are pretty well controlled, but her Absent Seizures are horrific, averaging about 5-6 per minute. It is devastating for her; she is failing every grade, her teachers are frustrated, and she has no friends because she is hard to communicate with...her brain has gone into auto-mode as she is talking to them. Besides, who wants a friend who flops on the ground now and then.

We have a meeting with her teachers next week, but there is little I can see them doing. It is not like elementary where teachers have one-on-one contact with a student, there is a parade of kids and she is on autopilot 5 to 6 times a minute.

Poor kid...she tells me she is terribly lonely. It is sad when all you can do is hug them.


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Travis, I am so sorry to read this. Like I am doing for you, I will keep her in my thoughts and prayers. We don't know why God gives us such burdens; we only know He does not give us burdens we can't bare. His intentions are unknown to us, but if we have faith, we can endure. My best. Jim.

BTW...my mom who was 101 and 8 months old passed away yesterday. Please keep her in your thoughts and prayers. She had a good run, and we are happy she is no longer suffering, but it doesn't matter when in life it happens, it is never easy to lose your "mommy". Thanks.
 
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For grades self-school/homeschooling/onlineschooling, homeschool/tiny private school kids can still join sports teams and other social group in some public school districts.

For non-family social time. she could volunteer to teach elementary school kid after school/ymca/boys&girl clubs/church/girlscouts/etc

For future driving?

For future work/career?

For future partner of her own?

For future kids of her own that might develop the same or similar?

Having a kid with a single food allergy already enough for me, You are a stronger person than me.

Do the doctors nearby have medicine that would really make a difference?
What will happen if she keeps on failing school.
What if she leaves school/homeschool in a small town? Become a hermit
What if she homeschool in a big city?Have lots of non school outlets
Man I have no solutions.
 
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...I  had no idea this sort of seizure even existed.
What a heavy burden for anyone to bear.
At a glance,  it seems possible she will outgrow them,  but that doesn't help her now.
Given her age and grade I'm guessing she hasn't always suffered this affliction, so she knows what it's like for things to be different.
I know you will advocate for her with the school.
No one there should be mistreating her for this,  and no adult should be showing anything but patience, no matter what.
Just because her struggle isn't as easy to understand  as some other disabilities, doesn't make it less real.
School is terribly important, but her mental well-being is more important  still.
With all that's going in with you,  homeschooling hardly seems like an option.
I sure hope the school as a whole will commit to being as generous,patient and humane as possible.
 
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You mention your daughter being lonely. Have you considered getting her in touch with other children who have similar symptoms? Most likely this will be online, although if you're in a large enough city there may be some groups which meet in person. Having a "modern day pen pal", especially one who can understand what she goes through, may be helpful. Have you asked her what she wants to do about what she's facing, which supports she wants?

I wish you and your family all the best.
 
Travis Johnson
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We have tried encouraging to do social things, but she has no interest. She is an artist so art is her life!

Sadly we live in a very rural area so even her medical team is hours away, that means she only sees them one or twice a year. When it does, it means we have to spend the day at a hotel. This is tough for us financially.

I felt so bad for her, she is such a good kid, but the other day when we had a family meeting and explained we are going to sell our other houses due to finances, I casually mentioned being poor. She was hocked. It is almost funny because Katie and I have worked so hard at providing for the kids, and keeping them isolated from the realities of how little we have in terms of material things, that she did not even know. I guess the fact that we have pulled it off for 14 years says something! I guess no one realizes they are "poor" until someone tells you that you are.

I am going to sit down and talk with her and make sure that there are no issues with her mentally (thoughts of suicide). She is happy-go-lucky, but I need to instill in her that God only expects her to do the best she can with what she has been dealt with, and that she is loved.


 
Travis Johnson
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I just got a message from the school: she is missing from class and the school police officer is trying to find her. If she has an absent seizure during class change she will wonder off not knowing where she is going. It breaks your heart! :-(
 
pollinator
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Travis - I'm so sorry to hear this. I hope that she is found soon and well. I would seriously look into homeschooling, or independent study or something. There is no reason to subject her to regular school if it's not working for her. I homeschooled all of my kids at various points in time for different reasons. They also went to public school, did independent study and some weird hybrid for a while. I say this to convey that I don't think any one option is always best. One of my kids also had health problems. The public school was not accommodating at all. I had to get very aggressive towards them to get his needs met. I'm quite the fierce mama. He later returned to public school, but that was his choice. Best of luck.
 
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I feel for you. I've got an autistic son with sensitivity, communication, coordination, patience/temper and focus issues that I don't think will ever allow him to be a typical member of society. I worry about what his life will be like when me and my wife are gone. He's got a younger sister and we moved to the Midwest to be able to afford some land and get away from the distracting rat race. I plan on having two dwellings, one for each of them and am hoping they'll both stay here and that she can watch over him but in the end, it's going to be a choice for my daughter.

Then of course we make these plans to help our kids but we never really know if we're doing the right thing as we can't foretell the future.  
 
S Bengi
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Hoping there will be some good news soon.
Life is a struggle at times. You are doing really good, you just have alot on your plate.

I would say that your income is avg.
As for your cash flow, I am not too sure but it is probably avg
And for your net-worth, for some reason I just don't see it as being alot less than the average person in your area.

Sadly being avg means that we are all poor. Even being middle class is basically being poor.

I am glad that your kid is an artist, I think that artist are stronger than the avg Joe.


 
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Felt really bad after reading this. Will definitely pray for her. Hope she gets well soon.
 
Travis Johnson
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S Bengi wrote:I would say that your income is avg.
As for your cash flow, I am not too sure but it is probably avg
And for your net-worth, for some reason I just don't see it as being alot less than the average person in your area.



No, our income last year was $14,500...so I am pretty sure that is considered far below average for a husband, wife and four kids.. A lot of that is being farmers, but we do live in the poorest county in all of New England. As the saying goes here, "It is God's country because the devil refused to take it!"

I doubt we are average in terms of cash flow only because we have to be pretty creative to make things work.

Net worth is interesting to note though because being farmers what we do have, has a lot of long term value. The problem with that is, it only comes into usefulness when it is sold, and the value is converted into cash. Here in Maine there is a name for it, "Land rich and money poor."

This week though we did have a good meeting with the teachers though, and it seems a lot of her grades is due to missing assignments. They are working on a better plan to get them home to us, and we can assure they get done. So things are looking up.
 
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Travis,

You wrote, -----"It is sad when all you can do is hug them."

There is actually quite a lot you can do to help them. ~~But you may need to go a bit beyond what you have so far tried.

I have a friend. It has taken me some time to track him down, so I could talk to him about you. He is presently in SE Asia.

I have had occasion to spend a great deal of time with AMA doctors and surgeons. They told me I could not survive. I said to them 'thank you very much', but have at it anyway. And lots of interesting things then happened very quickly. Some many months later their emergency interventions had worked. I was still on the green side of things. ~~~But I was not the same.

Then I met Bill Ramsey. He is a holographic healer. What that means is that his approach to health and wellness includes all aspects of life. Every thing we experience, every joy, every sadness, every health and ill-health we have is found in/caused by three components. -Things we have done and experienced in our past lives can be reflected in our present life. -Things we consume and touch and surround ourselves with in this life can effect our mental, emotional and physical health in this life. -(And if I remember correctly) Things we think and feel right now effect us now. In other words. All our physical life, all our emotional life, all our spiritual life effects the life we presently live. And if you know that, and you know what to do about that, then anything can be brought around to right. -Anything.

I know that this may sound a bit different than you may usually believe, but I am telling you that what you think you know is not necessarily what is so. Bill helped me. In ways I never expected. He is a very kind person, a very straight forward person, who approaches each person he works with in a very matter of fact way, in order to really find what it is that can help them in the very best possible way for them.

Bill said he would be home (here in N. Ohio) in mid-March. For now he said his phone does not currently work where he is, but he can receive emails. He told me you can contact him if you wish. I know he can help your family. You will simply have to trust me in this (when of course you have nothing on which to base trust in me), but I am telling you I have seen him do things for me and for other people that are incredible. What he can do for you, you'll just have to write and see. Tell him more about your daughter's situation than I told him, and he can tell you of possibilities. If you don't like what he suggests, don't tell your daughter, and it ends. But, maybe the whole point of my writing to you is that it is the thing you can do that is more than just "hug". If you wish, let me know, and I will PM you his email address. Jim Fry  Stone Garden Farm  Richfield, Ohio
 
steward
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Travis, I'm so sorry for your daughter. As a teenager, I, too developed epilepsy. Thankfully, mine was much less severe (I only had them when half-awake lying in bed. They were grad mal type seizures, but at least I was safe in bed. I did, however, feel and remember them. They were excruciating). Even thought the doctors never figured out what caused mine, the medication did stop them, and I was able to be weaned off of them in time for me to learn to drive.

If you're daughter is introverted and not interested in friends, that's not necessarily a "bad" thing. I was very introverted in Jr High and High School. I had friends, but never hung out with them outside of school (I hung out twice during my entire high school time). I never went to dances or events, and I really feel no lack.

I remember once reading a mother bemoaning the thought that her aspsergers son would "never be in sports or go to prom"...As someone who never cared about those things, I don't see why that mother was worried--those things aren't essential, and if the kid doesn't care about them, there's really no lack. If your daughter is happy without social interaction aside from her family, I wouldn't be worried that she's necessarily depressed due to it.

For me, more than having social time in school, it was more important to not be picked on. I think ensuring that she's NOT getting picked on is the most important thing. I would talk to her teachers if there is bullying going on. And, if the bullying is severe, I would probably homeschool if possible.

Another thing you might look into--if your daughter's doctors haven't suggested it already--is a strict ketogenic diet. I know there have been clinical studies done as to it's effectiveness in treating forms of epilepsy that aren't treatable by other means.

Of course, a ketogentic diet is probably a bit more expensive than your current grocery bill (my husband can't eat grains and sugars due to his Crohn's, and our grocery bill is HIGH). But, maybe just try focusing more on healthy fats and proteins, and less carbohydrates and see if maybe that helps. Though, from what I recall, those who are in ketosis for controlling seizures, have a very strict diet and do not stray from it, so as to continue controlling the epilepsy.
 
pollinator
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Please consider home education for your child.  
 
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Hoping she gets better - kids should not have to suffer ailments with all our science and medicine. I'm not into cannabis at all but have you tried CBD?
 
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Jim Fry wrote:Travis,

You wrote, -----"It is sad when all you can do is hug them."

There is actually quite a lot you can do to help them. ~~But you may need to go a bit beyond what you have so far tried.

I have a friend. It has taken me some time to track him down, so I could talk to him about you. He is presently in SE Asia.

I have had occasion to spend a great deal of time with AMA doctors and surgeons. They told me I could not survive. I said to them 'thank you very much', but have at it anyway. And lots of interesting things then happened very quickly. Some many months later their emergency interventions had worked. I was still on the green side of things. ~~~But I was not the same.

Then I met Bill Ramsey. He is a holographic healer. What that means is that his approach to health and wellness includes all aspects of life. Every thing we experience, every joy, every sadness, every health and ill-health we have is found in/caused by three components. -Things we have done and experienced in our past lives can be reflected in our present life. -Things we consume and touch and surround ourselves with in this life can effect our mental, emotional and physical health in this life. -(And if I remember correctly) Things we think and feel right now effect us now. In other words. All our physical life, all our emotional life, all our spiritual life effects the life we presently live. And if you know that, and you know what to do about that, then anything can be brought around to right. -Anything.

I know that this may sound a bit different than you may usually believe, but I am telling you that what you think you know is not necessarily what is so. Bill helped me. In ways I never expected. He is a very kind person, a very straight forward person, who approaches each person he works with in a very matter of fact way, in order to really find what it is that can help them in the very best possible way for them.

Bill said he would be home (here in N. Ohio) in mid-March. For now he said his phone does not currently work where he is, but he can receive emails. He told me you can contact him if you wish. I know he can help your family. You will simply have to trust me in this (when of course you have nothing on which to base trust in me), but I am telling you I have seen him do things for me and for other people that are incredible. What he can do for you, you'll just have to write and see. Tell him more about your daughter's situation than I told him, and he can tell you of possibilities. If you don't like what he suggests, don't tell your daughter, and it ends. But, maybe the whole point of my writing to you is that it is the thing you can do that is more than just "hug". If you wish, let me know, and I will PM you his email address. Jim Fry  Stone Garden Farm  Richfield, Ohio



Jim, while I have no idea about the specifics you described, I wholeheartedly agree with your general approach of moving outside the boundaries of the collective medical orthodoxy which has embedded itself into the culture. My wife is happy and healthy today because she did.
 
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T.J. Stu wrote:Please consider home education for your child.  



I agree. Money isn't all that. Having resources, is.

Been watching "intentional communities" recently and was surprised what a rich life some of them live, and what their income is. 14500 is near to what I earn by the way and I have 3 children. My children (3,4,5) are as happy as they can be (separated parents, not my choice)

This is your quote:"Besides, who wants a friend who flops on the ground now and then."

The answer is: LOTS. There are childen out there who have been taught that seizures are not flopping around, but are a medical condition that enacts itself without the choice of the host. Your job is to simply find those people and intentionally connect, for the sake of your lovely daughter. You may make some friends too.

A hint in the right direction are other home schooled children and depending on the slant, I find that certain Christian children are just amazing friends. I've had really good experiences with the Mennonite folk (really solid and reliable people who generally favour the farm lifestyle) and I was never pressured to "be like them". I dont go to church, dont preach, dont do a lot of things but have found that despite some perceived differences, there are still good people around who make the kind of friends you wished for as a child yourself.

Good luck, you sound emotionally frazzled and who wouldnt be, considering giving up their home?

 
Lito George
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Nicole Alderman wrote: And, if the bullying is severe, I would probably homeschool if possible.

Another thing you might look into--if your daughter's doctors haven't suggested it already--is a strict ketogenic diet. I know there have been clinical studies done as to it's effectiveness in treating forms of epilepsy that aren't treatable by other means.

Of course, a ketogentic diet is probably a bit more expensive than your current grocery bill (my husband can't eat grains and sugars due to his Crohn's, and our grocery bill is HIGH). But, maybe just try focusing more on healthy fats and proteins, and less carbohydrates and see if maybe that helps. Though, from what I recall, those who are in ketosis for controlling seizures, have a very strict diet and do not stray from it, so as to continue controlling the epilepsy.



Excellent advice  here.

Being in ketosis fixes a ton of ailments - verifiably so. And if you have access to good quality meat in the countryside (grass fed cows), its WAY cheaper than trying to do this stuff in a city. My own health bears the witness of "garbage in, garbage out" - with your body, not your mind - being the decider.
 
Greg Mamishian
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pusang halaw wrote:Hoping she gets better - kids should not have to suffer ailments with all our science and medicine. I'm not into cannabis at all but have you tried CBD?



I know you want to help and your suggestion may even effectively treat a symptom, but it is still within the narcoculture orthodoxy which affirms the belief that any problem can be solved if a person can just find the right chemical to put inside of their body. In my opinion, the flaw in this approach is that symptoms have become mistaken for causes.
 
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On a slightly related note to that Greg, I think it is worth looking at spruious correlations, which is a wonderful example of how correlation probably does not imply causation.
 
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You're already doing the most important thing there is, Travis, and that's loving your child. All else flows from there.

I have known some people that live with epilepsy, and some reported great benefits to companion animals, specifically canines. Some are trained to notice when Absent seizures occur, and deliberately draw and focus the attention of the child; I know of larger dogs trained to act as physical buffers to objects, and to cushion against falls, in the event of Grand Mal seizures.

I also know that it doesn't work for everyone. But if a giant, furry, happy protector could be assigned to her as a companion dog, she might not feel as lonely all the time, and it might serve as a pathway for friends to find her. And at least she'd have one constant companion.

I am a proponent of cannabis, but for this, especially because it is for your child, I would suggest finding a doctor who prescribes cannabis-based medication. Again, I have heard that these things work better for some than others, and in the circumstance of a child, a clinical approach, even if the remedy/medication is herbally-based, is crucial.

You, your wife, and your daughter are the best ones to decide if continuing on with standard public schooling is a good idea, or if some hybrid, or a full-on homeschooling would be better. You already know the most important things to consider.

Good luck, Travis. Keep us posted, and until you find something else that helps, just keep hugging your daughter. It's frustrating to feel that it's all you can do, but it's amazing what it accomplishes.

-CK
 
Chris Kott
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Greg Mamishian wrote:

pusang halaw wrote:Hoping she gets better - kids should not have to suffer ailments with all our science and medicine. I'm not into cannabis at all but have you tried CBD?



I know you want to help and your suggestion may even effectively treat a symptom, but it is still within the narcoculture orthodoxy which affirms the belief that any problem can be solved if a person can just find the right chemical to put inside of their body. In my opinion, the flaw in this approach is that symptoms have become mistaken for causes.



If I am all congested at night because of seasonal allergies, I will take a decongestant.

I will also be sure to pick up some local raw honey, and have a teaspoon of that each day, in the hopes that it will introduce my immune system to those allergens, such that I don't react in such a way to pollens and environmental allergens.

But I will still take a decongestant to clear up the symptoms. If I don't, I won't be able to sleep, which negatively affects my body's ability to recover.

I don't think it's valid to assume that everyone looks at disease the way you describe, Greg. I think that the "narcoculture orthodoxy" exists within the minds of pharmaceutical executives and very specialist doctors, but I would suggest it's not malice or stupidity, but rather the mental blindspots imposed by specialisation in any given field. If you are a hammer, all problems look like nails.

I think it would be nice to concentrate on what positive steps could be taken to improve a young girl's life, rather than to constantly resurrect and pulverise this deceased equine.

-CK
 
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Travis, I hope things are getting easier.
I had a daughter with severe epilepsy back when I lived in the US. She was only with us for 5 years, and had a slew of grave medical problems besides seizure disorder. We lived in southern New England and had a seizure dog prescribed by our neurologist. In your daughter`s case the dog might be able to help her with balance and not forgetting where she is, giving you one less thing to be worrying about and also giving her a friend who will never talk smack or make her feel bad about herself. We worked with New England Assistance Dogs (NEADS) in Mass, who were absolutely amazing, but I am not sure if they still do seizure dogs. There are other places here if you`re interested. https://assistancedogsinternational.org/location/massachusetts/
There is also assistance available from the Epilepsy Foundation https://epilepsynewengland.org/programs/resource-and-support-center/financial-aid . Another thing we did, even though my daughter was not "terminal" in the usual sense, was to get involved with our local Make-A-Wish foundation, and we were immediately drawn into the local community of people with medically involved kids (and parents). I know you live in a remote place but you might find something useful.
I wish you both a lot of strength and peace.
 
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Greg Mamishian wrote:I know you want to help and your suggestion may even effectively treat a symptom, but it is still within the narcoculture orthodoxy which affirms the belief that any problem can be solved if a person can just find the right chemical to put inside of their body. In my opinion, the flaw in this approach is that symptoms have become mistaken for causes.

regardless. i can't bear to see young people suffer. there's lots of wicked people in good health and fate is too cruel when innocent kids are afflicted by poor health, ailments and disease. this is a screwed-up universe we live in.
 
Greg Mamishian
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Chris Kott wrote:I don't think it's valid to assume that everyone looks at disease the way you describe, Greg.



I'd never suggest that everyone does anything. (lol)


I think that the "narcoculture orthodoxy" exists within the minds of pharmaceutical executives and very specialist doctors, but I would suggest it's not malice or stupidity, but rather the mental blindspots imposed by specialisation in any given field. If you are a hammer, all problems look like nails.



Contemporary popular narcoculture is based upon the belief that human life consists of chemical reactions and nothing else. So the solution to a problem lies is in finding just the right chemical. I totally agree that it is not malice or stupidity of pharmaceutical execs or doctors. They are only doing their best to give folks what they demand. People cry out for chemical solutions. The pharmaceutical industry exists as a response to that cry. And they provide a truly sophisticated buffet of chemical compensations for symptoms.

I think it would be nice to concentrate on what positive steps could be taken to improve a young girl's life...



I totally agree with this part of what you said, and suggest those positive steps are found elsewhere... outside cultural orthodoxy.
 
Chris Kott
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Your analysis, Greg, misses the whole biological sphere of pharmaceuticals. Penicillin is a medication developed from biological processes, one of many obvious examples of such. They are certainly part of the Western approach to the larger issue of disease and prevention.

I think people like to get riled up, and I think that it's easier if they have a single name to call their evil. Further, I think that the bigger and fancier the terms used, the more satisfying it is to use it to bash reason and data out of the way.

Narcoculture orthodoxy is less of a problem, I think, than dogmatic contrarianism.

And ignoring symptoms because you don't think they have anything to do with the cause doesn't help the little girl in question live any better. Should we be looking for root causes in situations like this? Of course. Should we insist that people who are symptomatic suffer because the treatment only relieves symptoms, allowing said girl to live normally, rather than curing her outright? Why does this question even need to be asked?

Back to the issue at hand.

I think one appropriate prescription would be for a puppy. Personally, I would get a Newfoundland dog, like from Peter Pan, especially if you have a pond. Also especially sensitive to mood, and incredibly intelligent, are Australian Shepherds.

I would suggest going to a pound or shelter, but a companion dog for this specific purpose probably needs specific training, and unless you bring them a puppy for training, you will be limited to whatever selection the training facility offers.

Travis, I hope you and your daughter find effective and easy ways to help her live her best life. We're all pulling for you.

-CK
 
pusang halaw
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Chris Kott wrote:Narcoculture orthodoxy is less of a problem, I think, than dogmatic contrarianism.

Exactly! when a child is suffering, orthodoxies and philosophical approaches and perspectives go straight out the window.

Travis, I hope you and your daughter find effective and easy ways to help her live her best life. We're all pulling for you. -CK

Yes, We ALL are.
 
gardener
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That is so rough. My heart goes out to you and your daughter.

I had a friend growing up who had seizures. My mom is a nurse and told me some stuff about what was going on and how to help/get help. Once I had some understanding and helpful tasks to perform my friend’s seizures went from a scary and alienating experience to one that, although I still felt bad for my friend and worried for her, also actually made me feel useful and smart, because I knew how to help. I am sure the adults all found me ridiculously self-important about the whole thing. But kids love to feel useful and smart and efficacious. So if your daughter does end up with any budding friendships in time, giving those friends some knowledge and responsibility to help with her condition might turn them into loyal and protective advocates for your daughter, if you get lucky.

Edited to add: I had an Australian Shepherd therapist...I mean puppy...growing up and he worked wonders. I was an only child living rurally, so that dog got to hear all my problems and plans and rants about my parents and got roped into more than a few dress up games to boot. Crying into the neck of an understanding Australian Shepherd is not to be underestimated.
 
Jennifer Richardson
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Another thought on the puppy...I met a woman last year who had seizures due to a brain injury during her military service overseas. She had an Australian Shepherd service dog which warned her when it sensed a seizure coming on, so she could prepare. I saw it in action a few times.  It was amazing. The dog also helped her manage her stress and PTSD symptoms. I know you are on seriously restricted income, but maybe there are programs or grants or stuff for service animals? I know it can be frustrating to have people pushing particular solutions if they are not feasible for you, but I did want to mention it as it was such an amazing thing to see.
 
Greg Mamishian
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Chris Kott wrote:I think people like to get riled up, and I think that it's easier if they have a single name to call their evil.



I agree with you here, which is why I don't regard the pharmaceutical industry as being "evil". That's why I'm not riled up. They're just normal people like you and me who work very hard to supply their customers with the chemicals they feel they need. The system is completely consumer driven. In my opinion this is perfectly fair because people are completely exposed to the consequences of their own free choices.

Further, I think that the bigger and fancier the terms used, the more satisfying it is to use it to bash reason and data out of the way.



Have you seen the made up names of drugs?

Incivek, Adcetris, Yervoy (a Jewish drug), Viibryd, Zytiga, Xgeva, Celecoxib, Linezolid, Anakinra (named after a Russian princess), Cisplatin, Domperidone (one dose and your done for), Idebenone, Moxifloxacin (made from real  moccasins), Pancuronium (cures everything),  Phensuximide (this one sucks) Vinblastine (get plastered on wine), Warfarin (wages war on disease), and Xylometazoline (derived from musical instruments hit with little mallots).

I won't even get started on the long lists of side effects. They're worse than what they're supposed to be treating.

Narcoculture orthodoxy is less of a problem, I think, than dogmatic contrarianism.

And ignoring symptoms because you don't think they have anything to do with the cause doesn't help the little girl in question live any better. Should we be looking for root causes in situations like this? Of course. Should we insist that people who are symptomatic suffer because the treatment only relieves symptoms, allowing said girl to live normally, rather than curing her outright? Why does this question even need to be asked?



I sure didn't ask it! (lol) In fact if you notice I'm not even arguing with you. Treating symptoms is totally fine as long as folks are aware that's all they're doing so that they don't get angry from holding unrealistic expectations which lead them to suing doctors because they believe they didn't give them the right chemicals. One reason healthcare costs an arm and a leg is because it requires a whole lot of money to protect doctors from their angry patients' unrealistic expectations.

Instead of arguing I'm suggesting something more constructive... the idea that there is something else which is to be found outside the chemical orthodoxy of the narcoculture.


 
pollinator
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Hi Travis,
I've read the other comments about service dogs, and I have to agree, that a dog, tuned in to your daughter might be the best "medical device" you could have for her. They can sense seizures before they happen, help alert adults, provide constant companionship, and protect the child from inflicting harm on their bodies. I really recommend that you contact the Service dog project (https://www.servicedogproject.org/what-we-do) they match dogs to the person, and I believe the dog is free to the new owner. They specialize in dogs for people with mobility issues, but have matched them to recipients that had disabilities from PTSD to palsy. And with their organization, if the original dog would pass due to age, they will match with a new dog when the time comes, they use Danes for their ability to brace and support a human, but their life expectancy isn't the longest. Best of luck to your daughter and your family as a whole!
 
pollinator
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My brother had childhood epilepsy and it was rough. Some of my earliest memories are of him suddenly shutting down and tumbling down a too-tall hill, and sitting for what felt like hours in a hospital while his blood was taken for tests. He was really lucky that his epilepsy didn't continue into adolescence.

Whether she is accepted or not by her peers, I think will depend a lot on the peers that she has. I hope she knows that even if she doesn't have a lot of friends right now, that's not permanent and not a reflection on her as a person. Small-minded people will discriminate for all kinds of reasons, and there are places that have an unfortunate concentration of small-minded people.
 
master steward
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Grades 6 to 9 can be really pushy in the direction of "conformity". My younger son is dyslexic so I put him into distance education for that period and have no regrets. I also put him into a number of "mental gymnastics for kids" type programs. He's still dyslexic, but he started getting high "B's" and "A's" instead of "C's" and "D's" because he and his brain learned better coping mechanisms. When he re-integrated part-time into the local high school, he maintained his marks and gradually developed a group of friends that he's maintained contact with for over 5 years now.

I really don't know much about epilepsy or the underlying brain morphology, but the one program my son did which helps to develop and mature the nervous system was developed by this organization: https://www.inpp.org.uk/intervention-adults-children/more-information/reflexes/
It involved *very* simple exercises done with an adult who'd been instructed on how to supervise them, and then he was checked periodically by the fellow who'd gone to England to get the training and some exercises were stopped and others introduced. The research was quite supportive of this for learning disabilities, but I have no idea if it would help with the Absent Seizures.

Good luck whatever path you follow - or paths, as sometimes it takes many to reach your goal!
 
steward
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This is just a reminder that discussion of cannabis is restricted to the Cider Press.  

https://permies.com/t/16701/hemp-cannabis-marijuana-weed-grass

For those of you with enough apples to post in the cider press, you are welcome to continue the topic there.

 
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