Autism & Epilepsy & General Epilepsy Experiences

[AlohaBird]

Oh, MAB, that's horrible. Has anybody tried a couple of spoonfuls of coconut oil? Not saying it's a miracle cure for all human ailments but it is a well documented natural laxative. And it's soothing to the insides as opposed to the irritation that can be caused by all the chemicals that have been pushed into that poor kid.

 

[MAB]

Oh, MAB, that's horrible. Has anybody tried a couple of spoonfuls of coconut oil? Not saying it's a miracle cure for all human ailments but it is a well documented natural laxative. And it's soothing to the insides as opposed to the irritation that can be caused by all the chemicals that have been pushed into that poor kid.

No they haven't tried coconut oil. There is no way they would be able to get him to take it.

He is only 5 but extremely strong, and is very pick abut what goes near his mouth.

 

[AlohaBird]

If you warm it up to 76 degrees F, it is a liquid that could then be administered by eyedropper.

It could also be mixed with something tasty (his definition of tasty of course). Chocolate syrup, peanut butter, or whatever.

 

[Blonde Angel]

I posted back on the 16th that my GS had a contrast enema on the 16th. He had another xray today and much of the contrast is still in him. He is so constipated I want to cry, poor kid is miserable. Now they have to start daily suppositories for 2 weeks.

If your GS likes to drink juice ( I use a juicer to juice oranges) eg orange then a product that has Vitamin C with the Hesperidin Complex powder can be added to the juice.
Its not only an antioxidant, but under the guidance of a health practitioner the dose can provided to promote a gentle laxative effect.

The reason I'm aware of this is because one of my twin boys can get constipated easily I use this as its more gentle than addictive laxatives.

 

[Blonde Angel]

Well my girl returned to school on Monday no cough and happy in the morning.
At 2.45pm just before school finished with no warning she had a 2 and half minute Grand Mal . She usually does the carers dog walking after school, she had to come back home to recover and sleep.
Very frustrating all through last week she was unwell with the cough and no seizures, you would think that would be a trigger.

I still cant see why what how ..... have noticed some same time frames in seizure activity but not always consistent. Its also hard not knowing how she is feeling exactly I don't get the luxury of feedback.
Have to keep documenting and recording stuff in stuff..

 

[MAB]

Thanks, Blonde Angel. Orion has such a limited diet. The only juice he will drink is apple juice and even then, only 1 particular brand.

His diet is limited to homemade chicken nuggets, graham crackers and bananas. We try to limit the bananas. He is getting thinner everyday.

OT, I just read an interesting article on autism and anandamide. I had never heard of anandamide until tonight.

http://www.medicaldaily.com/marijua...-pleasurable-social-interactions-could-359170

 

[MAB]

Well my girl returned to school on Monday no cough and happy in the morning.
At 2.45pm just before school finished with no warning she had a 2 and half minute Grand Mal . She usually does the carers dog walking after school, she had to come back home to recover and sleep.
Very frustrating all through last week she was unwell with the cough and no seizures, you would think that would be a trigger.

I still cant see why what how ..... have noticed some same time frames in seizure activity but not always consistent. Its also hard not knowing how she is feeling exactly I don't get the luxury of feedback.
Have to keep documenting and recording stuff in stuff..

I'm sorry about your daughter. It is extremely frustrating when there is little to no communication, frustrating on both sides.

Thankfully Orion doesn't have seizures that we are aware of. A couple times his parents thought he might be having absent seizures. If he had SPs we would probably never know.

 

[Blonde Angel]

I'm sorry about your daughter. It is extremely frustrating when there is little to no communication, frustrating on both sides.

Thankfully Orion doesn't have seizures that we are aware of. A couple times his parents thought he might be having absent seizures. If he had SPs we would probably never know.

Yes
its frustrating and its something I detest so much but I cant stew over it otherwise I get a damn headache.onder:

 

[Blonde Angel]

Thanks, Blonde Angel. Orion has such a limited diet. The only juice he will drink is apple juice and even then, only 1 particular brand.

His diet is limited to homemade chicken nuggets, graham crackers and bananas. We try to limit the bananas. He is getting thinner everyday.

OT, I just read an interesting article on autism and anandamide. I had never heard of anandamide until tonight.

http://www.medicaldaily.com/marijua...-pleasurable-social-interactions-could-359170

I understand therapy costs $$$$ but it may be worthwhile investment in employing an experienced behaviour therapist to work on broadening the diet for your GS.

 

[ilexa margareta]

I don't have children, but, I'm a young adult autistic and epileptic. I have come to believe that the two may be so commonly comorbid that it may be worth linking them in the ICD/DSM. Take, for example, Dostoyevsky, who is said to have been an epileptic (and, I believe, from his very accurate descriptions of ecstatic episodes and post-ictal psychosis in The Idiot, that he was): his writing in The Brothers Karamazov has a most definite autistic quality to it. To riff on Dostoyevsky, if you wouldn't mind, it's almost a certainty that Myshkin is autistic.

Another famous example: Ian Curtis. The line, "and you feel you can touch all the noises too much", from Leaders of Men, describes the autistic experience very accurately. "She expressed herself in many different ways before she lost control again" could be a simple description of an ecstatic episode/pre-ictal mania; or, was Curtis describing a meltdown that fed into a seizure, as has happened to me multiple times? Then there is the entirety of the song, "The Eternal".

I believed thus far that there was a particular "epileptic personality" that Dostoyevsky, the fictional Myshkin, Curtis, and I shared. However, after reading this thread, I'm forming a certainty that epilepsy and some extent of autism are inextricably linked.

MAB, have you heard of ARFID? "Avoidant/Restrictive Food Intake Disorder". It's a diagnosis only added to the DSM and ICD (indeed, perhaps not yet to the ICD) last year. It's a diagnosis that I wish had existed when I was young - I had what would be considered a severe form, at one point eating nothing but boiled spinach for two months, how I survived that one I do not know - but, rather than seeing a therapist or psychiatrist, I was constantly smacked, shouted at, threatened, and punished at school. Gone untreated, it can develop into other eating disorders - I was diagnosed with anorexia nervosa at 14, and spent my 15th to 16th year in residential treatment. I've recovered from that, mostly because my medication makes it almost impossible to restrict my eating, but still have very slight ARFID traits.

 

[MichaelJO7]

I'm happy to say that my girl and I are liking the brown rice, but my boys and hubs don't. Arrrrggggh I will have to give and take at times in the cooking.

Brown rice takes some getting use to. It has been a staple in my diet for a few years now, and it is one of the few things that does not upset my stomach. I have tried a number of different "ancient" grains, but keep coming back to brown rice. I use brown rice pasta as well.

 

[MichaelJO7]

I thought I would mention that different languages are stored in different parts of the brain, with the mother language normally indicating the most activity when used.

ASL (American Sign Language) also engages the occipital lobe, which may help if that part of the brain is functioning properly. I have considerable difficulty with abstract thought sometimes, and have to find a way to bridge the gap between the familiar and the abstract. Until I find the bridge, things just don't register. More senses engaged seems to help, provided that the sensory data is properly stored and accessed. However, the other sensory data needs to be regulated (limited and controlled) for me to prevent information overload since I am quite slow at processing new information unless there is a concrete bridge.

Breakthroughs in individuals with autism sometimes occur when we discover the part of the brain of autistic kids that is working property and are able to bridge our reality with their reality in a way they can understand. That is the hard part though.

I can remember a story (60 Minutes maybe) where the turning point was when the parents realized that if they tied everything to Disney movies (which their autistic son had watched endless times), their son made significant progress. They found the bridge between their world and his.

 

[ilexa margareta]

Funny you should talk about ASL, Michael - I just finished a fascinating book by the late Oliver Sacks called Seeing Voices, about profound deafness. In the book, he mentions that certain students at schools for the deaf couldn't pick up any ASL at all, and remained functionally disabled. If it's the occipital lobe that processes such things, then occipital lobe issues may well have been the problem with the children Sacks discusses. I myself have occipital lobe epilepsy, and struggle with patterns - a lot of ASL is rooted in patterns of movement.

 

[Zoe]

Eye Surgery +Digestive Issues and Miralax

Here is a very important article about Miralax, it's safety for children and adults. It's especially important because it apparently can affect children's behavior. The links didn't load so please read the full article online to get related links. I hope all of you are doing well. I hope to be online more after the surgery.


By Ricki Morell

If you, like millions of parents, routinely give your child Miralax for constipation, recent reports that the Food and Drug Administration is studying a possible link between the common laxative and neuropsychiatric problems probably sounded scary.

After years of complaints from activists, two Children’s Hospital of Philadelphia researchers are now leading an FDA study of the ingredient — polyethylene glycol 3350, or PEG 3350 — to see how it affects children.

“We’re pleased that they’re going to be looking at behavior changes because that’s never been done before,” said Carol Chittenden, co-director of The Empire State Consumer Project, a nonprofit consumer group in Rochester, New York, that pushed the FDA to embark on the study. “Parents are feeling anxious but also validated because they’ve been telling their doctors for years about these symptoms.”

Just because the FDA is doing a study, doesn’t make it dangerous.

– Dr. Samuel Nurko
Miralax is sold over the counter as an adult laxative, but pediatricians and gastroenterologists routinely prescribe it to infants, toddlers and older children. And they often prescribe it for long-term daily use for chronic constipation, even though the label says it should be used for no more than seven days “unless advised by your doctor.”


Full article: http://commonhealth.wbur.org/2015/01/miralax-dilemma-parents-safe

 

[Blonde Angel]

I don't have children, but, I'm a young adult autistic and epileptic. I have come to believe that the two may be so commonly comorbid that it may be worth linking them in the ICD/DSM. Take, for example, Dostoyevsky, who is said to have been an epileptic (and, I believe, from his very accurate descriptions of ecstatic episodes and post-ictal psychosis in The Idiot, that he was): his writing in The Brothers Karamazov has a most definite autistic quality to it. To riff on Dostoyevsky, if you wouldn't mind, it's almost a certainty that Myshkin is autistic.

Another famous example: Ian Curtis. The line, "and you feel you can touch all the noises too much", from Leaders of Men, describes the autistic experience very accurately. "She expressed herself in many different ways before she lost control again" could be a simple description of an ecstatic episode/pre-ictal mania; or, was Curtis describing a meltdown that fed into a seizure, as has happened to me multiple times? Then there is the entirety of the song, "The Eternal".

I believed thus far that there was a particular "epileptic personality" that Dostoyevsky, the fictional Myshkin, Curtis, and I shared. However, after reading this thread, I'm forming a certainty that epilepsy and some extent of autism are inextricably linked.

MAB, have you heard of ARFID? "Avoidant/Restrictive Food Intake Disorder". It's a diagnosis only added to the DSM and ICD (indeed, perhaps not yet to the ICD) last year. It's a diagnosis that I wish had existed when I was young - I had what would be considered a severe form, at one point eating nothing but boiled spinach for two months, how I survived that one I do not know - but, rather than seeing a therapist or psychiatrist, I was constantly smacked, shouted at, threatened, and punished at school. Gone untreated, it can develop into other eating disorders - I was diagnosed with anorexia nervosa at 14, and spent my 15th to 16th year in residential treatment. I've recovered from that, mostly because my medication makes it almost impossible to restrict my eating, but still have very slight ARFID traits.

I am so pleased to read of your feedback and please do contribute what do you wish to this thread.
I too, do believe there is correlations between epilepsy and the Autism spectrum some of those Autism traits do also have the Obsessive Compulsive Disorder characteristics. Also have a good look into the gut stuff.

 

[Blonde Angel]

Funny you should talk about ASL, Michael - I just finished a fascinating book by the late Oliver Sacks called Seeing Voices, about profound deafness. In the book, he mentions that certain students at schools for the deaf couldn't pick up any ASL at all, and remained functionally disabled. If it's the occipital lobe that processes such things, then occipital lobe issues may well have been the problem with the children Sacks discusses. I myself have occipital lobe epilepsy, and struggle with patterns - a lot of ASL is rooted in patterns of movement.

Many of the students that my girl attends with have various disabilities some have impaired hearing and vision. Its not just the Autism and genetic conditions and Cerebral Palsy.
Language refers to words, signs and other symbols we use to stand for meanings.
Communication however, refers to sending and recieiving messages between 2 or more persons so its interactive. These messages do not have to be owrds: they can be any action or sound, body language etc, that effectively conveys a meaning. Long before a child learns to talk, he/she will communicate in many ways with various behaviours he/she can do.

The challenge with Autism and other challenging conditions is that they are NOT by and large living in the majority that is about thought and language.
Rather they live by sensation and actions. They DO NOT begin to connect with people by talking. However they CAN connect with their many possible behaviours, such as sounds, motions, expressions, touches and postures. The school, parents/ carers try to help the kids with special needs to assist building a communicative habit- with frequent, fun social play and turn taking with out many words. The need is to develop MOTIVIATING AND FUN RELATIONSHIPS by joining in what the child likes to do and can do.
Communication is an ongoing priority and there is various strategies used to improve the communication abilities of the kids.
The main emphasis is improving their expressive communication, so they can get their message across to others and enable them to engage productively with others.

 

[ilexa margareta]

Many of the students that my girl attends with have various disabilities some have impaired hearing and vision. Its not just the Autism and genetic conditions and Cerebral Palsy.
Language refers to words, signs and other symbols we use to stand for meanings.
Communication however, refers to sending and recieiving messages between 2 or more persons so its interactive. These messages do not have to be owrds: they can be any action or sound, body language etc, that effectively conveys a meaning. Long before a child learns to talk, he/she will communicate in many ways with various behaviours he/she can do.

The challenge with Autism and other challenging conditions is that they are NOT by and large living in the majority that is about thought and language.
Rather they live by sensation and actions. They DO NOT begin to connect with people by talking. However they CAN connect with their many possible behaviours, such as sounds, motions, expressions, touches and postures. The school, parents/ carers try to help the kids with special needs to assist building a communicative habit- with frequent, fun social play and turn taking with out many words. The need is to develop MOTIVIATING AND FUN RELATIONSHIPS by joining in what the child likes to do and can do.
Communication is an ongoing priority and there is various strategies used to improve the communication abilities of the kids.
The main emphasis is improving their expressive communication, so they can get their message across to others and enable them to engage productively with others.

Very, very true. You've nailed the trouble I've been having recently. I've recently changed mood stabilisers, and I'm still on a sub-therapeutic dose of the new one. Because of that shake-up, my Asperger's (yes, I know that that's a deprecated term, but I find "autism" insulting - look up the etymology) has been worsening, and I find myself increasingly unable to communicate with anybody but fellow Asperger's sufferers. My father in particular has become unbearable. You know how most people, when they're trying to explain something possibly worrisome or problematic, talk very slowly and softly, and give the subject a long preamble? That causes no end of tension and anxiety for me. Twice today my father has had talks with me in that manner, and finally I had to try to explain that I need him to talk quickly, directly, and explicitly to get the matter over with - I used the metaphor of pulling off a plaster. He insisted that, if he talked slowly, things would stick in my memory more (I have a dreadful memory). I tried to explain again, and he kept interrupting. Eventually I told him that I needed silence for a while, and he took offence. He's been to several seminars and classes about caring for Asperger's people, yet he still doesn't twig a thing. I desperately need to move out and move in with my boyfriend - the only person I've ever known and ever will know who understands me.

 

[ilexa margareta]

I am so pleased to read of your feedback and please do contribute what do you wish to this thread.
I too, do believe there is correlations between epilepsy and the Autism spectrum some of those Autism traits do also have the Obsessive Compulsive Disorder characteristics. Also have a good look into the gut stuff.

Funny you should mention gut trouble and OCD - I have some OCD traits, such as near-pathological superstitions, personifying inanimate objects (at one point when I was 14-ish the space underneath my bed was packed out with empty alcohol cans and bottles because I didn't want to "harm" them by throwing them out), and an obsession with numerology coupled with slight dyscalculia (though I believe the dyscalculia may be antipsychotic or benzo-related, or perhaps brain damage from seizures, as I was very good with maths as a child). As for gut trouble, I have chronic stomach aches. Since becoming a vegetarian it has cleared up a little - I think my ARFID tendency to eat leaves, yoghurt, and cold chicken every day for every meal gave me something of a macronutrient imbalance, and now that I've cut out the overly proteined things my stomach aches have improved greatly - but my stomach still does hurt if I eat more than about 200g of anything at once.

 

[Zoe]

:agree:Angel,

The stuff I read about the Miralx, convinced me not to take it, for any reasons. Keep us posted on what you find out that works. I'm looking up natural bulking agents and will do the same,

 

[Zoe]

I don't have children, but, I'm a young adult autistic and epileptic. I have come to believe that the two may be so commonly comorbid that it may be worth linking them in the ICD/DSM.

Hi ilexa,
I have not been online much and am catching up on the posts in this thread. Welcome to the party. Your posts are interesting and challenge us all to think more deeply.
While I agree there may be a common thread between seizures and symptms cosidered ASD, I don't put much value on the ICD/DSM.

When living in Arizona, 1990s, I belonged to a support group for people who had seizures. One of our members was actually labeled as schizophrenic. However, his "schizophrenic episodes" were so like those of complex seizures, auditory, olfactory, and visual hallucinations, we just welcomed him into our group where he fit right in with the rest of us. For years I had an auditory hallucination\seizure in which I heard beautiful flute music. I'm glad I stopped having seizures, but sometimes I miss the music. I'm glad you've joined us.