I try and document all the things we try because I know other parents are scrambling to find hope and healing also. Sometimes it seems like you'll never find anything to help. But you will. I don't like when people claim they cured a child and NEVER give you a chronological concrete picture of what they did. I try not to do that. I don't like abstract or vague. I like facts and details because this helps autism parents work together to find better ways to improve our children's lives.
In July of this year, we began nicotine patch therapy for self injurious behavioral modification. It has dramatically reduced SIB. Who would think? I found this therapy while scrolling over alzheimer's research and noticing it elevates choline in brain. Then I remembered our son's fMRI showed blunted choline. So, it's possible nicotine is indeed restoring choline as he's more focused and eye contact , focus and moods have all dramatically increased.
@kgaccount absolutely wonderful! i see a huge improvement in Jamie! You are an inspiration and a credit to your children. Thankyou for the time you take to upload these videos!
Well, he's off Effexor now and his seizure activity is still up so suffice it to say it was NOT Effexor, so I asked if we could rechallenge it and now they won't let us until we see how Topamax (the latest seizure med tried) is going to work.....AAAAAHHHHH it's so maddening. We had him stable for awhile, what happened?
@Shoes454 Effexor XR=extended release form. Unfortunately Jamey's seizure activity spiked after he was titrated UP on effexor, so we went down and now may have to go OFF, but nevertheless, we may try ZOLOFT now, as that may work for OCD type behaviors rooted in compulsive self-injurious behavior...just trying to find that "cocktail" of meds/vitamins/herbs and natural remedies...we'll get there....just a matter of time
(CONT)....Epival - given as my mood stabilizer and reduce destructive behaviors like self-harm (punching on walls and hitting myself)
But that was only 2 years ago. I was on meds for only 6 months. Doc said I'm now okay without it. When times I asked for meds, he didn't give me to prevent me from drug dependence. However, these few months, my behaviours are coming back. I don't know what to do. I can't help but do it. I can't control. I just had to. I even feel emotionally abandoned by everyone
@smcs Try not to isolate yourself if you're feeling this way. Go outside. Take a walk. Go on a run. Call a friend. Watch comedies. Don't listen to sad songs. Sounds like the doctor may have given you wrong meds. Maybe for now try something natural like 5 HTP, but make sure it's not contraindicated with other stuff you may be taking. Ask your doctor. Feel free to personal message me if you need to vent or just need a friend.
Jamey has SOOOO much potential. I am POSITIVE there is MUCH more we can do, even with ALL the setbacks and confusion with his medical and behavioral management. There are so many positive things we see with new ways to improve his brain, it shows that no matter what AGE an autistic person is, and no MATTER how long the problems have persisted, there is ALWAYS HOPE.
I remember taking Lamictal. It was stopped after I almost lost consciousness and collapsed (though the room I was in was air-conditioned, I felt very hot.). All because the Lamictal made me feel tired, even after sleeping. I had to sleep in prone position with my legs straight and crossed together to relax myself.
I was changed to another drug (I forgot the name). But that was stopped too because I felt emotionally numb.
Later I was given Epival. I was okay all the way...........(CONT)
The GOOD news is that depakote makers, ABBOTT pharm, have a NEW drug ABS-103, that is supposed to be LESS toxic than depakote (valporic acid) and is in clinical studies NOW, so let's hope they get it approved, so Jamey can go back on a depakote NEW generation med, and we can stop having to BACKTRACK on seiuzre control and get down to cognitive enhancement and homeostasis, which I'm sure will bring major breakthroughs in his treatment.
OMG!!!! I am so thrilled when I saw the video my heart just about popped!!! Please keep us updated, I was begining to worry. I am so happy for you and jamey ....you are my hero!!!!
It's also interesting to note reseach shows combining nootropics like piracetam, vinpocetine, etc...with conventional drugs like effexor, reduces the amount [of effexor], etc...needed. Oh, I forgot to mention, Jamey's fMRI showed something about "blunted choline" which I find VERY disturbing..as research shows anti-convulsants strip brain of choline...why don't doctors tell us these things? I would've had Jamey on choine supplements, good thing at least we've feed him eggs (yolks have choline)
3- I would like to clarify that when I said Common anti-epileptics have 18-60hr half-life, I mean that one single drug can take as little as 18hr to be metabolised by ½, or as long as 60hr. The range is the individual variation, and most parents do not know how well their kid metabolise medication. It is very hard not to be able to give the drug at the sae rate that it is being metabolised.
2- If someone has a 60hr half-life and takes the drug daily or twice daily, quickly you’ll get over saturation. Without dosing the drug level in the blood (it used to be done routinely to monitor drug intake but is no longer done, a big mistake), it is hard to know, other than through behaviour changes and potential worsened adverse reaction if this might be the case or not. Several drugs, the complexity is higher still, + drug-drug interactions issues.
1-Your report shows how much behaviour can be amended with intervention and reminds us parents, that we should never give up in trying to make our children feel better. Having said this, I would caution that reaching a state of equilibrium with that many drugs might be very difficult though. The reason is that drugs tend to be metabolised at a different rates. Common anti-epileptics have 18-60hr half-life, this is the time it takes for the drug to be metabolised by half of the initial amount.
@Skymaker69 Yes, you are so right! In fact, I have a chart, where I've listed the half-lifes, onset, peaks of EACH drug he takes, because it is soooo critical to see how they may interact or contraindicate one another. For example, pecid, shouldn't be given with gabapentin and mirtazpine has a 20-40 hr half-life, which could oversaturate brain when mixed with other drugs given...I am still AIMING to REDUCE prescriptions and use NATURAL treatments as adjunct therapies....
@kgaccount A grant aim, we have found carnosine (Check Chez), and Acetyl-carnitine to be of some benefit together with MB12. In the past the ketogenic diet has worked wonder for us. There was recently an excellent program on BBC radio 4, called medical matters, case Notes Epilepsy 22 Feb 11. There is a postcast available. I highly recommend to listen to this to anyone dealing with epilepsy. I am also slowly weaning my son off Keppra. His epilepsy relates to infections and non of the anti
@Skymaker69 His epilepsy relates to infections and non of the anti-epileptic targets the relationship brain-immune system. It is incredible that no drug developer has looked at this link, because the vast majority of individuals have more seizure when they are running an infection, this is a well-known relationship amongst neurologists.
its good to see jamey so alert this gives ussome hope because out daughter is just like a vegetable almost except she eats and gets up and walks around but she doesnt even notice us when we talk, ahhh autism why do you have to be so hard and mysterious. well blessings to you and your family and we hope to see jamey keep progressing
i truly hope everything continues to go from here!!! you guys deserve it and i am positive jamie both loves you and knows what you are doing for him! :)
good to hear he is doin better i was wonderin if i could telophne interview u cause i am doing a senior project on what causes sib in autistic people and Jamey is pretty much my inspiration for reasearching this besides i want to know more about it !!! so plz pm back or comment me back thanks!!!
Abilify helped me cope with the loss of 2 grandparents who died within 14 weeks or so of each other. My dad, who worries about me being on medications was very pleased with the results. He said my mood was much more happier and I was more social than I had been for a while. Unfortunately I gained 30-50 LBs so it was determined that they should take me off of it. I've been off of it for almost 3 months. I can handle things better now because of the skills I learned while taking Abilify.
@suekosa That's very interesting. I've often thought temporary use of meds, along with PRN (when needed) is better than long term therapy, as even with the SNRI (elevate serotonin and norepinephrine) and SSRI (elevate serontonin already in brain), they don't replensish the neurotransmitters you may need, so you end up worse off later. It's a real balancing act. I'm glad abilify helped. Everyone's brain is unique. Sorry about your grandparents.
At that time I also did not have chewy tubing either. We eventually buy it. Anyways the down side to Abilify is it can cause you to gain weight, increase your appetite, cause sleep disturbances and may cause you to have difficulty swallowing. However I did some research to see what conditions it specifically treated and was somewhat suprised to find out that it can be used to treat autistic patients who have issues with agitation. It's also used to treat anxiety.
I hope this new med regimine works for Jamey!! I hope (Knocks on Wood) that it continues to help him. I do have one question for you and that is has Jamey ever been on Abilify? They put me on Abilify from December 2009 to December 2010. they put me in it because I was having sensory meltdowns at least once a week and they were so bad that I couldn't even stay in school for the rest of the day when that would happen. During my sensory meltdowns I would often bite the insides of my wrists. TBC
wow!!!!! his brain is TURNED ON! that is soooooo awesome :) i'm thrilled beyond words!!!!! go mom and dad :) you rock! keep it up for sure. just maybe he will begin to walk up that big hill of life and begin to make some real changes and prove all of the typical teachers, doctors, and psychs wrong. we are doing that over here with our autistic daughter!!!!! i just love it when a parent prevails and proves the system wrong!!!! awesome just awesome !
@ebaymamaqueen Yes, his brain does seem "turned on". Yet, now the real challenge is in balancing the "turning on" of brain with the brain's vulnerability to have seizure activity...that is our goal, is to find the perfect combination (and I KNOW it's out there!) to BOTH keep the brain firing, without triggering more seizure activity....Thanks for encouraging comments. We are excited. There's a LOT of new research out there that takes a LOT of DIGGING to find, but it's worth digging...
Anyone looking for one of the best programs for Autism should look into "Mark Hyman". Just type him into Youtube.
symbian7 2 days ago
I try and document all the things we try because I know other parents are scrambling to find hope and healing also. Sometimes it seems like you'll never find anything to help. But you will. I don't like when people claim they cured a child and NEVER give you a chronological concrete picture of what they did. I try not to do that. I don't like abstract or vague. I like facts and details because this helps autism parents work together to find better ways to improve our children's lives.
kgaccount 1 week ago
In July of this year, we began nicotine patch therapy for self injurious behavioral modification. It has dramatically reduced SIB. Who would think? I found this therapy while scrolling over alzheimer's research and noticing it elevates choline in brain. Then I remembered our son's fMRI showed blunted choline. So, it's possible nicotine is indeed restoring choline as he's more focused and eye contact , focus and moods have all dramatically increased.
kgaccount 6 months ago
@kgaccount absolutely wonderful! i see a huge improvement in Jamie! You are an inspiration and a credit to your children. Thankyou for the time you take to upload these videos!
sammbah 8 months ago
Well, he's off Effexor now and his seizure activity is still up so suffice it to say it was NOT Effexor, so I asked if we could rechallenge it and now they won't let us until we see how Topamax (the latest seizure med tried) is going to work.....AAAAAHHHHH it's so maddening. We had him stable for awhile, what happened?
kgaccount 11 months ago
What is the difference between Efforex and Efferex XR
Shoes454 11 months ago
@Shoes454 Effexor XR=extended release form. Unfortunately Jamey's seizure activity spiked after he was titrated UP on effexor, so we went down and now may have to go OFF, but nevertheless, we may try ZOLOFT now, as that may work for OCD type behaviors rooted in compulsive self-injurious behavior...just trying to find that "cocktail" of meds/vitamins/herbs and natural remedies...we'll get there....just a matter of time
kgaccount 11 months ago
@kgaccount Is on an antidepresent? omg. i hope some "cocktail" would work for him.
Shoes454 11 months ago
(CONT)....Epival - given as my mood stabilizer and reduce destructive behaviors like self-harm (punching on walls and hitting myself)
But that was only 2 years ago. I was on meds for only 6 months. Doc said I'm now okay without it. When times I asked for meds, he didn't give me to prevent me from drug dependence. However, these few months, my behaviours are coming back. I don't know what to do. I can't help but do it. I can't control. I just had to. I even feel emotionally abandoned by everyone
smcs 1 year ago
@smcs Try not to isolate yourself if you're feeling this way. Go outside. Take a walk. Go on a run. Call a friend. Watch comedies. Don't listen to sad songs. Sounds like the doctor may have given you wrong meds. Maybe for now try something natural like 5 HTP, but make sure it's not contraindicated with other stuff you may be taking. Ask your doctor. Feel free to personal message me if you need to vent or just need a friend.
kgaccount 1 year ago
Jamey has SOOOO much potential. I am POSITIVE there is MUCH more we can do, even with ALL the setbacks and confusion with his medical and behavioral management. There are so many positive things we see with new ways to improve his brain, it shows that no matter what AGE an autistic person is, and no MATTER how long the problems have persisted, there is ALWAYS HOPE.
kgaccount 1 year ago
I remember taking Lamictal. It was stopped after I almost lost consciousness and collapsed (though the room I was in was air-conditioned, I felt very hot.). All because the Lamictal made me feel tired, even after sleeping. I had to sleep in prone position with my legs straight and crossed together to relax myself.
I was changed to another drug (I forgot the name). But that was stopped too because I felt emotionally numb.
Later I was given Epival. I was okay all the way...........(CONT)
smcs 1 year ago
The GOOD news is that depakote makers, ABBOTT pharm, have a NEW drug ABS-103, that is supposed to be LESS toxic than depakote (valporic acid) and is in clinical studies NOW, so let's hope they get it approved, so Jamey can go back on a depakote NEW generation med, and we can stop having to BACKTRACK on seiuzre control and get down to cognitive enhancement and homeostasis, which I'm sure will bring major breakthroughs in his treatment.
kgaccount 1 year ago
OMG!!!! I am so thrilled when I saw the video my heart just about popped!!! Please keep us updated, I was begining to worry. I am so happy for you and jamey ....you are my hero!!!!
momadukie 1 year ago
It's also interesting to note reseach shows combining nootropics like piracetam, vinpocetine, etc...with conventional drugs like effexor, reduces the amount [of effexor], etc...needed. Oh, I forgot to mention, Jamey's fMRI showed something about "blunted choline" which I find VERY disturbing..as research shows anti-convulsants strip brain of choline...why don't doctors tell us these things? I would've had Jamey on choine supplements, good thing at least we've feed him eggs (yolks have choline)
kgaccount 1 year ago
3- I would like to clarify that when I said Common anti-epileptics have 18-60hr half-life, I mean that one single drug can take as little as 18hr to be metabolised by ½, or as long as 60hr. The range is the individual variation, and most parents do not know how well their kid metabolise medication. It is very hard not to be able to give the drug at the sae rate that it is being metabolised.
Skymaker69 1 year ago
2- If someone has a 60hr half-life and takes the drug daily or twice daily, quickly you’ll get over saturation. Without dosing the drug level in the blood (it used to be done routinely to monitor drug intake but is no longer done, a big mistake), it is hard to know, other than through behaviour changes and potential worsened adverse reaction if this might be the case or not. Several drugs, the complexity is higher still, + drug-drug interactions issues.
Skymaker69 1 year ago
1-Your report shows how much behaviour can be amended with intervention and reminds us parents, that we should never give up in trying to make our children feel better. Having said this, I would caution that reaching a state of equilibrium with that many drugs might be very difficult though. The reason is that drugs tend to be metabolised at a different rates. Common anti-epileptics have 18-60hr half-life, this is the time it takes for the drug to be metabolised by half of the initial amount.
Skymaker69 1 year ago
@Skymaker69 Yes, you are so right! In fact, I have a chart, where I've listed the half-lifes, onset, peaks of EACH drug he takes, because it is soooo critical to see how they may interact or contraindicate one another. For example, pecid, shouldn't be given with gabapentin and mirtazpine has a 20-40 hr half-life, which could oversaturate brain when mixed with other drugs given...I am still AIMING to REDUCE prescriptions and use NATURAL treatments as adjunct therapies....
kgaccount 1 year ago
@kgaccount A grant aim, we have found carnosine (Check Chez), and Acetyl-carnitine to be of some benefit together with MB12. In the past the ketogenic diet has worked wonder for us. There was recently an excellent program on BBC radio 4, called medical matters, case Notes Epilepsy 22 Feb 11. There is a postcast available. I highly recommend to listen to this to anyone dealing with epilepsy. I am also slowly weaning my son off Keppra. His epilepsy relates to infections and non of the anti
Skymaker69 1 year ago
@Skymaker69 His epilepsy relates to infections and non of the anti-epileptic targets the relationship brain-immune system. It is incredible that no drug developer has looked at this link, because the vast majority of individuals have more seizure when they are running an infection, this is a well-known relationship amongst neurologists.
Skymaker69 1 year ago
its good to see jamey so alert this gives ussome hope because out daughter is just like a vegetable almost except she eats and gets up and walks around but she doesnt even notice us when we talk, ahhh autism why do you have to be so hard and mysterious. well blessings to you and your family and we hope to see jamey keep progressing
angelablak 1 year ago
i truly hope everything continues to go from here!!! you guys deserve it and i am positive jamie both loves you and knows what you are doing for him! :)
ebaymamaqueen 1 year ago
I am so impressed with your courage and tenacity in helping your son. I wish there were better treatment options for Jamey.
Ilana Lehmann
Assistant Professor of Rehabilitation Counseling
cool00789 1 year ago
wow this is AMAZING! keep us updated!
ASDogGeek 1 year ago
I take Lamictal for my Seizures
plushbanana 1 year ago
good to hear he is doin better i was wonderin if i could telophne interview u cause i am doing a senior project on what causes sib in autistic people and Jamey is pretty much my inspiration for reasearching this besides i want to know more about it !!! so plz pm back or comment me back thanks!!!
karenmvinson11 1 year ago
Abilify helped me cope with the loss of 2 grandparents who died within 14 weeks or so of each other. My dad, who worries about me being on medications was very pleased with the results. He said my mood was much more happier and I was more social than I had been for a while. Unfortunately I gained 30-50 LBs so it was determined that they should take me off of it. I've been off of it for almost 3 months. I can handle things better now because of the skills I learned while taking Abilify.
suekosa 1 year ago
@suekosa That's very interesting. I've often thought temporary use of meds, along with PRN (when needed) is better than long term therapy, as even with the SNRI (elevate serotonin and norepinephrine) and SSRI (elevate serontonin already in brain), they don't replensish the neurotransmitters you may need, so you end up worse off later. It's a real balancing act. I'm glad abilify helped. Everyone's brain is unique. Sorry about your grandparents.
kgaccount 1 year ago
At that time I also did not have chewy tubing either. We eventually buy it. Anyways the down side to Abilify is it can cause you to gain weight, increase your appetite, cause sleep disturbances and may cause you to have difficulty swallowing. However I did some research to see what conditions it specifically treated and was somewhat suprised to find out that it can be used to treat autistic patients who have issues with agitation. It's also used to treat anxiety.
suekosa 1 year ago
I hope this new med regimine works for Jamey!! I hope (Knocks on Wood) that it continues to help him. I do have one question for you and that is has Jamey ever been on Abilify? They put me on Abilify from December 2009 to December 2010. they put me in it because I was having sensory meltdowns at least once a week and they were so bad that I couldn't even stay in school for the rest of the day when that would happen. During my sensory meltdowns I would often bite the insides of my wrists. TBC
suekosa 1 year ago
wow!!!!! his brain is TURNED ON! that is soooooo awesome :) i'm thrilled beyond words!!!!! go mom and dad :) you rock! keep it up for sure. just maybe he will begin to walk up that big hill of life and begin to make some real changes and prove all of the typical teachers, doctors, and psychs wrong. we are doing that over here with our autistic daughter!!!!! i just love it when a parent prevails and proves the system wrong!!!! awesome just awesome !
ebaymamaqueen 1 year ago 2
@ebaymamaqueen Yes, his brain does seem "turned on". Yet, now the real challenge is in balancing the "turning on" of brain with the brain's vulnerability to have seizure activity...that is our goal, is to find the perfect combination (and I KNOW it's out there!) to BOTH keep the brain firing, without triggering more seizure activity....Thanks for encouraging comments. We are excited. There's a LOT of new research out there that takes a LOT of DIGGING to find, but it's worth digging...
kgaccount 1 year ago