This is pure 100% cruelty!! The reason he self harms and spits his food out is because he doesn't want to live! Put him out of his misery and end his life now!
I cannot bear seeing torture and suffering like this!!!!
@eastender86 Oh really now? What research have you done on autism then? What's your degree in? Where did you go to medical school? What qualifies you at all to talk about why a person exhibits behaviours like Jamie's?
@glueyourfingers It doesn't take a medical professional to see that he is suffering. Torture is never justifiable.
I just believe that people have got a right to live a life without constant suffering. If you were brain damaged, had your arms tied down and were constantly watched 24/7 and forcefed would you want to live. I don't think so!
To not be able to tell people you're suffering makes it even worse. Frances Inglis did it to her son and too right!
@eastender86 Actually he's NOT being tortured, he's being treated very well. And actions that look like self-abuse to us (hitting his head, etc) are actually ways to get sensory stimulation because many people with autism are hyposensitive. I wish someone would put you out of your suffering.
"Possibly indicates an early PID pelvic inflammatory disease. Normally there shouldn't be any free fluid in pelvis. Confirmation is needed by other tests"
I just googled and found this. I bet you did too. ;
You mention on the video that Jamie sometimes suffers from UTI's from catheterization. Do the hospitals ever offer to use an external catheter? Or an adult diaper? That would be safer I think.
@Bakmoon I just had an argument with ER doctor over NOT using straight cath...he kept saying, "so you don't want us to check his urine?" And I was like NO, that is NOT what I'm saying, I'm saying use a condom cath to avoid introducing infection or triggering self abuse. He finally did the condom cath...everything's a fight. It's exhausting.
@Bakmoon We've made a point of always insisting if they are going to do urine tests to use a condom cath, NOT a straight cath....the idea of putting a catheter up a severely autistic persons's private part, when you know this patient is prone to SIB, is just nuts. You'd think I wouldn't have to tell the nurse or doctor this.
Sorry start reading from the bottome of my posts up.. Had to make it a dtring. Also just wanted to add My son is the most loving good hearted son I could ever ask for. He knows Im helping him and that makes it al worth it...
Im a few years behind you but I hope I can learn from you it may help my son. Thanks and god bless...
I will die helping him and Its really scary and hard to think what he will go through when that time comes when My wife and I cant help him anymore. I have this dream all the time that he is in a room crying because he wants his daddy and I cant get to him. I take it day by day and we do the best we can. My favorite time of the day is when he’s sleeping. I don’t mean to sound mean but I can relax a bit. . Good luck and let me know if the Epson salt helps. Research it on Google.
I have seen a big change and notice he gets worse if I run out. Be careful and tell your doctor before you try this. This is the hardest thing my wife and I have ever gone through. Its not the autism that bothers me at all. I can deal with that, It when he hits or bites himself. Its when he cries because he can’t tell me what hurts him. It when he looks out the window and I know he just wants to be able to do what everyone else is doing
The excess fluid could be retentions he may also be dehydrated. So as with me digestion and stomach pains and gas seem to spark the self abuse. When he gets sick its hell. I also have had to had him fully sedated and any dental work is at the hospital. There is just no other way. Anyway back to the magnesium (salt baths. I put about 2 cups into the bath and I make sure he soaks in in for at least 20 minutes.
One thing I have tried and not sure if you have it bathing him in Epson salt. This puts back magnesium that he loses from his loose stool that occurs because we have to give him merolax. Without it he will not go at all, Sound like you’re having that same as well. You are giving laxatives which is rough in his system.
Okay, you are awesome. I have a son on the same path his name is Kyle. He too hits himself and bits himself. I walk away when he does and if he does not stop I know its something physical. That I try to treat it. He usually suffers from gas I put him on his bed and roll him back and fourth. Something for an hour. Its hard but I look at it like exercise. I have some muscles that I guarantee no body else has unless they have an autistic son.
Was trying to remember the name of it so I had to google Ascites. Causes abdominal pain. Can be a sign of liver or kidney disfunction. Did they run any blood tests? BTW If you are using a cath regularly, keep in mind you will get bladder infection. Its pretty much inevitable.
@MeaganWolf18 We can tell he's in discomfort if many acute positive behavioral interventions fail and he begins to present with facial grimmaces illuminating pain or if his self abuse can't be re-directed. Another tell tale sign of physical discomfort would be if we put in him water ie..bath , hot tub or pool, and he STILL self abuses. Mainly, because WATER is 99% a place he does NOT self abuse, so if he's self abusing in water, as in taking shower, etc..we KNOW its' PAIN
Hello you wonderful mother. Have you had him tested for the H-pylori bacteria? It is much more common than most realize and causes stomach ulcers. I work with adults with severe autism and in the past 3 years, half of the adults we serve have tested positive. they live in group homes, not institutions. It is common in those who live in institutions but also in those in group homes. It is not difficult to contract and can also occur in those living at home. Please check this out.
CCSVI Clinic Receives Joint IRB Approval for Aftercare Protocol Study.
The joint application between Noble Hospital and CCSVI Clinic has been approved through the IEC Institutional Review Board (IRB) that will allow researchers to use patient data to study their new extended and enhanced aftercare treatment protocol. Please Call 888-419-6855 to know more about participating in the study. Log on to ccsviclinic. ca for more information. Email apply -at- ccsviclinic. ca
If trace fluid in the "pelvic area" means in the colon I can tell you what I used to have. Sorry for being graphic but I used to have watery liquid come out my anus while having a bowel movement due to constipation. This lasted for several years. Not sure if this is what the doctor was saying but trying to contribute some thoughts.
@KSitz77 Trace fluid was in pelvic area. He had no diarrhea, but I know what you're talking about. Gastrointestinal issues actualy quite common in autistic population, as it is with other special needs persons, as well.
I have a mildly autistic daughter and when she is in a comfortable place she stops thinking about the torture in her mind because it distracts her. I think, and its only my opinion, that autistics are plagued more with mental torture than physical torture, with exceptions of course.
Have you tried biomedical and dietary intervention?! It's worked wonders for our children, although they are considered mild (one non-verbal). Aren't there any natural alternatives for Ativan? We stopped all injections a long time ago due to the preservatives they use in many of the medicines. We even noticed a difference in our youngest son with his allergy shots. He was regressing while taking them and after we stopped, he made huge progress.
@PsychoFreke When a person is having a tonic clonic seizure, the ativan is good. I don't know of any alternative herbs, etc, to stop that outside meds. With SIB, I bet there is something IM the companies could make, that would be far safer and more therapeutic, but we all know that isn't going to happen anytime soon.
@kgaccount Unfortunately you're right. When it comes to our ASD children, we don't have much support except other parents with ASD children. Our son also self injures, but his seems to be more out of frustration with his inability to stress his needs. Is it just me, or does your son use SIB as another form of stimming?
@JGOETTLE You are correct. Many behavioral issues are rooted in some autistics being highly sensitive to triggers, such as slight aches and pains, auditory or enviromental overstimuli, changes in routine, diet, wrong meds, or right meds that cause side effects that trigger sib, such as side effects like headaches, vertigo or gastrointestinal discomforts. The trick is identifying each one and trying to MITIGATE, reduce or eliminate those triggers.
@JGOETTLE trace fluid in the pelvic area means that there is fluid in the pelvic. The fluid is a result of an infection. The infection could have come about from a previous surgery, cyst, infection of pelvic or abdomen. Nontheless, the body is informing you that there is something going on in the pelvic area.
@wpcary1 That explains why when he got antibiotics for a UTI, we haven't seen the trace fluid in abdomen again. I think many autistics non verbal, needlessly suffer from low grade underlying infections that are not easily diagnosed in the absence of other more obvious issues like UTIs.
i hope this comes out - my comments arent posting - but there is a link between candidas/parasites and fluid retention in the pelvic area. could be what was picked up on medical examination, - just my thoughts - hope it helps - blessings to you and your son x
@ascend2luv It is simply scary to me to see how not ONE doctor has ever commented on this about my son's medical findings, but here you are, someone who sees it and you have more insight...you are a smart woman!
@kgaccount - i see similarities between jamey and my son - you mentioning bowel movement and improvement in SIB reminded me of the cycles my son suffered. Doctors arent taught to look for physical problems in relation to autistic behaviours. Miracles do happen, i see them everytime my son learns a new skill. There is so much hope :D
i know you probably get fed up with people giving you advice, and have tried numerous things so i apologise in advance but what struck me was that your son's behaviour and a BM - my son used to suffer from a cyclic worsening of behaviours which i noticed were these were related to his bowel - a pattern of constipation (worsening of behaviours) once he pooed his symptoms lessened.,.
contd... turning to dirroeah and gradually becoming more constipated. My son had leaky gut/candidas- i tried the gluten casein free diet, but in the end i just gave him a good quality probiotic - this seems to keep him more regular - so it appears - if i stop for a while his behavour worsens - candidas would also cause urine infections - just my experiences i can see similaries with Jamey - hugs xx
p.s. - you could get anti candidas medication on prescription or you can use alternative/natural remedies - probiotics keep the candidas under control - try looking into this - excessive gas is also an indication - i am sorry if you have already checked this out - antibiotics and prescript meds screw up the bodies natural balance - this is how candidas takes hold - good luck
@ascend2luv Interesting, because I do have pro-biotics for him also KEFIR, and nystatin, the problem is always getting him to actually TAKE all these different supplements...sometimes he spits them out. as in 30 bucks just went on the floor. Frustrating sometimes. But worth the effort. Thanks. totally agree with you
@kgaccount i have the same probs with my son i cant give him pills or tablets i have crush/mix things up in food that he eats or a drink/juice - he is dead suspicious of anything new. i gave my son nystatin in a liquid form, mixing with food/drink to get him to take it. Its not ideal but it helped loads to improve things. I also eliminated excess sugar from diet. Google candidas/autism for more info
keeping candidas under control putting lots of good bacteria into my sons body has reduced aggression, severeity of tantrums and SIBs - he has regular bowel movements now. I lost alot of faith in mainstream medicine as doctors often dismissed my sons gut problems dismissing it as part of his autism - you may find charitable organisations in usa that help with funding for supplements.
re your mentioning "fluid" in pelvic area. If candidas grows out of balance the yeast/fungi create toxic metabolites that begin to degrade the intestinal walls leading to 'leaky gut' and inflammation. This deterioration of the intestinal walls allows the yeast by-products and other inappropriate food molecules to enter the body/bloodstream. Good luck i really think this could be a factor for jamey hugs x
@ascend2luv FLUID IN PELVIS...why haven't any of Jamey's doctors ever mentioned this? But you caught it after I mentioned it being on his medical exam....amazing how just little things undected and dismissed can be so critical....
@kgaccount the gut/brain relationship is huge in autism- many doctors are wary of looking at the autistic gut because of what happened to andrew wakefield - see if you can get referral to a good gut doctor who is willing to investigate/treat jamey for candidas also anti inflamatories help - it could change jamey's life. if you cant get specialist help you can do alot yourself. Good luck hunny xxx
@kgaccount candidas and parasites are linked to water retention around the pelvic region. this could account for what was seen on his medical examination. women get water retention around their menses - could be why it was said to be unusual in a male - I suspect the baths warm water eases discomfort - just my thoughts x
God bless you guys for what you are doing and give you strength. May god bless the young man and what he's going through. I can't watch this and not feel proud of the two ladies in clip. The true definition of a hero is evident in this video.
Dear Jaime's Mom, it is hard to watch your beautiful son suffer so much. I hope that within the next decade more research( the real scientific one, not the special ed IEP stuff) will be funded to bring a remission to this issue. I hope and pray there will be a cure identified during Jamie's life time. You are wonderful & brave! Thanks for sharing. Happy Mother's Day!
also, there is no way that anyone with visual, verbal, body agnosias, with Social Emotional Agnosia, with mood, anxiety, compulsive disorders, with info processing issues associated with gut, immune, metabolic disorders, with Aphasia, with Dyspraxia... NONE of them have experienced Catatonic Exciteability so can't give you insights into it even if they are dx'd with autism or ASD.
I worked with a 'severely autistic' teen since he was 4. He had always had severe mood problems fluctuating between extreme exciteability, extreme defensiveness and stupor. In puberty he regressed further, self injury became almost constant, fluctuating bw extreme physical rigidity/stillness/staring, such intense agitation/hyperactivity etc. He was hospitalised, treated for Catatonic Exciteability and Stupor, began to use the toilet, dress, feed, trying to verbalise and now typing.
How was he treated? What exactly did they do to "cure" this? You say he began using toilet, dressing and feeding himself, began typing...that is quite remarkable, if so, then what exactly was the medication or treatment that led to such progress?
and Catatonic stupor is FAR more commonly known of than Catatonic Excitability which has only RECENTLY been recognised and treated as the other form of Catatonia and that there are those who fluctuate between the two.
I think you're an amazing Mom and so sorry all of you are going through this. Having said that, a part of me doesn't feel as alone after watching many of the video's. Many things I saw on the video's I have seen first hand with my own son who also has severe complex needs. Nick has severe autism, severe developmental delay as well as uncontrolled epilepsy. My son isn't quite as self-injurious as your son, but close sometimes. His aggression is more of an issue. Would love to chat sometime.
@TheFalletta Yes, aggression, that is TOUGH. It's a differnt kind of stress as you're worried about other people getting hurt, as well as your own child. Not fun!! Please feel free to leave me personal message anytime...How is your son doing now? How old is he? Does he live at home?
Thank you...I know, it sucks giving him meds for sib, I usually avoid this at all costs and use it, as the doctor advised, as an abolute LAST resort when everything else that normally re-directs him repeatedly fails and he's high risk of injurying himself or even triggering seizure activity from constantly jarring his head with his fists...receiving the hugs!
Current blood tests have shown no infection...He's had more medical tests that I can write here, but I still think there is something doctors haven't noticed or people reading x rays etc..didn't catch...everything moves so fast in hospitals. The error rate is high...whatever it is must be episodic because it comes and goes.what scares me is one time I leaned over a gastroenterolgoist and saw a test that was positive for my son, that the guy hadn't ever told me: it was hpylori-since eradicated
You are so amazing. All children deserve a parent like you.
aureliefregeau 3 months ago
How old is he now
ZombieDateRape 3 months ago
This is pure 100% cruelty!! The reason he self harms and spits his food out is because he doesn't want to live! Put him out of his misery and end his life now!
I cannot bear seeing torture and suffering like this!!!!
eastender86 3 months ago
@eastender86 Oh really now? What research have you done on autism then? What's your degree in? Where did you go to medical school? What qualifies you at all to talk about why a person exhibits behaviours like Jamie's?
glueyourfingers 3 months ago
@glueyourfingers It doesn't take a medical professional to see that he is suffering. Torture is never justifiable.
I just believe that people have got a right to live a life without constant suffering. If you were brain damaged, had your arms tied down and were constantly watched 24/7 and forcefed would you want to live. I don't think so!
To not be able to tell people you're suffering makes it even worse. Frances Inglis did it to her son and too right!
eastender86 3 months ago
@eastender86 Actually he's NOT being tortured, he's being treated very well. And actions that look like self-abuse to us (hitting his head, etc) are actually ways to get sensory stimulation because many people with autism are hyposensitive. I wish someone would put you out of your suffering.
glueyourfingers 3 months ago
@glueyourfingers It would be my pleasure. Better than living like that.
eastender86 3 months ago
Trace fluid in pelvis:
"Possibly indicates an early PID pelvic inflammatory disease. Normally there shouldn't be any free fluid in pelvis. Confirmation is needed by other tests"
I just googled and found this. I bet you did too. ;
KSitz77 3 months ago
You mention on the video that Jamie sometimes suffers from UTI's from catheterization. Do the hospitals ever offer to use an external catheter? Or an adult diaper? That would be safer I think.
Bakmoon 6 months ago
@Bakmoon I just had an argument with ER doctor over NOT using straight cath...he kept saying, "so you don't want us to check his urine?" And I was like NO, that is NOT what I'm saying, I'm saying use a condom cath to avoid introducing infection or triggering self abuse. He finally did the condom cath...everything's a fight. It's exhausting.
kgaccount 5 months ago
@Bakmoon We've made a point of always insisting if they are going to do urine tests to use a condom cath, NOT a straight cath....the idea of putting a catheter up a severely autistic persons's private part, when you know this patient is prone to SIB, is just nuts. You'd think I wouldn't have to tell the nurse or doctor this.
kgaccount 4 months ago
@Bakmoon voz no saves si el de niño se golpeaba...o como fue su vida de niño...
yolandaporty 1 month ago
Sorry start reading from the bottome of my posts up.. Had to make it a dtring. Also just wanted to add My son is the most loving good hearted son I could ever ask for. He knows Im helping him and that makes it al worth it...
Im a few years behind you but I hope I can learn from you it may help my son. Thanks and god bless...
bruce0813 6 months ago
@bruce0813 Thank you. I hope all is well with your precious son. You sound like a great and loving parent!
kgaccount 6 months ago
I will die helping him and Its really scary and hard to think what he will go through when that time comes when My wife and I cant help him anymore. I have this dream all the time that he is in a room crying because he wants his daddy and I cant get to him. I take it day by day and we do the best we can. My favorite time of the day is when he’s sleeping. I don’t mean to sound mean but I can relax a bit. . Good luck and let me know if the Epson salt helps. Research it on Google.
bruce0813 6 months ago
I have seen a big change and notice he gets worse if I run out. Be careful and tell your doctor before you try this. This is the hardest thing my wife and I have ever gone through. Its not the autism that bothers me at all. I can deal with that, It when he hits or bites himself. Its when he cries because he can’t tell me what hurts him. It when he looks out the window and I know he just wants to be able to do what everyone else is doing
bruce0813 6 months ago
The excess fluid could be retentions he may also be dehydrated. So as with me digestion and stomach pains and gas seem to spark the self abuse. When he gets sick its hell. I also have had to had him fully sedated and any dental work is at the hospital. There is just no other way. Anyway back to the magnesium (salt baths. I put about 2 cups into the bath and I make sure he soaks in in for at least 20 minutes.
bruce0813 6 months ago
One thing I have tried and not sure if you have it bathing him in Epson salt. This puts back magnesium that he loses from his loose stool that occurs because we have to give him merolax. Without it he will not go at all, Sound like you’re having that same as well. You are giving laxatives which is rough in his system.
bruce0813 6 months ago
Okay, you are awesome. I have a son on the same path his name is Kyle. He too hits himself and bits himself. I walk away when he does and if he does not stop I know its something physical. That I try to treat it. He usually suffers from gas I put him on his bed and roll him back and fourth. Something for an hour. Its hard but I look at it like exercise. I have some muscles that I guarantee no body else has unless they have an autistic son.
bruce0813 6 months ago
Was trying to remember the name of it so I had to google Ascites. Causes abdominal pain. Can be a sign of liver or kidney disfunction. Did they run any blood tests? BTW If you are using a cath regularly, keep in mind you will get bladder infection. Its pretty much inevitable.
nyxpooka 7 months ago
What is a suppository?
MeaganWolf18 8 months ago
@MeaganWolf18 It's a pill you have to literally put up the butt.
swingswangfilms 8 months ago
This has been flagged as spam show
Most trusted Latino women marriage service online now busizz4me.info
demalikavinodani 9 months ago
You had mentioned around 5:49 you said he was presenting as a moderate discomfort. How can you tell?
MeaganWolf18 9 months ago
@MeaganWolf18 We can tell he's in discomfort if many acute positive behavioral interventions fail and he begins to present with facial grimmaces illuminating pain or if his self abuse can't be re-directed. Another tell tale sign of physical discomfort would be if we put in him water ie..bath , hot tub or pool, and he STILL self abuses. Mainly, because WATER is 99% a place he does NOT self abuse, so if he's self abusing in water, as in taking shower, etc..we KNOW its' PAIN
kgaccount 9 months ago
:(
sammysyrett 10 months ago
Please have him tested for H-Pylori. It is a bacteria that can cause stomach ulcers and other digestive probelms. Please test him.
Dondi4568 10 months ago
Hello you wonderful mother. Have you had him tested for the H-pylori bacteria? It is much more common than most realize and causes stomach ulcers. I work with adults with severe autism and in the past 3 years, half of the adults we serve have tested positive. they live in group homes, not institutions. It is common in those who live in institutions but also in those in group homes. It is not difficult to contract and can also occur in those living at home. Please check this out.
Dondi4568 10 months ago
This has been flagged as spam show
CCSVI Clinic Receives Joint IRB Approval for Aftercare Protocol Study.
The joint application between Noble Hospital and CCSVI Clinic has been approved through the IEC Institutional Review Board (IRB) that will allow researchers to use patient data to study their new extended and enhanced aftercare treatment protocol. Please Call 888-419-6855 to know more about participating in the study. Log on to ccsviclinic. ca for more information. Email apply -at- ccsviclinic. ca
Gregmills007 11 months ago
If trace fluid in the "pelvic area" means in the colon I can tell you what I used to have. Sorry for being graphic but I used to have watery liquid come out my anus while having a bowel movement due to constipation. This lasted for several years. Not sure if this is what the doctor was saying but trying to contribute some thoughts.
KSitz77 1 year ago
@KSitz77 Trace fluid was in pelvic area. He had no diarrhea, but I know what you're talking about. Gastrointestinal issues actualy quite common in autistic population, as it is with other special needs persons, as well.
kgaccount 1 year ago
I have a mildly autistic daughter and when she is in a comfortable place she stops thinking about the torture in her mind because it distracts her. I think, and its only my opinion, that autistics are plagued more with mental torture than physical torture, with exceptions of course.
KSitz77 1 year ago
Have you tried biomedical and dietary intervention?! It's worked wonders for our children, although they are considered mild (one non-verbal). Aren't there any natural alternatives for Ativan? We stopped all injections a long time ago due to the preservatives they use in many of the medicines. We even noticed a difference in our youngest son with his allergy shots. He was regressing while taking them and after we stopped, he made huge progress.
PsychoFreke 1 year ago
@PsychoFreke When a person is having a tonic clonic seizure, the ativan is good. I don't know of any alternative herbs, etc, to stop that outside meds. With SIB, I bet there is something IM the companies could make, that would be far safer and more therapeutic, but we all know that isn't going to happen anytime soon.
kgaccount 1 year ago
@kgaccount Unfortunately you're right. When it comes to our ASD children, we don't have much support except other parents with ASD children. Our son also self injures, but his seems to be more out of frustration with his inability to stress his needs. Is it just me, or does your son use SIB as another form of stimming?
PsychoFreke 1 year ago
Have you tried biomedical and dietary intervention?! It's worked wonders for our children, although they are considered mild (one non-verbal).
PsychoFreke 1 year ago
Just like him keep hitting himself. Behavior modification is a waste of time and energy with autistics.
JGOETTLE 1 year ago
@JGOETTLE You are correct. Many behavioral issues are rooted in some autistics being highly sensitive to triggers, such as slight aches and pains, auditory or enviromental overstimuli, changes in routine, diet, wrong meds, or right meds that cause side effects that trigger sib, such as side effects like headaches, vertigo or gastrointestinal discomforts. The trick is identifying each one and trying to MITIGATE, reduce or eliminate those triggers.
kgaccount 1 year ago
@JGOETTLE trace fluid in the pelvic area means that there is fluid in the pelvic. The fluid is a result of an infection. The infection could have come about from a previous surgery, cyst, infection of pelvic or abdomen. Nontheless, the body is informing you that there is something going on in the pelvic area.
wpcary1 1 year ago
@wpcary1 That explains why when he got antibiotics for a UTI, we haven't seen the trace fluid in abdomen again. I think many autistics non verbal, needlessly suffer from low grade underlying infections that are not easily diagnosed in the absence of other more obvious issues like UTIs.
kgaccount 1 year ago
i hope this comes out - my comments arent posting - but there is a link between candidas/parasites and fluid retention in the pelvic area. could be what was picked up on medical examination, - just my thoughts - hope it helps - blessings to you and your son x
ascend2luv 1 year ago
@ascend2luv It is simply scary to me to see how not ONE doctor has ever commented on this about my son's medical findings, but here you are, someone who sees it and you have more insight...you are a smart woman!
kgaccount 1 year ago
@kgaccount - i see similarities between jamey and my son - you mentioning bowel movement and improvement in SIB reminded me of the cycles my son suffered. Doctors arent taught to look for physical problems in relation to autistic behaviours. Miracles do happen, i see them everytime my son learns a new skill. There is so much hope :D
ascend2luv 1 year ago
Comment removed
ascend2luv 1 year ago
i know you probably get fed up with people giving you advice, and have tried numerous things so i apologise in advance but what struck me was that your son's behaviour and a BM - my son used to suffer from a cyclic worsening of behaviours which i noticed were these were related to his bowel - a pattern of constipation (worsening of behaviours) once he pooed his symptoms lessened.,.
ascend2luv 1 year ago
contd... turning to dirroeah and gradually becoming more constipated. My son had leaky gut/candidas- i tried the gluten casein free diet, but in the end i just gave him a good quality probiotic - this seems to keep him more regular - so it appears - if i stop for a while his behavour worsens - candidas would also cause urine infections - just my experiences i can see similaries with Jamey - hugs xx
ascend2luv 1 year ago
p.s. - you could get anti candidas medication on prescription or you can use alternative/natural remedies - probiotics keep the candidas under control - try looking into this - excessive gas is also an indication - i am sorry if you have already checked this out - antibiotics and prescript meds screw up the bodies natural balance - this is how candidas takes hold - good luck
ascend2luv 1 year ago
@ascend2luv Interesting, because I do have pro-biotics for him also KEFIR, and nystatin, the problem is always getting him to actually TAKE all these different supplements...sometimes he spits them out. as in 30 bucks just went on the floor. Frustrating sometimes. But worth the effort. Thanks. totally agree with you
kgaccount 1 year ago
@kgaccount i have the same probs with my son i cant give him pills or tablets i have crush/mix things up in food that he eats or a drink/juice - he is dead suspicious of anything new. i gave my son nystatin in a liquid form, mixing with food/drink to get him to take it. Its not ideal but it helped loads to improve things. I also eliminated excess sugar from diet. Google candidas/autism for more info
ascend2luv 1 year ago
keeping candidas under control putting lots of good bacteria into my sons body has reduced aggression, severeity of tantrums and SIBs - he has regular bowel movements now. I lost alot of faith in mainstream medicine as doctors often dismissed my sons gut problems dismissing it as part of his autism - you may find charitable organisations in usa that help with funding for supplements.
ascend2luv 1 year ago
re your mentioning "fluid" in pelvic area. If candidas grows out of balance the yeast/fungi create toxic metabolites that begin to degrade the intestinal walls leading to 'leaky gut' and inflammation. This deterioration of the intestinal walls allows the yeast by-products and other inappropriate food molecules to enter the body/bloodstream. Good luck i really think this could be a factor for jamey hugs x
ascend2luv 1 year ago
@ascend2luv FLUID IN PELVIS...why haven't any of Jamey's doctors ever mentioned this? But you caught it after I mentioned it being on his medical exam....amazing how just little things undected and dismissed can be so critical....
kgaccount 1 year ago
@kgaccount the gut/brain relationship is huge in autism- many doctors are wary of looking at the autistic gut because of what happened to andrew wakefield - see if you can get referral to a good gut doctor who is willing to investigate/treat jamey for candidas also anti inflamatories help - it could change jamey's life. if you cant get specialist help you can do alot yourself. Good luck hunny xxx
ascend2luv 1 year ago
@kgaccount candidas and parasites are linked to water retention around the pelvic region. this could account for what was seen on his medical examination. women get water retention around their menses - could be why it was said to be unusual in a male - I suspect the baths warm water eases discomfort - just my thoughts x
ascend2luv 1 year ago
Comment removed
ascend2luv 1 year ago
Comment removed
ascend2luv 1 year ago
God bless you guys for what you are doing and give you strength. May god bless the young man and what he's going through. I can't watch this and not feel proud of the two ladies in clip. The true definition of a hero is evident in this video.
AntonioAzz 1 year ago
Dear Jaime's Mom, it is hard to watch your beautiful son suffer so much. I hope that within the next decade more research( the real scientific one, not the special ed IEP stuff) will be funded to bring a remission to this issue. I hope and pray there will be a cure identified during Jamie's life time. You are wonderful & brave! Thanks for sharing. Happy Mother's Day!
TheMunchin1 1 year ago
What are the shots for?
johnny10301968 1 year ago
also, there is no way that anyone with visual, verbal, body agnosias, with Social Emotional Agnosia, with mood, anxiety, compulsive disorders, with info processing issues associated with gut, immune, metabolic disorders, with Aphasia, with Dyspraxia... NONE of them have experienced Catatonic Exciteability so can't give you insights into it even if they are dx'd with autism or ASD.
1210donna 2 years ago
what are you talking about?
kgaccount 2 years ago
I worked with a 'severely autistic' teen since he was 4. He had always had severe mood problems fluctuating between extreme exciteability, extreme defensiveness and stupor. In puberty he regressed further, self injury became almost constant, fluctuating bw extreme physical rigidity/stillness/staring, such intense agitation/hyperactivity etc. He was hospitalised, treated for Catatonic Exciteability and Stupor, began to use the toilet, dress, feed, trying to verbalise and now typing.
1210donna 2 years ago
How was he treated? What exactly did they do to "cure" this? You say he began using toilet, dressing and feeding himself, began typing...that is quite remarkable, if so, then what exactly was the medication or treatment that led to such progress?
kgaccount 2 years ago
and Catatonic stupor is FAR more commonly known of than Catatonic Excitability which has only RECENTLY been recognised and treated as the other form of Catatonia and that there are those who fluctuate between the two.
1210donna 2 years ago
Hope this link helps you distinguish Catatonic exciteability (self injury etc) verses Catatonic stupor (staring, rigid etc).
1210donna 2 years ago
I think you're an amazing Mom and so sorry all of you are going through this. Having said that, a part of me doesn't feel as alone after watching many of the video's. Many things I saw on the video's I have seen first hand with my own son who also has severe complex needs. Nick has severe autism, severe developmental delay as well as uncontrolled epilepsy. My son isn't quite as self-injurious as your son, but close sometimes. His aggression is more of an issue. Would love to chat sometime.
TheFalletta 2 years ago
@TheFalletta Yes, aggression, that is TOUGH. It's a differnt kind of stress as you're worried about other people getting hurt, as well as your own child. Not fun!! Please feel free to leave me personal message anytime...How is your son doing now? How old is he? Does he live at home?
kgaccount 1 year ago
It hurt me so much to see him wince in pain when you gave him the ativan. I just wished that I could reach out and give him a hug.
I'm glad that the SIB did stop, though. Hope you got some well needed rest too.
(((((HUGS)))))
MiraculousMoments 2 years ago 2
Thank you...I know, it sucks giving him meds for sib, I usually avoid this at all costs and use it, as the doctor advised, as an abolute LAST resort when everything else that normally re-directs him repeatedly fails and he's high risk of injurying himself or even triggering seizure activity from constantly jarring his head with his fists...receiving the hugs!
kgaccount 2 years ago
You are a great mom, and you are giving your best for Jamie. Thank you for allowing us to learn from you. I'll be praying for you.
caprockstar69 2 years ago
Current blood tests have shown no infection...He's had more medical tests that I can write here, but I still think there is something doctors haven't noticed or people reading x rays etc..didn't catch...everything moves so fast in hospitals. The error rate is high...whatever it is must be episodic because it comes and goes.what scares me is one time I leaned over a gastroenterolgoist and saw a test that was positive for my son, that the guy hadn't ever told me: it was hpylori-since eradicated
kgaccount 2 years ago
are you sure it's not
an old injury that didn heal
or infection ?
it could be a number of things !
sexiilicous1 2 years ago