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Stem Cell Therapy for Autism/Neurological Disorders in Children
Posted on 12/9/24 at 9:45 pm
Posted on 12/9/24 at 9:45 pm
Just what the title says.
My wife and I have a 4 year old son. He has been diagnosed with autism, but I'm positive, despite the doctors' lack of other diagnosis, that he has a neurological condition and other issues, including a GI issue. He also has a skin condition. All of the doctors in our town and at Ochsner, in their imminent wisdom, have assured us he's fine and that all of the tests and imaging reveal no problems.
He's not fine. He has behavioral and expressive communication issues. He speaks and acts at a 2 year old level. He still wears diapers and has no interest in potty training. He lashes out at his older sister and little brother and strikes them for no reason. He is in a school that caters to special needs, but the progress has been very slow. We have tried therapy after therapy, with the latest being Applied Behavior Analysis (ABA) which backfired because the location where he went did not apply it individually to him based on his needs (which they were aware of when they assessed him) and his behavior regressed about 4-6 months after only being there for a month.
My wife has found a physician that offers stem cell therapy using stem cells drawn from adipose tissue (hers) slowly infused intravenously to the child. We have spoken with a couple of parents who indicate that it has been helpful with their children. We have met with the physician offering it, and I am dubious. I have researched multiple studies that indicate that it might help, but there is nothing necessarily conclusive on the subject.
Has anyone used stem cell therapy on their children that have autism or a neurological condition? If so, what have been the results?
I'm posting this here for more eyes than would be on the Health/Fitness Board. Thanks for having a look and any input that you might have.
EDIT: All-thank you so much for the suggestions and the support. The OT is coming through strong.
My wife and I have a 4 year old son. He has been diagnosed with autism, but I'm positive, despite the doctors' lack of other diagnosis, that he has a neurological condition and other issues, including a GI issue. He also has a skin condition. All of the doctors in our town and at Ochsner, in their imminent wisdom, have assured us he's fine and that all of the tests and imaging reveal no problems.
He's not fine. He has behavioral and expressive communication issues. He speaks and acts at a 2 year old level. He still wears diapers and has no interest in potty training. He lashes out at his older sister and little brother and strikes them for no reason. He is in a school that caters to special needs, but the progress has been very slow. We have tried therapy after therapy, with the latest being Applied Behavior Analysis (ABA) which backfired because the location where he went did not apply it individually to him based on his needs (which they were aware of when they assessed him) and his behavior regressed about 4-6 months after only being there for a month.
My wife has found a physician that offers stem cell therapy using stem cells drawn from adipose tissue (hers) slowly infused intravenously to the child. We have spoken with a couple of parents who indicate that it has been helpful with their children. We have met with the physician offering it, and I am dubious. I have researched multiple studies that indicate that it might help, but there is nothing necessarily conclusive on the subject.
Has anyone used stem cell therapy on their children that have autism or a neurological condition? If so, what have been the results?
I'm posting this here for more eyes than would be on the Health/Fitness Board. Thanks for having a look and any input that you might have.
EDIT: All-thank you so much for the suggestions and the support. The OT is coming through strong.
This post was edited on 12/10/24 at 10:32 am
29
Posted on 12/9/24 at 9:51 pm to DownSouthJukin
I’ve seen videos where non verbal children began using words within months of stem cell treatment. But it’s just videos. No personal stories.
Posted on 12/9/24 at 9:53 pm to DownSouthJukin
Have you done a genetics test?
We did on one with our son and he has a rare gene that leads to developmental delays
We did on one with our son and he has a rare gene that leads to developmental delays
Posted on 12/9/24 at 9:54 pm to VermilionTiger
Yes. At Ochsner. Nothing genetically to explain the issues he has going on based on the tests that they provided.
Where did you have the test done? I would be interested in additional genetic testing.
Where did you have the test done? I would be interested in additional genetic testing.
This post was edited on 12/9/24 at 9:56 pm
Posted on 12/9/24 at 9:54 pm to DownSouthJukin
I am sorry to hear this as a father of a 8 month old. Wish you best of luck
Posted on 12/9/24 at 9:56 pm to GeauxZone90
Thanks, man.
It has been tough going. Especially for my wife. She is a trooper. We just want answers and/or solutions.
It has been tough going. Especially for my wife. She is a trooper. We just want answers and/or solutions.
Posted on 12/9/24 at 9:56 pm to DownSouthJukin
We found out our son had a genetic mutation, MTHFR, which greatly diminished his ability to detox. We put him on methylated b vitamins and saw a rapid increase in speech development. Once we found out he had high metal levels, we did chelation therapy and his light of awareness got brighter and brighter. He started talking more, more eye contact, etc. We found all of this out by going to a functional medicine doctor, Dr Stephanie Cave
Posted on 12/9/24 at 9:57 pm to DownSouthJukin
Lady of the Lake in Baton Rouge
It was recommended by them, so I am not 100% sure it is associated with LoL
It was recommended by them, so I am not 100% sure it is associated with LoL
This post was edited on 12/9/24 at 9:57 pm
Posted on 12/9/24 at 9:59 pm to DownSouthJukin
quote:
He's not fine. He has behavioral and expressive communication issues. He speaks and acts at a 2 year old level. He still wears diapers and has no interest in potty training. He lashes out at his older sister and little brother and strikes them for no reason. He is in a school that caters to special needs, but the progress has been very slow.
BCBA with about 15 years experience with ASD... this is autism man...im one of the few I know how enjoys working with adults and I've worked with 20 something year olds woth no verbal ability or interest in potty training.
quote:
We have tried therapy after therapy, with the latest being Applied Behavior Analysis (ABA) which backfired because the location where he went did not apply it individually to him based on his needs (which they were aware of when they assessed him) and his behavior regressed about 4-6 months after only being there for a month.
I am so sorry and pissed to hear this. ABA can be life changing, but there are more people on this state that do a bad/lazy job of it than those doing it right (I'm assuming you live in Louisiana). Don't right and individualized it's a game changer...done wrong and it can be downright traumatic.
All this to say, I haven't seen any concrete data backed evidence of stuff like this working. Autism is a wild disorder...it ebbs and flows, kid progress and regress..parents who love their kids try anything and everything and sometimes these treatments line up with progress.
I've had one mom swear essential oils were game changing... only to years later claim that ANYTHING scented caused her son physical pain and regression
Do your research, weight your options, but know your story is typical.
Posted on 12/9/24 at 9:59 pm to domesticengineer
quote:
We found out our son had a genetic mutation, MTHFR, which greatly diminished his ability to detox. We put him on methylated b vitamins and saw a rapid increase in speech development. Once we found out he had high metal levels, we did chelation therapy and his light of awareness got brighter and brighter. He started talking more, more eye contact, etc. We found all of this out by going to a functional medicine doctor, Dr Stephanie Cave
Thank you. This is helpful. He also doesn't detox. No one can give us answers as to why. All of the genetic tests came back clear.
Where did you get the chelation therapy (if you don't mind me asking)?
Posted on 12/9/24 at 10:00 pm to DownSouthJukin
God bless you and your sweet boy
Posted on 12/9/24 at 10:03 pm to scott8811
quote:
I am so sorry and pissed to hear this. ABA can be life changing, but there are more people on this state that do a bad/lazy job of it than those doing it right (I'm assuming you live in Louisiana). Don't right and individualized it's a game changer...done wrong and it can be downright traumatic.
When he went back to acting out and biting, we knew things were wrong. My wife went to meet with the head of the "school" to find out what was going on. Apparently they just lumped him in with all of the other kids there and threw his individual plan out the window, and couldn't even say why they did it. It was a terrible experience.
quote:
BCBA with about 15 years experience with ASD... this is autism man...im one of the few I know how enjoys working with adults and I've worked with 20 something year olds woth no verbal ability or interest in potty training.
Maybe that's part of it. But he had a smaller than normal head when he was born and younger and low muscle tone. He hit his benchmarks, but was behind a bit on all of them. I think there is something else there besides autism.
quote:
All this to say, I haven't seen any concrete data backed evidence of stuff like this working. Autism is a wild disorder...it ebbs and flows, kid progress and regress..parents who love their kids try anything and everything and sometimes these treatments line up with progress.
The hardest parts are the plateaus and regressions. He makes progress and then it's like we wake up one morning and it's gone.
This post was edited on 12/9/24 at 10:09 pm
Posted on 12/9/24 at 10:05 pm to SuperSaint
quote:
God bless you and your sweet boy
Thank you. He is the sweetest boy. He loves to give hugs and kisses to us. Even though his language is limited, my heart jumps every morning when he makes my wife roll down the window as they leave so he can say, "Bye Dad! I love you!" and wave out the car window.
This post was edited on 12/9/24 at 10:07 pm
Posted on 12/9/24 at 10:10 pm to DownSouthJukin
quote:
When he went back to acting out and biting, we knew things were wrong. My wife went to meet with the head of the "school"
As hard as it is to find good clinical ABA, it's 1000× harder to find quality school based... the resources just aren't there.
quote:
But he had a smaller than normal head when he was born and younger and low muscle tone.
We as a field use assessments thay have whole sections dedicated to gross motor cause muscle tone and control just isn't where it needs to be woth these kiddos
quote:
think there is something else there besides autism.
While I still say your story is typical for ASD, I also doubt your wrong...there are a ton of comorbidities w ASD... It often occurs w ASD, eating disorders, sleep disorders, sensory processing disorders etc.
I've seen some pickiness severe enough to cause nutrition deficits that is bound to lead to additional health and behavioral problems.
Posted on 12/9/24 at 10:12 pm to DownSouthJukin
The direct answer to your question is no, I have no experience with stem cells treatments as a possible treatment for whatever your son has.
I’m only compelled to reply as my oldest son showed developmental delays at about 6 months, when he didn’t sit up and wouldn’t try to stop himself from falling over if you sat him up. He would smile while falling and wouldn’t put his arm out to break the fall. A hot shot neurologist in New Orleans recognized it immediately and advised that it wasn’t going away.
For the next ten years we had my son examined and tested for every condition and possible treatment known. He was the subject of interdisciplinary round tables at Houston Children’s, Mao Clinic and Johns Hopkins. We did every genetic and endocrine test available. He’s had more scans than anyone I’ve ever met. We spent every cent we ever saved looking for a definitive diagnosis and possible treatment. We tried hyperbaric treatments and more than a dozen different kinds of medications and supplements. They seemed to help for a while, maybe.
The lead at Johns Hopkins advised us to stop looking and focus on dealing with what they loosely diagnosed as cerebral palsy and focus on providing the best quality of life that we could provide. It was what we needed to be told at that time.
As I type this I’m sitting next to my son, while my other children are in colleges all over the country. He’s happy to hang out and watch YouTube videos on his iPad. He isn’t able to speak fluently but he communicates pretty darn well. We hang out together every night. He’s in his 20s.
You shouldn’t stop looking for an explanation or a treatment until you are ready to stop. I just suggest that when you find out everything that you can, shift to quality of life. The only actual advice I have is work on keeping your marriage and family together. The rate of divorce in the special needs community is way too high. It can be stressful.
I really hope the stem cells do some good. There are breakthroughs every day. Let us know if the stem cells help.
I’m only compelled to reply as my oldest son showed developmental delays at about 6 months, when he didn’t sit up and wouldn’t try to stop himself from falling over if you sat him up. He would smile while falling and wouldn’t put his arm out to break the fall. A hot shot neurologist in New Orleans recognized it immediately and advised that it wasn’t going away.
For the next ten years we had my son examined and tested for every condition and possible treatment known. He was the subject of interdisciplinary round tables at Houston Children’s, Mao Clinic and Johns Hopkins. We did every genetic and endocrine test available. He’s had more scans than anyone I’ve ever met. We spent every cent we ever saved looking for a definitive diagnosis and possible treatment. We tried hyperbaric treatments and more than a dozen different kinds of medications and supplements. They seemed to help for a while, maybe.
The lead at Johns Hopkins advised us to stop looking and focus on dealing with what they loosely diagnosed as cerebral palsy and focus on providing the best quality of life that we could provide. It was what we needed to be told at that time.
As I type this I’m sitting next to my son, while my other children are in colleges all over the country. He’s happy to hang out and watch YouTube videos on his iPad. He isn’t able to speak fluently but he communicates pretty darn well. We hang out together every night. He’s in his 20s.
You shouldn’t stop looking for an explanation or a treatment until you are ready to stop. I just suggest that when you find out everything that you can, shift to quality of life. The only actual advice I have is work on keeping your marriage and family together. The rate of divorce in the special needs community is way too high. It can be stressful.
I really hope the stem cells do some good. There are breakthroughs every day. Let us know if the stem cells help.
Posted on 12/9/24 at 10:14 pm to scott8811
quote:
scott8811
Thank you for the input. I greatly appreciate it.
Posted on 12/9/24 at 10:18 pm to DownSouthJukin
Anytime baw.... if you'd like to reach out outside this board I'd be happy to give you some contact info.... I've been doing this a long time, seen a lot of ABA and autism and have so much respect for what you parents go through w this dx... and further can't imagine the spin cycle yall get put through.
Posted on 12/9/24 at 10:19 pm to TBoy
quote:
cerebral palsy
That's what I am afraid and have been afraid that part of it is, but has not been diagnosed. And we have tried tons of therapy, including hyperbaric. I'm at the point where we may just buy a chamber.
quote:
The only actual advice I have is work on keeping your marriage and family together. The rate of divorce in the special needs community is way too high. It can be stressful.
It is stressful, but we know that we have to stay united for him, us, and our other children.
quote:
As I type this I’m sitting next to my son, while my other children are in colleges all over the country. He’s happy to hang out and watch YouTube videos on his iPad. He isn’t able to speak fluently but he communicates pretty darn well. We hang out together every night. He’s in his 20s.
You sound like a great dad. If that's where I am in 16 years, I will be more than fine with it. I just want to do everything that we can for him.
Posted on 12/9/24 at 10:21 pm to DownSouthJukin
We did chelation therapy using pills prescribed by Dr Cave. There is a compounding pharmacy that makes them to order.
Your doctors may not have tested for the MTHFR mutation. This condition is not taken seriously by all doctors because it is not consistent in the way it affects carriers. Dr Cave is a specialist in this mutation.
When you get an appointment with Dr. Cave, she will sit down with you for two hours at least, going through everything regarding your child. Then she will decide what tests to run which will include urine, blood and any genetic test that may pop up given the information you give her.
She treats the entire body, she doesn’t just look for symptoms to attach a prescription to. She will review your lab results with you in fine detail and explain what you’re lacking, what that causes & how to fix it… another thorough 1-2 hour appointment.
Your doctors may not have tested for the MTHFR mutation. This condition is not taken seriously by all doctors because it is not consistent in the way it affects carriers. Dr Cave is a specialist in this mutation.
When you get an appointment with Dr. Cave, she will sit down with you for two hours at least, going through everything regarding your child. Then she will decide what tests to run which will include urine, blood and any genetic test that may pop up given the information you give her.
She treats the entire body, she doesn’t just look for symptoms to attach a prescription to. She will review your lab results with you in fine detail and explain what you’re lacking, what that causes & how to fix it… another thorough 1-2 hour appointment.
Posted on 12/9/24 at 10:22 pm to DownSouthJukin
I pray that God gives you and your wife the strength to be able to figure this out
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