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Message
re: Stem Cell Therapy for Autism/Neurological Disorders in Children
Posted on 12/9/24 at 10:23 pm to BrohemAlem11
Posted on 12/9/24 at 10:23 pm to BrohemAlem11
quote:
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.
I'll keep that in mind.
As you can imagine, I'm here asking questions because we aren't getting answers from anyone. We live in South Mississippi and there are some great education/learning resources here for children in my son's position (USM's Children's Center and The Dubard School, for instance), but the medical side and therapy side of things outside of that are very lackluster and sometimes feel like, (a) they don't care to find a solution, or (b) if they act like they do care, it's a money grab playing on parents' desperation.
We are long on questions and short on answers.
This post was edited on 12/10/24 at 7:39 am
Posted on 12/9/24 at 10:24 pm to DownSouthJukin
It’s hard to really admit it because it’s a tough situation, but you’re doing what you need to be doing. You’re a great dad and you and your wife are kicking arse
My little boy is 2 and he’s a failure to thrive for basically everything. He was diagnosed with autism, but we are seeking a second opinion. He has a rare gene that has a list of “typicals”. We just ruled out a heart issue thankfully.. big sigh of relief
He’s an awesome and sweet boy, but his communication skills are probably that of a 1 year old.
He’s in speech therapy twice a week and physical therapy once a week
There’s a behavioral instructor that comes once a week and works with him on tasks as well.
I really hope he’s going to be able to function in society because I worry about him after I can’t help anymore. That’s what keeps me up at night
My little boy is 2 and he’s a failure to thrive for basically everything. He was diagnosed with autism, but we are seeking a second opinion. He has a rare gene that has a list of “typicals”. We just ruled out a heart issue thankfully.. big sigh of relief
He’s an awesome and sweet boy, but his communication skills are probably that of a 1 year old.
He’s in speech therapy twice a week and physical therapy once a week
There’s a behavioral instructor that comes once a week and works with him on tasks as well.
I really hope he’s going to be able to function in society because I worry about him after I can’t help anymore. That’s what keeps me up at night
Posted on 12/9/24 at 10:24 pm to domesticengineer
quote:
our doctors may not have tested for the MTHFR mutation.
Maybe not. I will look and ask.
Thank you for this information. I am going to discuss Dr. Cave with my wife.
Posted on 12/9/24 at 10:25 pm to DownSouthJukin
All seriousness, have you tried an anti-parasitic drug? Parasites can do some crazy stuff to the human body. Not insinuating it will “cure” his autism, but it might help.
Posted on 12/9/24 at 10:26 pm to TBoy
quote:
TBoy
You’re a damn hero, man. I really needed to read that. Thank you
Posted on 12/9/24 at 10:27 pm to DownSouthJukin
quote:
DownSouthJukin
Good luck, brother
Posted on 12/9/24 at 10:29 pm to VermilionTiger
quote:
VermilionTiger
It sounds like you are experiencing a lot of what we are going through.
My son has PT, OT, Speech Therapy, etc. every week. We have sought second and third opinions. It has been extremely frustrating.
quote:
I really hope he’s going to be able to function in society because I worry about him after I can’t help anymore. That’s what keeps me up at night
I'm an older dad (mid 40's). I am terrified of what will happen to him when me and his mother are not around anymore. I keep emphasizing our little family unit to my wife and kids. We are even about to move my daughter from her current school to another one partially because the new school will make accommodations for my son when and if he can get there with her. I want his siblings to help look out for him.
This post was edited on 12/9/24 at 10:35 pm
Posted on 12/9/24 at 10:32 pm to mytigger
quote:
All seriousness, have you tried an anti-parasitic drug? Parasites can do some crazy stuff to the human body. Not insinuating it will “cure” his autism, but it might help.
I think we have looked into that and tested him for it. He has a skin condition that I think is fungal so he has to take nystatin some times.
Posted on 12/9/24 at 10:33 pm to SanJoseTigerFan
quote:
I pray that God gives you and your wife the strength to be able to figure this out
Thanks, baw
This post was edited on 12/9/24 at 10:34 pm
Posted on 12/9/24 at 10:36 pm to DownSouthJukin
I sincerely wish you all the best. Your story sounds so similar to ours. I always had the same feeling of, “there’s more to this, it’s not just a spectrum disorder”.
It is terrifying to get the diagnosis only because it feels like you’re kicked off a cliff afterwards with absolutely no information/parachute from the doctors. Keep following your gut!
It is terrifying to get the diagnosis only because it feels like you’re kicked off a cliff afterwards with absolutely no information/parachute from the doctors. Keep following your gut!
Posted on 12/9/24 at 10:39 pm to DownSouthJukin
Nothing to add but I feel for ya man. Nothing we want more as parents to see our kids happy and healthy. Keep your chin up and keep looking for answers.
Posted on 12/9/24 at 10:42 pm to DownSouthJukin
I actually have a tangential colleague that practices out of South Mississippi around the coast to be specific. She's very experienced, passionate and compassionate. Last I spoke she was starting her own buisness. Therese Ducci is her name. I'll try and find the name of her new clinic and post it here
Posted on 12/9/24 at 10:49 pm to DownSouthJukin
quote:
want his siblings to help look out for him.
This is a great, smart and instinctive move and I promise I don't say this to sound judge, but please look after his siblings mental well being.
I see so much honest pure I will protect you with everything I have love come from older siblings of my clients, but at the end of the day they're kids themselves. This is a family diagnosis... find them a good counselor to talk to, some good outlets just for them etc. But their brother will be blessed to have them for sure
Posted on 12/9/24 at 10:52 pm to DownSouthJukin
you have my prayers and my best wishes
he's lucky to have a father who loves him as much as you do
he's lucky to have a father who loves him as much as you do
Posted on 12/9/24 at 10:54 pm to BrohemAlem11
quote:
Therese Ducci is her name. I'll try and find the name of her new clinic and post it here
Much appreciated.
Posted on 12/9/24 at 11:01 pm to BrohemAlem11
quote:
This is a great, smart and instinctive move and I promise I don't say this to sound judge, but please look after his siblings mental well being.
I see so much honest pure I will protect you with everything I have love come from older siblings of my clients, but at the end of the day they're kids themselves. This is a family diagnosis... find them a good counselor to talk to, some good outlets just for them etc. But their brother will be blessed to have them for sure
Oh yeah-I don't push it on them, especially since they're not all in school together, yet. I do try to get them to understand that when he lashes out and hits them that he loves them and he can't help it sometimes and he does not mean to hurt them. He always apologizes to them when he is told to and gives them a hug and a kiss, and you can tell that he is disappointed in himself.
We keep an eye on the other two and I try to take them all individually to do something occasionally so it's not like we are all stuck on each others hips all of the time. They are all individual children to us, and we try to give them each their own individual attention and time, too.
Posted on 12/9/24 at 11:06 pm to domesticengineer
quote:
domesticengineer
Thank you. We are not going to stop asking questions and looking for answers. When we were told "autism" it was like: "here ya go... see ya later." It just seems to me there is a lot more to it than that. He hasn't hardly had a solid poop in 4 years. But the GI docs say that's fine. He has skin infections that never clear. But the dermatologist says that its fungal and gives nystatin that only works part of the time. The neurologist at Ochsner said everything on his brain scans looks normal-but we know he has neurological deficits (thanks for the one sentence e-mail and no follow-up visit or call, doc). The geneticist says there are no genetic issues. So it's just "autism." But it's not.
This post was edited on 12/9/24 at 11:16 pm
Posted on 12/9/24 at 11:09 pm to DownSouthJukin
Sorry to hear of your situation. We're raising a grandson in the autism spectrum and early recognition and treatment helped immensely. His is called Sensory Intergration Dysfunction which in his case anyway is very high function.
Part of the issue with parents is how to discipline them. We ultimately chose to do so like we did with our own children and I think it was for the best. They need to live by the same rules and expectations as the rest of us, so there was no sense in overly pampering him or letting things slide.
I hope you can find treatments to help your son. We're fortunate in that I think he can make it on his own without us one day. You may not have arrived at that stage yet, but you will soon if you haven't. He may never get to that level, but don't assume it.
The experts made all the difference in the case of our grandson. Trust their evaluations and don't let anyone dissuade you or try to rob you of his progress victories along the way. Some people will say some of the meanest shite as if they know the facts. They don't. All the best to you brother.
Part of the issue with parents is how to discipline them. We ultimately chose to do so like we did with our own children and I think it was for the best. They need to live by the same rules and expectations as the rest of us, so there was no sense in overly pampering him or letting things slide.
I hope you can find treatments to help your son. We're fortunate in that I think he can make it on his own without us one day. You may not have arrived at that stage yet, but you will soon if you haven't. He may never get to that level, but don't assume it.
The experts made all the difference in the case of our grandson. Trust their evaluations and don't let anyone dissuade you or try to rob you of his progress victories along the way. Some people will say some of the meanest shite as if they know the facts. They don't. All the best to you brother.
Posted on 12/9/24 at 11:21 pm to DownSouthJukin
I am so sorry your family is dealing with this, as a father of two kids under 4 I simply cannot imagine the difficult challenges this has presented to you
I apologize if this has been done or already been mentioned but make sure his hearing has been thoroughly checked. I know it probably sounds like a ridiculous thing to say and it certainly won't be some cure all but a lot of people don't realize how badly hearing issues can hamper development and cause personality issues (imagine how frustrating it would be to be a kid and not be able to understand what adults are trying to tell you and the adults don't know you can't understand)
I wouldn't even think of this but I saw it significantly delay the development of a child before and so I always think of it. The same child has autism though I always wonder if his hearing had been right from the beginning if that diagnosis would've happened
Doesn't hurt to check
I apologize if this has been done or already been mentioned but make sure his hearing has been thoroughly checked. I know it probably sounds like a ridiculous thing to say and it certainly won't be some cure all but a lot of people don't realize how badly hearing issues can hamper development and cause personality issues (imagine how frustrating it would be to be a kid and not be able to understand what adults are trying to tell you and the adults don't know you can't understand)
I wouldn't even think of this but I saw it significantly delay the development of a child before and so I always think of it. The same child has autism though I always wonder if his hearing had been right from the beginning if that diagnosis would've happened
Doesn't hurt to check
This post was edited on 12/9/24 at 11:22 pm
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