re: Stem Cell Therapy for Autism/Neurological Disorders in Children

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Where did you have the test done? I would be interested in additional genetic testing.

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Nothing wrong with looking into further genetic testing. Its your little guy, do what you feel you have to.

BUT, in the meantime and since it could always be that he is indeed somewhere on the wide spectrum of autism, the available data shows that one of the (if not THE Only) best thing you can do to improve longterm function and ability is to get him in counseling/therapy/support as early on as possible.

Here are a few resources from google to look into:

- Autism Speaks: A large organization that offers an online support group, a resource guide, and a 100 Day Kit for families of young children

- Center for Parent Information and Resources: Offers trainings in all 50 states to help parents of children with autism

- The Autism Community in Action (TACA): A group of families that provides support, resources, and information to help families with autism

- Aspergers/Autism Network (AANE): Offers online support groups for adults with autism, both free and membership-supported

- Ernie EIs Els Center of Excellence: Offers online social groups for adults with autism, including a mental health support group

- Meetup.com: Lists groups for autistic adults, many of which meet virtually
Program for the Education and Enrichment of Relational Skills (PEERS®): A 16-week social skills intervention for adolescents with autism

- Wrong Planet Forums: An online community for individuals with autism and their families

- MyAutismTeam: A social network that connects parents of children with autism



I cant speak for all of these but Autism Speaks is a great start.


Good luck, buddy. For you, your wife, and your little man. I sincerely hope yall find the best help for him. Regardless, he's still your little man no matter what.

If it's safe, then why not try it. Be cautiously optimistic though.

But 4 years old...you may want to give it a bit more time. Boys mature slower. My son may be on the spectrum and he didn't really get potty training down until just before he turned 5. Same as you - he refused to do #2 and was constantly crapping his pants. He also acted much younger than his age IMO.

From 4 to almost 6 years old was very difficult. Something clicked after he turned 6 and he matured a ton and it has been a lot smoother since then. So like I said, he may just need more time to mature. Hang in there.

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Sometimes I think they just call it autism when they don’t know what it is.

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That's the feeling I get. I think he does have some autism. But I don't think that's the "answer" to everything. My personal opinion is that he suffered some insult (blood/nutrition/oxygen deprivation) in utero or maybe even during birth. I remember the head measurements from when my wife was pregnant and his head measuring smaller than normal and the OB/GYN just blowing it off like it was nothing.

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Steps Behavior Solutions
985-502-8403
Therese is really great..left an old post to do her own thing providing in home/school based care on an individual level.

I don't have any clinics in your area, but if you'd like to reach out about literally anything related to this..second opinion, validation, vent whatever... shoot me something at XXXXXXXXXXX

I know this will feel like a consolation prize, but looking at all these posts, yall are doing an amazing job!

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Thank you. I will be reaching out.

It doesn't feel like a consolation prize. All of this information is helpful and knowing that we aren't the only ones who are I this position and have gone down the same paths as others is extremely helpful.

My wife handles the vast majority of the issues and the day-to-day. I work a lot. She has taken us down many of the paths that have been suggested here, and sometimes I go grudgingly because my analytical mind can't grasp that maybe there isn't one or a couple "answers" to the problem and it's a multi-discipline approach that is needed. Some of these approaches have worked, others haven't. But we are willing to try new approaches, and I am extremely encouraged by this thread. It's not that we have ever been discouraged, but sometimes it feels like we are wandering around in a dark room looking for answers, and sometimes those answers only come when we run into other parents who have experienced the same thing. Thank you to all.

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domesticengineer

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Thank you!

We have one physician here in town that is helpful, but is limited in what she can do, so we are stuck with the regular treating physicians. We also visited one physician in Atlanta. She and I did not gee-haw. I asked a lot of questions and she basically told me that I just needed to accept he was autistic and there were no other answers t the questions I had.

As you can tell from my posts, we are open to a lot. I am looking into Dr. Cave. I will also look at the Holy Basil. He does have dairy/nut/gluetn allergy, so we have removed that from his diet and it has helped. I didn't;t know about the Yuka app, but will download it. Thank you!

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If it's safe, then why not try it. Be cautiously optimistic though.

But 4 years old...you may want to give it a bit more time. Boys mature slower. My son may be on the spectrum and he didn't really get potty training down until just before he turned 5. Same as you - he refused to do #2 and was constantly crapping his pants. He also acted much younger than his age IMO.

From 4 to almost 6 years old was very difficult. Something clicked after he turned 6 and he matured a ton and it has been a lot smoother since then. So like I said, he may just need more time to mature. Hang in there.

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He will turn 5 early next year.

My thought is this: if we can afford it, and it will do no harm, then I am for it. I have seen/read/watched lots of info on stem cell therapy and sometimes it works. There is one interview with a couple on YouTube that participated in a study at Duke, however, who had a bad outcome and their child went from bad to worse after the treatment. That would be a very difficult pill to swallow as a parent.

Your post gives me great hope. Thank you.

you may be interested in the research that DR Sabine Hazan is doing. shes looking into gut microbiome and how it relates to various health outcomes including autism.

shes even going as far as to using fecal transplant from parents into children to see how it affects the child with autisms behavior/diagnosis





ETA: my wife is a pediatric OT and deals with kids on the spectrum. she always tells me how parents switch to ABA from OT thinking it will help, but ABA doesnt fix the underlying issues. and most of the time the kid will regress and end up coming back to her for advice/services. ABA is basically just a reward system. it doesnt get to the root cause. it also pisses a lot of the OT community because the ABA people call themselves therapist but they dont have nearly the education that these OTs have.

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you may be interested in the research that DR Sabine Hazan is doing. shes looking into gut microbiome and how it relates to various health outcomes including autism.

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Thank you. I will watch that this evening. We have researched this issue, and have done a lot to try to fix his gut, but as of yet nothing has been totally successful.

Very common for autism and GI to have a link. Would highly recommend some research and maybe some home experimentation with diet. Research specific carbohydrate diet among other things. Make sure to give some time to things you are trying.

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Murray

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Thank you. You did everything you knew to do. That's all you can do.

What kills me is when we did the ABA therapy and they took so much time to assess him for it, then totally ignored the plan that they put together for him and he regressed so much in such a short amount of time. I knew it was bad the second week when I went with my wife to pick him up and he came out hitting and biting at the teachers. He hadn't done that for months. Then when my wife went to talk to them about it they could not tell her why they totally ignored their own assessment and treatment plan. It was a shock to the system. All they wanted was our money. And they were highly recommended. So I am obviously now a little more skeptical when it comes to some of the treatments we research or that are suggested to us.

We are doing the same as you in going down paths that may be unknown and researching everything (and have been). I remember posts on this board where many parents spoke up about their children that are non-verbal, so I thought it might be a good place to ask the question about stem cell therapy.

Thank you.