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Started By
Message
re: Stem Cell Therapy for Autism/Neurological Disorders in Children
Posted on 12/10/24 at 10:26 am to DownSouthJukin
Posted on 12/10/24 at 10:26 am to DownSouthJukin
My son had similar symptoms when he was younger but has "grown out of them". I got the run around from doctors as far as diagnosis but was able to get him speech therapy and aba therapy. It helped him a small bit but he still couldn't (or wouldn't) speak. I was advised by another parent to read a book called Healing the New Childhood Epidemics and there is a tiny section that mentions food additives. This led me to read a book called Fed Up
We discovered that certain food additives were causing very specific and weird behaviors. I removed them immediately and the behaviors vanished. I have had doctors argue with me that I am wrong and food has nothing to do with behavior. So I tested it after one of these appointments and shortly after eating the problematic food he displayed the behavior. He hadn't displayed the behavior at all for a month since I removed the foods.
This then led us to explore the gluten free diet which didn't work completely for his G.I. issues so we took it a step further and tried a diet called "The Specific Carbohydrate Diet" which was a game changer. Solid stools for the first time in years. There are some really good resources out there to walk you through it but it is still a huge commitment. I went on the diet with him just to help him not feel left out. Even with all the extra work, if it meant my son could lead a mostly normal life it was worth all the extra effort. He followed the diet religiously for over5 years until middle school. He then would cheat a little vbit at events and slowly moved back to eating regular foods. He still doesn't like fast foods (he feels terrible) and can't eat a lot of dairy but has a pretty normal (if not healthier than most).
We also saw Stephanie Cave and did everything she recommended but it wasn't until we started the diet that we really started to see significant improvement. My son has graduated from high school and is in a 2 year college. He has severe ADHD which he controls we meds but other than that he is doing great.
We discovered that certain food additives were causing very specific and weird behaviors. I removed them immediately and the behaviors vanished. I have had doctors argue with me that I am wrong and food has nothing to do with behavior. So I tested it after one of these appointments and shortly after eating the problematic food he displayed the behavior. He hadn't displayed the behavior at all for a month since I removed the foods.
This then led us to explore the gluten free diet which didn't work completely for his G.I. issues so we took it a step further and tried a diet called "The Specific Carbohydrate Diet" which was a game changer. Solid stools for the first time in years. There are some really good resources out there to walk you through it but it is still a huge commitment. I went on the diet with him just to help him not feel left out. Even with all the extra work, if it meant my son could lead a mostly normal life it was worth all the extra effort. He followed the diet religiously for over5 years until middle school. He then would cheat a little vbit at events and slowly moved back to eating regular foods. He still doesn't like fast foods (he feels terrible) and can't eat a lot of dairy but has a pretty normal (if not healthier than most).
We also saw Stephanie Cave and did everything she recommended but it wasn't until we started the diet that we really started to see significant improvement. My son has graduated from high school and is in a 2 year college. He has severe ADHD which he controls we meds but other than that he is doing great.
This post was edited on 12/10/24 at 10:30 am
1
Posted on 12/10/24 at 10:27 am to Slagathor
quote:
Slagathor
Thank you so much, and thank you for stepping up for your brother.
Posted on 12/10/24 at 10:33 am to Oldfart102
quote:
Oldfart102
Thank you. We are working on his gut issues, have him on a gluten/dairy/nut free diet, and keep him away from food dyes. I had not heard of the Specific Carbohydrate Diet, but I am going to look into it this evening. Anything to help him is what we want to do, and it sounds like y'all had great success with this.
Posted on 12/10/24 at 10:37 am to DownSouthJukin
Awesome reading through this thread. I'll share my story below.
My son just turned 3 in November. My wife and I had several miscarriages prior to him, and were basically giving a less than 1% chance to conceive naturally. Well after 3 failed IUI's, my wife found out she was pregnant with him. Quite the miracle in our eyes. At 8 weeks, we decided to go ahead with genetic testing and found out he has XYY syndrome or Jacob's syndrome. This carries a few different things with it, it's not down syndrome or like it. Doctor says he will more than likely be very tall. With the XYY, it brings a host of possible delays, disorders, etc. that he will be more susceptible to.
We started doing Speech therapy in January after he turned 2 as he was already slightly delayed speech-wise. We are currently in the process of hopefully getting an Autism diagnosis to move forward and get access to more services. My wife and I are about 99% positive he has it. We've had a speech regression this past year even though he was attending therapy. Behavior issues (random hitting, etc.) have grown as well. He started 3k/early intervention at our local school and hopefully that helps some. Sleep is awful for us and for him, our youngest just turned 2 (13 months apart
) and he sleeps on his own, through the night in his big boy bed. We have a difficult time getting him to go to sleep and stay asleep, usually wakes up 1-2 times a night wide awake and the process starts over again. He can be such a loving kid, but will snap in a second almost randomly at times.
I appreciate getting to read through this thread so far, gave me some new ideas things to try. I've recently looked into the GI issues, because I've seen some things that might explain his sleep and behavior issues that stem from gluten/milk.
My son just turned 3 in November. My wife and I had several miscarriages prior to him, and were basically giving a less than 1% chance to conceive naturally. Well after 3 failed IUI's, my wife found out she was pregnant with him. Quite the miracle in our eyes. At 8 weeks, we decided to go ahead with genetic testing and found out he has XYY syndrome or Jacob's syndrome. This carries a few different things with it, it's not down syndrome or like it. Doctor says he will more than likely be very tall. With the XYY, it brings a host of possible delays, disorders, etc. that he will be more susceptible to.
We started doing Speech therapy in January after he turned 2 as he was already slightly delayed speech-wise. We are currently in the process of hopefully getting an Autism diagnosis to move forward and get access to more services. My wife and I are about 99% positive he has it. We've had a speech regression this past year even though he was attending therapy. Behavior issues (random hitting, etc.) have grown as well. He started 3k/early intervention at our local school and hopefully that helps some. Sleep is awful for us and for him, our youngest just turned 2 (13 months apart
) and he sleeps on his own, through the night in his big boy bed. We have a difficult time getting him to go to sleep and stay asleep, usually wakes up 1-2 times a night wide awake and the process starts over again. He can be such a loving kid, but will snap in a second almost randomly at times. I appreciate getting to read through this thread so far, gave me some new ideas things to try. I've recently looked into the GI issues, because I've seen some things that might explain his sleep and behavior issues that stem from gluten/milk.
Posted on 12/10/24 at 10:37 am to DevilDagNS
quote:
DevilDagNS
Thank you!
Posted on 12/10/24 at 10:43 am to ChargerDog91
quote:
ChargerDog91
Early intervention for us has been extremely helpful, but like your son, sometimes it's two steps forward and one step back, and there is no explanation for it. When he was just a toddler, he repeated back "I love you" relatively early on. I think he he said it the earliest out of all of our children. He also said "mama" and "daddy" just as early as the other children. But then one day, it was gone. There's just no rhyme or reason to it, which makes it extremely frustrating.
Fortunately, out of the three kids, our 4 year old sleeps more and doesn't get up, despite me thinking he probably has some sleeping difficulty due to his nasal issues.
We had 3 in under 3 years, so I feel your pain regarding stacking them in.
This post was edited on 12/10/24 at 12:11 pm
Posted on 12/10/24 at 10:48 am to DownSouthJukin
Thank you! His name is Daniel Kalb at cool springs family medicine.
Posted on 12/10/24 at 11:30 am to DownSouthJukin
quote:
Your post gives me great hope.
You and your wife's jobs are to be an advocate for him. He can't and he needs you to protect him from people who don't understand him.
Most therapeutic schools won't take him until he is 12. We took our son the day he turned 12. He made a lego airplane on the trip up there that I hang from my work computer. It serves a constant reminder of where he was and all the hard work he's done to get where he is now.
Posted on 12/10/24 at 11:46 am to DownSouthJukin
My son just turned 6 this past Sunday. He was diagnosed with autism when he was 2. He has many of the same tendencies as your son. I will say this though, just hang in there. My son took a huge leap in his speech in this past year along with literally waking up one day and was basically potty trained. It was the damndest thing. He'll still have the occasional accident during the night, but he's 6 -- it happens. He still lashes out at his little brother for really no reason as well, so we are trying to see what we can do for him in that regard. We haven't done any type of therapy other than ST and OT, but I'm hoping he ages out of the whole lashing out thing. Best of luck to you and your family. Again, just hang in there because progress/improvement can happen overnight.
This post was edited on 12/10/24 at 11:50 am
Posted on 12/10/24 at 12:01 pm to Pezzo
quote:
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.
I mean yes and no. Yes it's based on reinforcement, but it's a whole data driven behavioral therapy and when done right very well recognized as an effective therapy for people on the spectrum.
Also, BCBA is a master's level credential that requires intense coursework, 2,000 fieldwork hours and passing a very tough board exam. We're on the same level as OT's...fwiw I work along side an amazing OT... when they collaborate ABA and OT work VERY well together.
Posted on 12/10/24 at 12:01 pm to DownSouthJukin
quote:
DownSouthJukin
It's definitely figure it out as you go. It's also our first kid, so we are figuring it out as we go while also figuring out parenting.
Makes for some tough times, but fun times. Constantly figuring out what's normal/not normal. It's tough mentally too, he says mama all the time, but I haven't heard daddy from him in over a year. I know he loves me, just want to hear it.
Potty training is hit or miss. He was doing really well peeing, but he's regressed the last few weeks. Still in diapers and don't see that changing for a bit.
We've got him on Zyrtec daily and a nasal spray. He snored for awhile at about 2. Doctor recommended Zyrtec for allergies (pet dander/egg) and nasal spray to help with snoring. Both have helped generally speaking with some sleep/allergy stuff, but he still gets bad eczema occasionally and drool/sleep issues.
Just got the official diagnosis for Autism back. Relieved a bit.
Posted on 12/10/24 at 12:19 pm to DownSouthJukin
Late to the party and didn’t read everything but here goes….
Our daughter is18, a senior in high school and has autism and adhd. We diagnosed at 3.5. She missed milestones, slept terribly, was difficult to potty train, and was a hitter.
She also has low muscle tone and GI issues. She has eoseniphilic esophagitis which is essentially when white blood cells attack your esophagus. She would complain that her tummy hurts but would be rubbing her chest.
We did special needs pre k, special needs public school (GA), ABA, CBT, psychiatrist, play therapy, therapists, group therapy. Also did couples therapy because this shite is hard.
Best way I can describe my daughter is that she is consistently inconsistent. She lags about 2-3 years behind socially and emotionally.
It’s been a rough ride. She is finishing high school because we have dragged her and she wants to go to college an hour away. Will she make it? Who knows? But we need to let her go and fail and if she ends up back at home so be it. She is maddening,self-centered and sees people as objects and transactional. But her mom and I love her to death.
There are days I wish it away and wished I had a “normal” child. At the same time, she has made me a better person and has taught me patience.
No solutions here as we threw everything at this including the kitchen sink. Make sure you don’t neglect your other kids. Make specific time for them. Make sure you tag team with your wife and walk away when frustrated to collect your thoughts and calm down. Make sure you spend couple time, you need it.
Our daughter is18, a senior in high school and has autism and adhd. We diagnosed at 3.5. She missed milestones, slept terribly, was difficult to potty train, and was a hitter.
She also has low muscle tone and GI issues. She has eoseniphilic esophagitis which is essentially when white blood cells attack your esophagus. She would complain that her tummy hurts but would be rubbing her chest.
We did special needs pre k, special needs public school (GA), ABA, CBT, psychiatrist, play therapy, therapists, group therapy. Also did couples therapy because this shite is hard.
Best way I can describe my daughter is that she is consistently inconsistent. She lags about 2-3 years behind socially and emotionally.
It’s been a rough ride. She is finishing high school because we have dragged her and she wants to go to college an hour away. Will she make it? Who knows? But we need to let her go and fail and if she ends up back at home so be it. She is maddening,self-centered and sees people as objects and transactional. But her mom and I love her to death.
There are days I wish it away and wished I had a “normal” child. At the same time, she has made me a better person and has taught me patience.
No solutions here as we threw everything at this including the kitchen sink. Make sure you don’t neglect your other kids. Make specific time for them. Make sure you tag team with your wife and walk away when frustrated to collect your thoughts and calm down. Make sure you spend couple time, you need it.
Posted on 12/10/24 at 12:28 pm to ChargerDog91
I'll share a quick story on him.
Our son gets frustrated when he tries to tell me or my wife something and we don't understand him. He will only say it once or twice and you can tell that he is disappointed a lot of the time when we don't understand. I think our inability to understand his more complex communication and his disappointment that we don't understand him causes him to remain in his simple communication box. So it's a harsh cycle for both of us.
However, when you do understand him or his longer "sentences," he gets so excited he grins until his eyes are mostly closed and gets to the point of nearly hyperventilating. My dad (his namesake), who has some cognitive health problems, understood something my son said on the telephone the other day and my son got so excited that he couldn't hardly communicate anymore. The other night he asked me to lay down with him ("Dad, lay down.") while he went to sleep and he patted the bed next to him. So I laid down with him. He pulled the sheets and blanket up under his chain and he smiled as big as he could and started breathing rapidly with excitement.
There are little victories. I know he knows what's going on. I know he's more intelligent than he appears and acts. I know some things are holding him back. I just want to do everything that we can do to remove all obstacles to his development. This thread has been extremely helpful, if not cathartic. Thank you.
Our son gets frustrated when he tries to tell me or my wife something and we don't understand him. He will only say it once or twice and you can tell that he is disappointed a lot of the time when we don't understand. I think our inability to understand his more complex communication and his disappointment that we don't understand him causes him to remain in his simple communication box. So it's a harsh cycle for both of us.
However, when you do understand him or his longer "sentences," he gets so excited he grins until his eyes are mostly closed and gets to the point of nearly hyperventilating. My dad (his namesake), who has some cognitive health problems, understood something my son said on the telephone the other day and my son got so excited that he couldn't hardly communicate anymore. The other night he asked me to lay down with him ("Dad, lay down.") while he went to sleep and he patted the bed next to him. So I laid down with him. He pulled the sheets and blanket up under his chain and he smiled as big as he could and started breathing rapidly with excitement.
There are little victories. I know he knows what's going on. I know he's more intelligent than he appears and acts. I know some things are holding him back. I just want to do everything that we can do to remove all obstacles to his development. This thread has been extremely helpful, if not cathartic. Thank you.
This post was edited on 12/10/24 at 12:31 pm
Posted on 12/10/24 at 12:59 pm to Boss
quote:
There are days I wish it away and wished I had a “normal” child.
We've all been there. Our son is intelligent and there have been times my wife and said out loud it would be nice if he had a sub 80 IQ so he could live at home with us and bag groceries at Publix during the day.
quote:
She is finishing high school because we have dragged her and she wants to go to college an hour away. Will she make it? Who knows?
Children with poor executive functioning is another issue you don't consider until they get older. It's really a difficult thing to teach. I want to send our son away to college, but I'm afraid he'd not remember to go to class, eat, take his meds, take a bath, etc. Where do you draw the line between letting them learn through natural consequences and helping them because they're mentally unable to do things we take for granted.
Posted on 12/10/24 at 1:20 pm to DownSouthJukin
quote:
Thank you. We are doing hyperbaric treatment with oxygen. We took a break for a while but are now back at it. We are thinking of purchasing a chamber. I do want to find out if Dr. Harch uses a higher pressure method though, then what can be found in commercial grade soft chambers.
Not sure, but I listened to a podcast interview he gave a while back. Said he does brain scans of his patients throughout the treatment. He has working protocols for varies problems based on actual clinical data. And sounded like he’s one of the pioneers of the treatment. So it couldn’t hurt to at least do a consult.
Posted on 12/10/24 at 1:31 pm to DownSouthJukin
Prayers man. I know it is tough. I have a 7 year old who is non-verbal and got his autism diagnosis at 2 years old. We've experienced behavior issues since he was 18 months old. He's been in speech and occupational therapy since he was 2 years old.
My wife and I went round and round with the school last year. The school somehow lost his IEP paperwork and never communicated this to us before the first day of Kindergarten last year (he was set up with a multi-needs teacher who we met a week before at open house). First day of school gets her and we walk him in, we find out he will be in a regular classroom with no resources. We had to file suit against the school.
Started ABA therapy at the end of last school year. My wife finally got on board with it. We continued to see that specialist during the summer at her clinic. He now sees her 4 days a week at school and is with him 4 hours on those days. We have seen a major improvement in his behavior since this school year. His therapist is a good one. I hope things get better for you, your wife, and your son. Some people don't realize how difficult it is raising a special needs child.
My wife and I went round and round with the school last year. The school somehow lost his IEP paperwork and never communicated this to us before the first day of Kindergarten last year (he was set up with a multi-needs teacher who we met a week before at open house). First day of school gets her and we walk him in, we find out he will be in a regular classroom with no resources. We had to file suit against the school.
Started ABA therapy at the end of last school year. My wife finally got on board with it. We continued to see that specialist during the summer at her clinic. He now sees her 4 days a week at school and is with him 4 hours on those days. We have seen a major improvement in his behavior since this school year. His therapist is a good one. I hope things get better for you, your wife, and your son. Some people don't realize how difficult it is raising a special needs child.
This post was edited on 12/10/24 at 1:33 pm
Posted on 12/10/24 at 1:36 pm to DownSouthJukin
Posted on 12/10/24 at 1:45 pm to Rex Feral
quote:
Children with poor executive functioning is another issue you don't consider until they get older. It's really a difficult thing to teach. I want to send our son away to college, but I'm afraid he'd not remember to go to class, eat, take his meds, take a bath, etc. Where do you draw the line between letting them learn through natural consequences and helping them because they're mentally unable to do things we take for granted.
Yes, executive functioning is a problem. She can do it, but she can't do it all the time. She is adamant about going away to college. I'd rather have her 5 minutes away at KSU. Will she shower? Who knows. Will she take her meds? I hope so. Will she put on deodorant and brush her teeth? Don't know. But we need to let her try and fail, then we can see where she is at.
I fully expect her to be living in my basement come January 2026, and working at the local vet office cleaning cages and whatnot. But we have to let go at some point and let them try. She can cook, she can clean, she can do laundry, she is more adept with her phone and ipad than I will ever be. She is resourceful. But she spends money like it's grown on trees if we let her, and she does work only when it matters to her. We will see. I am fully prepared for failure though.
Posted on 12/10/24 at 1:50 pm to DownSouthJukin
I’m sorry you experienced that. My daughter is a BCBA. She fights for her kids. Goes to schools to meet and advocate. Meets with parents. She oversees, but also works with the kids and loves them. She worked very hard for her masters and prof and state licensure. Insurance is ruining ABA as it is everything else. They fight the BCBAs.
Posted on 12/10/24 at 2:03 pm to Freezus22
quote:
He'll still have the occasional accident during the night, but he's 6 -- it happens
That can be sleep apnea
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