Noah is autistic but he also has hypotonia which is low muscle tone. He has been in pain for months along with his joints …
30 Comments
Noah does not have EDS, this is something we have explored and asked doctors about. The only thing he does have is explained by his low muscle tone. Everything that is going on is due to his 3 chromosomal abnormalities. This is why in the video I asked for others not to give medical advice. Noah is under the care of a team of therapists, doctors, and specialists who are giving him the BEST treatment possible and we have explored every avenue. I understand how easy it is to be like "well this kind of sounds like what I have" and want to push that narrative but for us, that is not the case. And even if it was EDS, it wouldn't change his treatment plan.
Please understand how stressful and hard it is to have all of these new things being thrown at you as a parent then sharing it with social media then having so many people suggest it's that or this instead of leaving it to the trained medical professionals. I am sharing this because it's a part of our story and to raise awareness. We have the medical treatment covered by doctors and hospitals who are ranked best in the nation.
I'm 26 and have been using a wheelchair full time since I Was about 14, started using one part time when I was just 2. A wheelchair is freedom, it's accessibility, it's getting your life back. In the disability community, we congratulate people when they get their first wheelchairs. You might be feeling overwhelmed now, but I promise you this will be a positive thing.
God bless Noah and all of your children. And God continue to bless you and your husband with the strength to continue to navigate these medical challenges and keep your children feeling as safe and comforted as possible. 🥰
Noah is so brave to share his journey he’s always so positive even with being in so much pain he’s so brave . I really enjoy your videos 🥰 his room cushion looks soo comfortable I want one for myself .. you really are such a strong family sending you all loads of love ❤️❤️❤️❤️❤️
For Noah and his mobility check out Alinker. It is a mobility device I use it to allow me to walk.without canes or wheelchair. they also have fund raisers so that you can purchase this walking aid.
You can also get rid of herpes without any side effects, contact DR JADU OINDIN for a permanent cure. You can visit his YouTube channel for more information.. DR JADU OINDIN .
Hopefully, Noah will see a wheelchair as freedom once he adjusts to it. It is harder for a younger person, but often people are more frustrated by their inability to move around. When they get a chair, they can be more active. I need a motorized chair, but can't afford it. I can't go any where other than short shopping trips for necessities. I often get tired and have to get just what i need in the next few days and go back another day. The worst part is I can't stand for more than a few minutes without my legs giving out. I can walk longer though, its just standing still that causes the problem. If I stop to read a label in the grocery store, my legs get weak. The thought of someday getting the chair is comforting.
i could see how it is becoming apparent now–the body changes a lot around that age and the added height and corresponding weight trigger symptoms. I had a problem with my ankles giving out around puberty. With growth spurts and the underlying weakness, my ankles just couldn't hold me up. For me, it got better after I stopped growing. While the underlying problem still exists, they aren't exasperated by the fast growth
I am so sorry you are going through this, it must be heartbreaking seeing any child suffer especially your own. I am glad Noah and all the children are now receiving much better medical care in Colorado. The best medical care I ever received was actually in CO they saved my life.CBD oil is great and it helped me a lot with pain for a long time, so hopefully that will help him even if its just on days where the pain is really bad.
At first I was wondering about water therapy, but if he can barely move without pain, I don't think it would work. I wish they would have told you when he was younger, that he needed therapy. That sucks! I hope what you are going to do works.
People really take their child’s health for granted and I’m so sorry this is happening to Noah, I really hope things get better for him and that his pain can be managed. You are a literal hero and the strongest woman I’ve ever seen in life, I really admire your strength. You are such an inspiration! Definitely do not blame yourself for anything, for what you may or may not have done, you had no idea! You do what’s best for your kids no matter what, and we all know you are not to blame. 💖 Thank you for vlogging your life, I really admire your honesty and openness. 💖 Much love
Suggestion would be to get him into a water therapy. This is very low impact exercise with very good results. My son has low muscle tone and we did not get the therapy he needed either. They tell you what is going on but not how to fix it. Well some places do not all. But per someone else's suggestion we got our son in the pool. He is doing so much better today. He is 22 now. He is not cured but he has a much better quality of life. He had trouble wiping his on bottom at age 16 but this has become a thing of the past.
Ouch, poor kiddo! I have lumbarscholiosis so my back curves into a c shape. I also have degenerative disc disease . I use a wheelchair to get around outside of my house and it is helpful. I hope you can ease his pain 🌟❤️🌟 so far I have been able to slightly lessen my pain but some days it comes out in full force. No fun at all!
I can't even imagine (thank God) having a child going through such pain and being so limited; I pray his pain will ease and you have the strength to endure all you will have to go through in the future. Stay strong family!
Sending all the prayer and hugs for your family and Noah. As a mother of 2, this hurts a lot. I can't even start to imagine how hard this is on you. Hoping all the therapy he's getting will help him out tremendously.
Noah does not have EDS, this is something we have explored and asked doctors about. The only thing he does have is explained by his low muscle tone. Everything that is going on is due to his 3 chromosomal abnormalities. This is why in the video I asked for others not to give medical advice. Noah is under the care of a team of therapists, doctors, and specialists who are giving him the BEST treatment possible and we have explored every avenue. I understand how easy it is to be like "well this kind of sounds like what I have" and want to push that narrative but for us, that is not the case. And even if it was EDS, it wouldn't change his treatment plan.
Please understand how stressful and hard it is to have all of these new things being thrown at you as a parent then sharing it with social media then having so many people suggest it's that or this instead of leaving it to the trained medical professionals. I am sharing this because it's a part of our story and to raise awareness. We have the medical treatment covered by doctors and hospitals who are ranked best in the nation.
I'm 26 and have been using a wheelchair full time since I Was about 14, started using one part time when I was just 2. A wheelchair is freedom, it's accessibility, it's getting your life back. In the disability community, we congratulate people when they get their first wheelchairs.
You might be feeling overwhelmed now, but I promise you this will be a positive thing.
beautiful kids 🙂
God bless Noah and all of your children. And God continue to bless you and your husband with the strength to continue to navigate these medical challenges and keep your children feeling as safe and comforted as possible. 🥰
Noah is so brave to share his journey he’s always so positive even with being in so much pain he’s so brave . I really enjoy your videos 🥰 his room cushion looks soo comfortable I want one for myself .. you really are such a strong family sending you all loads of love ❤️❤️❤️❤️❤️
That is so sad
For Noah and his mobility check out Alinker. It is a mobility device I use it to allow me to walk.without canes or wheelchair. they also have fund raisers so that you can purchase this walking aid.
You can also get rid of herpes without any side effects, contact DR JADU OINDIN for a permanent cure. You can visit his YouTube channel for more information.. DR JADU OINDIN .
Hopefully, Noah will see a wheelchair as freedom once he adjusts to it. It is harder for a younger person, but often people are more frustrated by their inability to move around. When they get a chair, they can be more active. I need a motorized chair, but can't afford it. I can't go any where other than short shopping trips for necessities. I often get tired and have to get just what i need in the next few days and go back another day. The worst part is I can't stand for more than a few minutes without my legs giving out. I can walk longer though, its just standing still that causes the problem. If I stop to read a label in the grocery store, my legs get weak. The thought of someday getting the chair is comforting.
i could see how it is becoming apparent now–the body changes a lot around that age and the added height and corresponding weight trigger symptoms. I had a problem with my ankles giving out around puberty. With growth spurts and the underlying weakness, my ankles just couldn't hold me up. For me, it got better after I stopped growing. While the underlying problem still exists, they aren't exasperated by the fast growth
Noah is so blessed to have you as parents!
I am so sorry you are going through this, it must be heartbreaking seeing any child suffer especially your own. I am glad Noah and all the children are now receiving much better medical care in Colorado. The best medical care I ever received was actually in CO they saved my life.CBD oil is great and it helped me a lot with pain for a long time, so hopefully that will help him even if its just on days where the pain is really bad.
I am 65 now, I have Autism AD HD OCD PDA, I struggle with this same thing.
Would swimming help Noah.?
At first I was wondering about water therapy, but if he can barely move without pain, I don't think it would work.
I wish they would have told you when he was younger, that he needed therapy. That sucks!
I hope what you are going to do works.
People really take their child’s health for granted and I’m so sorry this is happening to Noah, I really hope things get better for him and that his pain can be managed. You are a literal hero and the strongest woman I’ve ever seen in life, I really admire your strength. You are such an inspiration! Definitely do not blame yourself for anything, for what you may or may not have done, you had no idea! You do what’s best for your kids no matter what, and we all know you are not to blame. 💖 Thank you for vlogging your life, I really admire your honesty and openness. 💖 Much love
Have they checked him for EDS: Elon’s Danlos syndrome?
what do you mean by going to center is this something like respite or something
I wish the best for you and your family.
Suggestion would be to get him into a water therapy. This is very low impact exercise with very good results. My son has low muscle tone and we did not get the therapy he needed either. They tell you what is going on but not how to fix it. Well some places do not all. But per someone else's suggestion we got our son in the pool. He is doing so much better today. He is 22 now. He is not cured but he has a much better quality of life. He had trouble wiping his on bottom at age 16 but this has become a thing of the past.
I have put I. My prayers for you, the kids and your family! Do not blame yourself! Sounds like the therapist did not explain anything to you properly.
My son was diagnosed with mild hypotonia too and I never looked into more than knowing it’s low muscle tone
I’m so so sorry and my heart hurts for Noah! As mommas our baby’s mean the world to us and having to watch your child go through so much 😫💔💔💔
That’s devastating news. I’m so sorry. I hope he’s able to get stronger. Poor thing.
I leg braces in 4th grade im still having trouble with my right leg
Ouch, poor kiddo! I have lumbarscholiosis so my back curves into a c shape. I also have degenerative disc disease . I use a wheelchair to get around outside of my house and it is helpful. I hope you can ease his pain 🌟❤️🌟 so far I have been able to slightly lessen my pain but some days it comes out in full force. No fun at all!
❤️
I can't even imagine (thank God) having a child going through such pain and being so limited; I pray his pain will ease and you have the strength to endure all you will have to go through in the future. Stay strong family!
Sending all the prayer and hugs for your family and Noah. As a mother of 2, this hurts a lot. I can't even start to imagine how hard this is on you. Hoping all the therapy he's getting will help him out tremendously.
He is so strong and your doing a fantastic job