Who has had Stem Cell Treatment out there?

CherieC

New member
We are like so many others researching Stem Cell for our 2 1/2 year old daugther. She has Quadraplegial Spastic CP and feeding/weight issues. What I would like to ask is who on here has already went through treatment and what improvements did you see after? Please be specific like you or your child could not hold their head up and now can. Can you also tell me where you got the treatment and your experience there?
I am praying that Stem Cell can reduce the tone/spasticisty for my daugther so she can learn to crawl/walk. She is suppose to be mild/moderate but can not sit on her own, crawl, walk and talk.
 
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barbara

Pioneer Founding member
tysmom - Do you work for Dr. Steenblock? I am asking because of the numerous repetitions of your posts.
 

Tami03

New member
To parents who want to know how sc help cp kids

My daughter has Spastic quadiplegia CP... I will glad tell Ava's (my daughter's story) Private message me and I will give you all of my information... Ask Barbara I am legit!!! I dont work for any specific company just want to help those who want answers for your kids..
 

LLL6521

New member
Overseas stem cell treatments can be a minefield. I suggest you stick to reliable individuals like Barbara or whoever Barbara suggests you speak to.
 

CherieC

New member
I am interested too Tami

I haven't been on here for awhile been so busy with therapies of every kind. I would like more information Tami about your experience with stem cells. We have been doing horse therapy and Bella loves it but she still isnt doing well with motor skills. She was tested and knew all of her colors, shapes and objects test, we started on ABC's. She is 4 now but doesnt talk hardly at all but can say a few words mostly when she is mad.
 

barbara

Pioneer Founding member
CherieC - It's very nice to hear from you. It put a smile on my face thinking of Bella in horse therapy. I believe that the future will be bright for her and other children who will benefit from stem cell therapy once the regulatory hurdles are overcome.
 

CherieC

New member
Bella

It is so hard to sit back and watch time pass you by especially when it is your child. Bella is 4.5 and I was just told that she has not met milestones and is not going to be able to walk, or most likely sit unaided. The tone is so bad in her legs that its pulling her right leg out of joint so we are facing another couple surgeries. I feel the answer we seek is stem cell but even though Lets cure cp has a trial coming up they will only take 30 children and I am sure their group will be the ones taken so I am now desperate enough to start to look back into places that treat like Dr. Steenblock. I continue to pray for the best but look for answers.
 

LLL6521

New member
You’re not alone. It is a very difficult road. It is the kind of situation that you never thought as possible. I've always thought that those kinds of things happen to other people and not me. Emotionally it is tough for any parent. Speaking for my self, you are willing to jump in front of a bus to see them cured, then you witness the nonsense and stonewalling from individuals that have healthy kids with no objective then preserving their bread and butter.
This is one of the purposes of this forum to find others in similar situation. My son Lawrence is 7 years old. He has severe CP. He is unable to walk, eat orally, and is cognitively impaired. I feel your pain. We continue to hope that one day no one will have the restrictions of treating children in U.S., and no longer have the limitations of just entertaining overseas clinics. We are all in it for the same objective – having the FDA stay away from autologous stem cell treatments. It will happen sooner or later. Keep your head up, and one day we will have the accessibility to treat our little ones here in the U.S.
 

barbara

Pioneer Founding member
I thought that Dr. Steenblock was retiring, but maybe that's not so. Have you discussed Bella's case with him?

Is there no way for Let's Cure CP to expand their trial? 30 seems very limited to me.
 

LLL6521

New member
Barb,

Last I heard, Steenblock handed the stem cell business over to his wife, and they no longer work with Dr. Ramirez in Tijuana.
 

barbara

Pioneer Founding member
He still has his website up, but what you said may very well be true. I think Dr. Braly is the one who is working with Dr. Ramirez now.
 

CherieC

New member
Question for Barb

I am now researching Dr. Steenblock in Mission Viejo CA for stem cell treatments. I was surprised when I called them because the cost wasn't what I expected. Bella's tone is causing her bones to go out of joint and I feel like I cant wait much longer. I have read several post who had children treated by this doctor. I was wondering what Barbs thoughts were about this clinic in CA? I would really like to discuss this with someone who really knows and I can trust. I called and talked to the clinic and was very surprised at some of the answers.
 

CherieC

New member
He is still doing it

No Dr. Steenblock is still doing it but not in Mexico anymore. He is in Missions Viejo CA. I have a phone consult with him after I get the medical release and paperwork completed.
 

barbara

Pioneer Founding member
His clinic has always been located in Mission Viejo as far as I know. I had 2 bone marrow extractions from him. They had short term positive effects for me. The price was reasonable, but again, no long term improvements. It was strictly experimental which I knew from the get go. He made no promises.

Dr. Steenblock has been a controversial doctor as he dared to step outside the box. Some vilify him, others feel he is exceptional. It doesn't take much to do an internet search to see the vast differences of opinions.

Unfortunately, no one has a crystal ball to know if treatment will help. The challenges you are facing with your daughter are such that if it were me, I wouldn't hesitate to seek out treatment for her either.
 

CherieC

New member
Thanks

We are now starting the process to do this treatment. I found another parent who is right now at this time having treatment with Steenblock for her son who is 16. We have been friends on FB and when I asked the question she messaged me. I am going into with hopes, praying for the best but I am realistic as well.
 

mkosel0

New member
My prayers are with you and your daughter. My son also has cerebral palsy. He is 2 and we are seeking out stem cells as well. My son did receive his own cord blood when he was 15 months old at Duke University.

My heart goes out to you and your daughter. We all want what is best for our kids and to give them the brightest futures. Give your daughter a big hug, and keep us posted on her treatment.
 

barbara

Pioneer Founding member
CherieC - I am confident that Bella will do well. I know you will keep us posted. Have a safe and successful trip!
 
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