Cerebral palsy and other brain injuries

Jeannine

Pioneer Founding member
Tami

Your support group sounds like our small group of folks with COPD who exchange emails on a regular basis.

Without Barb and my friends Jan, John and Larry I would feel very alone with my illness.
 

Azriel

New member
Oscar's MRI normal

Hi

I'm not sure now what we do and if stem cells will play a part. Oscar's MRI came back as normal and so did a range of other blood tests. So it rules out stroke but at the moment potentially not CP. Our appointment with our paediatrician is not until 22nd October so now a waiting game to find out more.

I'm wondering if any others had a long process to diagnosis for CP or did the MRI confirm it?

It is difficult with Oscar as he is certainly not as severely effected as most of the toddlers in his conductive education class.

So we sit in the 'undiagnosed developmental delay' category at the moment with both speech and motor skills effected.

merryn
 

Kaci's Mom

New member
Kaci's MRI came back normal too. She had her diagnosis of athetiod cerebral palsy by age 1. I don't know how things work in your Country, but here in the US we have places that are Child Development and Rehabilitation Centers. They run the child through a thorough evaluation that includes a Neurodevelopmental Physician, PT, OT, speech, sometimes audiology. I think this is a GREAT resource to have! Any way, I know how the whole "waiting" thing gets. GOOD LUCK!
Kristin
 

caleb's mum

New member
going to Mexico

Hi all, from New Zealand

Well I have been reading everyones success with Dr Ramirez and we have decided to have the treatment done for our two year old son who has CP and Epilepsy. We head off next Tuesday on the 2nd December, so I will keep you all up to date with his progress. One question for all who have had the treatment done by Dr Ramirez, how did he give the Stem Cells, our son is going to have them inserted via subQ injection, but have been reading some information regarding this and apparently IV is more successful. Any thoughts.

Also had a horrible email from Mary Schneider about going to Mexico she said that it's the most dangerous clinic of all to go to, that many children have become sick after their treatment, but I have not found any information supporting her claims.

Our wee boy has been on national tv and our local paper, also they are making a documentry about him having this treatment. as he will be the first child from New Zealand to have the treatment done, it has created lots of interest from people who also have CP, so I hope Caleb's story will make a difference to those people, and also give them hope that we can do something positive for their future.
If you wish to see our cute wee boy you can click on the link below. if not just go to www.tvnz.co.nz keyword Close up and click on Medical Journey of Hope

http://tvnz.co.nz/view/news_minisite_index_skin/news_close_up_group

Cheers
Caleb's mum
 
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Azriel

New member
Actual diagnosis for Oscar

Hi All

Caleb's mum's prompt made me realise I had not updated what we know so far now with Oscar. We have an official (for what it is worth) diagnosis of:

1. mild stroke
2. developmental delay
3. Autism Spectrum Disorder (ASD)

The ASD one threw me immensely as Oscar is very social and most of the symptoms from all my reading since that diagnosis are secondary. So unsatisfied that we could be diagnosed this way on a one hour session we have headed down the bio medicine path and we have just been to a specialist biomedicine paediatrician for her views. She also thinks the ASD are mostly secondary but we have started on a huge range of supplements and adjustments to diet. Starting with dairy free - oh what a mission for a yoghurt, cheese and milk boy! We have a nutritionist appointment for the next step of gluten free as well next week.

So what are we taking? All sorts! A specialist multi vitamin, B12 drops, Omega 3, a probiotic, a yeast killing product, epsom salt baths. I'm still trying to source some of the items but hopefully will have all by the end of the week.

In the interim though Oscar has gone up a gear in movement and vocalisation which is great. His creeping is now more utilised than his rolling so I am really, really hopeful we can get to some unassisted crawling by Christmas. For Oscar I have no doubt that conductive education is making good gains for him. Unfortunately though he is constantly picking up viral illnesses and so for our 14 weeks since we started conductive education he is now onto his fifth illness and away again I would say for the rest of the week. All the parents are very good at keeping kids home if sick but when they can't talk they can't always let you know something is coming on and I think it will take time for him to adjust to all the bugs about.

Stem cell is still high on our list of priorities for Oscar but we think that we will need to wait and give the biomedicine approach a chance for the next few months then start the funding mission to get there for Stem Cell Therapy.

We will watch with great interest Caleb's journey as a kiwi kid on the next stage of what I hope is a great change for him.

Cheers

Merryn
 
Dr. Ramirez's Clinic

Dr. Ramirez in Tijuana, Mexico usually works in conjunction with SRI based in California, USA. http://www.ramirezdelrio.com/
He is an honorable and accomplished physician and the stem cells are good and safe. His clinic is not fancy but it is clean and staffed with professional nurses to support him. You should have no difficulties there. When we arrived there for Michael's fourth stem cell visit. Michael was treated intravenously with mannitol. However he was treated on other occasions sub-cutaneously. It is very likely that the stem cells produce Neuronal growth factors where they are injected which causes the stem cells naturally occuring in the child's brain to improve their effectiveness in brain repair. I just returned from a very interesting stem cell seminar this past Friday. Stem Cell & Regenerative Medicine Therapies for Treating Neurological Disorders in Children
Dennis A. Steindler, Ph.D.
The Evelyn F. and William L. McKnight Brain Institute
Joseph J. Bagnor/Shands Professor of Medical Research
Program in Stem Cell Biology and Regenerative Medicine
The University of Florida

Dr. Steindler indicated that indeed the likelyhood is greater that the production of growth factors by the hUCBSC's rather than them becoming neurons in the brain would cause improvements.
 

Azriel

New member
Seminar info

Hi Michaels Dad

Did they have an electronic copy of the seminar notes? I'd be interested to read them in detail.

Cheres

merryn
 
Dr. Steindler's write-up

I know they did a video of his presentation. Here is contact information from the World Congress on Disabilities email...

"If you have any questions or need additional information, please visit our website www.wcdexpo.com or call our offices at 201-722-9220."

Here is the write-up they have on Dr. Steindler:
Dr. Steindler received his doctorate in Anatomy and neurosciences from the University of California, San Francisco. After postdoctoral studies at the Max-Planck-Institute for Biophysical Chemistry in Germany, Dr. Steindler began his studies of brain development and injury as an Assistant Professor of Anatomy at Michigan State University. He is currently the Executive Director of the McKnight Brain Institute of the University of Florida, and the Joseph J. Bagnor/Shands Professor of Medical Research, a member of the Program in Adult Stem Cell Biology and Regenerative Medicine of the University of Florida College of Medicine, and an advisor to the California Institute of Regenerative Medicine (CIRM). He also serves on the scientific advisory board for the Michael J. Fox Foundation for Parkinson?s Research. Besides directing a large developmental neurobiology group, and teaching medical school neuroscience, Dr. Steindler has been studying the growth and transplantation of brain and stem cells for over 25 years. He is also responsible for reviewing manuscripts and grants for a variety of journals and funding agencies, including formerly chairing a brain repair and stem cell-related review panel at the National Institute of Neurological Diseases and Stroke in the National Institutes of Health, and he retains a position on the editorial boards of the following journals: The Journal of Neuroscience, GLIA, Experimental Neurology, and Brain Research. His recent papers in the international journals of medicine and science, The Lancet, and Proceedings of the National Academy of Sciences, set forth plans for the use of stem cells and regenerative medicine for a variety of neurological diseases, including Parkinson?s Disease and cancer. In addition to his academic duties, Dr. Steindler is the founder or co-founder of several regenerative medicine biotechnology companies, including: RegenMed, Inc., Neuropoetix, AngioPoetix, and OncoPoetix, involved in developing and commercializing cell and molecular therapies for neurological and blood-related disorders, and cancer.
Dave Snow
 

Tami03

New member
Sub Q injections are at best temporary if that is all the treatment that is done. We went to Mexico at another clinic and only had the 2 sub q injections saw GREAT results for 5 weeks and then she regressed. We went to Lima Peru and had lumbar puncture which is the most evasive but the most effective. Something to consider!! Good Luck
 
Lumbar puncture.

That is something to consider. My wife and I had talked at some point about having the stem cells delivered into the cranial sac. The cerebro-spinal fluid contains the bulk of the neuronal stem cells. Dr. Steindler said it was similar to the Bone Marrow for manufacturing stem cells. Dr. Payne advised against it and we did not pursue it. But I know in China they introduce stem cells into the cerebro-spinal fluid. We chose not to due to the risks, but I hear whay you are saying. We will consider it as an option. I am glad to hear that it was most beneficial for your child!:D
 

barbara

Pioneer Founding member
A thumbs up for Drs. Steenblock and Ramirez

I dislike hearing that anyone is trashing Drs.Steenblock and Ramirez as I find them to be hard working, honest, very bright, pioneering doctors. As far as running the most "dangerous clinic there is" she is sadly mistaken. Dr. Ramirez is one of the most respected doctors according to Dr. Jorge Astorga who is with the Mexican Ministry of Health. Also, if you knew or met Dr. Steenblock, it would be apparent that this in no way would apply to him either. I do hope that people take the time to research such things if they are at all concerned. It is so much better than strange articles one finds on the internet or gossip that is sent in an e-mail.


I also think that Dr. Feinerman is doing very good work. Tami's child, Ava, recently had treatment with him and Dr. Paino in Peru and this group also gets a thumbs up from me.
 

barbara

Pioneer Founding member
Thanks mysty119. I also wanted to let everyone know that we can customize shirts now. Just send an e-mail request to the seachangeforlife@gmail.com and tell us what you would like your t-shirt to say. I am getting one made for Christmas that says, "All I Want for Christmas is Legalized Stem Cell Therapy."
Same prices, same colors and sizes available for this. Thank you Michael for your support.
 

caleb's mum

New member
Hi all,

Hope everyone had a wonderful and safe Christmas and I hope 2009 will bring good things for every one.

Well its been 4 weeks today since Caleb had his treatment.
We arrived after a 15 hr flight Caleb was great slept most of the way, airline lost my bag so was not off to a good start, but it arrived a couple of days later, anyway about his treatment.

We meet with Dr Steenblock the day after we arrived, he explained Caleb's CT scan to us which no one here as bothed to do. He said that Caleb didn't have much white matter and that is what is needed, he gave us the option of going with a Catheter inserted to his main artery in his grion, so we decided to go with this, basically he said that it would give us more bang for our buck, it made it a bit more stressfull as it would mean he had to have a G.A, but every one at the clinic was great, they were very professional and Dr Ramirez explained every step that was going to happen during the operation.

Caleb did so well he was such a brave little guy, he came out of the operation great. Post Op he has been very tired for the last couple of weeks, Dr Steenblock said that that's great as it means the stem cells are working, (thank god) haven't notice any changes yet, but as Caleb didn't have much white matter it may take a little longer before we do. We plan on heading back in 6 months for another treatment.

Will keep you all informed of his progress.
 

Mysty119

New member
Caleb's mom

This sounds so good. I believe Caleb will benefit from this treatment. Dr. Steenblock and his staff are absolutely great. My best to Caleb.
 

barbara

Pioneer Founding member
Thank you so much for the update. What a sweet little guy and a brave one also. I am so glad to hear that things went well for you. Keep us posted. I know you will.
 
To Calebs mum.

I had forgotten about the option of having a cathederization done where they snake a tube up just under the brain before releasing the stem cells. Is this the procedure they used? My son Michael was too little three years ago but he has grown so much since then, now that he will be 9 years old in March, who knows...

How old and what size is your son, Caleb if you don't mind saying?

Thanks for posting.
Sincerely, David Snow
 

caleb's mum

New member
Hi, thanks for your kind words Bea, and Barbara, and the answer to Michaelsdad00 questions is, yes that is the procdure that Caleb had, at the time Caleb was 2years and 3ths, and his weight was about 10.5kgs, Dr Ramirez said, that Caleb was the smallest person they had done to date, so in a way Caleb was a trail for them, but he came through it so well, so hopefully younger children can have this done sooner rather than waiting for them to get bigger.
 
Thank you for your reply. I hope those stem cells find a wonderful home in your son, Caleb. Best of fortune to him. Dave Snow

Hi, thanks for your kind words Bea, and Barbara, and the answer to Michaelsdad00 questions is, yes that is the procdure that Caleb had, at the time Caleb was 2years and 3ths, and his weight was about 10.5kgs, Dr Ramirez said, that Caleb was the smallest person they had done to date, so in a way Caleb was a trail for them, but he came through it so well, so hopefully younger children can have this done sooner rather than waiting for them to get bigger.
 

Vaibhav

New member
Hi Tami

Hi Tami,

Can you tell us a bit more about the milestones as of date since the treatment at Peru?

Thanks

Vaibhav
 
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