Comments on: Dramatic cerebral palsy improvement seen after cord blood treatment

By: Angel

Angel — Thu, 12 Nov 2009 14:55:47 +0000

Hi,
Thx for all the info. I have a 4 yr. old son with left hemepheric CP. We did not save his cord blood at birth time. Had another child recently, but did not save hers either since we did not know about it. However we have our relatives who r ready to donate. How do we contact Duke Unviversity. Juanel, could you give me the details of the hospital in China where u intend to get the treatment for your child.
Thx again all for your very informative responses and good luck and well wishes.

By: angelia

angelia — Mon, 26 Oct 2009 02:14:54 +0000

Hi,

I am a bit surprise that the child need to go for chemotherapy. I have a daughter with cp I would go for the treatment unless the doctor can promiss me is a 100% well for my child after going thru all the pain and chemotherapy. Otherwise will consider other chioce.

By: Juanel

Juanel — Tue, 13 Oct 2009 13:32:16 +0000

Hi everyone

I have triplets and one has cp. We are flying to China for stem cell therapy in Dec. the 17th. We did not bank their cord blood as it was too expensive. We still regret it, but we have done extensive research on therapy in China and it is really promising. They use donor stem cells and like Rivsnoop said, US is 8 years behind on this.
China has come up with a way to keep your body from rejecting donor stem cells and after 4800 transfusions they have the evidence to back this up. The treatment there is also not just transfusions but includes intersive physiotherapy, speech and occupational therapy. it is a 4 week stay.
Brandi, i would opt for this istead of putting my child through chemotherapy.

By: Paola

Paola — Mon, 21 Sep 2009 21:55:35 +0000

Hi Brandi, sorry but I don’t understand:
AT Duke university they will made transplants of stem cells of another your baby? I have a cp baby and I have stem cells of his sister..do you think that I can go to the Duke University for the tretment? If not, do you think that in the future will be possible to use sister’s or other donor’s stem cells?

By: Martha

Martha — Sun, 23 Aug 2009 05:00:12 +0000

My son has CP and soon will have another baby. Where is a good place to bank my newborn’s blood cord? Where is good place to infuse my new born’s stem cells into my boy with CP?

By: jenny

jenny — Tue, 23 Jun 2009 00:31:35 +0000

so glad to know that i am not crazy my 19 month old has cp and we are also considering another baby for cord blood treatment

By: Brandi

Brandi — Wed, 27 May 2009 17:28:51 +0000

In order to use a sibling or donated cord blood, your child must go through an intensive 8 day chemotherapy treatment. Your child will lose thier antibodies and thier hair. They must kill all the existing stem cells in thier bodies before the donor cord blood is introduced.

This broke my heart when the Director at Duke told me this. I really thought this was “it”. I thought this would help my son. I don’t know if I could put him through all that pain. He would be hospitalized for a month, have to take anti rejection meds for a year and be susesptable to illnesses for a while. It’s a catch 22.

What does anyone else think about this?

By: Brandi

Brandi — Fri, 22 May 2009 17:59:21 +0000

I have 2 boys, aged 5 and 3. When my oldest son was 2, he suffered a massive stroke which resulted in severe brain damage, cp, aphasia, apraxia, hydrocephalus….. We did not bank either of our boys cord blood. We were denied into the study at Duke, but they said within the next 2 years they will be doing donor and related cord blood transplants. I will have a third baby in a second if it would help my beautiful boy. Hopefullly, we will get into the next study at Duke. Good luck to all of you CP moms. God Bless.

By: Michele

Michele — Fri, 08 May 2009 16:34:44 +0000

I have a 15 year old daughter with cp and they didn’t have this when she was born, I would definitely consider having another child to keep the cord blood if it would help her. If anyone hears anymore on this I would love to know.

By: Emilia

Emilia — Sat, 18 Apr 2009 05:49:32 +0000

Hej rivsnoop..
I live in Denmark and my daughter at 18 months has hemiplegic cp. I did not save her cordblood, so I also desperatly seek possibility of using siblingscordblood. Do you know where I can find information about donor stemcelle therapy in France and at Dukes uni? Ialso belive in my heart that stemcells are the way do go, in order to cure our children :-)
The best to all of you in his blog :-)

By: rivsnoop

rivsnoop — Fri, 20 Mar 2009 16:33:36 +0000

my son is 15 months and has hemiplegic cp. fortunately, we did save his cord blood and are in the process of getting him signed up for the study at Duke University. At this time, you can only use same cord blood, however, in the very near future, they would accept relative cord blood, and even donor stem cell, as they are already doing this in China and France. Unfortunately, due to restricting federal funding on any stem cell research, the Bush Administration put the US back about 8 years. Now that the current admin lifted these restrictions, we should be progressing forward and it also paved the way for other countries to share their research. There’s no doubt in my mind, if you see what they are doing in other countries already, that there will be a cure for CP within the next 5 to 10 years. I will keep you updated of my son’s progress at Duke. They are currently doing a test on the cord blood .

By: Fabiola

Fabiola — Sat, 07 Mar 2009 17:12:48 +0000

Hi I have a 16 month old who was diagnosed with cp and life has been so hard. I have tryed looking everywhere to find a solution. I know that china, mexico and englad do stem cell therapies but not frm siblings. I thought about have another child so that I can bank the cord blood but not only am I terrified of getting pregnant but it will be my fourth child. Please contact me if anyone finds out any information. I contacted the duke university to speak with the doctor there doing stem cell treatments but they told me that at this time they are only doing it on their own cord blood not siblings.

By: Dionne

Dionne — Sun, 22 Feb 2009 11:47:11 +0000

I am in the same boat as many of you other parents. I have a 5 year old daughter with CP. We did not save her cord blood as she was born very early and unexpected. We did save the cord blood of her baby sister in hopes of helping our child. PLEASE, if anyone out there can help us, as well as the other parents, please share. At this time, we have not found anyone in the US who will do a sibling transfusion.

By: John

John — Tue, 10 Feb 2009 05:44:23 +0000

I live in NZ, My 2YO son has CP, last week I saw a Programme on a NZ child who traveled to Mexico to have the transfusion of stem cells (they were not his own nor a siblings), his results were not as dramatic, but promising never the less. The centre was located 15mins from the boarder in Tijuana. They obtained the cells from plencenta’s. I have also contacted http://www.istemcelli.com who are very similar. I am currently seriously looking into travelling to Mexico to try the treatment. If anyone has any information or questions/advise for me I can be contacted on johnnyjohnfish@gmail.com.