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Hello:

 

We had been trying to have another baby when all H broke loose with my 4 yr. old son having an acute episode last Sept. For obvious reasons, we put it all on hold. Our son has his ups and downs, but seems to be somewhat stabilized re: the really frightening symptomology. It has been 8 months since that episode and although we have had some scares, and he is not consistently behaving "normally", he is managing mainstream and doing OK. Here's the clincher and please do not judge us - rather, please give us your understanding and knowledge when I ask: does anyone know anything about cord blood from a sibling, being used to assist the recovery of another sibling, specifically targeting PANDAS? If we choose to go ahead with another child, we are are wondering if cord blood might help our son with PANDAS diagnosis.

 

Thank you, K

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When my (Pandas/lyme) son was born, we banked his cord blood. I searched for anyone who might have a vein of research that could help, but came up empty. My impression is that funding is so difficult already, most are focused on using stem cells to treat diseases that are 1) fairly well understood, 2)effect a large number of people and 3)aren't controversial. I assume most universities and grant doors aren't going to write large checks to use an emerging science to treat a disease not everyone can agree exists. Not that things don't change quickly. But I never found anything.

 

The reason we banked his blood was as insurance. Heaven forbid he should dive into a swimming pool and become paralyzed or develop some disorder that is treatable with stem cells...So I don't regret the decision. But so far, no reason to call the bank and tell them to start thawing.

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I was just starting to wonder the same thing. DS9 has PANDAS/Lyme and we banked the blood of his younger brother.

 

I'd love to hear any thoughts.

 

Hello:

 

We had been trying to have another baby when all H broke loose with my 4 yr. old son having an acute episode last Sept. For obvious reasons, we put it all on hold. Our son has his ups and downs, but seems to be somewhat stabilized re: the really frightening symptomology. It has been 8 months since that episode and although we have had some scares, and he is not consistently behaving "normally", he is managing mainstream and doing OK. Here's the clincher and please do not judge us - rather, please give us your understanding and knowledge when I ask: does anyone know anything about cord blood from a sibling, being used to assist the recovery of another sibling, specifically targeting PANDAS? If we choose to go ahead with another child, we are are wondering if cord blood might help our son with PANDAS diagnosis.

 

Thank you, K

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Yes, I figured as much. We were thinking of banking our son's cord blood but practically every doc I spoke to told me not to bother - "waste of $$". Their thought process was that the odds of having any problems and needing it were slim.

 

A little over 2 yrs. ago, when my son was 1st diagnosed, I was much more concerned than any of his pediatricians - was even blown off by a nueropsychiatrist at Duke, NC. At that time, I was unable to find much on the Net at all. 6 months later, the links grew and now 2 years later, it's all over and most pediatricians have at least heard of PANDAS. My hope is, that if,(God forbid) this is still an issue for my son 10 years from now, there will be a great deal of new research. I believe that there are many, many misdiagnosed kids out there and that PANDAS may be just as prevalent at Rheumatic Fever was, prior to the introduction of antibiotics. So, maybe 10 years from now, they will be doing something with cord blood -

 

I wish we had banked my son's blood because now I kind of live my life waiting for the other shoe to drop. Despite the lack of research, I think, if we are able to manage another one, we will go ahead with banking it.

 

Thank you for your responses.

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Yes, I wish we had banked DS9's, but I didn't know too much about it at the time and his was a complicated birth where he was rushed to the NICU, so it probably would have fallen by the wayside anyway.

 

I am being charged about $100/year to store DS7's cord blood.

 

FYI: you may be interested in this story, which I remember back when it happened about a teenage girl who contracted leukemia and couldn't find a donor match. Her parents undid a vasectomy to conceive another child, who turned out to be a match. It was a heartwarming story.

 

http://affiliate.kickapps.com/_ABOUT-Marissa-Eve-Ayala-Research-Fund/blog/128152/43737.html

 

Best of luck. Of course, dealing with an infant and an older child with PANDAS will have its own challenges!

 

Yes, I figured as much. We were thinking of banking our son's cord blood but practically every doc I spoke to told me not to bother - "waste of $$". Their thought process was that the odds of having any problems and needing it were slim.

 

A little over 2 yrs. ago, when my son was 1st diagnosed, I was much more concerned than any of his pediatricians - was even blown off by a nueropsychiatrist at Duke, NC. At that time, I was unable to find much on the Net at all. 6 months later, the links grew and now 2 years later, it's all over and most pediatricians have at least heard of PANDAS. My hope is, that if,(God forbid) this is still an issue for my son 10 years from now, there will be a great deal of new research. I believe that there are many, many misdiagnosed kids out there and that PANDAS may be just as prevalent at Rheumatic Fever was, prior to the introduction of antibiotics. So, maybe 10 years from now, they will be doing something with cord blood -

 

I wish we had banked my son's blood because now I kind of live my life waiting for the other shoe to drop. Despite the lack of research, I think, if we are able to manage another one, we will go ahead with banking it.

 

Thank you for your responses.

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Thanks, and yes, it will. Luckily, although he had been dx at 2.5 years old, he has only experienced one acute episode, I knew what it was and got Augmentin on board immediately. It took several roller coaster months, but we got the symptoms under control. He is currently on Cefdinir which is working very well. I believe that although the docs were remiss in treating the PANDAS, and only treated the Strep from age 2.5-4, we might have lessened the PANDAS impact because each time he had Strep I could tell immediately from some behaviors and tics, and I would rush him in for a Strep test and he would at least get the 10 day run of antibiotics. He had his tonsils out last Aug., which was heinous and likely brought on the acute episode, but we went after the PANDAS immediately. For many months, he has been steady to a point in which no one would be able to tell there was anything wrong unless I told them. I am hoping that he will be one of the lucky ones who "grows out of it". Perhaps I sound naive, but I am not. Only extremely hopeful and unwilling to allow this enemy to take my son. So, although realistically there will be challenges with an infant, I am hoping that they will not be hurdles that I cannot jump.

 

Best to you and yours, Kath :)

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Talk about timing - I just got this email from the company we used to store DS's cord blood. Not that Pandas would fit into the trial, but it's exciting that they're looking at the brain...

 

Dear Families of Cord Blood Registry,

 

Earlier this year, The University of Texas Health Science Center at Houston (UTHealth) launched an FDA-regulated trial looking at cord blood stem cells in the treatment of pediatric traumatic brain injury (TBI). The study is being performed in partnership with Children's Memorial Hospital, UTHealth's major children's teaching hospital.

 

Ten children, ages 18 months to 17 years, who have access to their own cord blood stem cells at CBR and who have suffered a recent TBI (within the last 6-18 months) will be enrolled in the study. To ensure consistency in cord blood stem cell processing, storage and release for infusion, CBR is the only stem cell bank participating in this study.

 

While the study is unique to CBR clients, it is also the first of its kind. According to Dr. Charles Cox, professor and chief of Pediatric Trauma at the UTHealth Medical School, "This is the first clinical trial authorized by the FDA to evaluate the safety of autologous cord blood stem cells in the treatment of TBI."

 

If you have a child who meets the study criteria, and are interested in learning more about participation, click here and submit your information.

 

CBR is participating in a growing number of clinical trials focusing on the use of a child's own cord blood stem cells to help treat pediatric brain injury. We are committed to keeping you informed about potential new uses for cord blood stem cells and are excited to help advance this important clinical work. For more information about the trials, please visit the CBR Center for Regenerative Medicine.

 

Sincerely,

 

Heather Brown, M.S., C.G.C.

Vice President, Scientific & Medical Affairs

Cord Blood Registry

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