July 24, 2010

Bertrand's attention span

We measured it:

26 seconds.

July 23, 2010

Stem cells reverse blindness caused by burns

As Bertrand awaits his cord blood stem cell infusion on August 24th at Duke University, here is a summary of another fascinating use of autologous stem cells published in the New England Journal of Medicine.

By ALICIA CHANG, AP Science Writer – Wed Jun 23, 7:29 pm ET

LOS ANGELES – Dozens of people who were blinded or otherwise suffered severe eye damage when they were splashed with caustic chemicals had their sight restored with transplants of their own stem cells — a stunning success for the burgeoning cell-therapy field, Italian researchers reported Wednesday.

The treatment worked completely in 82 of 107 eyes and partially in 14 others, with benefits lasting up to a decade so far. One man whose eyes were severely damaged more than 60 years ago now has near-normal vision.

"This is a roaring success," said ophthalmologist Dr. Ivan Schwab of the University of California, Davis, who had no role in the study — the longest and largest of its kind.
Stem cell transplants offer hope to the thousands of people worldwide every year who suffer chemical burns on their corneas from heavy-duty cleansers or other substances at work or at home.

The approach would not help people with damage to the optic nerve or macular degeneration, which involves the retina. Nor would it work in people who are completely blind in both eyes, because doctors need at least some healthy tissue that they can transplant.

In the study, published online by the New England Journal of Medicine, researchers took a small number of stem cells from a patient's healthy eye, multiplied them in the lab and placed them into the burned eye, where they were able to grow new corneal tissue to replace what had been damaged. Since the stem cells are from their own bodies, the patients do not need to take anti-rejection drugs.

Adult stem cells have been used for decades to cure blood cancers such as leukemia and diseases like sickle cell anemia. But fixing a problem like damaged eyes is a relatively new use. Researchers have been studying cell therapy for a host of other diseases, including diabetes and heart failure, with limited success.

Adult stem cells, which are found around the body, are different from embryonic stem cells, which come from human embryos and have stirred ethical concerns because removing the cells requires destroying the embryos.

Currently, people with eye burns can get an artificial cornea, a procedure that carries such complications as infection and glaucoma, or they can receive a transplant using stem cells from a cadaver, but that requires taking drugs to prevent rejection.

The Italian study involved 106 patients treated between 1998 and 2007. Most had extensive damage in one eye, and some had such limited vision that they could only sense light, count fingers or perceive hand motions. Many had been blind for years and had had unsuccessful operations to restore their vision.

The cells were taken from the limbus, the rim around the cornea, the clear window that covers the colored part of the eye. In a normal eye, stem cells in the limbus are like factories, churning out new cells to replace dead corneal cells. When an injury kills off the stem cells, scar tissue forms over the cornea, clouding vision and causing blindness.

In the Italian study, the doctors removed scar tissue over the cornea and glued the laboratory-grown stem cells over the injured eye. In cases where both eyes were damaged by burns, cells were taken from an unaffected part of the limbus.

Researchers followed the patients for an average of three years and some as long as a decade. More than three-quarters regained sight after the transplant. An additional 13 percent were considered a partial success. Though their vision improved, they still had some cloudiness in the cornea.

Patients with superficial damage were able to see within one to two months. Those with more extensive injuries took several months longer.

"They were incredibly happy. Some said it was a miracle," said one of the study leaders, Graziella Pellegrini of the University of Modena's Center for Regenerative Medicine in Italy. "It was not a miracle. It was simply a technique."

The study was partly funded by the Italian government.

Researchers in the United States have been testing a different way to use self-supplied stem cells, but that work is preliminary.

One of the successful transplants in the Italian study involved a man who had severe damage in both eyes as a result of a chemical burn in 1948. Doctors grafted stem cells from a small section of his left eye to both eyes. His vision is now close to normal.

In 2008, there were 2,850 work-related chemical burns to the eyes in the United States, according to the Bureau of Labor Statistics.

Schwab of UC Davis said stem cell transplants would not help those blinded by burns in both eyes because doctors need stem cells to do the procedure.

"I don't want to give the false hope that this will answer their prayers," he said.

Dr. Sophie Deng, a cornea expert at the UCLA's Jules Stein Eye Institute, said the biggest advantage was that the Italian doctors were able to expand the number of stem cells in the lab. This technique is less invasive than taking a large tissue sample from the eye and lowers the chance of an eye injury.

"The key is whether you can find a good stem cell population and expand it," she said.
New England Journal: http://www.nejm.org

Maracas and malaise

The Good

Daddy was sitting next to Bertrand when suddenly the maraca started making noise.

Daddy turned and saw this:

Yes, Bertrand picked up the maraca and started rattling it. He hasn't done anything like that in two years!

The Bad

At the same time, we see more seizure control slipping away.

For the most part, they're not visible seizures. Rather, there are stretches where Bertrand returns to his sour, foggy malaise of months ago. Each day we seem to get slightly fewer smiles than the day before.

We're going to speak to his neurologist about trying new seizure control medications as the steroids lose their effect. We won't waste any time, since for the most part, his seizures are still under relative control, and now is our best chance to try a new medication.

July 21, 2010

The new Bertrand, and our biggest fear

It's safe to say that we have a whole new Bertrand on our hands.

For most of the day, Bertrand is happy.

He engages socially.

He reciprocates emotionally.

He's been exploring his environment.

The seizures disappeared completely under ACTH, and when we weaned him, the rage subsided, leaving us with a normal "4-month old."

We have never been so hopeful for Bertrand, and never happier as parents.

But, there's also fear hanging over us.

For the past couple nights, he's been having absence seizures again. Unlike two months ago, these seizures leave him noticeably disoriented when he comes out of them.

For the first time, I can see terror in his eyes.

For the first time, he seems to have a sense of what's happening to him.

We're afraid that as the steroid ween continues, more seizures will return and turn him back into neurological jelly.

In case we've only got a short window of this happy, loving, exploring child, we're making the most of it. We're getting up early and staying up late to play with him. And, we're cramming as much development and progress in as we can.

Bertrand deserves no less.

July 15, 2010

What cord blood could potentially do for Bertrand.

Bertrand will be having his umbilical cord blood infused on August 24th at Duke University. This is a simple outpatient procedure--it is not a transplant. There is no rejection risk as it would be his own blood. The theory behind this procedure is that stem cells, such as those found in umbilical cord blood, automatically go to areas of insult/injury in the body. In the case of children with cerebral palsy (as shown in the video below), these stem cells can cross the blood brain barrier and potentially repair brain damage. In Bertrand's case there is a small chance the stem cells could repair some of his brain, liver and nerve damage. This video does a good job explaining why we have to at least try infusing Bertrand with his own banked cord blood. There is nothing at risk except money. Even if it doesn't work, the peace of mind that we've tried everything we could for Bertrand would be worth it.

FOX and FriendsGirl’s Own Cord Blood Used to Treat Her Brain Injury

Watch Now

UPDATE: And here is another miracle case from Duke's website.

July 14, 2010

Busy, busy

There's a lot to write about Bertrand, but lately, Cristina and I have been pretty swamped. (Cristina's still moving through the backlog of email and tasks that started piling up in the hospital.)

I'm hoping we'll get some time to write it all up soon, but in the mean time, I want to share a video of Bertrand with you:

It's Bertrand flipping through one of his Elmo books. Sorry for the lack of nice editing. I don't have Cristina's skills. We just wanted to show you that Bertrand is doing better than ever, and we're hopeful that moving forward that we can keep these gains.

And, here he is from the front:

And, here he is "holding" a bottle:

July 2, 2010

Post-Hospitalization (Time with Grandmothers)

Bertrand is much improved after his hospitalization last month. He has become such a cheerful (and still seizure-free) little man! He is on oxygen only at night. B has enjoyed the time he has spent with his aunts, great-aunts, grandmothers and great-grandmothers. Here are some photos of his time with his Nana and great-grandma Vi and a video taken by his Nana. Enjoy!