Stem Cell Therapy for Cerebral Palsy – Sofia O.

My name is Maria, I’m Sofia’s mom, and this is my husband Sean, and that’s Sofia!

Sofia suffered a lack of oxygen at birth and has cerebral palsy because of it, so it’s a middle-grade injury.

We’ve been here last year for the stem cell treatment and she showed immediate improvement. Her circulation improved. She used to have purple toes and that stopped since the last treatment. Her vision improved. Her far-away vision last year, and this year she has reported to us that she has more sensation in the body, her hearing… like, last night we went out and she didn’t need the headphones. She was okay.

She wasn’t bothered by the noise from the traffic. She was much better, looser, and happier.

And definitely, she also reported that her vision improved even further. She was able to describe the colors of the cars, birds that she saw from the 24th floor.

And today, she says she doesn’t have pain in her arms and stomach anymore, so she feels looser and more comfortable.

Bixby family raises money for son with cerebral palsy to receive second round of stem cell therapy

Stem Cell Recipient Easton WallaceBIXBY, Okla. – A Bixby family has new hope for their three- year-old son with cerebral palsy. Easton Wallace went to Panama last year to receive stem cell therapy. Unfortunately, the therapy is not FDA-approved in the United States.

The Wallace family held everything from spaghetti dinners to golf tournaments to raise the money for their son’s first treatment. His mother believes it was worth it. She says Easton is learning to talk and gain upper body strength. That is why she is hoping to raise enough money for a second treatment.

“He’s the happiest little boy ever. He can make anyone smile. He’s always smiling,” says Cassie Wallace.

Easton Wallace is a typical toddler. He loves playing outdoors and spending time with family. But unlike most other kids, Easton is living with spastic quadriplegic cerebral palsy, which affects every aspect of his life.

“He can’t sit unattended. He can stand up. He can’t crawl or walk or anything like that,” says Cassie. “He has trouble with his fine motor skills, eating.”

It’s hard for Cassie to watch her son struggle. But she says Easton’s infectious smile and loving personality give her strength.

She told 2 Works for You, “I try to be positive. We are just trying to everything we can for him to give him the best life possible. He has such a positive attitude. He’s so happy and determined. So I think that makes it easier.”

Cassie says a big part of giving Easton the best life possible, is taking him to Panama to receive Stem Cell therapy. She says the $20,000 treatment is not covered by insurance.

Easton’s first treatment was last December. Cassie say it’s working

“He’s repeating everything. He’s putting more words together. It’s really been helping.”

Cassie showed 2 Works for You video of Easton pushing himself in a device called a “pacer” for the very first time. She says this was a big day for their family because they never know for sure what milestones their child will get to experience. That’s why she and her family are trying to raise enough money to cover the expenses for another trip to Panama in December of this year.

The family is organizing another golf tournament in Sapulpa on August 29 at Clary Fields Golf Club. The event is called the “Easton Open.” There is still time to sign up by calling 918-248-4080.

You can also donate directly to the cause by logging on to Easton’s give forward page here.

Original Story and Video on KJRH Tulsa Website

Colton’s walking after stem cell therapy for cerebral palsy in Panama

Colton is planning on coming to Panama for follow-up treatment later this year. Here is a video of him walking from June 2015.

And here was Colton in 2014 about one year prior to the video above. This video was taken a year after his first treatments in 2013.

To keep up with Colton’s progress on Facebook, please visit: https://www.facebook.com/ColtonMittmanFundraiser

Stem Cell Treatments for Cerebral Palsy – Mary Washington’s Story

Sarah Washington and her daughter Mary. Mary is 2 years old and was diagnosed with cerebral palsy when she was 4 months old. She was first treated at the Stem Cell Institute in Panama using human umbilical cord-derived stem cells. Mary received these stem cells intravenously over the course of 4 days. Her first treatment was in September of 2012. This interview was recorded in March 2013 at the clinic while she was there for a second round of treatments.

What kind of improvements have you noticed?

Overall, in general, what we noticed was, her upper body, she’s very stiff. She’s spastic in her legs and her arms and she has low tone in her trunk. In her upper body, we noticed a pretty significant improvement. Her range of motion, she couldn’t lift her arms over her before and now she can do that on both sides easily. And her hands, she was in tight little fists most of the time, whereas now if she is in a fist it’s very loose. But most of the time she kind of has her hands relaxed. That was a big improvement for us; small but significant for our family.

Her vision has improved, not necessarily distance but as far as like what I think as seeing details. So she would be able to tell the difference between you and me if we didn’t say anything. Whereas before, I don’t think she could do that. She would rely on smell and hearing more than her vision. Now she uses her vision a lot more. So that’s been an improvement that we’ve seen.
She is more involved in the world around her. [She] wants to be more involved in the world around her so that’s good. She has definitely, she doesn’t say, “mama, dada, ba, ba” yet but she definitely is making more vocalizations, making more sounds and trying to experiment with her voice, which is a positive thing.

She is trying different ways of communicating versus just screaming which is what she did before because that is all she knew how to do. And now, she is kind of fussing or sometimes she’ll just kind of like, yell and stop and wait for me to answer her instead of just going from “zero” to “scream”. So her communication has improved as well.

One thing that we were not expecting that we were pleased about is an improvement in her seizures. That wasn’t even something that we had even, I don’t know. I guess it just didn’t occur to us that maybe this would be helpful with that but before we came the first time in September she had been sick and we actually had to delay our trip twice because she had bronchialitis. She was just having a really hard time. And she was having a lot of seizures. We had to add a new seizure medicine to try to get them under control and she was having 6 or 7 short myotonic jerks every day. The first time we were here, by about Thursday, which was like day three of treatment, of stem cells we noticed that she hadn’t had a seizure that day. Whereas before, she was having 6 or 7 a day. And so, that was one thing. It was surprising but it was a nice surprise that those have improved since we’ve been here. She will still have breakthrough seizures every now and then when she’s sick, teething but she, we haven’t gone back to that, where she was having them on a regular basis. So that’s good. That’s been a good improvement.

Since we’ve been here this time, I haven’t really seen anything where I could say, “Oh, I think that’s the stem cells.” yet but I do know that last time it did take a couple of weeks for us to notice, you know, or to really pinpoint and say, “Yes, we think that is the stem cells. There’s no way she could have done that before.” So, and all of our therapists agree that her range of motion and her upper body for sure, and her vision would not have been the way they were without coming here.

Stem Cell Treatments for Cerebral Palsy: Hudsyn

IMG_6901If you haven’t been following our story on stem cells since the beginning, check out our previous blog posts first:

1. Exploring Stem Cell Therapy for Cerebral Palsy: This is how we came to our decision and provides lots of background research as to why we started down this path.
2. Panama City – Hudsyn’s Big Adventure: A recap of our trip and all that we experienced while there.
3. Hudsyn’s Stem Cell Therapy: 1-Month Update
4. Happy 2nd Birthday Miss H!: I wrote a letter to Hudsyn on her birthday…and near the end are a few other updates.
5. Hudsyn’s Stem Cell Therapy: 2-Month Update

So now that you’re fully caught up, I’m sure you’re anxious to hear about her most recent progress:

Improvements We’ve Seen

SeitzureTrendbyMonth - Dec 20121. Extreme Seizure Reduction: While we had nearly a week of zero seizures (huge leap from the 6-10 she was averaging before stem cells), she broke her record and has averaged 1-2 per day since that week in November. But we’re so much more hopeful that between her Keto Diet and the stem cells, we’ve got things under control…finally. It makes me teary to fully embrace this accomplishment because two years ago, we were watching our little girl have 40-50 a DAY, rendering us helpless as her brain became severely affected by them. Even medications had failed to help her. And now…to for a moment think that we might have a future without seizures is, well, just amazing…a miracle. Praise God!

2. Physical Therapy/Occupational Therapy: I attended one of Hudsyn’s therapy sessions at RIKC Friday, Dec. 7. She bore weight on all fours (with the help of arm braces of course) for over 8 minutes without complaint…a new record! We really enjoy our relationship with the team of therapists at RIKC. Erin (her OT) and April (her speech therapist) adore Miss H….and both are often caught between appointments coming to talk to or hold Hudsyn before it’s her time to work with each of them. We hope we will be able to continue her regular sessions here throughout this year. It truly is one of the best, most prominent therapy centers we’ve worked with thus far.

Here, you can see Erin holding her iPad, working from an app called Ladybird Baby Touch. The physical therapist is bracing Hudsyn’s head here so she doesn’t move her body to get the penguin on the screen and instead has to use her arms independently. This is a lot of work…but she DOES it:

3. Increase in Responsiveness & Smiling: This is the fun one. I can’t tell you how much joy it brings to see her interacting with more people now. We’d see this every so often (maybe once a day) before stem cells. Now…it’s on demand. If you talk, hold, sing, read, etc to Miss H…you’ll likely get a big smile or some type of physical response from her. There’s a big personality inside that little body…and we are completely in love with it.

4. Social Interaction: Hudsyn continues to enjoy preschool at CCVI.

IMG_6930She participated in her first school Christmas program last month. I must admit, I was pretty emotional watching the event. Not only was the setup and organization behind something like this incredible, but I realized deep down that I didn’t think I’d ever get to be in the audience watching my 2 year-old daughter shake jingle bells and be on stage with all the other kids in preschool. I had really come to a place where I’d accepted that she wasn’t going to be normal…that she wouldn’t be able to give us the joy of watching a holiday music program. But there she was, sitting on one of her therapist’s lap while thrusting her whole upper body forward, working hard to shake her bells as everyone sang the familiar songs.

Santa and Hudsyn 2012Yeah, I bawled like a baby. I’m sure the folks sitting next to me understood – either they wrote me off as a 9-month pregnant woman being emotional or they were teary right along with me. There were several wet faces in the audience that night. It was a wonderful holiday gift from our little girl. And, after the program, Hudsyn got to meet Santa for the first time!

Some Backsliding
Her frequent vomiting is back. But we really believe this is a result of the winter weather, thus contributing to some nasal mucous that is building up in the back of her throat and causing her to gag/vomit during key times of the day. These times are usually in the morning and then again in the evening. The vomiting isn’t the same as it was before, though. It’s not projectile, but instead a real puke…like you and I would do if our stomach was upset or we had something caught in our throat. She gives warning signals before doing it, so that’s been helpful in getting her to the bathroom sink on many occasions.

Another thought Dan had was these scheduled pukes are happening about 30-45 minutes after we give her meds. You can time it almost exactly every morning and evening. We discussed this with Dr. A (her neurologist) last week at her regular Keto Diet follow up appointment. Dan wondered if maybe the meds are causing this reaction whereas before her brain was more in need of them than after stem cells. So we were hoping to begin eliminating this drug, especially since the sharp decline in her seizures. Keppra in particular causes dizziness and nauseousness as side effects – even in small doses.

Dr. A agreed to begin slowly weaning her off Keppra and we’re happy to report that in one short month, she will be rid of it and all its side effects. We’ve also eliminated her Citicholine as it had some similar side effects and we weren’t seeing much benefit to this supplement any longer.

IMG_6958Treating the mucous is a bit harder. She can’t have regular expectorants or decongestants like you and I because of the Keto Diet. So, we’ve upped her water intake significantly which will hopefully help to thin it out. I’m glad we did it when we did because the next few days after her neuro appointment were awful. Miss H contracted the flu and a nasty cough coupled with a 102 degree fever. Tis the season! Thankfully, this time we were able to avoid being inpatient, mainly because of her G-tube and that we could force water, food and meds in her without putting them in her mouth. Without it, she would’ve been in the hospital. This time last year we were fretting about whether to do the G-tube surgery or not…and now…we don’t regret it one bit.

Miss H is still battling the cold/cough, but we’re happy to report her fever broke and the vomiting has decreased enough that she’s on full feeds again.

The last “backslide” that we’ve seen is one we’re actually happy about. Miss H has taken to some behavior much like that of a typical 2-year old in that bedtime is a huge fight. We used to be able to lay her down and many nights she’d go to sleep quietly. It’s predictable now that she’ll cry 30-90 minutes straight while attempting to go to sleep. She’s also learned during the day to manipulate anyone nearby (but especially her parents & grandparents) when/if she’s bored, she’ll fuss or fake coughing to get attention. The most recent incident of this was running an errand to Children’s Mercy, Dan captured this:

While most parents would complain or be annoyed by this behavior, we’re THRILLED. This is just more of her personality and desire coming out to communicate with us…and we couldn’t be happier as a result.

Overall Thoughts on Stem Cell Therapy for Cerebral Palsy
IMG_6905We’re now over halfway into our post-stem cell therapy journey with this being month 4 of 6. After six months from her first visit, Miss H is eligible to go back to Panama for another round of stem cell IV injections. Many of her fans, like you, have wondered if we’re planning to go again. We’ve been discussing this extensively with Dr. A, who has several other patients curious about the treatment. In addition to sending him journal articles and published academic studies from the Panama doctors we’ve showed him several of Hudsyn’s videos, her seizure tracking chart (above) and how she responds to our voices with smiling and interaction. He’s been amazed at her progress and obviously is very pleased. His only question is whether these improvements are a result of the stem cells or of normal development she would’ve had anyway. This exact question is the primary point of the clinical phase II trial Duke University is doing right now.

As her parents, we have to force ourselves to look at this objectively. Because in our heart of hearts, and after everything we’ve been through as a family…and everything Hudsyn has had to endure medically, we really just want this to work. With that perspective in mind, we’d love nothing more than to be able to say that umbilical cord blood stem cells are a “cure.” But we feel strongly that the science needs more research and development before we’re to that claim.

We will, however, say with the below evidence, Miss H would’ve never seen this kind of development in such a short period of time without stem cells.

  • Her field of vision went from 20% to 100% in less than 3 weeks.
  • Seizures became nearly non-existent after two months. As a result, anti-seizure medications (and all their “fun” side effects) are being discontinued.
  • Vocalization, eye contact and general responsiveness improved significantly within 1 month.
  • PT, OT, Speech and vision therapists documented large enough gains during her 3-month therapy visits that they claim are “remarkable” for a child with Hudsyn’s brain injury. With no other changes to her treatment, we must look at stem cells as helping with these gains.

To say that stem cells are a complete cure is false. But to say they have improved her quality of life is certainly true. We believe the combination of intense PT, OT, speech and vision therapy (with stem cells being at the primary level of the treatment plan) have not only helped Miss H repair some of her original brain damage, we know they’re allowing her to make exponential leaps in shorter periods of time.

As a parent who knows this treatment works…and knows its available for those who seek it out, the question remains…

Will we go to Panama again? We can faithfully and loudly declare: Hell yes.

Stem cell Therapy for cerebral palsy: Dylan Hancock (Mansfield News Journal)

Dylan and Tessa Hancock - Stem Cell Treatments for Cerebral Palsy

Stem Cell Therapy Subjects Dylan and Tessa Hancock with their father, Jeremy

Written by Jami Kinton
Mansfield News Journal

ASHLAND — Three-year-old twins with cerebral palsy are making life adventurous, challenging and bittersweet for the Hancock family.

“They’re happy kids but it definitely makes it more difficult because as a parent you want them to have every opportunity that every other child has,” said mother Carrie Hancock. “It’s hard, but we’re handling it the best we can.”

Because they were born 10 weeks premature, both children suffered developmental delays.

By the time Tessa and Dylan were 20 months old, Tessa had been diagnosed with cerebral palsy, a permanent disorder that affects movement and posture. At that time, parents Carrie and Jeremy were getting ready to take their daughter overseas for a stem cell transplant, a procedure that would allow Tessa to live a better, less physically restricted life.

The results were remarkable…

In the midst of their planning, the family was soon faced with another obstacle. That January, Dylan also was diagnosed with cerebral palsy.

“What do you do? They’re your babies. You just go with it and do what you think is best,” Carrie said. “Before, we were always told that he just had developmental delays, but as much as you hated to hear it, it was almost a blessing because we were paying out of pocket for him because he hadn’t been officially diagnosed.

“That’s the silver lining I guess and now we’re able to get him the help he needs.”

The Ashland family ended up taking Tessa to Panama City, Panama, where she had her first round of stem cell treatments in 2009.

“She did really well and had a lot of improvement with her vision,” Carrie said. “Her tone in her hand had decreased and she wasn’t fisting all the time. When we went back in July, we took both the kids.”

The results were remarkable.

“As soon as we took him, he was like a whole other kid,” Carrie said of Dylan. “He was babbling and it helped him in so many different ways. He also just walked independently a couple months ago. For Tessa, it made her stronger. She was already smart and attentive.”

Today the twins attend therapy sessions at MedCentral Pediatric Therapy one day a week and preschool at Tri-County Preschool four days a week. They receive occupational, speech and physical therapy.

“A typical day for us includes them going to school a little after 8 and they’re picked up a little after 11,” Carrie said. “After we get them home and fed, Tessa goes down for a nap and then Dylan stays awake and I get alone time with him, which is nice. We work on walking and sitting up with them, but try to incorporate it into their play. We try to make it a fun time.”

The family takes the twins on outings by stroller and enjoy their play time together, but each day can be daunting.

“The biggest difference is the physical challenge of dressing and feeding. Tessa is in the process of being potty trained, but Dylan doesn’t want to yet,” Carrie said. “She can’t feed herself and we’re still changing diapers at age 3.

“Dylan’s not walking. If you ask him to pick up something, he doesn’t understand. It’s challenging.”

Recently, Dan and Stephanie Kreisher, of Ontario, held their third fundraiser for the family. Jeremy was on Dan’s 1994 state championship baseball team at Ontario High School.

The Kreishers and friends raised $1,400 for the Hancocks, along with providing them two iPads for Tessa and Dylan after learning the electronics would help their communication skills. The iPads were sponsored by Elite Excavating and Zara Construction.

“We have so much and are so fortunate that we wanted to help others,” Dan said. “Jeremy and Carrie are such positive people. They’re the happiest parents, just very admirable people.”

The feeling was mutual.

“I can’t say enough about Dan and Stephanie. The iPads are huge for us. We’re in the process of getting different communication devices to help with fine motor skills,” Carrie said. “They use them in school and it’s nice to be able to incorporate what they’re learning at home. Life isn’t easy, but we are very blessed.

“The best way to describe our family is that we’re taking the scenic route. We’re taking the back roads. We’ll get them there, but it just might take a little longer.”

2012-12-03T19:42:57+00:00 December 3rd, 2012|Cerebral Palsy, Patient Stories|

Stem cell therapy for cerebral palsy: Sarai Nathan

“Sarai walking with assistance after stem cell therapy in panama. She could not even stand before.” – Elizabeth, Sarai’s mother

Sarai Nathan suffers from mild spastic quadriplegic cerebral palsy. She came to the Stem Cell Institute at the beginning of August 2011 when she was about 16 months old. The following is a transcription of a phone call interview with Sarai’s mother, Elisabeth. It took place on January 18, 2012 about 5 1/2 months after her stem cell procedures.

How is Sarai doing since receiving stem cell therapy five months ago?

She’s walking with very, very little support. Ever since we got the stem cell transplant, there’s been tons of progress. The major thing that I relay to people is that the stem cell treatment kind of put the cells in place to rebuild everything.

We flew right from the stem cell treatment to a place called the Napa Center and did a three-week intensive [physical therapy] program four hours per day and she was a completely different person four weeks later.

This is the most amazing, miraculous thing I have ever seen. She’s a completely different kid. Where did you go? – pediatrician

Once the stem cells migrated and rebuilt, all-of-the-sudden she was able to able to do all these things crazy quickly. It was unbelievable. She went from not being able to sit to sitting, standing cruising furniture by herself; without any assistance at all and she couldn’t even lift up her trunk prior to coming to Panama. Out of 100% being fully recovered, I would say she has had an 85% recovery since before the stem cells.

I know that the stem cells kind of laid the groundwork for that progress to be made but I definitely believe that doing the intensive right after the stem cells sealed the deal. I don’t think it was just the stem cells. I think that doing one right after the other made the progress amazing.

Did you try any other kinds of treatments before stem cells?

We tried hyperbaric [oxygen treatments] which worked but I noticed that the results regressed a little bit after a few months. It would make her spasticity better and then little by little I’d notice it start to come back 3 -5 months later. The whole thing was very expensive and time consuming though.

How did you find out about the Stem Cell Institute?

I am really active on a lot of Yahoo groups and I read about the parents who had positive results with stem cells and many had good experiences with the Stem Cell Institute. So I called them and they were really on top of getting back to me and answering all of my questions.

And my dad, who has a background in law enforcement, had it checked out as well because he said that he wouldn’t pay some crooks to inject my kid at some random place in Panama. After everything checked out, he helped me pay for it. And I am so glad that we got to do it.

What is your opinion of the doctors and medical staff at the clinic?

We tell people all the time that it was the best medical care we’ve ever received since our daughter was born. The hospitals, doctors, they were all far superior in patient care. They were prompt, professional, loving and they still check in with us all the time.

And the IV, I’ve never seen someone nail an IV that quickly. Randy Bowen [MD], who did all of her IV injections was just so good. My daughter had a huge crush on him and on the second day, actually started handing him her arm. Instead of crying when she was about to get an injection, she would look a little scared and just hand him her arm like, “Alright, just get it over with.” She was only 16 months old so it wasn’t like she could talk or anything.

What do her doctors and therapists at home think?

Well, I didn’t tell her pediatrician that we were going because I knew that he would try to talk me out of it. So I made an appointment right when we got back from the stem cells and the intensive. [at the appointment] I had her sitting on the table by herself and he walked in and said, “Oh, my God! What did you do?” I told him that we actually took her to get a stem cell transplant and he said, “This is the most amazing, miraculous thing I have ever seen. She’s a completely different kid. Where did you go?”

He was asking me about all the information for the clinic; everyone’s name and number. He also said, “I would have tried to talk you out of it so I am so glad you didn’t tell me. What happened to your child is unbelievable and it makes me want to fight and advocate for stem cells.” He’s been specializing in neuro-developmental delays for a long time and said that he would everything he could for the rest of his life to advocate for this therapy.

Now the center that did her intensive [physical therapy]…the things they said were, “I’ve never seen a child progress so quickly.” They watched her spasticity go away and they also watched her strength increase and all her therapists just kept saying, “It’s not usual for a kid to progress this quickly. She is doing exceptionally well.” All of our therapists – when we got home to Hawaii – they said the same things, “This is like a completely different child. This is unbelievable.”

And they asked me, of course, where we went.

Stem cell therapy for cerebral palsy: Tessa Hancock

The biggest thing we’ve noticed is her ability to track people and her vision. Her cognitive skills have improved. Before her stem cell treatment 7 months ago, she was like a 50 watt light bulb and she is like a 200 watts in comparison. She reacts more, holds her head up more and her hands are nice and open now, not fisted like before. Hand to mouth motion is much easier for her to do. Her range of motion, in general, is much better. She can now raise her hands over her head and she was never able to do that before.

Her therapists have seen dramatic changes. Our family has noticed changes. The neurologist has noticed changes. We are very thankful that we were able to get this treatment for her in Panama. We couldn’t imagine her not being who she is now. She is 200 times better than what she was.