As you may know by now, we will continue to seek out all medical options + therapies for our sweet girl. Finley is almost 4 years old and was diagnosed at 15 months old with "Mild Spastic Diplegia Cerebral Palsy." Aside from intensive therapies, we do everything we can for her (check out other blog posts). She underwent the Selective Dorsal Rhizotomy Procedure this past October, with Dr. Park in St. Louis - which permanently removed the spasticity in her body. (READ MORE HERE.) While you're researching ways to improve your child's quality of life when it comes to their cerebral palsy, you'll come across SDR. You will ALSO encounter Stem Cell Therapy. It's extremely pricey and still considered to be in the "research phase," but word on the CP Community Street is that it in fact does wonders! My understanding is that the cells enter into the body and begin "getting to work" by traveling to places in the body they are needed. In patients with brain injuries or neurological disorders, the stem cells are able to bridge gaps and form newer neurons that repair the damage to the brain, some result in miraculous improvements with just one treatment. When I refer to Stem Cell Therapy it means one single session or one transfusion. Bear with me, I'm not a doctor by any means and I am doing my best to deliver a really informative blog post on this complex medical treatment.
My husband is a devoted listener of the Joe Rogan Podcast. One of the guests on his show was what I would call a "typically healthy" individual and it seems as though he opted to undergo Stem Cell Transfusions to see if he could become stronger or healthier. Can you imagine? Some people obviously have gobs of money... but this was a way we were able to learn about the use of the cells, which is just extremely interesting, isn't it? Pardon the profanity and illicit content, but if you want to listen to that podcast, click HERE.
I knew Stem Cells were something we would totally do down the road, I thought our only chance would be enrolled in the Stem Cell Study at Duke University (FOR MORE INFO CLICK HERE). I was at peace with waiting for the Duke study, I really believed we had no other option.
So many have asked me how we found this office or why we chose this particular facility. There's really no short way to explain the nature of our association to this Office/Doctor. A few months ago, I received a message from Dr. John Shieh (pronounced "shāy") of RejuvaYou- located in South Pasadena, Ca.
Quick background on our relationship with him: Dr. Shieh adored my Dad and also treated him. My dad was a KKLA 99.5FM Radio Host of "The Frank Pastore Show"- which won the NRB's 'Talk show of the year' several times (Proud Daughter brag moment.) It was an LA drive time show and he was just the best- naturally he developed some great relationships with his sponsors. RejuvaYou was one of them. Matter of fact, the day my Dad was struck on his motorcycle- he spent his morning getting a treatment in Dr. Shieh's Office. My dad later passed away due to complications, which was about 4.5 years ago now. Dr. Shieh and his family were so wonderful through it all. He continues to treat my Mom and Sister-in-law.
The message read:
I hope all is well for you and the family. I've been following some of the great progress with Finley and she is truly blessed to be in your family, and I'm sure you are all blessed by her too!
Anyway, I was wondering if you had looked into stem cells for her? We've been doing stem cells for a few years now and have seen amazing response with previously untreatable or terminal conditions. We were using adipose derived stem cells first, and I have the latest advanced device for processing and separating stem cells from the fat. One case I did was on a 2 1/2 year old boy who was a drowning victim. He was in the water for 20 minutes and all the experts thought he wouldn't survive, much less make any type of progress in recovering. For about a year he was stagnant in improving. But, after a year I did his stem cell procedure and within 3 weeks his therapists and other doctors were shocked by his sudden improvements. He became able to swallow on his own, make single vowel sound words, and started to stand on a walker. That first case we used his own fat. But just recently we used new cord blood stem cells.
Recently the FDA approved stem cells derived from donated newborn cord blood. These are from screened, healthy newborns. Those cells are ideal for people who don't want to undergo the mini-liposuction procedure, and they are much better than the cells from an older persons fat.
The main way these stem cells are administered is through a basic IV.
For other cases, like brain injuries and Parkinsons, we would also also administer via nasal spray because the cells travel up the olfactory nerves directly into the brain.
Anyway, I thought I would just mention this to you in case you had thought about it. You no longer have to go out of the country for that, and in those places you don't know what you are getting. Also, even local places are sometimes shady because they aren't using the best possible stem cells.
Of course if you wanted to do this for Finley, we could work something out.
Wish you all the best,
Shock. Tears. All the feelings. It was an answer to one of the many prayers that we pray for Finley.
A few weeks later, I took Finley in for a consultation. Dr. Shieh needed to see what her vein situation was and make sure it was something we could do in his office and bypass 'putting her under'. I really like to avoid anesthesia. I never opted for it when she received her Botox treatments- because it is such a quick visit and a little Diazepam (Valium) always does the trick.
We discussed everything he wrote in his initial Message- but with a little more informal Q&A. Basically, though, the message hit all the key points. I always thought that Stem Cells had to be harvested from one's own umbilical cord. While this used to be the case, the screening process of Donor Cord makes them just as good to use. These donor cord stem cells are 'immune priveledged' which means they don't cause any rejection when given to a person different from the donor. I got hundreds of emails from parents specifically asking about THAT- rest assured there are options for you guys and your kiddos out there! Expensive- but they exist!
Our two options:
1. We could do a mini-lipo on her and pull stem cells from her own fat. (Number of cells vary depending on amount of fat harvested, but usually range from 30 million to 100 million+.)
2. We could use Donor Cord Stem Cells. (This comes in pre-counted vials of 30-million stem cells, the dose can be chosen based on weight of person receiving treatment.)
Whether they use cord derived from stem cells or adipose derived from stem cells, they also come with tens of millions of other regenerative cells and growth factors that play a role in the regeneration of damaged tissue.
We both agreed Donor Cord Stem Cells were our best option. Dr. Explained to us that he's used Donor Cells on himself and patients and only seen great results. (Reference his initial message again.) There are two banks in California- one in San Diego and one in Irvine- so the cells were to be driven up the morning of the appointment.
The BIG DAY arrived and I brought Finley in for her appointment. She ate and did everything as normal. I was anxious simply because, I'm a mom. I thought, "What if she has some crazy reaction and dies?!" My husband smiled and said, "No one has ever died from stem cell treatments. It's like getting a huge boost of amino acids injected into your body. They are super nutrients! It's the medicine of the future, we are so lucky to be doing this for Finley- it's awesome!" He's always been the optimistic type. Let it be a testament as to how you can KNOW something is good and still be anxious. That's motherhood at it's finest.
About 30 minutes before the appointment she took a dose of her prescription Diazepam. Which I really hate giving to her, even though it's prescribed for her to be taking nightly (it can help with muscle spasms - but thankfully she doesn't have them). If she were to be doing this in a hospital, it's the same medication they would give her before they administer the IV to be putting her under anesthesia. It brought her to a nice, calm, and happy place.
She was very relaxed, but still watched intently as the staff positioned themselves around her. The Doctor administered the IV. Once everything was situated, I feel like he could sense my heart beating out of my chest. He held the large syringe of Stem Cells and said, "Let's Pray first." It was such a beautiful and calming prayer, his heart for Christ is just so amazing. He administered the Stem Cells into her IV, and then took a small amount and sprayed it into her nose. He told me that studies show how the cells will multiply about a dozen times or more once they are in the body, and that administering through the nasal cavity ensures they penetrate into the brain - where her injury is. (Which he also mentioned in his initial message.) She didn't love that part, but who loves having an odd smelling liquid sprayed up their nose? It does have a very distinct scent.
I asked about side effects again. The only side effect would be if she were allergic to the Sulfa that the cells were stored in. Sulfa is common in antibiotics, which she's taken- so I brought Benadryl just in case (Mama Bear on duty) - but we were confident she was going to be just fine. (AND she was. Thank you Lord.)
The Appointment was about 1 hour from entry to exit. It will take a few weeks for the cells to get all situated in their new home and we will see continued results as they 'connect the dots'. They don't wear off and improvements won't subside. Doctor said it could take up to a few weeks for the cells to reach full potential. They way I see it; these cells are bridging previously damaged gaps, once restored it will still take time to see continued results - they are creating a pathway for progress, which we are beyond grateful for! Every little improvement helps.
That night my husband and I already saw something that was an incredible improvement. Oh how I WISH I had video to showcase this:
Pre SDR surgery: Finley could not move her toes.
POST SDR surgery: Finley could move her toes in a direction, ever so slightly.
POST Stem Cell Therapy: Finley could WIGGLE her toes!
We have seen so much progress! Her energy levels have been substantially heightened. She's more inquisitive, using a larger vocabulary with her speech, she scratches parts of her body she never did before, she's differentiating between her toes 'hurting' and 'itching'- (I believe she possible nerve damage from the years of spasticity she had pre-SDR.) She's also RUNNING BAREFOOT in her walker. She used to not be able to maneuver in it without the support of her braces. That was all observed on DAY 1. As of 6 days out: she tells me when her diaper is wet, and has more control with her Fine Motor Play. She even pulled to stand in a shopping cart- I cheered her on and people thought I was nuts! Haha! Progress as of about 10 days out: Finley is swimming substantially better in her floaty, her movement seems more controlled. She insists on walking almost everywhere, and has even mastered crawling up onto new things. Her bowel movements have always been strained, and even though they've improved since SDR in October 2016, she is now having no issues going. Which is pretty incredible.
I'm so excited to see what the future has in store, I know walking independently is on the horizon. We will definitely be continuing fundraising with Youcaring for future treatments. I believe you can undergo as many treatments as you can afford (remember: even "healthy" people do it). Since posting on Instagram, I have received many heartfelt emails! Wow the tears reading them all- THANK YOU!
If you have any questions that are not answered in this blog post, please email me at FIFIANDMO@GMAIL.com
For Dr. Shieh's Office please contact:
check out more info on their FACEBOOK PAGE while the website is being updated.
I have read that typical costs per Stem Cell Transfusion range from $12,000-$25,000+. However, for these special circumstances- Children with CP may be treated by Dr. Shieh's Office for under $10,000 - while costs could vary depending on other factors, most of the time it will remain under $10,000.