If 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
1. 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.
She 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.
Yeah, 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.
Treating 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
We’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.
