Rory had her first stem cell therapy on June 15, 2018, so as we cross the 7 month mark and are about to do our third stem cell treatment next Monday, 1/21/19, I wanted to give an overview of the gains she has experienced.
If you would like to know more about our experience with stem cells, you can read our stem cell introduction here, read a <super long and detailed> daily journal of the three months following her first stem cells here, read her three month update here, read her in-between 1 and 2 report here and read <another super long and detailed> daily journal of the three-ish months following her second stem cells here.
I also wanted to point out that we are not doing stem cells in isolation, and so many other things have contributed to the progress she has made: a crap-ton of therapy, most notably PROMPT speech therapy (plus the introduction of her AAC “talker”) and ABA-VB that both started right after her first stem cell therapy last June, plus continued OT and PT, for a total of 14.5 hours of therapy a week. She has an amazing special needs dance class once a week and attends typical preschool two mornings a week, both of which are just as important as her therapy. As for supplements, she is currently on zinc, iron, CoQ10, N-acetyl cysteine (NAC), lithium orotate, vitamin D3-K2, inulin (plus cooking with EVOO, so basically Nemechek Protocol minus the fish oil), and the fabulous CBD oil that I am giving the “best supplement award” to for the way it improved Rory’s poop since we started it and is helping with behavior too, plus Liothyrinine for her low T3-free thyroid. She also recently finished a 3-month course of CDP choline to reduce her sPLA-2 inflammation marker. Since beginning all of these supplements, which she is on because the lab-tested numbers were low, all of her numbers are in optimal ranges, and we continue them to keep her there while her body is healing.
Rory has severe apraxia and has always struggled with expressive speech most of all. This was the most-wanted gain going in to stem cell therapy, and while I didn’t have terribly high hopes, especially since she didn’t have many gains here for the first three months after her first stem cell treatment, we are finally seeing some significant progress. It started at the 4 month mark after her 1cc Invitrx, when she was getting about one new word a week, then took off after her 1cc Predictive, going up to one or a few new words almost every day. She was at about 20 words/approximations prior to stem cells and is now around 170 words, and she has started putting two words together on her own (e.g. hi Santa), and will repeat multiple word phrases (e.g. I love Mommy) one word at a time after me. Don’t get me wrong, we still have a LONG way to go, but she spent 20 months to 4 years making only the tiniest progress in therapy, and on her latest speech evaluation, she met all three of her long-term goals and most of her short-term goals. She gained most of her vowel sounds, many of her consonant sounds, and is finally participating in therapy. She previously hated having her face touched, and now she lets Nicole do PROMPT on her with little fight. Rory is not yet conversational at all, but we can have dialogue now, where I can ask her questions and either with her talker or verbally she can answer them. She can ask me for something, I can say no, and she can argue yes with me. Her expressive speech is very garbled and not easily understood if you don’t have context, but more and more people she sees regularly are able to understand her now, which is amazing.
Most notable for speech are the age equivalences from her last evaluation before stem cells in February 2018 compared to the one she just completed in January 2019. On the last one, her receptive age was 2-5 and Expressive was 1-8, while now they are 3-2 and 2-9. For comparison on how slowly she was progressing before stem cells, in January 2017 it was 2-3 and 1-3. So to sum it up, from 2017 to 2018 she only gained 2 months receptive and 5 months expressive, while from 2018 to 2019 she gained 9 months in receptive and 13 months expressive. Her next long-term goals for the next 6 months are to get both receptive and expressive up to 4-0!!! Almost age appropriate!
As many special needs parents will understand, every therapy evaluation I’ve ever gotten has crushed my spirit a bit, and I have cried more than a few tears over them. Seeing spelled out and black and white just how severely delayed Rory is, and watching the same goals be recycled because she’s not meeting any of them…well, it’s hard! I mean, it’s not surprising anymore, because I know Rory and I see how much she struggles every day, so it’s not a shock to see it. But the speech evaluation I just got from Nicole made me cry happy tears because I was able to see PROGRESS. She still has sooooo far to go before anyone will confuse her with a typical child, but wow, from last June to now she took a huge first leap.
Much of Rory’s receptive speech gains can be attributed to her AAC talker, which has showed us just how Rory knows, but I firmly believe that the stem cells have also helped her blossom with her talker and don’t think she would have taken off with it if not for the stem cells.
She now knows her colors and shapes, is learning her letters and can even SAY some of her letters, and is learning her numbers. She has always been great at identifying animals, objects, etc., but having a way to express herself has down us just how much she understands and how smart she is. She is still delayed receptively, but she’s considerably narrowed that gap. Her ABA therapy has also helped a ton with this, as these are some of the skills they have targeted in their programming.
<Warning: poop talk ahead.> Rory consistently had awful, unformed poop. On our 1-3 scale where 1 is unformed, 2 is partially formed and 3 is formed, she was a 1 forever. We saw slight gains for a few weeks here when we tried Rifaximin as part of the Nemechek Protocol, but they didn’t stick, then more gains with round 1 of SCT for a few weeks, but again they didn’t stick, and a repeat performance after round 2 of SCT. This told us that anti-inflammatory treatments helped but weren’t fixing the underlying cause, which we’ve yet to determine one way or the other. BUT we did talk to our MAPS doctor who recommended trying CBD oil to see if that helps, and sure enough, it did! Since she started CBD on 12/24, she has had two #1 poops, two #2 poops and 17 #3 poops! We hope this can continue and we are planning to continue the CBD through the next round of stem cells (versus stopping it before and after as we have done with anti-inflammatories previously) in hopes that the CBD can handle the gut inflammation while the stem cells focus on her brain inflammation.
Rory also has a ton of food allergies which we are still avoiding from her diet. We are about to repeat the 88-antigen IgE and IgG food allergy bloodwork to see if she has improved the massive list of foods she was reacting too, so I’m curious about that. Ideally I would like to be able to avoid things by choice and not by necessity. Still a ways to go in this department too.
Also on this list, she has finally started gaining weight, which most people wouldn’t be excited about. But after being described as “malnourished” by a GI doctor last year and hovering at 29-30 pounds forever, she was 34 pounds when I weighed her this morning. She looks healthier, I can’t see her ribs as much, she feels more substantial when I pick her up. I have no previous height to compare her to, but I think she is also getting taller. Her hair seems healthier too.
And I almost forgot potty training! She was completely un-trained before stem cells. In July we completed a 3-day intensive potty training with her ABA therapists and got her partially there but still having a lot of accidents. Now 6 months out from starting, she only has a few accidents and is mostly good about telling us when she has to go. If she gets really angry she loses control, so when she starts to melt down, we take her potty first thing! She has only had one (two?) accidents at school since starting in the fall, and a few at therapy, so this opens so many doors that were closed when she was still in diapers.
We saw a lot of sensory and behavior gains with our first stem cell therapy but not as many with our second round. Overall I would say Rory is more compliant, but certainly would never use compliant to describe her! She is easily frustrated, very stubborn, hates to share, and tends to hit or scratch when she doesn’t get her way (especially with Owen)…BUT she also now will play nicely with Owen at least 50% of the time, is playing more appropriately with toys and starting to enjoy dress-up, playing in the toy kitchen, playing ball and is a complete puzzle master. She and Owen have actually started getting in trouble together too, which is just such a normal brother and sister thing…pulling clothes out of their dresser and books off the bookcase, jumping on the bed, etc.
I feel like her huge meltdowns are rare now, and we are better able to calm her down when she is upset and better discern why bad behavior is happening versus it just happening all the time.
Her pain sensitivity has increased, so while before she would fall down and bloody her knees and not even let us know, now she cries when she gets hurt. This is so important to us! Of course we hate to see her cry, but it’s so much more normal to know when pain is happening. She is also less particular about what she wears, which is nice because she was completely fixated on certain items of clothing before, and now our horizons have opened a lot.
Motor-wise she has learned to jump in a stationary position, is riding a tricycle with some assistance, and just learned how to ride a 3-wheeled scooter on her own. Huge!
Is Rory a completely different child after stem cells? That is a resounding NO! In fact most people on the outside may not even notice any differences. We are hopeful that after several more treatments, the changes we have seen and that I detailed above will be even more dramatic and recognizable to everyone. On our wish list are: more patience, less aggression, less touch-sensitivity (especially in regard to brushing teeth, cutting nails and putting anything in her hair!), expanding expressive language to include putting words together, more conversation, better receptive understanding of verbs and prepositions, more curiosity and asking questions, and the ability to function as a household with less stress, namely more independence and less needing my attention 24-7!
While of course I will always want more, I am forever grateful for everything we have gained from stem cells. We are finally getting to KNOW our daughter more versus just spending our lives anticipating her every want and need. We are watching her personality blossom and her intelligence shine. We are hearing words come out of her mouth, which I was beginning to doubt would happen!
We are still standing in front of two roads diverging in a yellow wood, though. We see two very different futures ahead of us: one where she stays much on the same path she is now, in intensive therapy, making slow gains, needing some sort of special education. And one where she is able to make huge gains by the time she starts kindergarten fall 2020 and could even possibly go to the same school with her brothers. (And of course several paths in between those two.) Beyond kindergarten these alternate futures are even more drastically different: living with us forever, versus being independent, finding love, having a family. It makes my brain hurt trying to plan for each of these and hoping with all of my heart that she can find her way onto that second beautiful path.
Until then, I will be here, researching every rabbit hole I come across, conferring with my incredible village, helping each and every fellow parent and their children that I can help, and making it through every day. Bring on round 3!