Rory had her first stem cell therapy on June 15, 2018, so as we crossed over the 10 month mark and just did her fourth stem cell treatment on April 29, 2019, 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 click on the Stem Cells category in the menu or…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, read <another super long and detailed> daily journal of the three-ish months following her second stem cells here, read her 7 month update here, read <another super long and detailed> daily journal of the 2.5 months following her third stem cells here, and see a cool video comparison of before and after stem cells here.
I also wanted to point out again 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. 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 made so much progress with her speech that I have actually questioned whether she actually HAS apraxia or whether it’s more of a phonological disorder. Apraxia is characterized by inconsistent speech errors and now that Rory is actually TALKING more we can see that her errors are actually more consistent. Like pink is mink, cat is tac, green is neen, Collin is Nollin, and Carter is Dabo???? (OK, that one is weird.) I have discussed this with her SLP and she still sees some apraxia traits in there for sure so we are still keeping that as her main diagnosis, but it has led me and several of my biomed friends to question whether our kiddos ever had apraxia or whether it was actually something else altogether which is a whole ‘nother rabbit hole. Another friend’s son is very similar to Rory and he is also having similar speech gains after SCT, so there is SOMETHING helping these kids who very obviously struggled motor planning their speech to make progress.
Rory’s speech gains started at the 4 month mark after her 1cc Invitrx (1st SCT), when she was getting about one new word a week, then took off after her 1cc Predictive (2nd SCT), going up to one or a few new words almost every day. She was at about 20 words/approximations prior to stem cells and at my last update was around 170 words, and had started putting two words together on her own (e.g. hi Santa), and would repeat multiple word phrases (e.g. I love Mommy) one word at a time after me. NOW she has more words than I can count, which is AMAZING! She will attempt to say most things now and is often successful. She often puts two words together (Owie nightnight, eat chips) but still prefers using one word at a time because it’s easier. She occasionally uses three words together too, but that’s rare. As for repeating, she will repeat full sentences after me one word at a time (help me do pink mermaid puzzle please mommy) which I see as helping her “program” that into her brain so I work on that with her often when she just uses one word at a time. The most notable speech gain from this round was that everyone finally got NAMES! Whereas before she had Mommy and Daddy and Bubba (and Nonner for her boyfriend Connor), now all of her friends and family have names, even hard names like our friend Whitney at baseball, and one of the hardest names ever…RORY! Yes, she can now tell you her name if you ask (and that she’s “four” when you ask how old she is, usually followed by “nine” with a grin). Articulation is still pretty rough, so if you don’t know what she’s trying to say it can be hard to understand, but she is getting there. She can also repeat all of the letters of the alphabet (and is doing really well identifying letters and letter sounds in ABA) and can repeat all of her numbers (but when I ask her to say seven, she says eight, which is actually even better because it means she’s not just being a parrot, she actually gets the concept of counting). We can read a book together (SHE LOVES TO READ BOOKS NOW!!!!) and she can fill in words for me (…and a picture of the cow jumping over the _____.) and can answer questions like what’s the little girl’s name (Trixie). We can have pretty solid dialogue about things now, so when we go on a walk I can ask her what colors things are or what animals she sees…certainly not conversation yet (oh, how I would love for her to tell me what she did at school, who she played with, etc.!!) though but I feel like we are getting closer.
I mentioned earlier that Rory is now doing great with letters and learning her numbers. They are also working on calendar parts (days of the week, etc.) in ABA and body parts (she has all of the big ones but they are getting her to identify on herself things like elbows and fingers). She really needs that one-on-one attention and plenty of distraction time to learn something, so I am still trying to figure out how she will function in a traditional classroom. She will start VPK in the fall and we are currently planning to put her at our local Montessori school where they have less structure and more ability to move around and explore versus sitting at desks.
<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 consistently had solid (#3) poops EXCEPT when she is exposed to gluten, dairy or soy, AKA the enemies. We continued the CBD through the third round of stem cells (versus stopping it before and after as we have done with anti-inflammatories previously) and that seems to have been a good decision. We are still continuing it.
Rory also has a ton of food allergies which we are still avoiding from her diet. We have yet to find a good time to repeat the 88-antigen IgE and IgG food allergy bloodwork (which has been sitting on our shelf since December…it’s either been too soon after stem cells, too close to next round of stem cells, or super busy schedule) to see if she has improved the massive list of foods she was reacting too, so I’m STILL 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.
We have also been working on removing excess free glutamate from her diet (REID), most notably getting rid of Chick Fil A which was a diet staple as we traveled from school to therapy or therapy to more therapy. She is actually becoming a self-imposed vegetarian, and refuses to eat any of the chicken or turkey I formerly tried and finally gave up trying to put in her lunches. She’s eating a ton of fruit and a few veggies (a usual lunch has all the colors of the rainbow…tomatoes and apples, cantaloupe, pineapple, cucumbers, grapes and blackberries) and will occasionally humor me by eating some chicken at home and will ALWAYS eat her chicken and rice from “Pokay” or Chipotle, which she asks for every. Single. Day.
As for 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. At this point she only has accidents if there is some outside force (like evil food intolerances) because as soon as her poop goes from #3 to #1 it’s like she can’t sense it properly. Here’s a gain that may not SOUND like a gain but actually is: when she has gotten a diarrhea bug or eaten something she shouldn’t have, I can put her in a Pull-up now and she doesn’t regress back to square one like she used to. She still tells us when she has to go potty and doesn’t lose that ability, whereas before if she wore Pull-ups it invalidated everything we’d worked on. She still requires someone to TAKE her potty (which is pretty annoying, especially when she tells me she has to go fifty times in a row when she doesn’t actually have to go) and while she is learning how to wipe, flush and wash her hands in OT, she still needs someone to do those things for her at this point. Hoping we can get her more independent with potty by the time school starts in August, fingers crossed!
We saw a lot of sensory and behavior gains with our first stem cell therapy but not as many with our second or third rounds. Rory is a difficult kid when she is asked to do things that are hard for her (which let’s be honest, is a reeeeeeally long list), but if SHE is in charge, she is generally pretty delightful, and I often hear from people who don’t work with her on a regular basis how sweet she is, lol.
She and Owen are getting along way better than they used to, but there is still a lot of room for growth. She has been less aggressive with him (though still has her moments) but cannot share to save her life. If she is in a mood and he has something, she is compelled to take it from him, even if she doesn’t want it and just throws it on the ground. Which of course makes poor Owen MAD. When they hit their oil and water phases, I have learned that separating them is crucial. Carter and Collin are often on Owen duty in another room while I get Rory settled down.
Rory has had some BIG feelings lately and some really intense meltdowns that last way longer than they used to. I suspect it’s greater understanding that is fueling them??
Rory is also learning emotions. Sad and happy are regular words in her vocabulary and if someone is crying she always says “sad!” She is also feeling more emotions herself. When she wasn’t feeling well this morning, she actually was pouting and had some tears, which was so typical!
She is also more affectionate. She loves sitting on laps and snuggling with her therapists, our friends at baseball, and her family. Her relationship with her grandmother, CeeCee, has flourished these past few months which is so sweet to see.
Motor-wise she has kind of stalled out a bit. She has gotten really good at throwing a ball with accuracy but is having trouble focusing enough to catch it. She can jump, but not jump forward. She still refuses to try most things in her ballet class because they are hard. I would love to see some more progress in this domain.
One more…tooth brushing!! We found an awesome new tool to help with this a few weeks ago. The AutoBrush kids is such a cool invention that brushes all of her teeth with vibration at one time and it only takes 30 seconds and looks like a freaking monkey, one of Rory’s favorite things ever. She says “monkey teeth” and asks for it instead of me having to pin her down to brush teeth (she clamps down so hard it’s almost impossible to brush her teeth). It’s expensive but they regularly have sales and it has been worth every penny for our hugely sensory-averse-mouth girl! I don’t think stem cells have anything to do with this one, but I am so grateful for this new tool that I wanted to include it in case it could help anyone else with similar issues!
Rory is still not a drastically different child, and let’s be honest, life with her is still HARD! I am exhausted at the end of every day from our crazy schedule and the constant attention she absolutely demands from me whenever she is with me. But overall she is TALKING, and while it’s nowhere near a typical child her age yet (2.5 year old Owen is far more advanced), she has so many words now and we can actually communicate with her. This in and of itself is a miracle, as we really didn’t know if she would ever be able to talk to us before stem cells. Progress is still very slow, but there is PROGRESS. She PARTICIPATES in her therapy, which before was nearly impossible. I remind myself of all of these positives every time I start to get disheartened about how hard everything is for her and how very, very far she still has to go to catch up with her typical peers. Stem cells are not a magical cure-all that restored all typical child function to our child, but they are very much so a MIRACLE, plain and simple, and they are slowly but surely giving her the best chance at a normal life.
It is still a constant struggle to decide how to plan for the future since it is still SO uncertain. We have been talking a LOT about school and where she will be in the fall when she starts VPK. It’s hard to predict what this fourth round of cells will bring (we had them on Monday, 4/29/19 and she is already having some cool gains, which I did not include in this update but will continue to document in her round 4 journal) and what the next planned round in August will add, but we have to believe that she will continue on this upward trajectory and be more functional in the Montessori classroom we are leaning toward. And kindergarten, sheesh! In another year and a few months where will she be? Could we even dream that she might be able to attend the boys’ school in a typical classroom by that point?! Part of me believes in that possibility while part of me thinks it’s completely irrational to even let ourselves consider it. Glenn and I have had many, many late-night discussions about our little mystery and all of the terribly complex and confusing pieces of her puzzle.
Stem cells are quite possibly the most fascinating thing I have ever had the opportunity to learn about. They have SO MUCH possibility for so many different conditions and literally have the potential to change lives. They have given so much to our family already, and as I continue to learn more from other parents I continue to be more and more amazed at what they can accomplish. I will continue to document our journey here and hope that it is helpful for you if you are reading this. Which side note, I have had several people reach out to me after reading my blog and I LOVE to hear from new friends on similar journeys. Please never hesitate to comment here, ask questions, or send me a message on FB (my profile is linked in the menu above). While my primary purpose for keeping this blog is to have a record for myself, I also love being the resource for other people that I desperately wanted when we were starting this journey. So don’t be strangers, ok?