Diagnosis: Post-hypoxic encephalopathy with speech disturbances. Autism.
Dates of treatment: April 2-3, 2012; March 23-24, 2015
Almost a year after the stem cell treament of Ch. at our center, his parents wrote us the following letter:
Attached are the ABC and ATEC forms for Ch. The forms may appear to show that Ch. demonstrated little improvement as a result of his stem cell therapy, and while it is true that Ch. was in no way recovered and still remains moderately autistic and severely "nonverbal", the checklists do not capture Ch. core issues of improvement.
Ch. has an extremely extensive vocabularly despite that he is "nonverbal." He can sight read and understand with ~95% accuracy about 1000 grade-appropriate vocabulary words up to 3rd grade equivalency (I tested using Sylvan Learning Center Flashcards from Kindergarten to 3rd grade; 4th grade vocabulary becomes much more difficult due to the significant increase in abstract words; here's a link to the 3rd grade flashcards: http://www.amazon.com/Third-Grade-Vocabulary-Flashcards-Language/dp/0307479404/ref=sr_1_3?s=books&ie=UTF8&qid=1363218412&sr=1-3&keywords=sylvan+flashcards).
Ch. inability to speak is the result of his severe apraxia which occurred after losing his language after his 1st year vaccinations (prior to those vaccinations, he had no apraxia and had babbled all phenomes starting at 6 months until his complete loss of language). What Ch. has most gained as a result of his stem cell treatment is the ability to plan, imitate, and produce oral motor movements which had never improved after the complete loss of his language. Ch. articulation is still slowly improving with work and repetition; in addition, oral motor planning is imprinting with him and becoming habital. For example, to make "v" and "f" sounds, I would push his bottom lip underneath his front teeth to help him make the sound. Now, he states those sounds without any help. In addition, Ch. constantly wants me to say favorite words and phrases and watches me closely in an attempt to imitate me whereas he could not do so at all prior to stem cell treatment.
In terms of Ch. handwriting, he used to hate it so badly that if I placed a crayon or marker in his hand to color or write, he wouldn't even look at the paper and would typically refuse to do anything but scribble and become upset. It was such a terrible ordeal to have him try any writing that I asked his school if we should abandon our efforts to have him write and instead try to teach him to type. Ch. ultimately began to write a little but his fine motor skills and control were extremely poor such that his writing was very large and sloppy and showed little improvement in two years. Yet as the doctors saw in the writing sample I sent in a previous message, his skills have much improved. Ch. neurologist happened to see his handwriting in October was quite surprised that he could write so well given the severity of his autism.
Speaking and writing are probably the two most important areas where I had hoped to see improvement and did, and it is my hope that with another treatment next April, it will build upon what has really been good improvement in these areas for Ch. Dr. Bradstreet and I realize that whatever caused Ch. autism caused severe neurological damage for him, more severe than many children and that improvements for him will not likely be as robust in comparison to other children who weren't as severely affected. Nonetheless, I consider the improvements he has demonstrated to be quite significant given his issues.
In closing, please advise if the doctors should have any questions or require clarification about my comments in this message and the attached forms. Thank you so much and we look forward to returning to Kyiv next year!
Update on April 6, 2015:
I hope this message finds you and the doctors doing well! Ch. and I returned to the US with no problems but I decided to wait to update the doctors until after a full week where Ch. had resumed his usual schedule of therapies, etc.
The doctors were concerned that the new stem cell treatment with the placental cells might cause some adverse behaviors or aggression as others have experienced, but rather, Ch. really feels terrific, probably the best he's felt in a while. He has a very happy and more calm demeanor; as a result, he has been much more receptive of doing a very good job with his school work, which in the past could sometimes upset and frustrate him. His fidgeting has lessened greatly and his need to stim on videos or music has also greatly reduced.
For Ch., adverse behaviors are often a reflection of his health -- if he is in pain or does not feel well, he tends to be more easily agitated and reactive. Similarly, he'll often stim as a means of diverting his attention of any pain/unwellness. In regards to his fidgeting, I feel it is an external indicator of the hyperactivity in his brain.
So, with these improvements, I feel that his health is already much better given his happier, calmer, and more focused behavior. I haven't perceived any changes in the ease of his expressive language thus far, but with the previous stem cell treatment, language changes occurred more slowly and steadily for him.
I also decided that I would discontinue the Diflucan that Ch. had been taking and will monitor his GI status with organic acid tests every couple of months to determine whether he'll still require it. I will likely accomplish a test in early May and will update the doctors with those results.
It was very good to see everyone at EmCell again! Thank you so much for Ch.'s kind and in-depth care while we were there!
Update on June 8, 2015:
I wanted to provide a 2-month update and some video from Ch.'s VBA (Verbal Behavior Analysis) therapy session from May 28th so that the doctors can watch how Ch. interacts with his therapist and her techniques to improve his speech apraxia.
When we return home in mid-August, Ch. will resume his VBA therapy three times a week for two-hour sessions each time. He's made very good progress since starting in May with only one session per week, so I expect really good progress with three weekly sessions. I watch the videos, taken each week, to ensure that I do the same work at home to reinforce what he is learning at therapy.
In regards to other issues,
1) GI: Prior to treatment, Ch. was moderately constipated. While he typically had two bowel movements a day, he had to strain or sit for some time (10 - 15 minutes) to produce his morning bowel movement. Now, he has no constipation and easily goes as a morning routine while I'm preparing breakfast.
2) Motor Skills: I and Ch.'s physical therapist have seen good improvements in his motor skill imitation and planning since treatment. He was also receiving occupational therapy as aquatic therapy, and his swimming also improved much with his better motor skills. When I previously took Ch. swimming recreationally, he often wanted me to throw him, carry him, etc., and rather than swimming in shallower water, he would walk or bounce instead. Now, when we swim recreationally, he primarily wants to swim and doesn't seek to walk or bounce in shallower water. Instead, he likes to swim laps and have me chase him which tends to improve the duration and intensity of his swimming. He has seen very good overall improvement in various motor skills!
3) Behavior: Ch. feels very good and his behavior reflects how much better he feels - EVERYONE has noticed! The happiness and demeanor shown in Ch.'s VBA videos above is typical. When he does become frustrated, he doesn't lash out as he might have previously, and he regulates himself much better. Events in the past that would upset him or overwhelm him - he is handling extremely well. For example, I took him out to lunch for hamburger patties (a favorite) but when I arrived at the restaurant, I realized I left my purse at home (which Ch. had already realized). I immediately returned home to get my purse which would have previously caused much upset and a tantrum despite Ch. logically knowing I need my purse to make payment. Instead, he was unaffected and was perfectly fine. Similarly, Ch. has his physical therapy sessions in a gymnastics center which he usually has to himself since we go during school hours. But last week, summer camps began and there were 30 young screaming girls running around. I thought he would become overwhelmed (I did!) and upset, but instead, he did great and was actually interested in watching the girls and what they were doing.
When we go out, Ch. will still bring his iPad but no longer has interest in stimming on favorite apps as he did previously. Instead, he likes to listen to music, primarily popular songs that he has come to like on the radio station that I listen to in my car. Ch. had an appointment with Dr. Bradstreet last week, and he marveled that Ch.'s calm behavior was the best he's ever seen. While Dr. Bradstreet and I talked, Ch. quietly played with a couple of puzzles that were in his office and when Dr. Bradstreet asked Ch. a question, he quickly responded "yes" (appropriate answer) in his comprehension.
In general, Ch. seems more interested in other people. Given his lack of language, he doesn't initiate interaction, but he is looking at people more in the stores and smiling at them, which he didn't do at all previously.
4) Speech: Already, Ch.'s speech is much improving. All of his therapists (VBA, music, art, etc.) have seen improvements with his speech each week. His apraxia is still extreme, and correctly speaking remains very difficult for him and can frustrate him. Nonetheless, he has made noticeable good improvements, and his current VBA therapist (the best he's ever had) truly feels that Ch. can eventually speak with enough work, etc. I feel Ch. will make very good advances in the upcoming year!!
This stem cell treatment has produced very good results, and I'm so happy that Ch. is feeling and doing so much better!
Update on December 30, 2015:
Happy New Year to you and the Emcell staff as well! Christmas is Ch.'s favorite time of the year because he loves the bright lights and decorations of our Christmas tree which I buy fresh each year and he helps me to decorate. He also loves Christmas music, so story time at bedtime in December is often my singing Christmas songs while he reads the lyrics. He also has Christmas toys such as a singing snowman, jingle bell dog, musical snow globes, etc., which are favorites for him because of the music. This year, we attended Christmas music concert, orchestra, ballet, and symphony performances which included Handel's Messiah, the Nutcracker Ballet, and holiday pops. Ch. did very well with the performances which were about 2 hours long each, enjoying all of them, particularly the lively music of the Nutcracker.
Ch. continues to do very, very well -- feeling so good and very happy every day with great behavior. He is also doing well and improving in all his various therapies -- physical therapy in a gymnastics center, art therapy (where he does paintings including the Santa Claus I used on the Christmas card you received), music therapy (where he is making good progress learning to play the piano with both hands - chords via some Christmas music this month), occupational therapy (doing art-related projects to work on fine motor skills), and Verbal Behavioral Analysis where he works extensively on expressive speech.
I've recently located an audiologist who specializes in auditory processing/integration disorders who will soon evaluate Ch.'s receptive language issues to determine how we can improve that area of his speech issues. I believe Ch.'s receptive language is similarly impaired to his expressive language, and as such, I feel that there are some therapeutic activities that can be accomplished to help improve Ch.'s auditory language processing deficits.
I will continue to keep the doctors informed of Ch.'s progress, but at the latest, I expect for us to return to Emcell for another treatment in March 2017.
Tomorrow is New Year's Eve here, so I'll be doing another favorite activity for Ch. Every year, I buy a fairly big package of small fireworks and firecrackers which are safe to light up in our driveway. Ch. really enjoys watching them with all the pretty colors. And thus ends our year!
Again, our best wishes to everyone for a terrific start to 2016 and a wonderful year!