We received patient feedback from families of children with autism spectrum disorder.
After the transplant, he told us that his tantrums were no longer triggered unless he was very uncomfortable, and he felt more interested in other people and animals.
Disease name: Autism Spectrum Disorder
Transplant period: February 7, 2022 – February 18, 2022
Number of transplants: 3
Transplant provider: Luke’s Ashiya Clinic
Q1. WHAT MADE YOU DECIDE TO UNDERGO INTESTINAL FLORA TRANSPLANTATION AT OUR INSTITUTE?
The content of the international paper and the experiences of parents whose children have had intestinal flora transplants.
Q2. DID YOU RECEIVE SUFFICIENT EXPLANATION AND SUPPORT FROM THE MEDICAL INSTITUTION FROM THE TIME OF YOUR TRANSPLANT APPLICATION UNTIL AFTER THE TRANSPLANT WAS COMPLETED?
The explanation leading up to the transplant was sufficient and I felt comfortable with the transplant. For better or worse, I felt that the selection of the donor and what flora to transplant was completely left up to the doctor.
If possible, I think it would be more satisfactory if you could share the target flora balance with the patient and discuss together what kind of flora to transplant and what kind of flora to incorporate, up to the flora review, so that the patient would feel more satisfied with the results.
(We had satisfactory results this time, but we understand that some patients may not have as good results as expected.)
Q3. HOW HAVE YOUR SYMPTOMS CHANGED AFTER THE TRANSPLANT?
Immediately after the transplant, I felt as if I had more time to relax. The violent tantrums that I used to have when I couldn’t make small changes or accomplish routine tasks disappeared. Although he still throws tantrums when he is under a lot of stress, the frequency of his tantrums has decreased dramatically, and he no longer throws tantrums unless he is really uncomfortable. I also feel that he has become more interested in other people and animals.
Before the transplant, I was the best and showed little interest in other people. After the transplant, he has shown more interest in his parents and friends, often approaching them with a smile. There was also a change in approaching dogs and cats to pet them, which I had no interest in before.
Also, as a result of his interest in other people, he began to imitate his parents’ words and movements. This change is very significant, and he is gradually able to express his feelings by using words such as names of objects, requests (e.g., “please give me,” “it hurts,” etc.), and actions (e.g., “sit,” “sit down,” etc.). Before the transplant, he had feelings he wanted to express but could not use words at all, which led to immediate tantrums.
He is now willing to try something.
For example, he used to have a tantrum whenever he tried to cross a pedestrian bridge, but after the transplant, he tried to cross the bridge by himself while trembling.There were many changes, but when it came down to it, I felt it was a powerful stress reliever. Throwing a tantrum is when you are not feeling well, or when you are under a lot of stress (before an important exam, before a game, etc.), and at those times you don’t want to accept new things.
I felt that when we did the flora transplant, we were able to eliminate those problems and this change came about because we were free from that stress.
Q4. IN ORDER TO MAINTAIN THE INTESTINAL BACTERIA THAT BECAME YOUR FRIENDS THROUGH TRANSPLANTATION, PLEASE TELL US ABOUT ANY LIFESTYLE HABITS OR WAYS OF THINKING THAT YOU ARE TRYING TO MAINTAIN AFTER TRANSPLANTATION.
I have been continuing to take the recommended supplements and have been making a menu with more root vegetables that were recommended as good for intestinal bacteria.
Q5. WHAT WOULD YOU SAY TO THOSE WHO ARE GOING TO HAVE A TRANSPLANT OR ARE UNSURE ABOUT IT?
Dear Parents of Autistic Children.
I made the decision to have an intestinal flora transplant for my autistic son. As a result, his symptoms have improved and his fiery tantrums have decreased dramatically. This has not only improved our son’s life, but also our parents’ lives. He is now able to sleep at regular times, watch TV, and go on little outings.
Above all, our lives have become brighter and we have more hope for the future. I had the transplant for my son, but as a result, my whole family’s life has improved, and I feel that I am very happy that I had the transplant. However, transplants are expensive and the results are not guaranteed. I do not recommend it lightly.
That is why I studied hard, even though I am an amateur, reading foreign papers and specialized books and attending academic presentations of the Intestinal Flora Transplantation Clinical Study Group alone along with other specialized doctors, so that I could be convinced of any results. If you are not sure about transplantation, please do not simply decide to “do” or “do not do,” but rather think it through and consult with your doctor thoroughly.
Q6. PLEASE GIVE A MESSAGE TO THE DONOR WHO PROVIDED THE STOOL FOR THE TRANSPLANT.
Our son’s tantrums decreased dramatically after the transplant and our lives have greatly improved.
Thank you so much.
We were told that only a handful of really healthy, calm emotional people are chosen as donors. The more I research intestinal flora, the more I realize how amazing it is to be able to maintain this flora.
I hope that you will continue to maintain a healthy and prosperous life as you have been doing, and that the number of flora children will continue to increase through transplantation.
Q7. PLEASE LET US KNOW ANY OTHER COMMENTS, OPINIONS, OR REQUESTS YOU MAY HAVE.
I would like you to continue to share the latest information (global technological developments, changes in Japanese laws, etc.). We would also like you to share information that may be useful to patients after transplantation.