Mild Trigonocephaly - Autism - Ken

I have drawn information from the following:

• Messages from m_triangle an Japanese internet discussion group on mild trigonocephaly established in June 2004. There is also an equivalent group in English. Click here to go to the group site

Messages from m_triangle

One year has passed after operation. For those mothers whose son is going to have the operation, I would like to share with you my son's progress in the last year.

(Before Operation)
Can speak single words but cannot make a sentence to conduct simple conversation. I showed him picture cards but he did not seem to understand at all and did not answer back. He held a pencil and tried to draw a circle but end in a mess. When we went shopping, he will just ran away. When he wants something, he will not speak, he just pull my hand. If his request is not make fully, he will panic and cried for 30, 40 minutes. He will watch me doing puzzle from the side but showed no interest in doing it himself. He cannot use his finger to button his pajamas. And when I think of it now, I also think he cannot clearly distinguish his brother and sister names.

(After Operation)
Before operation the best he can do is to speak a two-words phrase like a beautiful flower. Now he can do 3 words sentences, sometimes also 4 words sentence which surprise me. After one moth, he will answer if I show him picture cards. At classroom, he can draw a circle with no problem and will enter the classroom by himself without me accompanying him.

Now when he wants something, he will say it like please give me milk or give me some bread.

He can go to toilet by himself.

8 days after operation he can complete a 20 piece puzzle by himself and 46 pieces one month after operation. And he can button and also unbutton pajamas by himself.

When compare my son with children at similar age, he is still a lot behind. But he has been making a lot of progress. I can really feel that the progress he made is due to the operation. I am very glad to see my son improving day by day.

It is about one month after surgical operation. The biggest change I have seen in my son is his emotional part. He is in good mood throughout the day; his will or desire to do something has increased; he is displaying more facial emotions, and he is now able to control his emotion a lot better.

Before operation, he gets up in really bad mood. I thought he may have a problem of low blood sugar level problem. So I try to feed him after waking up but he can still stay in bad mood.

Intracranial pressure is worst (highest) in the morning. Although I cannot definitely say that is the cause of his bad mood, but I believe that is the cause. (Abnormally high intracranial pressure is found during operation).

The other thing I notice is that before operation he will use his fingers on his left hand only and he used his left hand only when he needs the power. He now uses his right hand instead. Originally he is right handed.

Before operation, he did not showed any interest in music and television. Now he enjoys watching TV and listening to music. His favorite is Mozart music video. Totally absorbed in the beautiful music and images.

He is also showing interest in building blocks. I am seeing him in selecting and building blocks more often than before.

There is no change in his language side but he is clearly making more sounds than before. Before operation, I think his ability in making sounds is suppressed. I am very happy to see the improvement.

In discussing the above changes with Dr Shimoji, he commented that the all of the above changes is due to the increased activity of the frontal lobe of the brain.

It is nearly 2 months after operation. We recently met the teacher who is in charge of my son's behavior training before operation. Teacher knows about my son's panic. The therapy started and my son did not panic at all. I was with him for the first 10 minutes only but he is already familiar with the environment and started to play by himself. Teacher pointed out a number of times that my son's leg and body strength has improved a great deal. Before operation, my son cannot walk without me holding his arm to support him.

Teacher is surprised in the big improvement in my son's visual ability. My son is able look at many different things and be able to sort them. Teacher also noticed that my son's squint before operation has completely gone.

As I am with my son everyday I can feel the progress noticed by my son's teacher. But actually hearing it from the teacher, you cannot doubt that the improvement comes from the operation.

It is now summer vacation time. It is great to see my son to play with my son's elder brother and sister at home.

My son Ryu is now six and attending kindergarten. At the age two and a half he had the surgery for his mild trigonocephaly.

Before operation he often yelled and keep running in circle. He will run away to somewhere. When people talked to him, he has no understanding what the person is saying. No response when his name is called. When he was a baby, when I hold him up he will bend back. I do not know why, but "Banana" is the only word he can speak. But whether he understand what it means I do not know.

After operation the first improvement I noticed during the hospital stay was that he showed interest in children's TV program. Before operation, he was only interested in commercials where there are interesting phrases with impact.

The other thing I noticed is that he has calmed down a lot. Before operation, if I do not grab him tight, he will just run away. I have to chase him down, hold him up and move him or I have to use a lot power to pull him. During hospital stay, when we went to toilet, he was calm, holding my hand and walked down the corridor together. I felt really happy about that.

Also during the stay in hospital, there is this "Let's run" children book on the bookshelf. Ryu liked this book a lot and asked me to read it to him many many times. This is the first time I seen Ryu enjoyed in something. Before operation, Ryu did not seem to need my presence at all, now I feel he wants my presence and I feel the bond between myself and my son is deepening. I am really delighted about that.

Hello everyone. My son had the operation near his 6 year old birthday. He was first diagnosed to have mild trigonocephaly at the age of three. I have been thinking and agonizing to have the operation or not for the last three years.

Why it has taken me so long to decide? The reason is that my son did not have any of these symptoms - hyperactivity, panic, irritability, vomiting, self-injury behavior. Children who display these symptoms and have the operation improves. I have consulted with numerous doctors and child developmental specialist. And all of them said my son will not change or benefit from having the operation. Also doctor Shimoji cannot comment whether my son will improve on his language side (he cannot speak a single word). Because of these reasons, there is no big motivation to have the operation.

But last year I noticed my son's visual power was weakening. It seems it is really hard work for son to look at something. He will take an instant at the puzzle, then he will not look at the puzzle, he will look away, and just use his hand to feel the puzzle pieces and put the pieces together. And he will get confused in playing matching card.

It is often said that autism has superior visual power. He is already not verbal, if his visual ability is weakening, what else is left for him to rely on? This really worried me. I suspected that the high intracranial pressure is the cause to his decrease in visual ability. So last year I decided to go ahead with the operation.

As expected, after operation my son's visual ability has improved a great deal. Up till now, he cannot do the puzzles and matching cards, after operation he really looked at the puzzles pieces and matching cards and make the right decision. However, his autistic behavior like his irregular eye movement and rolling things to seek visual simulation remains.

But still it is great to see my son to escape from his "unclear non-focus" world. It is a lot more enjoyable than before.

Hello everyone. This is Raki's mother and I lived in Okinawa with my two sons: Raki 4 years and 2 months and the other son 2 years old. Raki was diagnosed to have mild trigonocephaly about 1 year ago when he was about 2 years and 8 months. But the operation was carried out 3 months ago. Like everyone, it was very agonizing before deciding to have the operation. And when I look at the peaceful face of Raki when he was asleep, tears came out of my eyes on many occasions.

Before operation, Raki can speak only few words. After operation he is speaking a lot more and he will say "what happen? Why?" I feel he became more interested in different things. Raki can understand his own feeling. Great ! I am very lucky to know Doctor Shimoji.

Hello this is Raki's mother. Raki had the operation 4 month ago. The most worrying aspect was his language side. I watch the video taken at the park exactly 1 year ago (Raki was 3 years and one month old at that time). Raki was away from me and from the playing area he called "ma ma" and in loud voice said "Ah", clapping his hands in an angry gesture. In Raki's mind it mean ma ma come over here quick ! "ma ma" "shea-shea (teacher)" "nyu-nyu (milk)" are the infant language he knew. When asked "What did you play at school today?" he will always answer "eisai (drum)".

Before operation, he started speaking two word phrase, but very few and progress very slow.

After operation during hospital stay, the pronunciation became clearer and easier to understand. Also he spoke words that I have never heard before. Two months after operation, he returned to the kindergarten, the teachers there were surprised and commented "Raki became talkative". Now he can say, "Ma ma, English teacher Teresa came to our school, you undertand ABCD right?", "Ma ma, give me cold water", "Tomorrow is sports day at school". Big improvements are seen in his language side. Development checks of 4 years 2 months old Raki still rated Raki to be around 2 months and 7 months. But there is no rush, I just let Raki to grow and improve in his own pace.

On communication with friends, it is no longer just one way, it is now two way communication. And Raki is trying hard and taking initiative to communicate. But there are still problems in his use of fingers and he sometimes lose balance and fall on normal flat ground.

Before operation, I have talked to my husband and relatives. I said we should go ahead with the operation even just to relieve the pressure in his head. I further said do not expect too much and do not critise anyone even if there are no changes in his language or other aspects. I love my son who means so much to me so I firmly believe Raki will also understand my decision. The result of the surgery is that we are seeing big immediate improvement.

A few days ago, we went to the language therapy school. It is now 5 months after operation. The teachers are amazed by Raki's progress. Raki can now express himself and can conduct conversation, before operation he cannot. There is no interest in puzzle and no concentration before operation, now with teacher's help, he can complete the puzzle. Before operation, when he listened to songs, he can only repeat the last word. Now he can sing out the complete song. It is really great ! Thank you very much, Dr Shimoji.

Yesterday we went to Okinawaw Naha hospital to do the 6 months post operation 3DCT. This is the first 3DCT after operation. When compare with the pre operation 3DCT taken 6 months ago, we can clearly seen the brain has grown a lot ! I am very happy ! Dr Shimoji looked very satifised and said: I want to show this brain growth (to others). We also brought the development check result conducted a few days ago. The pass mark of motor ability, congnition and language is 70. Raki attained the 70 mark in exercise and language department for the first time, and scored 66 for congnition. Although congnition falls below the pass mark, this is still a lot of improvement in a short time. At hospital while waiting to see Dr Shimoji, Raki kept talking to me. The reception nurse commented "very good talker". Before operation, i will not even dream of someone making such comment. Raki is not autistic (please do not misunderstand me, I do not mean to discriminate anyone who is autistic) but he has problems in motor function, language and congnition. He had high intracranial pressure. I believe the operation has created an "good learning environment" in his brain by widening his skull for his brain to grow.

I thought this might be useful information. In the group of children who have received operation, there is one child who did not has his DQ (development quotient) measured before operation. The DQ of this child has jumped to the level of DQ80 in two and a half years. There is another child. His DQ is at 60, he can only speak single words and he was very hyperactive. After operation, he can write and he developed interested in numbers. His parents asked themselves "Is my child really autistic?".

I asked the parents did your son progress within 1 year after operation? They are not sure but they said big progress are seen one year after operation. They must have work hard on his son's education.

It is 1 year and 1 month after operation for my son. Somehow I feel encourage when I talked with the above parents whose sons received operation at about 3 and half years old.

Ah! There is one more child. He had when he was 6 years old. Before operation because he is non-verbal, he cannot communicate so he will often panic. Now he attends a special school where he is learning to write.

I would like to write down how I live with my son's problem or illness. It was 7 years ago. I hope my memory recall is correct, although I do not have a lot of confidence....

Before one year old, he can do nothing (his motor abilities). Cannot stand by himself, cannot crawl, cannot turn his body during sleep. If I help him, he can sit but he cannot get up from a sitting position by himself.

Comment from his child development check is that individual (motor) ability varies from individual to individual, let�fs wait and see. So I did not really feel there is any need for any medical test. By chance, during my son�fs 10 months development check, the doctor referred me to Dr Shimoji. Dr Shimoji said in future your son may be disabled. Just over one year old, it was recommended to have the operation.

After operation, we are slowly seeing improvement. 1 month after operation, he started crawling. And at age two he started to walk but still do not have good balance. Movement which requires good balance like climbing up and down stairs is still not easy. But overall he is progressing in the right direction.

Hello everyone ! My son had the operation on this year Janurary. At that time my son is 3 years and 6 months and now he is 4 years old.

I do not see any dramatic improvement after operation. But he listens and obeys my word more, speaking more, and is smiling more.

Simon had the operation 3 months ago. Before operation, Simon can only speak single word most of the time. As predicted by Dr Shimoji, Simon is now able to speak 2 words and 3 words phrase. His language side has improved.

My son had operation on 20th of August at the age of 7 years and 10 months. At 3 years old he was diagnosed with PDD. Since then we did some training on him and just before entering school his IQ was close to normal level. His memory and language was lacking. Now he is attending a special class at school.

One month after operation, I would like to report on my son's progress. Firstly I noticed that he is now able to answer correctly language-math questions which he was not able before operation. There are less mistakes in calculation. Even there are mistakes, he will understand what has gone wrong.

At home I asked him to read me an article he learned at school about 3 times. Then I ask him to answer the questions related to the article (reading comprehension) and he came up with the right answers ! This really really surprised me.

I also noticed some changes outside school. My son will pick up the phone if someone ring home. When I came back from home, before operation he will just say someone has called. But a few days ago, he said to me "mum, telephone rang, and Mr. Smith called and he is a man." I am really surprised to hear such detail.

Before he will only remember the names of people who is close to him. But he now said to me "Grandmother of Ricky just came" or something similar.

I said to my husband that I am glad that our son had the operation. Thank you very much, Dr Shimoji.

Our daughter Reina had operation on 27th of September. It is now 11 days after operation and we are ready to discharge from hospital.

Regarding the changes after operation, I will write again when we get back to the normal life at our home. But at this moment, we can clearly feel these changes - her hyperactivity has not just reduced but completely disappeared, her eyes will follow objects and people, more finger pointing, making more noises as if she wants to talk. The other thing is that she becomes more attached to her mum.

Before operation, Reina was very hyperactive and cannot speak a single meanginful word. Diagnosed with severe autism. She is now 3 years and 4 months. Before operation her DQ (development quotient) is 46. And the intracranial pressure measured during operation was 27mmHg.

Tonight we took our daughter Reina to see a parade near the hospital.

Although it was quite noisy and there were lots of people around, she remained calm and sat in the babycar quietly, watching the dance performed with smile on her face.

After that, we went to the International Street where there are many shops lining up along the street. Again she was calm and quiet with no problem at all. But comparing with pre-operation, we noticed that she often check the presence of myself and mother. She will stick her face out from babycar and look if parents are here or not. When one of us went to toilet, she will notice one of us is not there and started crying. When return from toilet, she wants to hold and grab our hand and will not let go.

We feel Reina is more attached to us. We do not know if that means her cognitive level has raised. But we were glad to see such changes anyway. After the parade, we had dinner at a busy restaurant with not much problem.

Thank you for all the supporting messages. I will write again if I noticed anything interesting.