Mild Trigonocephaly - Autism - Ken

On 8th of Novemenber other treatment has started. To show the changes as a result of the operation as much as possible, I have stopped updating this page from this date. No treatments were introduced in the 4 months post operation period - from 5th of July to 8th of November, 2004.

Progess after Operation - Summary Table

Ken displayed all the symptoms mentioned in Dr Shimoji's 2002 medical paper.

For details, click the link in the table below or scroll down the page.

Symptoms Before Operation
(5th July 2004)		 3 weeks after Operation
(26th July 2004)		 9 weeks after Operation
(6th September 2004)		 18 weeks after Operation
(8th November 2004)
Language Delay Complete nonverbal, just variable sounds in some days. Understand less than 5 words Making more and consistent noises everyday No significant change; making noises everyday Very simple language understanding
Hyperactivity Very high level and difficult to control Calm down significantly, controllable More holding hands and walk toegther, sit down during meal times No siginificant change
Impaired social interactions Always play by himself, little eye contact Eye contact improves markedly during play and communication No siginificant change Very good eye contact and make prolonged eye contact with strangers
Motor Dysfunction Cannot jump, no finger pointing, cannot use a spoon or fork Finger pointing and can use a spoon to drink soup by himself Can use spoon to scoop rice and soup Can blow a whistle
Self-Mutilation Banging his forehead hard and scratching his face when angry Head Banging (forehead) stopped Face scratching almost stop, but knock side of the head to wall No siginificant change.
Panic and Irritability Panic few times a day Overall panic frequency moderately reduced More patience. Sudden panic almost stopped but some irritability remains No siginificant change.


Other changes seen are:

Better observation/awareness/understanding/cognition:

  • when Ken sees mum get change, he will know it is time to go out and walk towards the entrance door. (9 weeks)
  • will watch moving objects, e.g mum put rice cracker back into drawer, he will look at the rice cracker.(9 weeks)
  • when mum put the shoes out, he will try to put his feet into the shoes. (9 weeks)
  • at the end of escalator, he will stick his feet out and step on the ground. (11 weeks)
  • during getting change, he will slip his hands and arms into sleevs. (12 weeks)
  • when he wants to go out, he will bring our shoes to me or his mum indicating that he wants to go out. (12 weeks)
  • will pad our shoulder and point to what he wants. e.g. if he wants mum to get into the bath with him, he will pad mum's shoulder and point and touch the bath. He will pad not just mum's shoulder but also mine, his sister and his teacher at school. (17 weeks)
  • Watch his mum eats intently. Pick up the same food with his hand and puts it to mum's mouth. (17 weeks)
  • When sitting by the sink and playing with water. He knows how to get cold water out by moving the lever. Also he can notice when I release water from the sink to stop it from overflowing. He will use his hand or step on the plate to stop the water flowing out. (16 weeks)

Ken also displayed two main symptoms - sensory integration dysfunction, obsessive behaviour and others


Progess after Operation (5th July 2004) - Details

Language Delay
(Final assessment - 18 weeks post-op in green text)

Before Operation
  • Cannot speak a single meaningful word. NO CHANGE
  • Can only make sounds (but not consistent) when talking to himself or when requesting something. NO CHANGE
  • Some day he make a lot of sounds but most day he does not make a single sound, i.e complete silence. IMPROVED
  • Can only understand less than 5 words (e.g. when we say jabu-jabu, he will understand it is bath time) SLIGHTLY IMPROVED
  • Will not respond when his name is called. SLIGHTLY IMPROVED
After Operation
Lying on hospital bed, he said "da-di" in a high and also a low tone intermittenly within a 3 mintues period 7 days
Making a lot of sounds than before operation7 days
Making the sound "i" which were not heard beforeaiueo sound7 days
Making noise for last 3 consecutive days, I have no memory that he make noise for 3 consecutive days before operation10 days
I noticed pattern in his speech. When request something, Ken will keep saying "ai...gyaku...ai... gyaku" and when he is in good mood he will say "da-di...da-di". Before operation there is no such consistency. ai-gyaku sound 12 days
Making noise everyday since operation. 21 days
When his name is called, showing more reponse by turning his face towards me. 17 weeks
When he wants something, he will pull his mum's hand. When I said "ma ma". He will let go of mum's hand and pad mum's shoulder. 17 weeks

Hyperactivity
(Final assessment - 18 weeks post-op in green text)

Before Operation
  • Very hyperactive. At home, never sit still always in the move. At hospital too. Hospital before operation 2004-7-3 IMPROVED
  • Cannot concentrate on one thing (books, toys, etc) for more than 10 seconds (excpet for his obsessive items). Inattention before operation 2004-6-30 SLIGHTLY IMPROVED
  • At the special school Ken is attending, every kid can sit still during mealtime but ken cannot sit still. IMPROVED
  • At supermarket or department store, he will run aimlessly around and not worrying getting lost or cannot find mum or dad. IMPROVED
  • Half a year ago before we banned TV watching, he will run back and forth while watching TV, got excited and flapping his hand. IMPROVED
After Operation
At library near hosiptal, Ken's hyperactivity did not go down, running around and climbing up tables. Did not notice any change. 8 days
We went to library again and Ken was very hyperactive like before10 days
At home center (DIY center), surprisingly Ken did not run away much, he was quite happy holding my hand and walking with me to where I want to go.13 days
First time to eat together with Ken at a restaurant! There are some movement but overall Ken was pretty calm throughout.14 days
Druing meal time, still climbing table but 80% of the time he will sit still.9 weeks
Eat out together with family a few more times. Sit still at school to eat his lunch.18 weeks

Impaired Social Interactions
(Final assessment - 18 weeks post-op in green text)

Before Operation
  • Play by himself, virtually no interaction with his 4 year old sister. NO CHANGE
  • Very little eye contact. Some eye contact when he wants something from you. SIGNIFICANTLY IMPROVED
  • No response when his name is called. SLIGHTLY IMPROVED
  • At night, some skinship play with mostly mother and sometimes with father. IMPROVED
  • Crying, smiling and laughing are the only facial emotion. NO CHANGE
After Operation
Dr Shimoji had eye contact with Ken for more than 10 seconds, Dr Shimoji commented that eye contact has improved, and I agree with him. 9 days
Want to hold mother's hand when Ken was sitting in the pushchair.9 days
I bought Ken a xylophone he likes. He picked up the stick and played a bit, I said clapped my hands and said "well done, Ken." Ken look into my eyes15 days
Some response in calling his name (sucess rate: may be 1 in 20).16 days
Smile when a ball is rolled towards him17 days
Enjoy exercise play with father (like climbing my back) and good eye contact during play18 days
No significant change, still only play by himself, very littly interaction with his sister.9 weeks
Want mother's company a lot more than before. For example, during milk time before sleep and when feeling sleepy always wants mum (or sometimes dad) next to him.9 weeks
Very good eye contact. Will make prolonged eye contact with people he does not know well.13 weeks

Motor Dysnfunction
(Final assessment - 18 weeks post-op in green text)

Before Operation
  • Cannot jump or ride a tricycle. NO CHANGE
  • No finger pointing (less than 5 times since birth). SIGNIFICANTLY IMPROVED
  • Cannot push elevator button. NO PROBLEM NOW
  • Cannot do swing by himself. SLIGHTLY IMPROVED
  • Can run or climb stairs by himself but lacking a bit on balance. SLIGHTLY IMPROVED
  • During walking or running, sometimes lean his head towards right shoulder. SLIGHTLY IMPROVED
  • Not using the arms much during running. The arms are very much straight and loose, rather than the natural swinging action seen during running. SLIGHTLY IMPROVED
  • Cannot Blow. IMPROVED
After Operation
Open and close repeatedly his right hand's fingers (except the thumbs) to signal something towards his mother 9 days
Finger pointing for the third time after operation10 days
Use thumb and index finger to push button of vending machines at hospital by himself12 days
Finger pointing 6 times since operation13 days
Push elevetor buttons by himself15 days
Push paino buttons using both fingers from both hands at the same time16 days
Swinging both arms front and back at standing position16 days
Fingering pointing around 20 times in the last 7 days21 days
Finger point to where he wants to go. But do not point to things he want9 weeks
Able to use spoon to scoop rice or soup, hold it and put it in the mouth9 weeks
Point to rice cracker to ask you open the package. Point to refrigerator to ask you open it. Point to baby car seat belt to ask you fasten it. And point to bath to ask you to go into the bath with him. 17 weeks
Blow to his hands and can blow a whistle.14 weeks


Self-Mutilation
(Final assessment - 18 weeks post-op in green text)

Before Operation
  • At least once a day (more if we do not stop him), Ken will cry, run and bang his forehead hard against wall, floor, TV screen and glass windows. This happen most often in the morning shortly after waking up. STOPPED
  • Run and throw his body to the ground with the back of his head landing hard on the floor. Then he may get up and repeat the action or he may scratch his face and lips with both hands very hard and press the top of the bottom front teeth hard with his fingers. This happen 5 to 10 times a day on average. SIGINIFICANTLY IMPROVED
After Operation
Tilting his forehead towards the TV screen and softly knocking the screen twice 10 days
Knocking his forehead twice not as hard as before against the wall (not crying, in a calm state)11 days
Softly knock his head to the TV screen once (not crying, in a calm state). For the past 10 days, we have not seen him banging his forehead hard21 days
Frequency of scratching his face and throwing his body to the ground has also reduced to about 3 to 5 times a day on average21 days
Face scratching and body throwing has almost stopped. But when panic or irritated, he will knock the side of his head to wall.9 weeks
No forehead banaging recently. 9 weeks
Further decrease in frequency of self-injury behabiour. 13 weeks

Panic and Irritability
(Final assessment - 18 weeks post-op in green text)

Before Operation
  • Panic can happen with and without reason for 5 to 15 times a day. And when it happen he will often throw his body to the ground (see self-mutilation). Happen more often when he is hungry or sleepy. SIGINIFICANTLY IMPROVED
  • When his request is not met (e.g. we do not give him rice cracker) or when the request is not met within a short time, he will panic. SIGINIFICANTLY IMPROVED
  • When the music he likes stopped playing (CD or television), he will also panic. IMPROVED
  • Ken will also panic without any apparent reason. For example he will empty all the toys from the box and then panic. Another example is when he read a book he likes, suddenly he will panic and cry. Or when he is fiddling with his favourite straw or plastic tray, he may sudddenly panic and squeeze the straw or plastic tray. SIGINIFICANTLY IMPROVED
  • Sudden mood swing also happen sometime. He can be very happy and suddenly start crying in a few seconds time without any apparent reason. NO MOOD SWING
After Operation
At hospital bed, I noticed when Ken cries, he has a lot more tears than before 7 days
A lot of panic in the morning and irritable throughout the day9 days
Panic only once in the morning14 days
Ken was not happy on something, he made some noise while walking towards to mother. And then his request is not met or understand by mother, he hit his thigh with both of his hands repeatedly and his feet alternatively step on the ground. His elder sister act like this when she was small. Ken is showing signs of emotional control.20 days
No mood swing observed since operation21 days
Showing more patience. For example, before leaving home, he will make some complaing noise but will wait for mother to get change. Before he will not wait and will panic right away.9 weeks
Still some bad mood and panic but limited to times when he is sleepy, hungry or shortly after waking up.9 weeks


Sensory Integration Dysfunction
(Final assessment - 18 weeks post-op in green text)

Before Operation
  • Frequently put things into mouth and chew - straw, metal chain, plastic air cond tube, credit cards, plastic obento tray, string, pushchair front protection bar, chopsticks, etc bite refrigerator-2004-6-30 IMPROVED
  • Eat Sand. IMPROVED
  • Very picky eater. Do not eat green vegetable and any fruit except strawberries. Dislike certain texture or taste. Do not drink soup. IMPROVED
  • Hand-flapping when excited often during TV watching. SIGINIFICANTLY IMPROVED
  • Shake his head left and right vigorously. NO CHANGE
  • Spin his body around. SIGINIFICANTLY IMPROVED
  • Run in circle. SIGINIFICANTLY IMPROVED
  • Over-sensitive hearing. SLIGHTLY IMPROVED
  • Touching the wall during walking. NO CHANGE
  • Rock the gym at home aggressively using his arms. IMPROVED
After Operation
Ken flapped his hand when watching TV but the speed of flapping is a lot slower than before. 8 days
Run in circle but shorter duration than before20 days
No hand flapping in the last 2 weeks21 days
Drink soup everyday since operation21 days
Head shaking, body spinning, rocking the gym was not observed since operation. 21 days
Still sometimes spin his body and run in circle. Shake head and hand flapping has stopped and putting objects into mouth has reduced. Over-sensitive hearing remains.9 weeks
Head shaking while laughing. Sometimes run in circle.17 weeks

Obsessive Behaviour
(Final assessment - 18 weeks post-op in green text)

Before Operation
  • Grab sand with both hands, hold it up and release it, sometimes onto his head, neck or ears. Sometimes he will put sand into his mouth. He can play for over 30 minutes continuously. playing sand 2004-6-28 playing sand at beach 2004-6-28 ALMOST STOPPED
  • Digging out the sand filled in the gaps between the stone tiles with his fingers. He can do this for over 1 hour. NO CHANGE
  • Fiddling with drinking straw. He will also chew it and open the hole with his fingers and chew it close again. Very often if he panic we show him a straw to calm him down. And If he drops his straw when he sits in the push chair, he gets irritated. fiddling straw-2004-6-30 NO CHANGE
  • He like this mark of a TV cartoon series. When reading a children magazine, he often just look at this mark only and ignore other pages. looking at the mark 2004-6-30 NO CHANGE
  • Holding and chewing platic obento tray. Or chew on air conditioning outlet tube or other curly looking tube. NO CHANGE
  • Like escalator SLIGHTLY IMPROVED
  • Play with wet towel. Holding the side or squeeze it small and open it again. with wet towel and put into front of his face and spin the body IMPROVED
  • Take out all the keys of the keyboard of the computer at home STOPPED
  • Showing very little interest in toys. IMPROVED
  • Only interest in a particular page or cover of books. SIGNIFICANTLY IMPROVED
After Operation
Showing some interest in other pages of the children magazine. 19 days
Stopped taking the keys of the keyboard out the keyboard20 days
Some slight improvement (above) but for other activities no big changes or if there is it will be very slight decrease in intensity 21 days
Still play sand for a total of 2 to 3 hours per day and very limited play in toys. But we notice he also wants to go out (leaving home) a lot more than before. And showing renewed interest in playing water.9 weeks
Almost stopped playing sand at home. Instead he want to sit in the washing basin sink and play water.13 weeks
Will flip and look at different pages of books he likes15 weeks

Others
(Final assessment - 18 weeks post-op in green text)

Before Operation
  • Sometimes Ken will bend his body down with his head touching the floor bodybend-2004-6-29 NO CHANGE
  • Sometimes he will flick his hand and made contact with his head STOPPED RIGHT AFTER OPERATION
After Operation
Both body bending down and flicking his hand to the head has not been observed since operation 21 days
Body bending started again with tumble turn ! 11 weeks


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