Thursday, April 16, 2009

Phin's Story

Sunday, March 09, 2008

Our son Phin (the beautiful little man who prompted me to start to this website) was born naturally with no complications but suffered severe jaundice a few days later, ending up under lights for 4 days. Other than that he seems completely healthy and normal, although he would only breast feed on one side, refusing to lay and feed on the other side

Within a week or two we noticed that whether in his cot or in his pram his head, more often than not, would be over to one side. No particular side was favored. The strange thing for us was that we could straighten his head up, with no apparent discomfort caused to our son, but as soon as we let go it would just tilt back to where it had been. From the time he was born, when lying in your arms he would bend his neck backwards really hard against your arm, so hard that alot of my family members couldn't hold him for long. It was like he was always wanting to look at the roof or the wall behind him.

At 6 wks of age he started to have seizure type episodes when he was lying in my arms. All of a sudden:

§ body would go stiff with a slight pelvic tilt
§ head would shoot over to his shoulder
§ the arm on the side that his head tilted to would bend with the fist going upto his chin and the other arm would stiffen and go straight.
§ His eyes also rolled up to the corner
§ These episodes would only last for a few seconds, then he would start crying and then it would happen again for a few seconds. This would continue for a few minutes and then stop. Around half an hour later it would start up all over again. This went on for a few hours, then the seizure type episodes stopped but his head remained on his shoulder for at least 2 hours.

This all happened again when he was 10 wks old, this time I got him to the doctors in time to actually see the episodes as it happened. This time I noticed more too that when I moved him it seemed to set off the arms and eyes. Anyway this time the doctor sent us to another hospital straight away to see a specialist, who in turn diagnosed our son with Epilepsy. He was put on 'Phenobarbitone' medication which did nothing to stop his turns.

Our poor baby boy was subjected to a batch of tests. He had:

§ Blood tests
§ Ultrasound of Brain

All coming back 100% normal, except the EEG showed a few irregular brainwave patterns that weren't normal.

He continued to have turns around every 2 wks. Gradually they got less violent. By 6 months of age his episodes where just head tilts. The body and arms stiffening and the eyes rolling seemed to have stopped. The one new thing we noticed though, he was EXTREMELY irritable for about 5 days leading up to his head tilt. We also worked out the pattern that he seemed to have his episodes about 1 wk after being sick with a cold etc. But this was proven to be wrong. As he got older he would have and still does have an episode for no apparent reason.

At 8 months old he was taken off his anti epileptic medication as it was obviously not helping, and at 10 months old, after finally getting some video footage, our son was diagnosed with Benign Paroxysmal Torticollis of Infancy. He is now 20 months old (March 2008) and is still having regular episodes (at least once a month), but now they are lasting upto 7 days long.

Now he is walking we have noticed the effect of his head tilt even more, and so has he. When he is having his turns now he is falling over alot more than usual and he also throws himself down on the ground and will just lay there for 5-10 minutes before getting up again. He will do this quite often. After talking to his specialist, he thinks Phin is either suffering double vision from the head tilt or more possibly, he also has Benign Paroxysmal Vertigo.

Phin’s turns are now back to 1 week of episodes, 2 weeks ok, then 1 week episodes etc

He has regular visits with his specialist and neurologist and that is about all we can do for him at this stage.


Anonymous said...


Charli Santiago B.SC.Ost said...

You could try seeing a cranial osteopath
If the nerve supply to the muscles on one side are not working then you might not cure it but you could help your child be more comforatable. If it is a muscle spasm imbalance due to birth trauma then the cranial osteopath wou;d be able to help. (preferrably a paediatrically experienced osteopath (ask at the nearest osteopathic teaching college who would be the best person to see) or use the general osteopathic council register or go to the Osteopathic Centre for children in London if you can)

Unknown said...

Is this the same Phin that has the BPT video on YouTube? An ER doctor that we saw this week, diagnosed our 2 month old son, Marco, by watching the video on YouTube. It is something that none of his Drs have seen before, including his Neurologist. So glad we finally have a diagnosis! After reading you blog, it confirmed his diagnosis for me. He matches everything you listed about Phin including a couple abnormalities on his EEG.

Richelle said...

Yes this is the same Phin from the YouTube clip. I am so grateful that it has been able to help people, especially with diagnosis. Please feel free to join our group on Facebook. It is a wonderful place for support and information from parents all around the world with children suffering BPT.

Jen said...

I definitely will! What is the group name on Facebook?

Richelle said...

Our facebook group is called 'benign paroxysmal torticollis' We currently have 157 members from all around the world.