Migrating partial epilepsy in infancy

Epilepsy Action is indebted to Dr Richard Appleton, a Consultant Paediatric Neurologist who specialises in children’s epilepsy, and to Dr Rachel Kneen, Consultant Paediatric Neurologist and Dr Stewart Macleod, Specialist Registrar in paediatric neurology, at Alder Hey at Alder Hey Children’s Hospital, Liverpool, who have kindly prepared the information on this page.

This is a newly-described epilepsy starting in very early childhood. It is also called:

  • migrating partial seizures of infancy
  • malignant migrating partial seizures in infancy.

It seems to be a very rare type of epilepsy.

Most children start having seizures in the first few weeks of life. All children will start having seizures by six months of age.

Symptoms

Different things happen in the seizures.

  • The eyes may turn or deviate to the left or to the right.
  • There may be some stiffness of the body, arms or legs (either affecting one side of the body or both sides of the body).
  • The face may become very flushed (very red) and there is often a lot of drooling (salivation).
  • There may be lots of tears in the eyes (but the child does not always appear upset).
  • There may be chewing or some very brief cycling movements of the arms or legs.

All of these seizures are called partial seizures. Sometimes these seizures may then progress into secondarily generalised seizures – and these are called tonic-clonic seizures. This more commonly affects older children (aged two years and above).

The seizures may occur only infrequently (now and then) in the first few weeks after the epilepsy starts. However, very rapidly, the seizures increase in frequency to the point where they may occur 10, 20 or even 50 (or more) times a day, every day.

When the seizures start in infancy they usually last only 30 seconds or up to one minute. In older children the seizures may last many minutes.

No cause has been found to explain this type of epilepsy. All tests, including brain scans, blood and urine tests, skin and muscle biopsies and genetic tests are usually normal. It is not due to any ‘birth injury’ and it does not seem to run in families.

It is possible that a child’s development may show some progress if the seizures can be controlled for a number of months. However, this is very rare. Even if some development does occur, the child’s developmental will not ‘catch up’. They will still have learning difficulties. The learning difficulties are usually severe.

Diagnosis

The diagnosis is made by taking a very careful account of the seizures, especially at what age the seizures started and descriptions of the seizures.

The EEG may be very helpful, especially if the child has seizures during the EEG. This will show that the seizures come from different parts of the brain. This is why it is called ‘migrating’ partial epilepsy of infancy (as the seizures ‘migrate’ or move from one part of the brain to another).

Treatment

It is unlikely that any anti-epileptic medication will ever control the seizures. Sometimes a medication called stiripentol may be helpful but only for a brief period.

Other treatments have also been used but with very little success. These have included the ketogenic diet, steroids (prednisolone) and intravenous immunoglobulins.

It is possible that the very oldest anti-epileptic drug bromide may control some of the seizures in some children. However, bromide may cause unpleasant side effects and must therefore be used very carefully.

Prognosis (outlook)

The prognosis or outcome is usually very poor. This is because the seizures never come under control for more than a few days or a week at a time. Sometimes they are never controlled. This means that they continue to happen every day.

In addition, most children show very little developmental progress. No child with this condition has ever shown a completely normal development.

Support organisation

Contact a Family, 209-211 City Road, London, EC1V 1JN, telephone 0808 808 3555, www.cafamily.org.uk


 


We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.

Comments

Thank you for posting this information about this exausting diagnosis. It took the Doctors over a year to figure this out. It is very rare. Our Child is the only one we know of that has it in Alaska, and the only one that had it while we were in Michigan, and the Doctors at Cleveland Clinic in Ohio were not interested in labeling him with this even though it matches him to a T.
We have a support group on line a Yahoo group for parents with Children with this disorder. Thank you for posting this information for the public to find.
Sincerly,
Rachel Brittin

Dear Rachel

I'd sincerely appreciate if you can let me have the details of the yahoo group. I'd like to pass it on to a neighbour of mine.

Many thanks

Lynne

Hi
The parent support group at Yahoo is
http://health.groups.yahoo.com/group/MPEIparentsupportgroup/
We would love to hear from anyone who's child has been dxd with this condition.
Margaret

Try this linkhttp://health.groups.yahoo.com/group/MPEIparentsupportgroup/

My son Harry was the first child that Dr Richard Appleton diagnosed at Alder Hey Hospital. Harry followed the course of this condition to the letter. He never gained head or trunk control, could never voluntarily move his limbs and he lost the ability to eat and drink at 11mths old. Harrys seizures were never controlled, although we did have 'good weeks' and bad weeks.

Harry deteriorated when he got to 3.5yrs old. His episodes of pneumonia increased with his lungs getting more and more damaged each time. Harry passed away in his mummy and daddys arms 10 days after his 5th birthday,on 29th April 2008.

Dr Appleton and his team at Alder Hey never gave up trying to find something to help Harry. We had a fantastic service, and it is due to their wonderful care that he lived such a happy, comfortable life. This is a devastating condition and more research needs to be done.

To learn more about our beautiful boy, Harry Bear, go to www.harrysjourney.co.uk

My daughter Niamh was diagnosed with this condition at Great Ormond Street Hospital when she was 1 year old.
Like Harry, she too followed the progression described by Professor Appleton however she did respond well to the ketogenic diet and became seizure free for 3 years.

Her quality of life improved by gaining control of her seizures, however she made no further developmental progress. She too could not hold her head or trunk, move her limbs voluntarily nor feed orally but she could smile and laugh in response to touch and sounds.
She began to deteriorate aged 3-4 with more frequent chest problems, a movement disorder and Dystonic spasms.

She passed away in February this year aged 4.5 after a bout of pneumonia caused her stomach to fail. She was a very special little girl from whom we learned a great deal and whom we miss dearly.

To learn more about Niamh and MPEI please visit: www.niamhsjourney.com

As I was reading through this site again, I realized that I never checked back. I just wanted to say, that the other Moms and Dads with Children with this disorder are Amazing and should be honored for the care and love they show their children, thanks Margaret for posting, Denise and Alison, you are my heros!

And thanks Docs for all your insight and continued care for children like ours!