Instead I found a horryifying disease called Infantile Spasms. The web was full of bad news. It is really tough reading things like, "Infantile spasms is one of the “catastrophic childhood epilepsies” or "Infantile spasms is associated with a significant risk of mortality and morbidity." This is devestating news to anyone, but when you read these words about your child your heart sinks. What was most devasting was that there seemed to be no hope and no good stories online. It was very depressing.
When our doctor told us that Aiden had Infantile Spasms he said that there were many reasons why children have seziures, but the most devasting is Infantile Spasms. Thanks doc for the optimism. Any parent of course hates when there child is hurt or suffering but it is extremely hard to know that you child may never get to live a normal life. My poor little Aiden was only five months old and you are telling me that this might be it for him? That he may never walk or talk?
Here is a little backgroud on Infantile Spasms:
Most infants with infantile spasms develop a pattern of movements called spasms, sometimes also referred to as epileptic spasms. The most common age for these spasms to begin is between 3 and 6 months of age. They can begin earlier than 3 months and sometimes begin after 12 months of age.
The spasms themselves only last a few seconds, usually only one or two seconds. Usually several spasms occur together in what is called a cluster. The infant usually appears to recover or relax between each spasm. There may only be a few spasms in a cluster or there may be many, even more than one hundred. Very occasionally, only one spasm will occur at a time. In between clusters of spasms many hours without spasms can occur. Occasionally more than a day will pass without a cluster of spasms.
Some infants may be at risk of slow development because of the condition already affecting the brain before the onset of spasms. But many parents notice that their infant behaves differently when the spasms start. Their child may loose interest in their surroundings, taking less notice of their parents. Some infants become irritable or drowsy. Parents often wonder what is happening because of this change in personality. But not all infants show this change. It used to be thought that infants had to suffer from this and from delayed development before doctors should use the name West syndrome. But it is not necessary for the infants to have abnormal development before calling the condition either infantile spasms or West syndrome. That is because some infants with infantile spasms will continue to have normal development.
Unfortunately, all infants with this condition have a high risk of having slow development after the spasms start. Some infants will stop having the spasms and will go on to develop normally. It is because of the risk of poor development that doctors like to start treatment as quickly as possible. We are not certain that starting treatment quickly will help to protect infants from poor development. We know that when the spasms stop quickly, the infant has a better chance of good development.
Sometimes the spasms disappear and are never seen again once the initial treatment works. Sometimes they disappear only to come back later. Usually this happens within 3 months but it can happen later. When they reappear, doctors call this a relapse. The spasms can be treated again and can still disappear once more. Relapse is disappointing but it may not be too serious if the spasms go away again with more or new treatment.
The spasms will have disappeared by the age of 14 months in about three quarters of infants with this disorder. After this age the spasms can still come back but this is not common. infantile spasms can continue through to school age if they do not respond to treatment but eventually they do stop on their own. Some infants will develop other types of seizure. The other types of seizure include drop attacks, tonic-clonic seizures, focal seizures, myoclonic seizures, absences or blank spells (but not usually typical absences). This can happen to any child with infantile spasms but it is most common in infants whose spasms do not stop easily.
Electroencephalography (EEG) is an essential component in the evaluation of epilepsy. The EEG provides important information about background EEG and epileptiform discharges and is required for the diagnosis of different disorders.
Following a seizure the EEG background may be slow. However, background EEG frequencies that are slower than normal for age usually suggest a symptomatic epilepsy (ie, epilepsy resulting from a brain injury or brain abnormaility). Normal background suggests primary epilepsy (ie, epilepsy where no cause is found or possibly genetic epilepsy). Thus, EEG background offers important prognostic and classification information.
Epilepsy syndromes include symptomatic, cryogenic, and idiopathic epilepsy. Symptomatic epilepsy is defined as seizures resulting from an identifiable cerebral disorder. Cryptogenic epilepsy consists of seizures that occur without an identifiable cause in a patient with cognitive impairment or with neurologic deficits (as in Infantile Spasms).
This picture shows an EEG demonstrating hypsarrhythmia in infantile spasms. Note the chaotic high-amplitude background.
The above picture shows a normal eeg.
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