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Posted Oct 02 2009 3:07pm

Yes, seizures with a question mark. Actually, I've kind of come to realize that everything involving the brain should be followed with a question mark!  The first time I mentioned seizures to my neurologist, they informed me that since
Braydendidn't have the parts of his brain where seizure activity takes place, the cortex, they were certain that he wasn't having seizures. Now after doing a whole lot of research, I knew that to be different, and even after an EEG was performed to "rule out" seizure activity I continued to push the issue.

I wasn'tpushingthe issue because I was worried aboutBrayden's"spells". I'm not even sure that he was having seizures, since the only personal experience I'd had was with a boy who was a year older than me in school who had the kind where you fall on the floor and spasm, his were scary and often in gym class. But I had read about "focal seizures" which seemed a bit familiar to my days.Braydenwas doing something totally different than anything I knew to be a seizure. 

Something I completely forgot to mention in my post about the shunt placement was about Brayden'seyes. Before his surgery, he had "sunsetting eyes" which meant that his eyes would sink down more than stay up where they belong. The build-up ofCSFwas just putting so much pressure on his eyes that it was impossible for them to stay "normal".  

   September 2008  
*it's hard for me to look at old pics because he looksso good now, and at that time Ididn't realize how bad he really did look *

A fter his shunt placement, they were still a bit "sunsetting" but not nearly as much. However, he began to stare off into space or his eyes would flutter like a slot machine going around. And some times he would clench the tips of his fingers out and throw his hands out and tighten up. Again, the neurologist, even after witnessing these spells, informed me that since we could get his attention to disrupt these spells, it wasn't seizure activity. That was hisexplanation, however I've since learned that seizures can oftentimes be interrupted.

After thisneurovisit, which ruled out the possibility of any seizures,Braydenstarted to have more of these "spells". A few phone calls to hisneurooffice got me set up with a prescription forPhenobarbitol, maybe just to stop me from bothering them, I don't know.  This was at about 3 months of age, and a mere 2 months after his shunt placement surgery. Immediately those spells subsided and he started acting like a completely different baby. They had warned me that he would sleepalot, but we didn't have that experience at all...he seemed to be more alert and curious than before. He continued to do much better, but the spells never really went completely away...they have since, however, changed a bit and definitely become much more rare of an experience.

Since then, we've also acquired a new neurologist who wasinsistenton weaningBraydenoff of thePhenobarbitol. I was completely unaware the affect it was having onBrayden'sdevelopment. The spells rarely happen these days, and his new neurologist explains that he seems to have anexaggeratedstartle reflex. Many times when he's moved from one position to the other (say from tummy to back) he'll reach out his arms and clench his hands, but he no longer tightens up as before. Could maybe be his way of adjusting to the different pressure from theCSFin his head. The staring spells don't happen at all these days, really I haven't seen him do it since he weaned off of thePhenobarbitol

Now I wonder if his improvements in the beginning had more to do with the aftermath of the shunt surgery then with thePhenobarbitol, because after weaning off of that heavy narcotic he has gained developmental skills at a much faster rate. I thought he was more alert before, but now he's more active and alert...actually participating in activities, showing acknowledgement to familiar places and people, just growing more of a personality than he had in the previous months.

That's my experience with seizures, however they do exist in a large majority ofhydranchildren, each on a varying level. I'm told that the reason Bray's EEG ruled out any seizure activity is because he doesn't have the cortex where most seizures take place, he's experiencing brain stem activity which acts as seizures, and is not measurable by an EEG. Even in "typical" children, seizures can take place in all of the brain as a "generalized seizure" or in specific parts of the brain as a "focal seizure". Here are the types and descriptions from theepilepsy foundationwebsite:

Types of Seizures

There are many different types of seizures. People may experience just one type or more than one. The kind of seizure a person has depends on which part and how much of the brain is affected by the electrical disturbance that produces seizures. Experts divide seizures into generalized seizures (absence,atonic, tonic-clonic,myoclonic), partial (simple and complex) seizures,nonepilepticseizures and statusepilepticus.

Generalized Seizures

Generalized seizures affect both cerebral hemispheres (sides of the brain) from the beginning of the seizure. They produce loss of consciousness, either briefly or for a longer period of time, and are sub-categorized into several major types: generalized tonicclonic;myoclonic; absence; andatonic.

TypeDurationSeizure SymptomsPostictal(post-seizure) Symptoms
Absence (petitmalseizure)2 to 15 secondsStare
Eyes fluttering
Automatisms(such as lip smacking, picking at clothes, fumbling) if prolonged
Amnesia for seizure events
No confusion
Promptly resumes activity
Generalized Tonic-Clonic(grandmal)1 to 2 minutesA cry
May have
Amnesia for seizure events
Deep sleep

Generalized tonicclonicseizures (grandmalseizures) are the most common and best known type of generalized seizure. They begin with stiffening of the limbs (the tonic phase), followed by jerking of the limbs and face (theclonicphase).

Myoclonicseizures are rapid, brief contractions of bodily muscles, which usually occur at the same time on both sides of the body. Occasionally, they involve one arm or a foot. People usually think of them as sudden jerks or clumsiness. A variant of the experience, common to many people who do not have epilepsy, is the sudden jerk of a foot during sleep. First aid is usually not needed, however, a person having amyoclonicseizure for the first time should receive a thorough medical evaluation.

Atonicseizures produce an abrupt loss of muscle tone. Other names for this type of seizure include drop attacks,astaticorakineticseizures. They produce head drops, loss of posture, or sudden collapse. Because they are so abrupt, without any warning, and because the people who experience them fall with force,atonicseizures can result in injuries to the head and face. Protective headgear is sometimes used by children and adults; the seizures tend to be resistant to drug therapy. No first aid is needed (unless there is injury from the fall), but if this is a firstatonicseizure, the child should be given a thorough medical evaluation.

Absence seizures (also calledpetitmalseizures) are lapses of awareness, sometimes with staring, that begin and end abruptly, lasting only a few seconds. There is no warning and no after-effect. More common in children than in adults, absence seizures are frequently so brief that they escape detection, even if the child is experiencing 50 to 100 attacks daily. They may occur for several months before a child is sent for a medical evaluation.

Infantile Spasms are clusters of quick, sudden movements that start between 3 months and two years. If a child is sitting up, the head will fall forward, and the arms will flex forward. If lying down, the knees will be drawn up, with arms and head flexed forward as if the baby is reaching for support. What to Do: No first aid, but doctor should be consulted.

Partial Seizures

In partial seizures the electrical disturbance is limited to a specific area of one cerebral hemisphere (side of the brain). Partial seizures are subdivided into simple partial seizures (in which consciousness is retained); and complex partial seizures (in which consciousness is impaired or lost). Partial seizures may spread to cause a generalized seizure, in which case the classification category is partial seizures secondarily generalized.

Partial seizures are the most common type of seizure experienced by people with epilepsy. Virtually any movement, sensory, or emotional symptom can occur as part of a partial seizure, including complex visual or auditory hallucinations.

TypeDurationSeizure SymptomsPostictal (post-seizure) Symptoms
Simple Partial90 secondsNo loss of consciousness.
Sudden jerking
sensory phenomena
Possible transient weakness or loss of sensation
Complex partial1 to 2 minutesMay have aura
Automatisms (such as lip smacking, picking at clothes, fumbling)
Unaware of environment
May wander
Amnesia for seizure events
Mild to moderate confusion

Key Things to Remember about Partial Seizures

Although partial seizures affect different physical, emotional, or sensory functions of the brain, they have some things in common:

  • They don't last long. Most last only a minute or two, although people may be confused and need a lot more time afterwards to recover fully.
  • They end naturally. Except in rare cases, the brain has its own way of bringing the seizure safely to an end after a minute or two.
  • You can't stop them. In an emergency, doctors may use drugs to bring a lengthy, non-stop seizure to an end. However, the average person should wait for the seizure to run its course and try to protect the person from harm while consciousness is clouded. People who have been shown how to use a Vagus Nerve Stimulator (VNS) magnet may try to stop a partial seizure in that way.  
  • They are not dangerous to others. The movements produced by a seizure are almost always too vague, too unorganized and too confused to threaten the safety of anyone else.

Nonepileptic Seizures

Nonepileptic seizures are episodes that briefly change a person's behavior and often look like epileptic seizures. The person having nonepileptic seizures may have internal sensations that resemble those felt during an epileptic seizure. The difference in these two kinds of episodes is often hard to recognize by just watching the event, even by trained medical personnel.

But there is an important difference. Epileptic seizures are caused by abnormal electrical changes in the brain and, in particular, in its outer layer, called the cortex. Nonepileptic seizures are not caused by electrical disruptions in the brain.

Status Epilepticus

Most seizures end after a few moments or a few minutes. If seizures are prolonged, or occur in a series, there is an increased risk of status epilepticus. The term literally means a continuous state of seizure.

I don't know how to categorizeBrayden'sspells but since I don't believe them to be painful, nor interfere with his daily activities to an extreme, I don't even pay attention to them nor worry that they need to be controlled. We've been very lucky on that level, but that doesn't mean that it won't be something that we're faced with in the future.

Fortunately, there are many ways to treat seizures...unfortunately, some things work better for some than for others. Some medications can be used in combination, but it takes a lot of trial-and-error to find a combination that works, and then sometimes the combination will work for a while then need some adjusting. There is also a special diet, called theKetogenicDiet, which works very well for some children that can tolerate the very high fat content entailed.  It also has the plus side of controlling seizures on it's own, while eliminating some or all of the medications. In some cases, seizures are so difficult to control that a surgery is the best means to control them. AVagusNerve Stimulation which is a simple, outpatient surgery that last about an hour and is highly effective without the side-effects of various medications.

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