I have been trying to do at least some homework on Petit Mal Seizures today so that I am prepared for a more educated conversation with the Dr. In doing so, I have found out a few things that have raised some questions for me.

Here are statements from a few websites that caught my attention:

“Absence (petit mal) seizures begin in childhood, usually between the ages of 5 and 15. They do not produce the convulsions and other dramatic symptoms of tonic-clonic seizures. A person does not fall down, collapse, or move jerkily. Instead, the person has episodes of staring with fluttering eyelids and sometimes twitching facial muscles. The person is completely unaware of the surroundings. These episodes last 2 to 3 seconds and, rarely, 10 to 30 seconds. The person abruptly stops activity and resumes it just as abruptly, experiencing no after-effects and not knowing that a seizure has occurred.”

Above excerpt quoted from HERE.

“Petit mal seizures often affect people younger than 20, and children between the ages of 4 and 12 are most likely to have them. Most children with petit mal seizures have an otherwise normal neurological system. Many can expect to outgrow the disorder. Children who were young when the seizures first started, who have no other neurological problems and who have seizures well controlled by medications are most likely to outgrow their seizures. In about half of children with petit mal seizures, the seizures will progress to grand mal seizures”

Above exerpt quoted from HERE.

So here is what bothers me about the above:

1. Ty is only 2. Apparently the age of 4 or 5 is a more “normal” starting age for this. I assume starting earlier is not a great sign.

2. The typical seizure lasts only 2 to 3 seconds. Who on earth would catch that? The fact that I have noticed this is because what I have seen has lasted definitely over 10 seconds and sometimes over 30. If this is the case, Ty could be having a lot more seizures than I know because I am only seeing the more lengthy ones. I would say the ones that happen over 10 seconds have been occurring every week but not every day. In fact, since I mentioned this last week, I haven’t seen anything alarming. A few short ones maybe. So having said this, what does “rare” mean?

3. The very last line made my heart sink. IN ABOUT HALF OF CHILDREN WITH PETIT MAL SEIZURES, THE SEIZURES WILL PROGRESS TO GRAND MAL SEIZURES. Also, I noticed that most of these articles are written assuming the majority of the seizures have no known cause. In Ty’s case we do know the cause. Bilateral hemorrhages and PVL – thus this makes me assume he would more easily “qualify” for progression but my heart can’t go there right now.

4. I did a little drug research and one of the drugs used for Petit Mal Seizures is Theophyiline. This drug is used most commonly for respiratory issues (it is like caffeine) and Ty was on it for awhile when he came home from the NICU to help with his apnea issues. It seems to me that someone may have mentioned that it is also used for seizures and it made me wonder at the time if Ty may have had seizures without it. I could be dreaming all this up though and now I can’t find the darn article I was looking at and every reference to this drug I have found only references the respiratory issues. I hate when I lose track of web articles.

5. I assume Ty is of the category less likely to “outgrow” these because of the root problem. He will not outgrow his IVH and PVL. If they are causing these issues, short of a miracle, I doubt they will resolve. Damage is done.

I did a search today on IVH and seizures and came across a very detailed article on hemorrhages, and PVL. The most common outcome of this combination is cerebral palsy and seizures – THIS is why I am hypersensitive to this at the moment because both of these outcomes are expected for Ty and there is more and more evidence that he will diagnosed with both. HOWEVER – let me share something that I think is amazing. When I was in the NICU and read about PVL, I flipped out and forced myself off the computer. In recent months I haven’t gone back to it. Read the below excerpt from THIS article and you’ll see what had me freaking out in those NICU days.

Prognosis:

Grade I and grade II hemorrhage: Neurodevelopmental prognosis is excellent (ie, perhaps slightly worse than infants of similar gestational ages without PVH-IVH).

Grade III hemorrhage without white matter disease: Mortality is less than 10%. Of these patients, 30-40% have subsequent cognitive or motor disorders.

Grade IV (severe PVH-IVH) IVH with either periventricular hemorrhagic infarction and/or periventricular leukomalacia: Mortality approaches 80%. A 90% incidence of severe neurological sequelae including cognitive and motor disturbances exists.

So let me take you back to Ty’s diagnosis:

Initially I was told he had a grade 4 IVH on his right side and a grade 3 on the left. Later they downgraded the 3 to a 2. When Ty was six months old we had a CAT scan done and PVL was determined. Ty’s hemorrhages, while technically resolved, killed off white matter in the brain that surrounded his ventricles. As a result, the ventricles never reduced in size because the brain doesn’t allow for “dead” space. The ventricles will always be swollen now because they are filling in the areas where the white matter died due to prolonged swelling of the ventricles due to the hemorrhages. Clear as mud?

I COULDN’T BELIEVE MY EYES TODAY WHEN I READ THAT MORTALITY APPROACHES 80%!!!! We have reason to PRAISE PRAISE PRAISE. Considering Ty’s diagnosis, God has covered him miraculously! (That 80% refers to the babies in the NICU – Ty was obviously one of the 20% that survived this!)

God is good all the time – all the time God is good.

About the EEG:

My family has been asking me how in the world an EEG will “happen” to catch Ty in a seizure state. The nurse offered a good explanation and I thought I would share it.

She compared it to a geologist using a seismograph. When geologists are observing earthquake possibilities they watch a seismograph. It takes a “build up” for an earthquake to shake the ground and the trembling is then graded. Just because you can’t see it or feel it though, doesn’t mean it isn’t going on beneath the surface. That is why earthquakes are often predicted. The geologists can read a seismograph and watch the build up effect. They see what happens below the surface that we can’t feel or see. An EEG is similar. In all likelihood an actual active seizure will not be seen however, the brain waves are likely to be reflecting a “build up” of sorts if seizure activity has/will be occurring. The “evidence” so to speak is usually there despite the charting of an active seizure. Thought you’d like to know that ;).

Tomorrow I will be keeping up Ty late and getting him up early on Thursday so he is sleep deprived for his test. Aunt Beck will watch Tanner and Sweetie will go with me to try to keep Ty awake in the car. She might be needed to get him to sleep too. She often has better luck than mama does. So that is my update.

P.S. Jim took me and the boys to Blue Ridge over the weekend to get away. We had a great time. I’ll post pictures later.