Radiologist MRI report and epilepsy

First, the radiologist report:

The paranasal sinuses and mastoid air cells are clear.

Impression:  Subtle T2/FLAIR prolongation of the right hippocampus with questionable decrease in size of the mid  posterior body relative to the left. Findings are concerning for recent seizure or early mesial temporal sclerosis.

Asymmetry of the left cranial vault and postsurgical change status post known repair of the craniosynostosis.

This is exactly what dave told me he saw a week ago but it wasn't real to me until I actually saw it in writing.
What does this mean? It means Calvin has temporal lobe epilepsy (TLE).  It means Calvin has been having seizures for a long time. It means the repeated seizures have caused scaring in his brain.  I'm sure it means so much more that I have yet to learn.  I have been reading quite a bit about epilepsy this week.

I have experienced a wide range of emotions since learning this. First, I thought, ta da, we found the missing piece to the puzzle and FINALLY know what is going on with our boy. It is not just that he is hyperactive, defiant, difficult. It's not just that I'm a bad parent and can't teach the child right and wrong. It is not just that he isn't sleeping well. There is a real physical cause for all of his problems.  It is sort of nice to know that all of my persistence and begging dr's to run tests on him to try and find a physical cause for his problems was not  just a crazy mother looking for an excuse. I have always known there was an underlying physical cause that at least contributed to his struggles.  That was my first reaction.  My second was of sadness. Now that we know the cause of his problems, it is sad to know that he has been experiencing seizures for years and they have been causing serious damage to his brain.  I have to grieve the loss of my child yet again. What would Calvin be like if he did not have these seizures going on in his head preventing him from learning as he should and causing such out of control emotions?  Who is the real Calvin?   And lastly, most of all I feel so blessed. We are lucky to know what Calvin has. We're lucky he's in a great school. We are so lucky we have healthy children. Our problems are so small compared to others. 

Some quotes from one of Dave's Neurosurgery book.

Seizures are defined as an alteration of behavior, movement, or sensation that results from an abnormal and excessive discharge from a group of neurones.

Epilepsy is defined as two or more unprovoked seizures.

Incidence of epilepsy during childhood is 1%.

The impact of repetitive seizures and anti epileptic medications can present noxious stimuli at critical developmental windows....although the vast majority of children with epilepsy eventually enter into remission, they remain at a substantially increased risk of not meeting their educational, vocational, and social goals.

Mesial temporal sclerosis (MTS) is the most common pathology in adults undergoing epilepsy surgery. It is rarely seen in a child less than 10 years of age.

Children with TLE spend a significant portion of their "awake" time with an altered percetion of surrounding stimuli. The effect of this intrusion into the child's normal developmental schema blurs and therefore affects the normal processing of information necessary for the normal functional development for cognition and other neuropsychological abilities. Numerous studies using full-range IQ scoring have shown that intellectual function is depressed in these children and many have debilitating behavioral problems that include temper tantrums, aggression, attention deficit disorders, and hyperactive states... 

Children with imaging abnormalities rarely "outgrow" their seizures.

Important disclaimer for the following quotes -these came from a NeuroSURGICAL book so of course the point of view is slanted toward surgery. We haven't been to the neurologist yet to find out if he would even consider surgery for Calvin.  From my reading it seems that surgery is recommended for people who have seizures which can't be controlled by medication 

Early surgery in children with MTS leads to an overall improved chance of seizure-free state an dimporved outcome with regard to cognitive and neuropsychological measures.

If a patient has had seizures for less than a year and is found to have a lesion, he or she can be treated for the lesion alone with excision with a high likelihood of curing the seizures. If the seizures have been occurring for more than a year, in children with lesions, then they are less likely to be cured with lesional resection alone

Surgery remains superior to continued medical therapy with regard to outcome, morbidity and mortality in children with intractable temporal lobe epilepsy (INTRACTABLE means very difficult to control with medication).


Temporal lobe epilepsy articles:
http://www.hindawi.com/journals/ert/2012/849540/#B8
http://www.epires-journal.com/article/S0920-1211(04)00120-2/abstract


We still haven't been to the neurologist.  Our appt is 3 weeks away. We have so many questions.

one month contact!

Today Calvin finally reached his goal of wearing his contact for one month as he is supposed to do. We started contacts in November and every month he either accidentally lost or took it out somewhere or purposely took it out and ruined it when he was mad.

I am proud of him for doing a better job with it now!

He is trying to be responsible with his contacts so he can earn his Wii back. Dave took it from him a few months ago as a consequence for being so irresponsible and ungrateful for his contacts.

Yay for Calvin!

Also, a month or two ago we met with the opthomologist. We have been seeing the opthomologist 4-6 times/year for the last 6 years. At this appointment he told us that we don't need to see him anymore unless there is a problem. We can follow up with the optician who fits us for his contacts.   It will be nice not to have these appointments any more. (Though I will miss our opthomologist. He was my favorite of all of our Dr's.)  And, the timing couldn't be better. With all this new seizure stuff going on we will probably have plenty of other dr. appointments and things to worry about.

Calvin's vision now is 20/20 in one eye and 20/40 (corrected) in the other. It is probably as good as it will get and I think it is a result we can live with. It is certainly an improvement from where we started which is 20/80.

waiting

This week Calvin had his MRI. Things went very well. He had to be fasted and ready for general anesthesia, which is always kind of a pain for a kid who loves to eat!  He is old enough, however, to understand the importance of the dr's instructions and to go without even if it is uncomfortable. Also, we were lucky enough to get the 8:30am exam time so he only had to skip early morning breakfast.

Calvin did a good job at his appointment.  After the MRI while I was waiting with Calvin in post anesthesia recovery, Dave slipped into the OR to chit chat with the neurosurgeon operating (check the results of the MRI under someone else s log-in since he isn't technically allowed to check Calvin's chart).

The MRI looked fine, but there was a subtle finding in the temporal lobe. Dave said it could be dismissed as nothing by the neurologist or could possibly be the focus and what the neurologist will say is a possible cause for the epilepsy. Dave is not an epilepsy expert so he can't really know with certainty what exactly Calvin will be diagnosed with and though we know the EEG showed epileptic activity, we still don't know in more detail exactly what was seen in that test.

We don't see the epileptic specialist for another month so for now we are just waiting to have all of our questions answered in August. We feel grateful that we saw the seizures that we did and were able to get all of the testing done so quickly. We are hopeful that the medication Calvin is on will help control them for now.

brain MRI scheduled

MRI with and without contrast is next week.  The exam is 45 minutes in length and general anestesia will be needed. We got a nice and early time of 8:30am which is the best since Calvin has to be fasted. We report at 6:30am!!  I think I might just send Dave with him in the early AM and then take off a bit later when I have a chance to get the girls up and out the door.