Please explain Doctor's notes

[DTScott]

My eight year old daughter has had epilepsy for five years and I have noticed that the types of seizures have changed over this time. When they first started she would stare off and they would last anywhere from 30 min. to 60 min. The last two years, she has been getting more, I think, tonic clonic seizures.....
Over the last year, we have not witnessed Tahya's seizures, only the after affects. They all happen really early. She roughly gets one or so a month. It is always the same routine...she wakes up and someone usually hears her crying. Her color is off and you can tell she is in pain. She says her head hurts so bad she can't handle it. I give her the migraine meds, and I rub her head for about an hour, in between her throwing up. Then she falls asleep for about 3 - 5 hours. She is on Zonegran, Lyrica and just failed Lamictal.

I just received all of her medical reports and I was reading through.
Can you please explain what this means..."These are rarely generalized but appear to have a left central temporal maximum". "I suspect this is complex partial epilepsy although generalized epilepsy cannot be excluded".

I have been reading different book, but it is still confusing!!
Thanks.

 

[RobinN]

Boy do I know the pain of migraines. I use to throw up too. 30 yrs of fetal positions, lasting up to 4 days. That is until one very special doctor suggested that I try ionic magnesium, and COQ10. I have not had one in over 3 years.

M daughter has had tonic clonic seizures, and we are now trying magnesium, (additional supplements that support brain function), and neurofeedback. Something is working.

I know how all the labels can be confusing, but the point is to keep a good journal, and figure out what the triggers are, so that you can eliminate them.

 

[BuckeyeFan]

I would ask your doctor - you don't need to wait until your next appointment. A phone call or a letter should get a better explanation from him.

I don't want to try to interpret his meaning from just two sentences, however it seems like he is trying to explain the SOURCE of the epilepsy. This may impact how your child is treated and is good for you to understand in the long term. More important though is making sure you are taking care of all her immediate needs (medications, first-aid, communicating her condition to school and other care-givers, etc...)

Your education of all the terminology will come with time and will hopefully alleviate some of your fears. Read the thread epilepsy 101. I think that is a great starting point.

God Bless your little one - she is the same age as my grandaughter.

 

[skillefer]

Hi DT! I gotta agree with Buckeye. Call your doctor and ask exactly what the report means. A doctor needs to be able to put all the jargon into regular every day language. And never leave a doctor's office if you don't understand what he/she said.

 

[brain]

I just received all of her medical reports and I was reading through.
Can you please explain what this means..."These are rarely generalized but appear to have a left central temporal maximum". "I suspect this is complex partial epilepsy although generalized epilepsy cannot be excluded".

:hello: Scott!

I just stumbled upon your post! Welcome to CWE!
And I'm not a Medical Doctor but what I am reading
from what you are posting above if that is what he
(or she) had documented is most likely implying in
this terminology - based most likely from the EEG
and/or AEEG and/or vEEG recordings
if she's had them done and the conclusive findings
based on them altogether have come to this point:

That your daughter's seizures rarely ever generalizes,
(meaning spreading across to other parts of the brain)
but appears to be on the left temporal lobe region.
(The Doctor merely speculates where "it might be"
for it is so noted following on your next quote that
"I suspect"). The Doctor is implying that your daughter
might have Complex Partial seizures but cannot rule
out the possibilities of generalizations (tonic-clonic).

This is my translation of the above in layman's terms;
I would not be surprised if you went in and had a discussion
with the Doctor for a "conclusive possible factors or issues"
conference to go over with for clarifications.

My hunch is, the seizures are too deep in your own
daughter's brain for the electrodes to pick it up. And
it can be difficult at times to capture seizures, even
with grids and other high technology equipment, for
timing and patience is everything.

But like I've stated - I am NOT a Medical Doctor, but
I won't be surprised one bit if the above of what I've
posted is exactly what the Doctor was implying all
along - but do post and let us know!

I'm really sorry your daughter is having to experience
all of this hideous "E"! (((((( hugs )))))))) to both of you!

 

[Bernard]

Sounds like the seizures have a focal point (left central temporal region) and are not firing across the entire brain (generalized).

Bear in mind that seizure patterns can change, so I'm not sure how useful it really is other than determining whether or not one is a candidate for brain surgery.

 

[DTScott]

Thanks once again for all the great information. We met with the Neurologist yesterday and asked lots of questions.

From what I understand, Tahya's seizures do appear generalized but have a left central maximum. He explained that Tahya is constantly having seizures (24/7) but we only see the big ones (like when we see her zoning out). She is not a candidate for brain surgery because her seizures are coming from all over her brain and not one specific spot.

I mentioned neurofeedback and he said he is not convinced. (His opinion!!!)

He is all for the VNS Surgery....after I researched it, I thought it would be terrible!!!

Then we talked about the Ketogenic Diet! I just got finished reading "The Ketogenic Book", so I told him I am in 110%!! It sounds fantastic...he didn't seem too happy??? He said there was alot of side affects.

All and all, my husband and I are going to take her for a second opinion at a wonderful University in Charleston. They have a new comprehensive epilepsy program with doctors that have trained at John Hopkins. We hope to get in within the month!!

We have also found a neurofeedback specialist, 2 hours away, which we will meet with soon.

I did walk out of there very blessed to be able to homeschool Tahya. Who knows where she would be put in a public school. I also realize that God is bigger than any doctor or medication and that praying for His will is the best end result!

In the meantime....we will continue with her meds, see if we get approved for the diet and get a second opinion!!!

 

[Bernard]

I'm glad the doc was able to explain the test results for you.

Most neuros don't know much about neurofeedback. It's a shame. Just remember, if you choose to try it, that it can take a while before you start seeing any results with it.

Good luck with whatever direction(s) you choose.