A little worried - UPDATE

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Registered: 08-31-2004
A little worried - UPDATE
15
Sun, 11-20-2005 - 11:39pm

Well, we went back to the Neurologist on Friday, where the doctor put DS through a whole series of motor tests, such as 'Don't let me push your arm down,' and 'Walk heel-toe,' and that all was completely normal and quite a lot of fun for my son.

However, the EEG showed some mildly abnormal waves from left frontal lobe that were suspicious for seizures, but could not be definitively determined to be seizures. Sigh...

So now we have to schedule him for a Sleep EEG, which is the same test he took last week, but he has to fall asleep during the test, because apparently seizure activity is more detectable while you are sleeping. So we will have to keep him up very late the night before and get him up very early in the morning of the test, so he will be more likely to nap during the procedure.

So now I do have words that I can research online and they keep directing me to epilepsy sites.

Not sure what to make of this...

Susan

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iVillage Member
Registered: 04-04-2003
Mon, 11-21-2005 - 2:41pm

Wow, that whole sleep EEG sounds tricky. I can't imagine either of my kids falling asleep on command like that. When my younger son needed EEG testing, it was done as an inpatient for 24 hours (ended up being 48 hours b/c the first night the wires came unplugged...ugh). Best of luck with the test, and getting some clear results. I hate dealing with the not-sure-what's-going-on stuff. Did you see my other post below? Is it an arachnoid cyst your son has?

-Lynn

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Registered: 08-31-2004
Mon, 11-21-2005 - 3:04pm

No, Lynn - I didn't see your post. I'm sorry. What heading is it under? I guess I missed it somehow.

I don't know what kind of cyst my son has. It was only described to me as fluid filled, lobular in shape and benign. At the time of his last MRI, it had reduced significantly in size and I was told this was excellent news.

I am thinking this new thing may be unrelated, as the cyst is in his cerebellum and the mysterious seizure activity is coming from the left frontal region.

Yeah, I have my doubts about doing a sleep EEG. Even when tired, my son tends to keep going, so we'll have to see. Maybe I can bribe him... :)

Susan

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Registered: 04-04-2003
Mon, 11-21-2005 - 4:06pm
My post was a reply to your first post, the 8th, I think.
-Lynn
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Registered: 06-20-2000
Mon, 11-21-2005 - 5:38pm

Keeping my thoughts with you and your family, hoping it turns out to be something minor & easy to fix...

chin up, mom!

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Registered: 03-27-2003
Mon, 11-21-2005 - 7:06pm

Keeping you and your son in my prayers.

Lynn

Lynn
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Registered: 08-31-2004
Mon, 11-21-2005 - 8:44pm

I did miss your post, Lynn! I don't know how - usually I'm pretty good at checking, but I must have accidently skipped yours.

Like I said, I don't know what kind of cyst it is. I didn't realize there were different kinds actually. However, the cyst did not seem to be bothering him in any way that I could tell. And the neurologist put him through the paces with normal results. So it seemed that he was not experiencing any symptoms at all from the cyst. No headaches either that I am aware of.

However, he does have a very minor speech delay. I went ahead and signed him up for speech therapy just to be proactive about it, but I read that the left frontal region of the brain can control speech and that is where the seizures are originating (if they are in fact seizures).

I don't have any questions yet - don't know what to ask. Tomorrow is his sleep EEG (we will be up late tonight!) and I imagine after meeting with the neuro again, I will know what to ask!

Susan

P.S. I have not personally consulted with a neurosurgeon about the cyst, however, his neurologist did and they both agreed that surgical intervention was not necessary at this point in time - Thank God. :)

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Registered: 03-27-2003
Fri, 11-25-2005 - 12:08pm

You know Susan, we all have soem "odd" things in scans, MRI's and all those things that take a look at our body and how it functions. Try not to worry unless they say to. Truly, technology is magnificant these days and doctors are wonderful, too. It just may be a freak thing.


I have titers that indicate a borderline issue. The first doctor that foudn this said to me (while I was seven months pregnant, mind you) that I may have MS or Lupis. They said to come in for a whole bunch of questions and tests. I finally just caved in. I was sooooooooooooooo distraught for YEARS over this. Come to find out that many women and (men, actually) have this and it is no indication of MS or Lupis, per say. It could just BE. So, when I tell you not to worry until there is reason, I mean it fromt he heart. Soetimes we get all upset and it turns out to be something that just IS.


HUGS! I know it's easier said than done.

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Avatar for sesamemom98
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Registered: 03-26-2003
Tue, 11-29-2005 - 12:44pm

Susan,

As someone with a seizure disorder, I know how scary it feels to have one & not know what's going on...but I have no idea what it feels like to watch your child experience it & feel powerless to help him.

All I can do is to send you (((cyber hugs))) & lots of prayers. My neurologist has kept me seizure free for 9 years now; it just takes finding out what causes them & finding the right medicine to control them. I pray he doesn't have them though!

Adrianne

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Registered: 08-31-2004
Tue, 11-29-2005 - 12:49pm

Thank you Janet and Adrianne,

I have kind of relaxed a little bit about this. Everything I have heard and read make this seem like if he does indeed have epilepsy that it is still 'do-able' and won't impact him too much.

He did his sleep EEG last week and I am still waiting to hear the results of it. Hopefully I will get a call today or tomorrow.

Thanks again to everyone for all the supportive words. :)

Susan

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Registered: 03-27-2003
Fri, 12-09-2005 - 1:27pm
How were the results, Susan? Have you heard anything else about it? HUGS!

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