Spooky's update on Jordan

Post by **spooky girlfriend** » Thu Mar 31, 2005 10:45 am

Since posting in the management thread last week regarding Jordan's health after his seizures, many of you have been kind enough to keep up with me in email and pm's. I thought I would provide some info to you all since I'm finding it difficult to answer all the email personally.

He had a visit with a neurologist yesterday to discuss his EEG test results. It was normal, although many people who have seizures can still have a normal EEG reading. His cat scan and bloodwork were all normal as well. They really don't know what has been causing the seizures, and it might or might not ever happen again. What we do know is that they are very hard on his body. He is still scheduled for an MRI in a few days for any additional information that it might provide, but we have agreed that some ant-seizure medication will be the best thing to not have to walk around wondering when it could happen the next time.

Jordan is such a good kid and has handled the whole thing so well. I'm so proud of him. He has even been able to laugh about himself and has kept a wonderful attitude. I so appreciate all of your concern, guys. You all really help me keep going through this. As you parents know, a lot of people can do a lot of things to you, but don't mess with your kids.

I'll let you all know when we find out anything else. Thanks again.

RedShoes · Post by **RedShoes** » Thu Mar 31, 2005 11:00 am

Thanks for the update - I'm glad to hear he's handling it all so well, even if you've yet to find a cause.

Hang in there!

Who Shot Sam? · Post by **Who Shot Sam?** » Thu Mar 31, 2005 11:15 am

Spookys, my thoughts are with you. I know how difficult it can be when you don't know what you're dealing with. A brief story if you'll permit:

A few years ago, when my wife was pregnant with our first child, she started experiencing sharp, shooting pains in her jaw and the left side of her face. They became more and more excruciating, causing her severe pain. A dentist diagnosed it as TMJ (wrong), then doctors tried to give her pain medication for it, which did nothing. She was limited in what she could take by the fact that she was pregnant, so she just had to grit her teeth and live with the seizures, which would leave her in tears. I remember her locking herself in the bathroom and just screaming into a rolled up towel. I felt completely helpless.

Finally, our GP (not the neurologist) diagnosed it properly, as trigeminal neuralgia, a nervous system condition (that's why the pain killers had no effect). She was given some anti-seizure medication (I can't recall the name). Then, after my daughter was born she had surgery to deaden the nerves in her face. The only other option was some sort of radical brain surgery, which we weren't keen on, for obvious reasons. She still gets these attacks from time to time but can only feel the slightest sort of rumbling, as the nerves have not regenerated themselves - yet.

She told me the attacks were ten time more painful than giving birth to a child, and I believe her.

I guess what I'm trying to say is that you will eventually get the answers you need, if you keep looking, and it might not be what doctors inititally suspect.

Post by **spooky girlfriend** » Thu Mar 31, 2005 11:42 am

Thanks, Red.

And thanks also WSS, for your story and kind words. Fortunately, Jordan seems to have no pain during the seizures and no memory whatsoever of it all after it is over. We tell him things all the things that happened and he has no idea. In a way, I guess it's good.

We never face a physician without doing some homework of our own, so we were prepared to question and debate. We made sure that the anti-seizure med is not going to harm his liver, affect his growth, or change his ability to go to school or play sports.

And in discussing this with the school secretary this morning, she tells me that her own son, who just got a full college scholarship, has been diagnosed with a disease where his auto-immune system is attacking his kidneys. Bless her heart. Our work as parents is never done.

Gillibeanz · Post by **Gillibeanz** » Thu Mar 31, 2005 11:47 am

So far so good Spooky - im glad they havent found anything bad. Keeping my fingers crossed that it stays that way and that it was a 'one off'. Let the little fella know there are lots of people thinking about him and wishing him well.

bobster · Post by **bobster** » Thu Mar 31, 2005 12:39 pm

Glad to hear that things are under control.

I haven't PM'd you, but I've been thinking about you guys! Jordan sounds like a great kid.

Tim(e) · Post by **Tim(e)** » Thu Mar 31, 2005 4:30 pm

SG... I am sorry, but I must have missed the original post regarding this and had absolutely no idea what you have been going through! As a father of two quite young children, I have an inkling of how I might feel if I was in your situation and my thoughts are with you.

I am sure that it will all work out fine... hang in there!

SweetPear · Post by **SweetPear** » Thu Mar 31, 2005 11:52 pm

Thinking of you all and wishing you the best. Hang in there!

Copenhagen Fan · Post by **Copenhagen Fan** » Fri Apr 01, 2005 5:34 am

Dearest Spooky! I hope it continues to go well. I know that a child's poor health is the one thing that can really hurt and scare the hell out of a parent. You, the Doc and Jordan have my best wishes and prayers.

Post by **spooky girlfriend** » Thu Apr 07, 2005 4:27 pm

WooHoo! I just had to share the latest with all of you.

We just got the results of Jordan's MRI back, and everything was clear!!! All they said they found were that he had braces on his teeth, which we of course already knew.

So, cat scan, EEG, bloodwork and MRI, all clear. They have no idea what caused those seizures and they may never know. Now we will watch the medicine and see how he does for a year, and then reevaluate things. But it's nice to know that after a complete workup like that, he is healthy.

Thanks again to all of you for keeping us close in your thoughts.

bobster · Post by **bobster** » Thu Apr 07, 2005 4:31 pm

Great news! Woohoo indeed.

so lacklustre · Post by **so lacklustre** » Thu Apr 07, 2005 4:43 pm

Thanks for the update, great news.

Boy With A Problem · Post by **Boy With A Problem** » Thu Apr 07, 2005 5:02 pm

Excellent News.

RedShoes · Post by **RedShoes** » Thu Apr 07, 2005 5:16 pm

Good to hear! Hope you can breathe a little easier now

Gillibeanz · Post by **Gillibeanz** » Thu Apr 07, 2005 5:34 pm

Best news i've heard all week Mr & Mrs Spooky - celebrate bigtime!

Mr. Average · Post by **Mr. Average** » Thu Apr 07, 2005 5:42 pm

Something tells me that Jordan doesn't have to wonder if his parents and siblings love him and care for him. I presume that he has been smothered with the all the affection that such good news can bring. He will carry it for the rest of his life.

Out of dark times there is always a bright light. Sometimes you need to look hard to see it.

Other times, it's irridescent.

Congratulations

El Vez · Post by **El Vez** » Thu Apr 07, 2005 6:20 pm

Wahoo! I know that your entire family feels like an albatross has been cast off their necks! Martinis all around!

SweetPear · Post by **SweetPear** » Thu Apr 07, 2005 9:46 pm

Who Shot Sam? · Post by **Who Shot Sam?** » Thu Apr 07, 2005 10:03 pm

Good to hear the news Spookys!

King Hoarse · Post by **King Hoarse** » Fri Apr 08, 2005 7:09 am

that piece of news was probably the best birthday present I got so far.

selfmademug · Post by **selfmademug** » Fri Apr 08, 2005 3:19 pm

I too managed to miss this. I'm so sorry for your worry, even if some of it has been alieviated. Horrible.

Dunno if already got a million such stories but my sister had a sort of early-adulthood-onset epilepsy caused, probably, by a concussion she'd had as a kid.

It no longer affects her unless she gets really REALLY tired, or drinks way too much.

It was funny (well sort of) that when she finally got the diagnosis and was telling me about it, she said "Well I don't remember any concussion, frankly, but the doctor said it's a classic case." And I said "What about that time you were playing catcher and stood too close to the plate and got whacked in the temple by the batter?" And she said "Ohhhhhhh. Riiiiight. Forgot that one." Moral of the story being that kids take a lot of knocks they forget about!

Anyway, I send my best thoughts and hope things regularize for Jordan asap.

bambooneedle · Post by **bambooneedle** » Sat Apr 09, 2005 1:14 am

Good.