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Old 05-06-2004, 03:28 PM   #1
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Location: erie pa
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gagcas HB User
Cool Hello, we made it back.....~: )

hi everyone,

well we are in one piece. we got back aroung 4:30 yesterday evening. i dont have a whole lot to tell because as you said they couldnt really tell me anything. they set an appointment with the neuro that was reading the tapes while we were there. we have to go back june 2nd for a follow up and to get the results of the tests.

Gage did really well considering he couldnt get off the bed except to go to the bathroom which it seems, as he caught on to it, became a frequent thing . i got lost going up there and lost about a good hour of travel time but what can you do. i expected that to happen.

i seem to feel even more confused now than i did before i went but then again they were pumping me full of info that it was hard to comprehend. i caught on one of his papers they sent home with us that it said he has multifocal epilepsy. anyone know what this is. and i was able to get him into one of his tempers. they wanted him to blow on a pinwheel for three minutes and he wanted no part of it. not a bad one but enough for them to see on the tape. he also did very well with the genetic testing. the dr. was very thourough in explaining it all to me. she took a history of everything like ADHD in the family and any miscairages (sp), etc. they ordered a bunch of testing on the bloodwork. she said gage has symptoms of a littel bit of everything, not just one in perticular. she ordered testing of high resolution karotype, a tets on his gene 22, subtelomere probes to see if normal, and a fragile X test. i am not sure as to exactly what this all means. she did also mention something about a tempersclorosis epilepsy. if anyone can help me on this it would be greatly appreciated. i had asked her if she could write this all down for me so i could do some research but she didnt. they are also ordering a echocardiogram, and renal ultra sound of kidneys and liver. i was so impressed by this geneticist. she id being so thorough about everything.


i also found out from his pediatrician that gage's old neuro is trying to get another clinic up and running, but we dont know when so it was good to keep the appt. in just because they can always transfer everything back to here. i know this is all a big mess of a letter but im still trying to figure it all out myself.


i hope everyone is doing good and i can always update as i get things in. the VEEG should get to his dr. here in erie in 7-10 days and the genetics will be about 2-3 weeks. thakns abunch for the letters. talk at ya soon.
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Old 05-06-2004, 09:20 PM   #2
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tkdmom96 HB User
Re: Hello, we made it back.....~: )

Hi Jennifer,

Welcome Back! Sorry to hear you got lost...but you made it!

Happy to hear Gage did well too...I knew you guys would be fine!

I don't know what the "tempersclerosis E" is. Could it be temper induced seizure activity? Multi-focal means that seizure activity could be originating from more than one place, but I wouldn't read a lot into this right now though. Wait until all of the info gets sent and reviewed. You also mention you have a consult set for June 2nd. You should hear and know more by that point.

When was the last time Gage had an MRI? I can't remember if you mentioned that or not. Did you see regular Neuros while you were there? Or did you see an Epileptologist by chance?

I do know that the Fragile X testing is used for autism, a friend of ours had that particular test done with their son. I couldn't tell you much more about it than that though.



Give Gage a big hug and tell him what a big boy he was for doing all of that 'stuff'!



Talk to you soon Jen, off to give blood tomorrow for the surgery,

Vicki
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Last edited by tkdmom96; 05-06-2004 at 09:21 PM.

 
Old 05-06-2004, 10:31 PM   #3
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sts22 HB User
Re: Hello, we made it back.....~: )

Perhaps she said Epilepsy due to Temporal Sclerosis.

 
Old 05-07-2004, 03:30 AM   #4
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gagcas HB User
Re: Hello, we made it back.....~: )

thanks vicki,

for the info. i was just looking for a little bit to go on so i could do a little research on this stuff. keeps me from going crazy and that way im not so spooked if something does come up. im not sure if it was an epiologist or a pediatric neurologist that was in the hospital. i never saw her. the only ones we saw were the ones that were doing the test things. so im not to sure on that one.

gage had an MRI when he was having all the testing done to see what was wrong way back in august or november before we found out about teh siezure activity. the genetist said he should probably have one done once a year at least, and he will probably have one done once we get the results back from the trip to pittsburgh. im goping to his pediatrician today to sign some release forms so they can get the results and be able to go over them with me too. i hope the surgery goes good and everything comes out ok. talk to you soon.
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Old 05-07-2004, 06:27 AM   #5
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tkdmom96 HB User
Re: Hello, we made it back.....~: )

Hi Jennifer,

I just popped on quick before we head to the blood center...

Katie has seizures due to the Mesial Temporal Sclerosis in the left hippocampus. Was anything like that mentioned? I noticed the other post for the temporal sclerosis, but was thinking Gage's E might have more to do with the 'fits' you said he has. Which is why I guessed the temper induced seizures.

Well, I wouldn't read too much into things until you get the exact wording you need. You could drive yourself batty thinking and reading all kinds of things, without knowing for sure what you're looking for. I did that, and it can be exhausting. I understand what you mean though by not wanting any surprises.

Just try to relax and hang in there, I also know the waiting game can seem like eternity, we've been on this for a year May 26th! Man, I can't believe that!

Take care,

Vicki
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Old 05-07-2004, 08:21 AM   #6
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kayakmom HB User
Re: Hello, we made it back.....~: )

Since she ordered the renal scans etc I bet it was TUBEROUS SCLEROSIS which can be genetic. There can be tubers in the brain and kidneys and this causes the epilepsy. Good to rule out all that can be...


The multifocal E is that there is not just one part of his brain where the seizures come from (focal point). There are many "hotspots" where activity can start....


Hope you get the results and they are helpful to his care...
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Old 05-07-2004, 08:23 AM   #7
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kayakmom HB User
Re: Hello, we made it back.....~: )

Since she ordered the renal scans etc I bet it was TUBEROUS SCLEROSIS (TS) which can be genetic. There can be tubers in the brain and kidneys and this causes the epilepsy. Good to rule out all that can be...


The multifocal E is that there is not just one part of his brain where the seizures come from (focal point). There are many "hotspots" where activity can start....


Hope you get the results and they are helpful to his care...
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Old 05-10-2004, 01:49 PM   #8
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Re: Hello, we made it back.....~: )

Hi Jennifer,

I'm glad that things went pretty smooth for you and Gage in PA! My hats off to you girl for doing it on your own!!! I shudder at the thought of not having Daddy with me for most of this stuff even though I know that I could do it...

Fragile X is along the lines of Down's Syndrom - just another area for DNA, genetics to go wrong. We've had that one done on Jake as well. SO so so glad when it all came back negative! I'm holding my breath right there with you on this one girl ...see I'm turning blue from it... LOL

Wish I had more to offer... you are both in my prayers and meditations!

And last night as I'm up for the 2nd time with Jake, I'm wondering if you are up someplace with Gage as well, HOPE NOT, but wondering just the same.

Hang in there Kiddo! We will all get through this!

Need to scoot!

Hugs and love

Lisa and kids

Last edited by LisaGuthrie; 05-10-2004 at 01:57 PM.

 
Old 05-10-2004, 04:34 PM   #9
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gagcas HB User
Re: Hello, we made it back.....~: )

hey lisa,

good to hear from you. im glad they are doing all the bases on this one. cant hurt. you figure thats how we found out about the seizures in the first place right. actually gage hasnt been doing to bad with the getting up at night. maybe for a refill on drink or to fix his covers. and we have noticed that if we ignore his tempers that he seems to settle down fairly decent. but look out if you even say something. starts all over again. lol. so we are doing good so far. hope you are too.

how is jake doing on the diet. any better now that he is feeling well? let me know. will be on and off tomorrow. have the dreaded custody hearing for gage. i wasnt married to his dad and i always assumed that i had the full custody and found out i didnt, even though he lived with me since birth. now it is me, my husband and cassie so i thought i had better get it done. have a good one and ill catch you all later. bye-bye
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Old 05-10-2004, 05:10 PM   #10
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Lisa T HB User
Talking Re: Hello, we made it back.....~: )

Hey Jennifer...(hope I'm not butting in, wanted to wish you luck!)... Good luck tomorrow, hope everything turns out well for you.... so is Gage doing better at night?

Let us know how it went.....
Lisa
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