Anyone had PET or MEG testing?

Laura - posted on 03/28/2010

hehehe hehehe :)

Annette - posted on 03/28/2010

Oh hellya. Can I say that and not get slapped on the hand?

I always joke that it's good thing he is cute..or we would eat him :)

Laura - posted on 03/28/2010

never a dull moment....I think the hardest part of having a kid with seizures is you are ALWAYS ON ALERT......UGGGGGH :)

Annette - posted on 03/28/2010

https://seizuretracker.com/

They are also on FB.

They are the worst. I mean, every little movement, every 'off' look makes you wonder: Was that a seizure.

I swear I am gonna Stroke Out just listening to him play. He drops something and I jump, he coughs and I stand up and go over to him. He must be sick of me by now. It's really bad now that he is having events during the day again. I thought we were passed that but..he likes to keep me on my toes. :)

Laura - posted on 03/28/2010

never heard of the Seizure Tracker......where do you find it? I hate all the meds.....but then I always wonder what's the alternative....even with ketogenic we haven't been able to wean Mason off meds.....he still have tonic/clonic...myoclonic jerks...gelastic seizures....UGGGGH........seizures are the worst.......

Annette - posted on 03/28/2010

LOL, Bug was 4 months when he started rejecting ANY breast milk. But still...he's a breast man.

Bug is doing 150mg. :( Plus 8ml Keppra and 275mg Lamictal. Sigh.

I use Seizure Tracker to keep track of his seizures, just started, it's an online tool. Really cool. Unfortunately.

Laura - posted on 03/28/2010

25 mg twice a day.....6am and 6pm....capsules....I just open them and mix with water and he gets his meds thru his gtube......good luck with the hand down the shirt trick!! Mason was nursed only till about 6 months and he still remembers :)

Annette - posted on 03/28/2010

LOL.

I hear you about finding the boy. I see him in there, but how to get him to come out? I love that he cuddles again and that he smiles at me when I look at him. Getting the hand to stop going down my shirt is gonna be a challenge. :).

How much Zonegran BTW?

Laura - posted on 03/28/2010

Annette......OMG!!!! I had 2 glasses of wine tonite!! I do the same thing can't wait for the kids to go to bed to have a glass of wine now and then.....sit on the internet and research!!!

I hate med changes....Mason changed from clonopin to Zonegran in January.....the first couple weeks weaning him off clonopin was not so fun....but I have seen an improvement with the Zonegran.....more relaxed...less seizures..... I dunno....he just seems like he's in there somewhere if we could just get him to let us know he is.......

Talk soon :) and good luck with everything....it's a tough road :)

Annette - posted on 03/28/2010

Amanda,

Thanks! PCMC in SLC actually teaches Doctors how to use the MEG scanner...they supposedly have the equipment. Haven't confirmed that but I will. :) Bug's seizures are usually less than 30 seconds now, so I don't see how the VNS would help him and what surgery could do but I want to test everything ya know? He has had fluid in his ears for MONTHS now and I read that it can lead to Meningitis that doesn't have the same presentations as regular Meningitis. I hate that I have to do all this reading when some Doctor has already done it and just is lazy.

Laura,

As it sits now, we will be doing a medication change soon. Not looking forward to it, but it's just not working all the way. And with Bug, seizures make him regress so...we need to stop them if we want to meet the real Bug.

Gosh, he practically does a Ketogenic diet on his own. He does not like sugars, he will eat noodles and pizza but he prefers vegetables and Protein to anything else. We did a low sodium diet and it had no effect, which is probably why the Lamictal didn't help him 100% with the seizures. And no worries, I understand what life is like. :)

I think I might start drinking when the kids are asleep.

Laura - posted on 03/28/2010

Annette,



Mason is on keppra, Phenobarbital and zonegran.....he used to be on clonopin........We started the zonegran in Jan 2010 and I have noticed a big decrease in seizures and he just seems to be more relaxed on the new med.....he has been on ketogenic since oct 2009...We started it at Cleveland Clinic.....within 2 days I noticed better tone and decreased seizures...also his infantile spasms have pretty much gone away......the diet is hit or miss though...I have heard plently of parents say yes it has worked for them and then a bunch that say they tried it and it didn't help at all......I am "lucky" due to Mason is 100% gtube fed so all I need to do is fix his Ketocal 4:1 formula every day....I don't know if I could do it if he ate regular food..... I hear it's alot of work that was and tricky to get the kids to eat sometimes........sorry it has taken me so long to respond...been a CRAZY couple weeks in my house!!! Good Luck with everything...I enjoy your posts :)

Amanda - posted on 03/27/2010

Hello,

Don't know how helpful it is, but here's what I know about the PET & MEG. My daughter just had a PET scan this past week as part of a pre-surgical eval to decide if she's a candidate. It's as simple as an MRI, really. We were told the next day that it confirmed the EEG's findings. (For partial seizures)

As for the MEG, we found out last week that there are, as said above, very few MEG scanners (due to costing hundreds of millions to construct) and even fewer available for kids (due to sedation/anesthetics and, again, related financial reasons) and those that are out there are becoming unavailable due to recession/loss of financial support, etc. Insurance often doesn't cover the cost of the scan.

There is also a SPECT scan which involves a tracer injection & scan during a non-seizure time, and another tracer injection & scan during a seizure. When compared, the seizure scan should show increased blood flow in the area where the seizure began. (We can't do this one because her seizures are too short.)

Here's a site that provides a fairly simple overview. http://neuro.wustl.edu/patientcare/clini...

Good luck to you and your little one!

Annette - posted on 03/18/2010

Does Mason get ANY relief from Medications?

Bug would only get minor relief every time we upped his Lamictal. Each jump up was followed by a week or two of no events. Then he started having multiples again, followed by a trip to the ER because he was having back to back 4 minute T/C's ad his breathing was shallow.

They added Keppra. He went two weeks and then started again. I printed out a list of the medications I wanted to try and we added Zonegran. The Zonegran gave a few days to a whole week seizure free until we hit his target dosage. Then he would go a week with only 1 20 second event. By the time we would get to him, he would be coming out of it.

Although, his Doctor is not happy about 3 medications, and we upped him ourselves by a few more mg of Zonegran, he can go days with only one. He has not had clusters, or more than 1 in a 24 hour period in over a month. Some Docs shy away from adding more medication, and I understand that concern, but Bug's liver and kidneys are tested and they are in great working order. And he is using a spoon again, so good for him!

We hesitate on the Ketogenic diet, simply because an additional strain on his kidneys does not seem to be worth it MAYBE helping. Ketosis is a tricky thing. We are going to increase his protein intake to see if he just needs more than he is getting. He seems to gravitate toward proteins, when Nana pushed the chocolate on him, he takes it and then puts it down. Hardly ever eats it. And when I was pregnant with him I only could have meat. Sugars made me puke. I find that really interesting now.

Laura, good luck, I wish only the best for you and Mason! And thanks so much for the info.

Laura - posted on 03/18/2010

Mason isn't a canidate for brain surgery...I had originally gone to Cleveland Clinic with him hoping that they would be able to do brain surgery...his seizures are uncontrolled with meds and ketogenic diet....the seizures are throughout his whole brain...not just one area......from what I understood when Mason had the PET done a couple years ago they use the info from a MRI and PET and intertwine them together........also the MEG scan is very expensive and not many medical centers have the scanner.....I read somewhere that there are only 100 MEG scanners in the world.......someone on here has to know more about it than me and hopefully they will post :)

Annette - posted on 03/18/2010

I think I will ask for a PET. Why wouldn't he do it? Why wouldn't he THINK about doing it? Curious.

Thanks, Laura!

Laura - posted on 03/17/2010

My son had the PET scan done....very easy...electrodes on the head kind of like an EEG.........but not the MEG scan...I have heard they will only do an MEG scan when they are considering you for surgery......