Abscence Seizures updated 11/13

[amyhughes]

I don't really have much to add as far as what to expect in the parks but from a personal standpoint I have never experienced a problem with any of the flashing lights and I was photosensitive when I was younger. (buzz wasn't built when I was younger, but I still avoid it One thing though my Grandmother always forced me to SLEEP, EAT & DRINK on top of taking my meds at the same time everyday, when we were there so my seizure threshold wasn't lowered.

I just want to say that my epilepsy started out as absence seizures as well, and my thoughts go to you and your daughter.

 

[adisneymama]

Thanks so much. Just waiting for Nov 5th. I'll update what the Neurologist says then.

 

[adisneymama]

Sorry for the cut and paste...

appt went well. he is putting her on medicine that we will start tomorrow, the pharmacy had to order it. It will take a while to get up to the full dose that he wants to try, but in the meantime she has to have an MRI. He didn't state any particular reason, just seemed to be protocall. Once she is on a dosage that we don't notice any more seizures then they will admit her to the hospital for a 24 hr EEG. If it reveals no seizures then she continues on that dosage, if it does reveal seizures then I guess we either increase or add to the current medicine. He also stated she should outgrow these, so that was good news. He also filled out the paperwork for the school and that is getting turned in tomorrow. So all in all a good visit. Other than the MRI, we go back Dec 3rd. He said no restrictions, just a little more supervision and no restrictions for Disney either!!! So that is it in a nutshell. You guys dont know how thankful I am that today is over!

Have a great night!

 

[letthewookiewin]

Thank you for starting this thread adisneymama, I have gotten good advice from it as well .
3 years ago my DS8 was "diagnosed" with ADHD. After trying different medicines, dosages, and generic vs name brand I thought I would never know what was really wrong with him. Then after hearing a girl on America's Next Top Model talk about Asperger's Disorder and an Oprah about Autism, I insisted my DS see a Nuerologist. She did an EEG and MRI because she thought he just had Autism. When she got the result back from the EEG she diagnosed him with Epilepsy, and he is just having the petite mal seizures. We have to get his Epilepsy under control before we can tell if he does have Autism or not.

Like you I am just so thankful that I finally know what is wrong with my DS8, and can finally get him the right help. I mean Epilpesy & Autism I can deal with. It could always be worse, he could grow up to be a Redskins fan. GO COWBOYS!!

 

[SueM in MN]

but in the meantime she has to have an MRI. He didn't state any particular reason, just seemed to be protocall.

It's just sort of 'insurance' to make sure they didn't miss anything.
Back when my DD had her first seizure, they did an MRI. Even though she was already high risk for seizures because she has cerebral palsy.

 

[adisneymama]

LTWW - Glad you have gotten some useful information. G/L for your DS. It is tough not knowing what is wrong.

Sue - Thanks. I just looked at the orders and it is actually a CT scan, though, I don't know the difference. He didn't seem overly concerned at all.
In fact, he was about to discharge us and goes "oh, has she had a ct or mri?, I guess we should do one then." LOL. Waiting now to hear when that will be. Thanks again for all the help!

 

[SueM in MN]

LTWW - Glad you have gotten some useful information. G/L for your DS. It is tough not knowing what is wrong.

Sue - Thanks. I just looked at the orders and it is actually a CT scan, though, I don't know the difference. He didn't seem overly concerned at all.
In fact, he was about to discharge us and goes "oh, has she had a ct or mri?, I guess we should do one then." LOL. Waiting now to hear when that will be. Thanks again for all the help!

CT (also called CAT) scan and MRI do pretty similar things, but they are different technology. MRIs use radio waves and magnets to make the image. CT scans use radiation to make the image.
It probably doesn't matter which she has. CAT scans now are better, more detailed pictures now than they were when my DD had her MRI. The main reasons are that computers have gotten more powerful and the scanners can take more views in one pass over the body. So, a CT scan can often give the doctor the same information as an MRI would.
Here's a link to a good information page about CT scans.

The same site also has a good information page about MRIs of the head.

 

[letthewookiewin]

LTWW - Glad you have gotten some useful information. G/L for your DS. It is tough not knowing what is wrong.

It was very tough not knowing what was really wrong with him. When I made the appt with the Nuerologist my DH told me I was "crazy" and "grasping at straws". I know it's bad of me to do this for a medical diagnosis, but after he called me crazy I just had to do the "na-na-na-na-boo-boo-" dance to my DH. We have gotten over the first 5 doses of the Depakote, and so far he's handling it fine. He just has the munchies all the time. Luckily his school is working with me and is allowing me to pack all the extra snacks he needs.

 

[adisneymama]

So glad you got the answers! DD will have her CT scan Monday afternoon.

Sue - Thanks again! Somehow I knew you would know the difference!

 

[adisneymama]

Just wanted to update that DD had her CT scan today. They said we will probably have the results tomorrow. Thanks again for the thoughts and the prayers!

 

[adisneymama]

Just a quick update. DD had her CT scan yesterday and did great. We got the results this afternoon and they are normal! So we keep on increasing her medicine dosage weekly and continue on with our normal neuro appts, but for now at least we are done with tests! I am so relieved! Thank you all for the thoughts and prayers and all the help along the way!