So my daughter has had seizures since 3 months old.
when she was first diagnosed they told me she had left temperal lobe seizures..she was put on meds and was seizure free for 2 eyars. they weaned her off the meds and BAM more seizures. but instead of body twitching, now it was staring and facial twitching. i was told by her old neuro in ohio she had " non convulsive gerneralized epilepsy" i was never told WHAT KIND of seizrues.
well she had an EEG on wednesday and we got lots of seizures recorded. and the new neuro today told me she is have absence seizurs, adn the meds she is currently on, arent for absence seizures which could be why we couldnt get them controlled. she can have LOTS every day, like a hundred or even a couple hundred on bad days if she is sick.
we are getting another MRI done to see WHY her seizures changed from temperal lobe seizures to generalized " full brain". she said it was very unusual for that to happen.
my daughter also has gene deletions on her chromosme 7 and she has extra repeats on one of her X chromosomes, and it could even possibly be autism.. but she really thinks it ISNT, but there is always that chance.
SO FINALLLY after 4.5 years, im getting answers and more tests done instead of some doctor DRUGGING my daughter. the new neuro told me her dose of seizure meds is way too much for her little body. So she is starting a new medicne that is for absence siezures, and she said i should notice a big drop in seizures in just a few days. Im so happy. My duaghter cannot live the quality of life i want her too, she is missing alot of her day, because of all her seizures and thats why she is so delayed.
This was Emmalynn on Wendesday when we did her EEG.
and this what a seizure looks like on and EEG... you can see all the big squiggles and thats the actual seizure.
PLEASE PLEASE either pray or send us vibes or anything that this helps my daughter... my heart breaks for her and i just wish i could take her place every day.
Prayers for you both <3 :(
Poor baby,, this breaks my heart. I am sending lots of positive vibes for both of you.
Quoting .Colleen.:" Poor kid :( I'm glad you are starting to get some help for her."
thanks.. im just gald that i got to see a different doctor and get a different outlook..
she was super suprised by the meds she is on now, because they arent for absensce sezures and this is the kind of seizrues she has had since she was 2. so it baffles me that the doctors didnt put her on the right medicine..
she said she thinkgs its because the seizures siwthced what part of the brain they were coming from.
Aw, that picture breaks my heart! Glad you are finally getting some answers, and I pray you get it all sorted out and controlled.
My niece had absence seizures, but started growing out of them a couple years ago (she's 16 now). I'm not sure exactly what caused hers though, I'd have to ask my SIL.
Oh that picture makes me want to cry :cry: I'm so glad you're finally getting answers! praying!
This just broke my heart, I am so sorry your poor little girl has to deal with this :( Prayers for you both. I'm glad you are starting to get answers and hopefully they can get the seizures under control <3
I am sooo sorry. I developed epilepsy from head trauma at age 15 , I couldn't imagine having to deal with it as a baby/child. *hugs* You are both strong.
Quoting KristaAnne:" I am sooo sorry. I developed epilepsy from head trauma at age 15 , I couldn't imagine having to deal with it as a baby/child. *hugs* You are both strong. "
thanks momma. i was told she is pretty young to have the absence seizures, but hopefully we can control them, she get sher first dose of the new medicne today.
Poor sweet girl, I hate that she has had to suffer and be delayed and i'm so happy you are getting answers! I hate it when doctors drug kids and give them high doses...i'm so glad you saw a specialist and they noticed how high her doses were and now you can give her the correct medicine for the specific seizures she has. I'm praying for ya'll hun.
Quoting ☮ Phuket:" thanks momma. i was told she is pretty young to have the absence seizures, but hopefully we can control them, she get sher first dose of the new medicne today."
I hope the meds work for her! I know how hard it is to switch meds. it took them ..11-12 years to get a med that worked for me!
Prayers for both of you! Glad you are getting some answers!!!
Quoting .Colleen.:" Do you think the seizure type really changed or were they going on a wrong diagnosis?"
they really changed. its in her records, she can look back at her old EEGs she had as a baby.. and different meds are given for seizures in the different parts of the brain, and when she started having full brain seizrues again, the dr put her on her old meicine for temp. lobe seizures and it made them 5 times worse than they were.
they think it has to do with her choromosome gene deletion and even possible austism, even though she doesnt have typical symotoms. idk we are still working on finding a real digansosis.. she said chromosome 7 is related to seizrues and austism.. we will see..
chris and i are getting a genetic test done to see if either of us ahve the gene deletion either.
I read on your page about how she has deletions of chromosome pair 7. DH and I got a diagnosis for our 3 year old last June from a Geneticist. She has a microdeletion of one of the chromosomes in pair 15 and just that tiny microdeletion delays her a lot. I read in the booklet they gave me on that specific microdeletion that studies done showed a lot of people with it, also had seizures. Have they mentioned the deletions being connected with the seizures or maybe the cause of them? I read there is a lot more going on though with the repeats of the x chromosome and all, I sure hope ya'll can keep working and get it under control seizure wise ...looks like ya'll are getting off to a great start with lowering them to what was it, 10-15 rather than 100's! Good luck again, lady.
Quoting ☮ Phuket:" they really changed. its in her records, she can look back at her old EEGs she had as a baby.. and ... [snip!] ... we will see.. chris and i are getting a genetic test done to see if either of us ahve the gene deletion either. "
I see now where you said they have told you it is probably connected, lol you beat me to it.