my daughter had a seizure

[jennylynch]

Ok anyone have kids that have seizures?? are they related to Chiari? My daughter had what i almost swear was a stroke today. nothing but her face and arms. her left side was drooping and right side was twitching and she was drooling everywhere and she couldn't talk she was mumbling and crying and then slurring her words as her lips got better... i just wonder what to do. we went to the er and said it was a seizure and to get in with pediatrician. im gonna call the ped and tell em i want her to go to the ns i just got done with.. what the heck is going on can anyone help.

I am so scared i have passed this on to her.. she has been complaining that the back of her neck hurt. and she told me after what they said was a seizure that she fell on the playground on friday and hit her head on a hard pile of snow. so im really worried. she had a ct scan and 3 xrays of her chest. because she was scared she swallowed a bead during the seizure cuz she couldn't remember if she had one in her lips holding it before her seizure. thankfully no bead anywhere lol.. that was her biggest worry. then we had to try and do the fun of explaining actually what had happened to her and she understands the seizure.. do you guys think its related. i have heard that alot of people have chiari and have seizures? what do i do?

[jennylynch]

UPDATE
kiley goes for mri to rule out or diagnose chiari tomorrow. she started out friday now with her eyes crossing and then last night just her left eye is looking down at her nose.. she said its been blurry for about 5 days and of course beign the scared mom i yelled at her telling her she needs to tell me if something is wrong immediatly. i called her Neuro and he said he is worried that in 15 years he has never heard of this with a child with just epilepsy. so i am seriously worried now he told meto keep him updated and call the peditrician on monday morning. im very nerveous for her. i hope she does not have CM also. i could only feel sorry forever knowing that she acquired it from me. now i go back to the ns tuesday, my syp-tmoms from before surgery all all back and worse then before surgery. i am alom ost 4 weeks post op. taking as many max strength percocet as possible with no pain relief at all

[jennylynch]

we went to neuro he is ordering a mri to rule out chiari. but she is on antisezure meds now until we can control them without or she out grows them.. he said if she out grows them because she seems to be a different kind of child....
well duh she is my kid lol

[jennylynch]

I am going to u of m on friday with her. she will be seeing dr. woodruff.. they said she has a form of epilepsy and we will discuss it when we get to the appointment. at this point we have monitors and a intercom and a video baby monitor that has night vision. what else can i do.. i am so over my head anymore. i got my staples out today and the dr is very upset with me that i have not been doing anything i am told. I have not been trying to have low stress. i am not relaxing and i am not on light duty.. how can you be with all i have going on i spent 3 nights and 4 days in the hospital with her and one night with my dad and its just been so crazy. tahnk you all for letting me vent also.. im glad i have you guys for opinions.. im going to be going through some crazy stuff with her yet.. the school has never had any kids with epilepsy so we are having a district meeting monday

[Mazie1209]

Oops,, hit post too soon!
Post op.  Hope ur continuing to improve, and try to take care of urself also, that's important!
Keep us posted!
Im going to u of m ann arbor on monday for another opinion!
Prayers and hugs and positive thoughts!
Mazie

[Mazie1209]

Gosh jenny, so much so soon! Iz ur daughter going to childrens at uofm? If so, they are really good in my opinion! My son had to go there twice, and I know several whose kids went there with great outcomes!
How are you feeling, it sure hasn't been to long post

[selmaS]

  Sending u a hug and prayers <3

Please keep us posted

  "selma"

[jennylynch]

thank you all we are home after the third one. We have a temporary diagnoses til friday when we see the neurologist in ann arbor at the university of michigan. SHe has something called benign rolandic epilepsy. they said she may grow out of it but this is only a temporary diagnoses. I am gonna ask for mri also too make sure no Chiari. But we will find out more friday

[selmaS]

  Never apologize for venting, that is y this forum is here and y most of us r here...we all need to vent to someone that understands....and u have plenty of us here that fit that criteria.

I totally understand ur frustration and overwhelmed at this point in ur own recovery....just take one day at a time and release the steam here when u can.

Keep us posted on ur DD's condition
   "selma"

[jacmurphy]

Hi Jenny,
Your daughters seizure could have been down to the fall and please god it was a once off and will never happen again. Do keep a diary and do let her doctors know what''s going on.
My son has Epilepsy and Chiari. They say it's not connected but his symptoms for both conditions started around the same time. When he's having a seizure one side of his mouth rises abnormally. and then he goes into full Tonic Clonic seizure. But as I said.. your DD's could be a once off seizure. I know of so many people that have a seizure and never have another one.
You are going through such a tough time and I know exactly how you feel. Last year was like the year from hell for our family. My son's illness and my dear Mother's illness.

And I know the feelings of guilt. But you do have to let them go. We have no more choice of passing on Chiari as we do of what size feet are kids will end up having.

Praying for a better year for all of us.
Jackie.

[jennylynch]

thanks even though its so dang hard.. im not even two weeks out of my surgery and my dad had a defibrillator put in the week after my decompression surgery and then he was taken by ambulance to the hospital for collapsing then this today i swear that its never going to get better around here. sorry for venting this last 3 weeks have been a living nightmare around here.

[selmaS]

  Jenny this is not ur fault...no more than it is ur parents fault that u have it....u have to let that go...and know, that since u also have it u r in a position to help her better than if u didn't.

Not saying this is the best thing, but u have to look to the positives, otherwise u will not feel better, this stress will add to ur symptoms and ur DD"s.

Let go...and know u r in a position to help her : )

  "selma"

[jennylynch]

thank you so much i am so dang scared.. and im so mad at myself for even knowing this could be my fault...

[selmaS]

  

  I am so sorry ur DD went thru this and u had to as well as a result....I can tell u that I am aware that seizures do sometimes accompany some with chiari...adults as well as children.

When I was at the NS for my assessment I told the nurse my face felt numb and strange and she said she could see it as my face was drooping...almost like Bells Palsey....

U deff have to let the Drs know about this...keep a log/journal of all the symptoms and how long they last etc....

Hang in there and let us know what the drs have to say.

  "selma"