Hannah had a seizure/HELP!

[lisajean]

Hey all,
Hannah had her first seizure ever this morning. We were watching TV when suddenly her legs went straight out and her whole body started jerking. Her eyes and mouth were closed and she started drooling and foaming at the mouth. She was completely unresponsive. It went on and on. I called 911 and while I was on the phone with them she stopped breathing. Then she started making a horrible noise while her chest was heaving and finally started breathing again. The EMT's arrived as she was regaining consiousness but she was very combative and kept hitting them and screaming if anyone touched her, which of course they had to do. We went to the ER by ambulance and once they got an IV in her and got her some meds she calmed. She remembers watching TV up to the point she started seizing then only small bits after. Labs and head CT all look normal so they sent us home with dilantin and an appt to see a neuro on Monday.
I am so freaked out by this. I thought she was going to die. The scene keeps playing itself over and over in my head right now. What a frickin nightmare.
Any advice on how to get through the weekend. I can't believe they sent her home. I have to go give her the meds and it scares me to death. She is sound asleep thankfully but I have no idea what tonight will bring.
Thanks guys. My first thought was thank god I have Braintalk.
Lisa

[hydromom]

I'm so sorry. Raffi's condition has put me in the state that you are in before and all I can say is "pray and hold on to your Mother's Instinct." If you feel safer at the hospital, then go back until you feel right. I can't comment on the siezures, only your fear....you are not alone. Hopefully some other people will help with the siezures . I felt compelled to respond because I want you to know I understand how you feel.
Hope all is well
Marilou

[Jordan]

Lisa, I'm so sorry. I don't really have any advice for you as (knock on wood) I haven't suffered from seizures but although you're understandably terrified, you acted quickly and she recovered. And at least for now the hospital is alerted to this situation. Just praying for you both that this is a one-off. Poor Hannah...she's had to deal with so much, and you too. I know parents of other children on here have experience with seizures, and the adults too so I'm sure they'll be able to offer you more advice than I can. But I just wanted to let you know I'm thinking of you both.

[Lauren88]

:( :( No experience just HUGS.

May I also suggest you post this on Child Neurology? Many parents on there have kids with lots of experience with seizures and with giving medication (emergency meds and control meds), the different side effects of different meds, knowing when to go to the ER etc. It is important to trust your instincts though - even if you take her and she gets better by the time you get there, it is better to be safe than sorry.

HUGS - I REALLY hope this was a one off...:( :(

[jena1225]

Hi Lisa! I just happed to catch eye of you post, and had to come over here from CP to give you (((((HUGS))))) I hope you went over to Child Neurology and got some advice.

Hang in there and I hope you get some answers!

[kathleenandjoe]

How long did it last total? If it was not status (over 30 minutes) and there is a neuro history - they usually do not admit. Though it was her first. . . and I know how scary that is.

Becca's first was a status and we ended up in the hospital for several days for MRI, EEG and her recovery from Todd's paralysis and post ictal crap. I was glad in hindsight that we were admitted for I was scared really bad.

They loaded Becca with meds to finally stop the seizure, but we opted not to medicate daily. You are not diagnosed with epilepsy unless you have 2 or more in a year. Though the EEG said she was likely to have more with all the spiking and such. . . . we prayed she would not. That it was a freak thing due to a cold she was at the end of at the time. She did not have another until 8 months later. She has epilepsy. Then we did dilantin and switched to tegretol . . . carbatrol . . . shortly after. Been through lots since. Lamictal now.

Seizure meds are awful. Side effects stink and especially at first she will likely be tired (as if she is not already) and dizzy, cranky, just feel weird. This usually evens out over time. Dilantin though is not a great one and is usually just a first med until a decision is made on long term plan to keep seizures at bay if I recall right. It's been a while. Now remember how bad it was . . . the seizure. . . that is worse than med side effects. That is what I tell myself to get through the med game.

With all unknown right now. . . I would go ahead with the dilantin through the weekend. Did they give you any ativan or diastat? I think that is usually for the ones that are longer than 5 minutes or in clusters of short ones. We have a lot of options for seizures at home now. There is really no need to go to the ER unless they last longer than 5 minutes or our med options at home (ativan, diastat, midazaolam (SP?) are not able to stop them past 5 minutes. Scary - but really there is nothing to do for seizures other than to make sure they are stopped and then work with your neuro to control them.

Of course stay with her. Sleep next to her. Do not allow her alone at least throught the weekend.

Record everything - diet, meds, times, sleep. . . just in case you need to eventually look for patterns. I really hope this was just a one-time freak occurance for you though.

I know your fear. It is awful. Seeing your baby seize does make you wonder if they will die or ever be the same after. When Becca's long ones occur. . . that thought still passes through my mind. Sadly, Becca has had so many seizures now that I do not panic like I used to. That makes me a little sad because it's as if I have accepted them and had enough practice. We go to Johns Hopkins for a second opinion on epilepsy surgery for Becca on Monday as we are running out of med options. CNMC in DC thinks she's a good candidate, but we are not having part of her brain taken out based on one opinion.

Any post ictal symptoms other than fatigue? I sure hope not. Sound like a grand mal. Any sickness or threshold lowering things going on?

Hang in there. I hope that an EEG and MRI are done at the very least. Seizures are scary - but know that with the exception of bumps and bruises that may occur during them - they cause moms more pain that the child having them. They do not cause brain damage unless they are uncontrolled and very frequent, etc. And really the only fatal ones are those that go status.

Try to rest. This will be a hard, new road ahead. We are here for you.

Hugs,
Kathleen

[Austinsmom]

{{Hannah}} and Lisa,
My heart goes out to you both:(
Seizures are horrid to watch and hard to go through.
How is Hannah today?
Have you called her Neurosurgeon? if she is still off and you are concern, I would go to the ER at her NS's hospital, explain the new seizure and ask if she can be admitted for test, due to her shunt and other conditions, I am shocked they did not admit her. The seizure you explained is a Grand mal, tonic colonic... the type that will never go out of your mind, and the one with the greatest fear, Austin has those only once in a while, but they freak me out to the point of no return, Austin will stop breathing too, what helps Austin to breath some times is to tilt his chin up after placing him on his side, then he will start breathing 90% of the time.
due to Hannah not having a seizure disorder I think if you have a concern on how she is acting or feeling I would take her in. Also Dilantin is a very strong drug and she may act tired and seizures will cause some of the same reactions so it can be hard to tell if it is medicine or seizure related. Austin has been admitted more times that not with Grand Mals that stop his breathing just to check the shunts, do a EEG and check for infection possibilities. not to help you worry anymore than you already are I have been known to sleep with Austin just to check he is OK through a bad night after a seizure it makes me know he is alright. Austin had one of these about Easter and I am still freaked out that he is at college on his own, My heart goes out to you and all this makes me wonder about the doctors and Hannah’s condition, UC San Francisco Has a program where you get a team of doctors for complicated conditions their seizure program is intense I talked to a neurologist at the Hydro Conf a few years back but you may want to look at that site after having Hannah evaluated by her doctors in your area...
I hate F-ing seizures, not much in this world is harder on a parent, then to watch a bad seizure
Love and Hugs
Deborah

PS Austin will not remember anything of his seizures, for a long time he questioned if they were all that bad, till the last one, that one scared his friends and him L
Sorry this has happen to Hannah L

[CoolAngel28]

Lisa,

I had a status,when I was 8,and was admitted for all the testing,and drugging..They kept me,I think for 4 or 5 days.(I was in the 2nd grade,Mom and Dad were totally freaked out.:( They didn't let me out of their sight for a little over a month. Went back to school 4 days after they released me,for half-days..it was kinda rough.)

The fatigue was so-not-fun,for a kid...:rolleyes: :rolleyes:

{{{HUGS}}}!!!!!

[lisajean]

Thanks All :) ,
First of all Hannah is doing better. No more seizures and she even managed to make her hair appt today (our stylist takes months to get into and there was no way Hannah was canceling...lol. ) She is now completely wiped out, emotional, in terrible pain and overwhelmed. I know part of it is the meds and part of it is post seizure. A lot of it is knowing that she had a major seizure and the uncertainty for the future.
Kathleen, I knew you would have great information. Thanks for all that. Yes, I did think Hannah was going to die. She has been so sick, keeps getting sicker (chronically, not a virus or other trigger) and then out of the blue a full on seizure. I totally freaked out. Thankfully the 911 guy and the paramedics were so fantastic. Still, I will never, ever forget what I saw. Thanks for understanding.
I have no idea how long Hannahs seizure was. It seemed like forever. As soon as I saw her I called 911 and she seized until just before the paramedics got here so maybe 10 minutes, maybe less.
Deborah, no they did not call a NS or even a neuro until I asked them to. The neuro on call was too busy to come in. no word on the NS. I had to call everyone when we got Hannah home. At least her new pcp is awesome and called twice to see how she was doing.
Kristin, sorry you had to go through that. I have a much greater appreciation for anyone who has suffered a seizure and their families. It is just aweful.
Everyone, thanks for supporting me through this. I am still in a state of shock.
I'll let you know how the neuro visit goes on Monday.
much love,
Lisa

[Lauren88]

Hi Lisa

First off, I'm really glad Kathleen in particular has posted, because I know she (sadly) has a lot of experience with seizures. I hope you don't mind but I took the liberty of posting on Child Neurology on your behalf because I know there are a lot of people whose kids have seizures on there, so I thought they might have some info. I checked today (BT has been misbehaving - pages won't load properly - anyone else experienced this?) One of the women, Kathy, has experienced a great decrease in her son's seizures (he has an epilepsy diagnosis amongst other things - hopefully Hannah won't get that far) eliminating things from his diet, like dairy and gluten. She said gluten in particular can contribute majorly to auto-immune probs and there is a good Gluten Sensitivity (may be another name) forum on here that it might be helpful to look at if you do want to try eliminating gluten and see what it does for Hannah. I've never been on the forum myself but I think it's quite active and people can swap recipes etc for gluten-free foods - I get the impression it's not as restrictive as you might think if you know where to shop. I hope you didn't mind me posting on CN on your behalf, but even though I have never had seizures (and with hydro and from what people have said on here, I'm only now starting to realise how lucky I am) I could sense how scared you were and wanted to help.

I'm glad Hannah's doing better though. Good luck on Monday - I hope BT posts this all right - it's really frustrating that pages aren't loading, anybody else had this problem? This place still totally ROCKS though ;)

[lisajean]

Hi Lauren,
Thanks for posting over in CN. I'm having trouble getting to the site but I'll try to get over there to see what they have to say. BTW, Hannah has been gluten free for over a year. She has Celiac disease, as do her sister and I. I was really hoping that going to a gluten free diet would help Hannah but it hasn't seemed to. It just makes life a lot harder :( .
Anyway, thanks for thinking of Hannah.
hugs,
Lisa

[Lauren88]

No problem Lisa - I figured you might be too tired/stressed/busy to do it yourself. Sorry being gluten-free hasn't helped Hannah - I have no experience myself (my diet is WAY limited already although that's self-imposed - need to widen my diet :rolleyes: )

I'm glad Hannah hasn't had anymore seizures though. You might want to post on Child Neurology (or I think there is a Chronic Pain forum - never been on it myself) about her pain - maybe someone might have ideas as to new drugs/strategies you haven't tried yet (if there are any :rolleyes: )

Hugs and still thinking about you - nobody should have to go through this..

[LIZARD]

OMG...:( ((((((((((((((((Lisa))))))))))))))))))) and ((((((((((((((((Hannah)))))))))))))))))). I'm so sorry! I couldn't get BT to load for three freakin' days and just saw this. I'm so glad to hear Hannah is doing better.

I'd get an MRI, too, just to be sure there's no change in her neuro status. CTs can lie; I know from experience.


(((((((((((((((((HUGS))))))))))))))))))))) to you both!

LIZARD :)

[Brandon's Mom]

{{{{{{{{{{{Lisa & Hannah}}}}}}}}}}}}}

Sorry I'm so late to respond to this, I've been missing because I'm dealing with some of my own health issues.

I am SO incredibly sorry that you've had to join the "I HATE SEIZURES CLUB!" but I hope that Hannah doesn't have anymore so that you don't have to be a card carrying member like I've been for years. I don't have any advice or wisdom to impart because although Brandon's had seizures for 16+ years, he has never had a Grand Mal (knock on wood).

If it's not one thing it's another... life just isn't fair to Hannah. :(

[MegNJaxMom]

Sorry it has taken me so long to respond... I saw the post, but then BT froze up on me and I haven't been able to get back.

I truly HATE SEIZURES! I am glad to hear that she is doing ok though... no more. But our experience was much like Becca and Kathleen's. Megs had her first set when she was inpatient for her first shunt infection. I was getting in my holding time feeding her and her hand started. I called the nurse and she had stopped by then, so she stayed and watched. Pretty soon her hand did it again, and then her foot joined. And then we had a 4 hour ride from H3!!. She ended up in the PICU and I was beyond distraught. They doped her up on Pheno (nasty nasty stuff) and when she got her shunt back in we went home and she didn't seize for about 6 months. Then I was home alone with her feeding her supper... my wonderful brother came and helped me. That one also went status and we ended up taking a helicopter ride. We just got back from a wonderful epilepsy clinic in MN. They don't think Megs is a good surgery candidate because she has a couple of foci and it is from scar tissue from her infections. They switched out one med (horrible topamax, made Megan a maniac but we didn't know till she was off of it) to Keppra and Trileptal. We have had good success with that combo, unless Megan is sick. Then the only sign I have that she is ill is a seizure.

All that blah blah blah to say you are in our prayers and I hope and pray she never has one again and that SOMEONE will find a way to help her out of her pain.... She is too young for that!

Heather

[laurensmom]

sending hugs.....