Need some information on seizures

[Niffercoo]

I'm not sure where to begin. Austin had an episode at the pool 2 weeks ago where he blanked out for 5 minutes or so. We thought it was a concussion and he was transported to the ER. There was no bump on his head, and he cannot remember what happened.

 

The pediatrician recommended that we have an EEG to check for absence seizures. We did that this morning. We were sent home and were told that we'd get results in 3 business days. By the time we got home from the hospital, the pediatrician was calling. The neurologist had already looked at the EEG, seen seizure activity, and called our ped.

 

Austin was put on Depakote, and we had to go immediately to get baseline bloodwork drawn. We have to see the neurologist (our appt. is set for September 10th), and the neuro will order an MRI.

 

To say I'm overwhelmed and scared to death is an understatement. I can't believe Austin is having seizures! And I'm terrified to have him be on medication. He only takes melatonin (1/2 mg.) to help him sleep. Can he still take that? Should I have Reece tested for seizures, too? This can't be happening.

[JFSinIL]

All my kids have been on Depakote at one time or another - one 16-yr- old has been on it over 11 years! Do Not Panic - take a deep breath - have chocolate.

When you go to the neuro ask about Carnitor as a supplement - my kid takes it (it is prescription only) to protect the liver from the Depakote.

[Stacy in NJ]

No informations, just...:grouphug:

[katalaska]

I don't know a lot about seizures, but what I've been reading on medical causes of autism lately (in a new book, Autism and its medical management : a guide for parents and professionals / Michael G. Chez.) which was recommended here on the boards, seizures and autism do sometimes go together.

 

I've asked our pediatrician if absence seizures could be why my not-autistic-but-we-don't-know-what-it-is dd can be so spacey, why she misses language and social cues, etc.

 

If I were you, I'd definitely ask the pediatrician about getting Reece tested, too.

 

Lots of :grouphug: to you all.

[JFSinIL]

I don't know a lot about seizures, but what I've been reading on medical causes of autism lately (in a new book, Autism and its medical management : a guide for parents and professionals / Michael G. Chez.) which was recommended here on the boards, seizures and autism do sometimes go together.

 

I've asked our pediatrician if absence seizures could be why my not-autistic-but-we-don't-know-what-it-is dd can be so spacey, why she misses language and social cues, etc.

 

If I were you, I'd definitely ask the pediatrician about getting Reece tested, too.

 

Lots of :grouphug: to you all.

 

I recommended that book, me, me - Chez was my kids neuro until the traitor left Illinois for California. :-(

 

My one kid (16) who I call autistic here is actually Landau-Kleffner Syndrome Variant according to Chez. Depakote and Prednisone are core treatments. LKSV presents as absence seizures, loss of language or not developing past a certain point, CAPD, and for some kids night terrors/broken sleep.

 

Another of my kids, a dd, had mild CAPD and unclear speech. Depakote cleared up her overnight EEG and when her brain functioned better her language improved.

 

All kids are different, though.

[Ottakee]

Sorry to hear about your scare. It is GOOD though that you are getting some good help right away.

 

My girls both have seizures. They are both on Lamictal and one is also on Tegretol XR. The meds have also helped their learning, language skills, social stuff, etc. as well---12dd has some aspie characteristics at times.

 

Just in case they don't tell you, it is important to do the Depakote blood test 12 hours AFTER his last dose and BEFORE the next dose---so basically first thing in the morning. It can be a pain to time the trips to the lab---try to get there 11 1/2 hours after his last dose to give you time to register, wait, etc. It doesn't have to be EXACTLY 12 hours but close for best results.

 

Another positive---the diagnosis of seizures might open doors for programs like Children's Special Health Care services which is from the health department. They can help with mileage, co-pays (they give you medicaid), etc. Also, many insurances will pay for OT, PT, and speech under the diagnosis of seizures when they won't for Aspergers.

 

My 12dd takes Melatonin with the neuro's blessing along with her Lamictal and Tegretol but I dont know about Depakote--just ask the doctor. It could also be that some of the sleep problems were/are seizure related.

 

Keep us posted. Just to let you know--many times dosage changes are needed, a different med might need to be tried, or a combo of meds is used. Just watch for any negative side effects from the Depakote if there are any and report them to the doctor.

 

I would also say no swimming until you see the neuro---except possibly under VERY VERY close adult supervision.

[luna]

My heart goes out to you as you struggle to take in all this information. My dd 12 had her first seizure just before she turned 2. I was stunned, shocked and scared to death (I found her in bed unconscious without knowing why). I am happy to say she has outgrown her seizures and has been off meds (tegretol then carbitrol) for over 5 years. You were wise to take your son to the hospital immediately. Pat yourself on the back for being so in tune with him. He is now getting the help he needs because of you. I would not give the melatonin until you get the okay from the neuro. I have never given it to my daughter, though she continues to have sleep issues. She was on medication for so long I can't bear to give her anything now, unless absolutely necessary. We have tried meditation and prayer to help with the sleeping.

Anyway, I just wanted to offer some mild comfort and tell you that you are doing a wonderful job getting this all sorted out. Keep a notebook of everything you are told and jot down questions as they come up. I know how exhausting it is to worry and wait. You will be in my prayers.

Katherine

[Quiver0f10]

My son started having seizures in March and we, too, were scared to death. He is on Lamictal now and I second the recomendation on getting blood levels tested. I also agree that I wouldn't give any other meds until you spoke with the neuro and OKed it with him first.

 

I know this is scary ! :grouphug:

[EKS]

(((Niffercoo)))

[Niffercoo]

Thanks everyone for the replies. I'm still really in shock about everything. I appreciate your help. Austin started the meds this morning, and I'm watching him carefully. I'll try to update after his appointment with the neuro.

[Ottakee]

Try to keep a little log/checklist for him. Monitor--eating (more or less), sleep (more or less), mood, behavior, cognitive skills, any staring spells, signs of seizures, etc. At his age, he can help you out a great deal with how he feels as well.

 

I mention this as different kids respond to different meds in various ways. My 12dd takes Tegretol and it has really helped with her processing and speech but when a friend of mine had her dd on it, her dd had trouble thinking and processing clearly. Flip side, one med is great for one child but makes mine very irritable.

 

When you see the neurologist you can go over what you are seeing with the meds---the good and the bad and they can help you figure out if this is the right med and if so, if the dose is right. I would also ask for liver function tests with Depakote as rarely a child will have liver trouble on it.

 

I really don't mean to scare you but the more information you have for the doctor the better it is.

[SkateLeft]

I recommended that book, me, me - Chez was my kids neuro until the traitor left Illinois for California. :-(

 

Dr. Chez is now one of my son's two neuros here in CA. Small world!

 

For the OP, no advice, but :grouphug: I know how scary this can be.

[asta]

Some miscellaneous weird info for ya:

 

Make sure kiddo is drinking adequate amounts of water. Even though depakote is a liver, not kidney drug, it just helps keep the ol' electrolytes in check.

 

Not that kiddo is probably drinking it in the first place, but stay away from soda pop - particularly around medication time. The carbonation in soda causes a gastric release that can cause the medication to bypass the stomach and go straight to the intestines before fully dissolving into the bloodstream. (this goes for all medications, not just anti-convulsants)

 

Taking it with food really makes a difference in how kiddo's belly will feel. Depakote is a harsh drug, and it will sit like a lump on an empty stomach. If, even after eating, kiddo's tummy still isn't tolerating it, there are these things called "sprinkle caps" that the doc can prescribe instead. They are capsules that you open up and stir into pudding or applesauce or whatever. They don't taste like anything and don't hurt the tummy.

 

If you start noticing a dramatic weight gain (not just 5 pounds), go back to the doc and have kiddo's glucose tested. Depakote can (but doesn't always) mess with glucose metabolism. The docs can give a med called Metformin to straighten it out.

 

Deep breaths. You're doing great.

 

 

asta

[Niffercoo]

Y'all are really, really scaring me about this medication. Is there anything out there that is safer and doesn't have so many potentially bad side effects?

 

I'm trying to hang in there, but it's scary, and reading these posts is scaring me even more!

[newbie]

All I can say is I am so sorry you have to go through this. Seeing it from the other end is horrible.

 

My mom is epileptic, I grew up w/it all my life, hers got real bad when I was 12, b/c parents split. She was having a lot and on horrible heavy meds, during that time, I was caretaker, I would help w/seizures and help give meds.

 

She used to get real embarrased, b/c she would black out. It became second nature to me. She did stop having seizures with my lil brothers birth, I think she was thirty seven. Must have been hormones, they started at sixteen.

 

The worst is its genetic and skips a generation. I am praying for you. I can really feel your pain.:grouphug:

[luna]

Y'all are really, really scaring me about this medication. Is there anything out there that is safer and doesn't have so many potentially bad side effects?

 

I'm trying to hang in there, but it's scary, and reading these posts is scaring me even more!

Sometimes too much information is a bad thing. I believe in educating yourself and being aware, but at some point you have to trust the doctors and yourself. Perhaps it's time to take some notes to share with the doctors. If they are good, they will ease some of your worries. If your gut tells you something isn't right, go for a second opinion. It so hard to sort out genuine intuitive "knowing" and pure anxiety. I was fortunate to have a wonderful doctor for my daughter. Even so, there are things I questioned and doubted. We all do the best we can for our children. If reading here, or anywhere, is causing you too much worry, stop reading for a bit and try to absorb what is truly useful. An anxious mom isn't helpful to anyone. Blessings and peace to you.

[asta]

Don't be afraid. Seriously. If I had refused to take all of the medications offered to me based on what *could* have happened, I'd have been dead -- not from the side effects, but from my seizures.

 

Depakote is the #1 prima donna medication for generalized seizures, and the one that is approved for use in pediatrics. Unless and until a doc knows that absence seizures are the ONLY type a kid is having, it is the drug to take. The only other reasonable option is a drug called Ethosuximide, which is exclusively used for pediatric absence seizures.

 

Like the previous poster said, sometimes, you just have to take a deep breath and go with the word of the doc. Believe it or not, they can actually tell what type of seizure a person is having just by looking at the discharges on the EEG and listening to the description given (either by the parent or by the patient). It is pretty amazing science.

 

 

asta