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Newly diagnosed with Seizure Disorder

post #1 of 25
Thread Starter 
I'm looking for help, mamas with similar experiences... something...

Almost 2 weeks ago my perfectly healthy 14 month old daughter had her first seizure. It was not febrile, and was rather "out of the blue". The hospital ran a battery of tests, including a spinal tap(!), CT scan, blood and urine. Everything checked out fine, no abnormalities.

Yesterday, she had TWO seizures within hours of each other, and now we are faced with the diagnosis of "Seizure Disorder". She has been placed on a low dose of phenobarbitol, which will hopefully be enough. We have an appointment in 2 weeks(ahhhh!!!) for an EEG, then we'll be setting up appointments to meet with a pediatric neurologist and for an MRI.

I'm wondering if there's any mamas out there who have "been here done this" kind of thing~ I am obviously pretty freaked out... I know this isn't the end of the world or anything, but it is really scary....
post #2 of 25
BTDT! My son started having seizures right after he turned 2. They were weird in that they were very quick, he just fell down and his legs shaked and he never lost consciousness and was fine as soon as they were over. If you didnt know what you were looking for, you would just think he fell down. So it took us a year to catch them on an EEG to confirm that they were seizures. We had 2 regular EEGs, one 24-hr ambulatory EEG and finally a 3-day in patient video monitoring EEG, which caught them!

DS has been on Lamictal for over a year and does fine. Every now and then we have had to increase the dosage (as he grows) but for the most part, his seizures are 100% controlled.

We have had a couple MRIs as well. At least with those, they are knocked out, so the worst part is the IV insertion.

The EEGs can be OK or terrible, depending on how they do it. I would call ahead and find out EXACTLY how they do the EEG. The first one we had, when DS was 2, they literally strapped him down to the bed (hands and legs and everything taped down) and then attached the electrodes and then made us put him to sleep - strapped on the bed like that! Of course, he was a mess and so were we.

Subsequent EEGs (different place, that specializes in children) attached the electrodes while he was awake (required some creativity on my part to keep him still, but 1000 times better than him being strapped down) and then they allowed me to walk him to sleep. After he was asleep, they attached the wires, etc.

The ambulatory was hard, because he had this huge pack that had to be carried around, so I was literally stuck to being 3 feet from him the whole 24 hours. Exhausting!

So anyway, if you want to PM me, feel free. Good luck. I hope they can control her seizures. Its a scary thing to watch and not be able to stop then!
post #3 of 25
Thread Starter 
Thank you so much for writing so soon! This is so unsettling~~~~

I am so glad you let me know about the EEGs! We are going to a special childrens hospital to have the test, but I will be CERTAIN that they arn't going to strap her down or anything... oh my gosh it would take me a week to get Zoe to sleep like that, and I'm not kidding!

I'm still waiting to get a packet of "what to expect" info from the Children's Hospital... maybe it will describe the procedures, ect... butI will definitely be calling to make sure.

Even in the ER, just getting an IV line in her was an absolute living nightmare, it took three needle sticks and she cried so hard I thought she'd induce another seizure... so stressful!

Thanks again, I'm going to save this thread and may very well be back in touch... it's so nice to know others have dealt with this stuff.

I wish the best for your little guy, too! Thanks again~
post #4 of 25
My daughter has a lot of medical issues including seizures. She has undiagnosed partial complex seizures (which means they know they are seizures but they cannot pin point where in the brain they are originating from). She has 3-5 on an average day and they consist of staring to the right for about 30 seconds followed by repeated head turns to the right for 3-5 minutes.

You might want to check out the epilepsy foundation. They have some really experienced moms there. www.epilepsyfoundation.org

Not to second guess your docs, but in my opinion, phenobarb should not be used longterm in a toddler. It really makes them sleepy and dulls them to the point that they cannot develop well cognitively. It is also very addicting. There are much better meds out there that will not have such profound cognitive side effects. My dd takes Keppra and has had great success on it. She went from 60-100 seizures on a bad day to 3-5 a day. JMO.
post #5 of 25
Thread Starter 
Thank you for your input, Susan... I was absolutely floored to see the initial S/E of the phenobarb on Zoe... it was like she was totally drunk. The Drs. assured me that it would be assimilated and she wouldn't react so strongly. So far, that is proving true...but on someone who's just learning to walk, it's obvious.

But, I TOTALLY agree with you that this is not a drug I want her on for any length of time. I believe they prescribed it as a "first line" so to speak, since it is the oldest and most well known of the anti-seizure meds. We have yet to have all of the diagnostic testing done, and we haven't even seen the neurolgist yet. I am thinking the drug choice will be re-evaluated once we have a clearer picture of what's really happening. At least I hope that's the case, and I will most definitely be talking to the neuro about that.

If you check this thread again, would you possibly know where I might find a list of the available meds and their s/e, ect?

Thanks for the link, I can see where I'll be spending what little free time I have these days...

Best of luck with your daughter, I love her name~ I'm a Reiki practioner!
post #6 of 25
This is the best source I know of for medications used in epilepsy.

post #7 of 25
my ds is 6 yo and was first diagnosed with absence seizures at age 4.5. we decided not to medicate for the first 18 months, as the seizures seemed really not a big problem and the AED's did. He has grown a lot this summer and his seizures have morphed into something different. He has had about 5 over the last month that he is conscious of, and it scares him. So we are kind of back to square 1, with an EEG and an MRI in the next two weeks. He is taking Depakote now, and it is controlling the seizures so far. In terms of side effects we are seeing none. I am glad we gave him a little extra time w/o meds, but I am also grateful for the medication now.

I only know one or two moms of children w/ epilepsy, so this forum is a great help.
post #8 of 25
Our daughter has Tuberous Sclerosis. She started having seizures at around 5 months of age. Hers are Infantile Spasms. You didn't say what type your daughter is having. We did the whole EEG and MRI route. I just nursed her while they put the electrodes on her head. It worked fine for us, but I know they can also sedate them if they need to.

The neuro. put her on Phenobarb the first thing too. I don't like what I've read about it, BUT it didn't matter because she had an allergic reaction to it and we stopped it. She is now on Vigabatrin which is a drug you cannot get here in the US. If you look at the SE on ANY of these drugs, you will not be pleased. They can all cause horrible things. Some people just won't even try them because they don't like what can happen if you take them. BUT, we had no choice in the matter. You MUST take medication if you have Infantile Spasms. Also, every single person is different. You never know what med is going to work. Some people have horrendous results with the same drug that another person might think is a miracle drug. You don't know until you try.

Let us know what happens with the MRI.

OH - also, when we were starting this whole process, our doctor told us that 1% of children have seizures. Many times, a cause is never found. That's actually good - if they find something on the EEG or MRI, then it's worse. Actually, the EEG will most likely show abnormal activity. Hopefully, they won't find anything on the MRI though. Many times, if medicine works at controlling the seizures, you can go off the meds and stay seizure free. Some kids grow out of them. Some seizures abrubtly stop at puberty. Then, some get worse and some kids get different kinds. It's a crazy thing. I really hope that this is something that she will just grow out of.

Let us know how things go and what they find. If you have any questions for me, please feel free to pm me or email me. I don't check everyday, so email is much better as I check that much more often.
post #9 of 25

I don't have a child with a sezuire disorder, but I've taught a couple of them. By chance was your child vaccinated in the month or so before the first seizure?

hope everything improves,

post #10 of 25
Thread Starter 
Thanks everyone, for the responses. Somehow it helps just knowing there are others out there dealing with this...

Mimi~ lots of luck finding what works for your son! It must be so scary for kids to know what's happening yet never know when... I know it would be for me!

Alegna~ Zoe hasn't been vaxxed since around 8 months, when I finally got the courage to say NO to them... so I don't think it's that, but thanks for the idea...

Brandi~ We still don't know what knd of seizures we're looking at. July 7th is the EEG, which on one hand I can't wait for, and on the other, well... I wish it would never come! The info from the Children's Hospital said Zoe couldn't nurse for 3 hours before the test! I wonder why you got to nurse and I won't be able to?! I am definitely going to question that! Zoe is very, very high needs and has literally NEVER fallen asleep(ok, *maybe* once in 15 months?) without nursing!! So, I wonder, how the heck we are going to get her to sleep in a strange place, with electrodes on her head, without nursing. My blood pressure rises just thinking about it.

Since the first few days, the phenobarbital seems to be very well tolerated by her. Everyone says "if you didn't tell me she was on it you'd never know"... but, that doesn't change the fact that she is! I really hope there is a gentler alternative for us.

I had some of the same discussions with my pediatrician about seizures in kids, so I know what you mean about not finding a source for them in the tests. I am praying we don't find anything!

I will post to update once we know anything. Unfortunately, we have to wait for *everything*! First the EEG is ths week, finally, but then it's 2 weeks till we *finally* meet with the neurologist who will then schedule an MRI based on the findings. Sooo, I can't hold my breath, even though I feel like I am.

Thanks so much for your insights~ blessings to you and your little girl... hope one day we'll both leave these seizures behind us!
post #11 of 25
The info from the Children's Hospital said Zoe couldn't nurse for 3 hours before the test!
That doesnt make sense. Even before surgery (ear tubes), DS was allowed to nurse up to 2 hours before being completely sedated. Why on earth would there be a restriction on eating or drinking before a proceedure where sedaation/intubation is not even required? I would question that with as many people as you can until you get an answer you are happy with.
post #12 of 25
Originally Posted by dogberry
The info from the Children's Hospital said Zoe couldn't nurse for 3 hours before the test! I wonder why you got to nurse and I won't be able to?! I am definitely going to question that!
I've never had to do this either. I've actually fed her during EEGs (by tube). The only thing I can think of is that they may give chloral hydrate or something similar if she won't sleep and want the belly empty for that. But as the PP said, usually nursing can be done up to 2 hrs before.
post #13 of 25
i believe there was a report done on 60 minutes last year, we watched it, im pretty sure it was 60 minutes about diet and siezures. a VERY high fat diet. it helped remarkably, ended the seizures in a day, but the diet was hard to follow, lots of cream, fat ect. this child was having a dozen or more siezures a day and none of the meds were helping at this point, the diet stoppped them undtil they tried to go off a year later, eventually years later they were able to take him off the diet, he never got fat. the couple that was interview found a book on it from back in the 50 or something, it was an older theory, unheard of by there doc. it makes sense to me, put extra coating on the live wires so to speak. it was a specific diet, ill try to look on the internet and find the report or book, blessings.
post #14 of 25
Its the ketogenic diet - all fat & protein, no carbs. You can probably find a lot on it if you google "ketogenic & seizures"
post #15 of 25
I don't have a child with a seziure disorder, but my dh has one. I know what it is like. I hope you are finding all the info you need. As for the ketogenic diet, I believe it works, we have researched it alot, and it seems to have a good outcome. Good luck.
post #16 of 25
Just a note on the keto diet...it has to be done under medical supervision and can be extremely dangerous if not done correctly. But it does work for kids/adults whose seizures cannot be controlled by meds. It is a very serious treatment, however, and not a first-line treatment by any stretch of the imagination.

There is another diet that you can try on your own. I haven't tried it so I cannot vouch for it. It is called the Specific Carbohydrate Diet. I know two children who had drastic seizure reduction on it.
post #17 of 25
Thread Starter 
Thanks so much everyone, I really appreciate hearing all of your experiences. Tomorrow is the big day for the EEG. I'm really nervous about it all but can't wait to get it over with. Our appt. is at 8 am, she has to be sleep deprived, so we'll all be getting up at 2 am! Ugh!

Here's my shameless plea for positive energy and good vibes! Thanks again!
post #18 of 25
I am so sorry you are going through this, and I sooooo feel your pain. My 8 month old ds has a seizure disorder. He had his first seizure at 2 weeks of life, but they didn't know what was wrong with him. He actually stopped breathing, turned blue, then turned grey. He was basically gone...he had no heartbeat. My mom performed CPR on him and got him breathing again. They actually told us at the hospital that they thought it was reflux and sent us home with meds for that. It then happened again exactly a week later. This time my mom was not able to get him breathing again with the CPR, and he was still gone when the paramedics got there. They worked on him and got him breathing again. The docs still couldn't figure out what was wrong and sent us home with a different kind of medicine for what they thought was reflux. I began watching him like a hawk and was able to tell immediately when he would turn blue and stop breathing so that we didn't lose him again. But it just kept getting worse. By the time he was 2 months old he was having between 10 and 20 episodes a day. I decided that the people at the hospital I had taken him to didn't have a clue, and I put him in the car and drove to a children's hospital in St. Louis. We spent 10 days there while they did every kind of test they could think of to do. They did tests on his heart, and they did tests for reflux which proved he did NOT have reflux whatsoever. Finally they did an EEG and noticed the seizures. They did an MRI and some other tests and could not determine a cause, so they were ruled to be infantile spasms. He's been on phenobarb since he was 2 months old, and he really doesn't seem to have any side effects from it. His neurologist did tell me though that they would want to put him on a different med when he turns one, b/c toddlers can show reactions to phenobarb that infants don't show. Anyway, his seizures are controlled on the meds, and we go every couple of months to have another EEG done. We actually have one coming up this Friday morning. I'm also not sure why they told you not to feed your little one. I actually feed my ds while they are putting the electrodes on his head to help him relax.
You and your family are in my thoughts. Please let us know how things turn out tomorrow. Feel free to PM me if you want to talk, or have any questions. I know how scary this can be, but I am sure your little one will be just fine!
post #19 of 25
Thread Starter 
Oh, Nora~ thank you for sharing your experience... wow, I cannot believe what you have been through! How completely terrifying~ and at the same time how fabulous that you seem to have them under control!! Zoe never stopped breathing with her seizures, but did start to gray a bit around the mouth and eyes... I have never been so frightened in all my life.

Reflux?? That doesn't give me a whole lot of faith in the medical establishment! So lucky for your babe that you had the inititive to take it on yourself!

I sooooo appreciate hearing your story... I am also glad to hear of another mama who was able to nurse during the procedure. I'm going to print out this thread and bring it with me, I'm just not going to let them tell me I can't. If they want her to sleep, she'll need to nurse. Period!!

How can I wish tomorrow would never come and also be over with at the same time??

Blessings to you and your family! I hope the seizures stay far, far away!
post #20 of 25
Good luck tomorrow Kelly. Sending positive thoughts and sleepy vibes for your little one.
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