Starting the seizure journey

[LyLMyssChaos]

My 4 year old son was hospitalized this week due to having 3 seizures within an hour. Here is our brief story so far:

Approximately a month ago, while suffering from an upper respiratory infection and an asthma attack, my son had what we thought at the time was a fainting spell. Originally, the pediatrician thought it was a one time incident of fainting and left it at that. After this week's events, we have been informed that was incorrect, he actually had some sort of seizure.

Now, I will fast forward to this week. We were waiting in line to pick up food when he began complaining of being tired and wanting to be picked up. As a typical mom, I told him that he was ok standing and that it wouldn't be long, when all of a sudden, he seemed to stumble backwards and fell onto the floor. When I went to pick him up, thinking he had just tripped, he was disoriented and seemed to be gasping/gagging. I talked to him for about 30 seconds to a minute and then he seemed to be fairly "normal" again. About 5 minutes later, he asked me to put him down on the ground, so I did. He stood there for a minute or so and then he just slumped to the ground. Again, when I went to pick him up, he was gasping/gagging and his eyes were twitching. As I held him, his whole body shuddered/jerked. I took him immediately to the ER.

Once we arrived at the ER, they took him to an exam room to triage him. When the nurse put the blood pressure cuff on him to take his vitals, he started to go into a full blown tonic clonic grand mal seizure that lasted 3 to 4 minutes(complete with curling up into fetal position and foaming at the mouth.) The nurse called for Ativan, but the seizure had stopped right as they got there with it. He remained postictal for about 30 to 45 minutes afterward, with a few eye flutters during that time. He slept for roughly 4 to 6 hours after the seizures and also developed a fever of 102.5 after the seizure episodes that never returned once he was given tylenol and motrin to break the fever.

He had a CT scan, chest x-ray, blood work, urine analysis, EKG and a lumbar puncture; all of which came back clear. Then the hospital did an EEG (which thankfully he slept through.) The EEG apparently showed signs that he is "prone to seizures" but that was as far as the hospital neurologist took it. He sent us home and told us to "not allow to participate in activities where he could be hurt if he had a seizure and to notify our primary doctor if he has another seizure."

We saw his primary care pediatrician today, which wanted him seen by another neurologist ASAP. He is being seen on Tuesday and my head is swimming with what type of information to expect or to even ask for when he sees this doctor. There is a family history of childhood seizures (my sister had them from the age of 4/5 until her teen years but they were triggered by an accidental fall.) And a doctor previously thought I had absence seizures on and off for a year about 5 years ago after I suffered a TIA and complicated migraines with stroke-like phenomena.

I am open to any and all advice/comments anyone wants to give in this instance and with any luck, I will find some answers for my little boy, soon.

[Nakamova]

Hi LyLMyssChaos, welcome to CWE!

I'm so sorry for the scary stuff going on with your son, and I send a big hug to you and your family. We have a number of parents as members, and I am hoping some of them will chime in soon. You can also read their posts in the forum called The Nursery.

I agree with the pediatrician that seeing another neurologist is a good idea. Is the neurologist a pediatric neurologist? That can be a plus. He will probably review the existing tests and clinical information, and perhaps schedule an additional EEG. At this visit he may or may not discuss treatment options; he may also want to wait and see.

Infections can lower seizure threshold, and may have played a role in triggering your son's seizure. For some kids seizures are the result of issues with nutrient absorption. This may or may not be a factor for your son, but you should consider asking the neurologist about testing for this possibility.

I know witnessing the seizure must have been very tough for you. I can tell you from the point of view of someone who has tonic clonic seizures that they tend to look much worse than they are. Being unconscious during them means no pain and no pain or fear during the actual event.

I hope you get reassuring info from the appointment on Tuesday. Please keep us posted and feel free to check in here with additional questions.

Best,
Nakamova

[mlbandura]

I am so very sorry to hear about your sons seizures. My son was also 4 when he had his first one. I am so glad your pediatrician has you seeing another neurologist.

I know with Luke they took him and did and 24 Hour Video EEG, MRI and blood work. I would take enough things to keep your son occupied for the visit. Also, any information you can give them about the seizures he had will help them a lot, how long they lasted, what did he do, movements, blinking anything you can think of (basically what you wrote here). Of course document anymore that he has. I wrote it all down so I wouldn't forget anything. It might be best to take all the test and reports from the hospital visit with you too and your family history. I agree with Nakamova, ask for tests that could rule certain deficiencies out. Write down any questions you have for the neurologist prior to going that way you don't get side tracked and forget anything. (of course I am very OCD about doctors visits, can you tell?)

Good Luck with the appointment and please let us know how he is doing.

-Michelle

[LyLMyssChaos]

Thanks everyone for the suggestions. I find the connection between gluten and seizures interesting. We found out my oldest child is gluten intolerant in October of last year and she has been on a gluten free diet ever since. My middle child has Asperger's and Sensory Processing issues, so I was really hoping my youngest would be my "normal child." No such luck, it appears.

The neurologist is supposed to be a very well respected one in our area. Their website claims to be "one of the top practices in the midwest." So I am hoping he is in good hands. My ped. was NOT happy with the hospital neurologist whom basically said "kids have seizures, they could happen once a day, once a year, there is no telling" and told us to "eat healthy and just keep him away from things that he could be hurt if he were to have a seizure while doing it." I know that we may never find a cause or be able to predict them, but I certainly want more information on what to do than "just try to keep him safe."

[Nakamova]

There does seem to be a connection between gluten sensitivity and seizures. I hope the neurologist is willing to take that into account when discussing treatments. Some links with more info about the connection are below:

http://query.nytimes.com/gst/fullpag...eizures&st=cse
http://www.ncbi.nlm.nih.gov/pubmed/17122729
http://www.ncbi.nlm.nih.gov/pubmed/15737700

There's a lot of interesting info here as well:
http://dogtorj.tripod.com/id99.html

[mlbandura]

What an ignorant ER doctor! The first time we took Luke in they said he was having abdominal pains and sent us on our merry way. His excuse was there was not enough of a family history for it. Some drs are so uneducated when it comes to seizures. Thank goodness for your pediatrician!

As far as the Gluten goes I just started Luke on a Gluten free diet a little over a week ago. It is to early to tell if it will help any but I am hopeful. I figure there is not hurt in cutting it out of his diet. We are also in the process switching his meds too so right now it is really hard to tell. Another thing his dr said was to try to cut out all artificial dyes out of his diet. Hopefully with this and the supplements he is taking we can start to get things under control.

I do hope this appt will answer some of your questions that you have. I know how hard all of this is and just want to offer you and your little boy a giant hug!

[Endless]

LylMyssChaos,

Welcome to the forum! I'm very glad you found us.

I am SO DISGUSTED with the emergency room and that awful neurologist. Hmmmf. 'Nuff said.

I am very happy you have an appointment with the new neurologist. You can request a copy of the actual eeg from the hospital, if they haven't disposed of it by now. With the new electronic EEG recording, they should still have a digital copy of it. This is different than the interpretation or report. It is the actual EEG tracing/brain wave patterns. You can send it ahead of time to the new neurologist's office, so he has time to look at it.

You might also want to request a copy of all test results, and the chart notes, from his ER visit. Forward the test results to the new Neurologist, and read through the chart notes yourself. The chart notes may be some very interesting reading - I'm curious what the doc put in writing about the seizures, and if he was just as dismissive on paper as he was with you.

I'm also glad to see you have found The Nursery. In the forum you'll find lots of parents of children with epilepsy.

[LyLMyssChaos]

Thanks for the tips everyone! I will call first thing tomorrow morning to get a copy of everything. I too am curious as to how he discussed things in his report. Everyone I have talked to tells me it is odd he would go from no seizures ever to a full blown tonic clonic.

[RobinN]

The quality of his nutritional needs and sensitivities to processed foods can be showing up at this age as well.

[Texasirish]

Thanks for the tips everyone! I will call first thing tomorrow morning to get a copy of everything. I too am curious as to how he discussed things in his report. Everyone I have talked to tells me it is odd he would go from no seizures ever to a full blown tonic clonic.

Want to give you a big ole hug from a big old Texan and a little hug for the small one! Make sure you get all the supporting documents for yourself to start building your personal record of events. Ask all the questions you want to know while your at the appointment and bring back the results for all of us to help you with. You will find guidance and support from everyone her!

[ajax]

I sure wish I could offer something omnipotently comforting and reassuring. Yours is the hardest position of all- caring for someone you love who is struggling with seizures. My heart goes out to you.

I think your pediatrician is right that you should see a neurologist as soon as possible. If you aren't satisfied, don't give up. Take your son to an epileptologist. I highly, highly recommend seeing a specialist. Some of the neurologists I've been to have been shockingly dense in their treatment and understanding of seizure disorders.

Also, starting a diary as soon as possible to document dietary and other variables can prove to be paramount in determining your son's triggers. There are some good ones available for free online- Epilepsy.com has one and there's another you can google called seizure tracker. It's a great thing to bring to Dr's appointments too to give them a clearer picture.

I'm glad you found this forum. There are some wonderful, incredibly knowledgeable people here.

I hope you find some answers and don't fret too much in the meantime. Kids are resilient, but contrary to the neurologist on call, no kid deserves seizures. Keep fighting. It's gonna be okay!

[LyLMyssChaos]

Thanks so much for the kind words and advice everyone.

I feel 100 times better after this doctor's appointment. She read to us what the EEG showed and apparently he had high waves in both the central brain and temporal lobe on both sides of his brain. She said that she wants further testing so he is going to back in two weeks to have an MRI and extended EEG, both while under sedation. The doctor also prescribed Diastat and said if he has a seizure that lasts longer than 3 minutes we are to administer it. She also said that although he could be medicated as a result of his EEG, she wants to wait until he either has another seizure(at which time he will be put on meds) or until we see what the next round of testing shows. The doctor was great about answering all of our questions and giving us a clearer picture of his condition.

My son was given the all clear to return to school once we have the proper paperwork and procedures in place.

[Nakamova]

That's great! That all sounds very positive.

[LyLMyssChaos]

My 4 year old just had another tonic clonic seizure this afternoon, bringing his count up to 5 confirmed seizures since January. The neurologist was supposed to do an EEG and MRI on the 15th, but now has decided to see him tomorrow for the EEG and to start him on meds. Any advice/tips on meds? I have taken topamax myself, but other than that, I have no experience with this field of medicines.

[Nakamova]

Every person reacts differently, so I would say ask the neurologist a lot of questions about the particular med he recommends. Why he recommends it over any other med, what potential side effects are, what you should watch out for, how long it will take to see if it's working, alternative meds of this one doesn't work, etc.

I hope the EEG and meeting with the neurologist go well. Let us know!

[Wobblez]

Sorry to hear about your son LMC, it must be so distressing for a parent to watch. I was diagnosed at 3 and I remember the look on my mum's face when I had one of my first big seizures a few years later. I was playing with my cousin on the 3rd storey of our house (massive house in england) and I started drooling and my mouth was twitching. My cousin held my hand and led me down 3 flights of stairs to my mum. I thought you might appreciate this story because my cousin was only about 7 and showed so much support and maturity. I was scared and embarrassed but she kept me calm and safe. Kids can be great =)

Reading all this is actually pulling at my heart strings but as another member has said, it's actually worse for you as an onlooker than your son. I am unconscious for my big seizures and I have the most peaceful dreams while i'm out! It's like i've slept for years! I wake up very exhausted, very heavy and often confused but with my mum talking to me and comforting me, I soon learnt as a child not to fear the seizures. I'm sure you're little boy will be fine. Good luck.

[LyLMyssChaos]

Thanks again everyone.

Well, the EEG today didn't show anything out of the ordinary (which the neurologist said is actually a good thing) but since he had a seizure yesterday, she still is putting him on medication. I am not aware of the name of it yet (I am picking it up this afternoon.) The neurologist said that it was the "least toxic" of available meds and she is putting him on a super low dose (1 ml twice a day for the first week, then 2 ml twice a day thereafter.) She is still doing the MRI on Tuesday, wants labs run in 3 weeks and will see him again in a month unless he continues to have seizures.

I am not all that frightened about it and we have really tried to keep a positive outlook on it. He doesn't remember the seizures when they happen and actually discusses it in a way that tells us he sees it as no big deal. To hear him talk about his seizures you'd think he was talking about a runny nose (which tbh I love!)

[LyLMyssChaos]

Ok, we have his meds now and he is taking Oxcarbazepine (generic Trileptal.) The neurologist said she will up the doses if needed and if we aren't seeing any improvement, she may explore putting him on actual Trileptal or other meds.

[LyLMyssChaos]

I was talking to a friend last night, going over my son's recent developments and I realized the following: 4 out of 5 of his seizures occurred in the same time frame (between 11 am and 1 pm) and all of them happened on the same day of the week. His abnormal EEG was done between 10am and 1 pm, while the EEG that was "normal" was over by 10:30.

I have no idea what this means about anything, but it's something I'll fill the doctor in about anyway.

[LyLMyssChaos]

Throw my theory out the window....he had a seizure last night and one this morning. The oncall neurologist had us up his dose of Oxcarbazepine to 5ml every 12 hours instead of 1ml. Hopefully that helps.