Nervous and scared now

[twincedar]

New here and have many questions and fears. Last week on September 2nd my son had a seizure as he was getting ready for school. Around 7:20 am. I heard a horrible thud like something hitting the wall and heard my husband ask him if he was playing. (he is always playing like he's been shot and falling to the floor like he's dying) I then heard two more thuds and my husband started yelling at me to come quick. When I got there my son was sitting on the floor bent over. I took him by the shoulder and pulled him back to see his face, his mouth was bubbling saliva & he tried to speak but it was gibberish. My husband told me later that he found our son face down convulsing on the floor and had got him up. My first thought was diabetic seizure as we have a strong history of diabetes on both sides of the family. I called the paramedics and my son's condition continued to improve to where he was making sense and was moving better although he was very shaky.

We arrived at the emergency room and he was placed in a trauma room and the Dr. came in and began the evaluation. The Dr. decided to do a CT scan and x-ray his hip as my son was complaining about weakness in his right leg. Someone came in and took 4 tubes of blood and they put blood in two bottles that looked like airplane liquor bottles with colored fluid in them. They then started an IV with saline solution. We did the CT scan and then his bed was parked by the x-ray dept. to wait for the other. I was standing by his bed when he started to bow up like his body was drawing and turned away from me. I asked him if somehting was hurting him and pulled his shoulder back to me and as his face turned towards me his eyes were rolled up white, saliva was bubbling out of his mouth with a horrible moan was coming from him. I lost it! I started yelling for a Dr. to come quickly. The came and took his bed back to the trauma room and I could see that he was convulsing at that time. The Dr. said to calm down, he was having a seizure, it was not life threatening and they were taking care of him. He also said if he had another they were going to transfer him to a children's hospital. This was around 10:00 am.They put a shot in his IV and told me it was something to help him sleep. He slept for about 30 minutes and when he awoke had no memory of anything that had happened between the two seizures, although his memory came back later that afternoon. We stayed in the hospital overnight and an MRI and an EEG was also done.

These are some of the things I am wondering, the pediatrician said she thought the seizure could have been caused by low blood sugar. However they took blood before the 2nd seizure and had later told me his blood work was fine. So I don't understand that. Wouldn't low blood sugar have shown up in the blood work results? He has suffered from migraines for awhile and she said it also could have been an atypical migraine but at no time that morning did he say his head was hurting so I don't know about that either. I did notice that the 2nd IV bag they hung was 5% dextrose and 10% potassium if that means anything.

The CT and MRI came back fine but we have not heard from the EEG. It has been over a week and shouldn't we have heard something by now? It makes me wonder that it did not come back normal and they don't want to tell me. We have an appointment with a pediatric neurologist on Sept. 24 and if it is not good maybe they are waiting for him to tell me.

The neurologist that saw him in the hospital said that they did not start medication on the basis of one seizure episode and although he had two that day it was counted as one episode. He said that 10% of people would have a seizure episode at one time in their lives and 94% of them would never have another.

He asked my son if he noticed anything unusual before the seizure and my son said his body felt like pins and needles and then it went numb and also that his right leg felt like it was going to give out on him. My son said as the second seizure started his vision went red and that everything was colored red with a black outline and he couldn't hear anything. He said he could see me speaking but couldn't hear anything. Is any of that similar to anything anyone else has experienced?

He was released from the hospital and the Dr. said to send him back to school the next day. My inclination was not to ever let him out of my sight again. Since this has happened my husband and I feel like we are waiting for the other shoe to drop. I cannot relax am worried all of the time and not sleeping very much for checking on him.

He is 10.5 years old and there is no family history of anything but diabetic seizures in our families. His discharge papers said seizure disorder for the diagnosis.

Sorry for this being so long but I needed to get it out and see if anyone recognized any of these things.

[Bernard]

There are many different potential reasons for people to experience seizures. Low blood sugar is one, but there are many others.

One thing that stood out to me from your post is the headaches. It's quite possible that your son has been experiencing seizure activity for a while, but you (and he) didn't know to recognize them. There are actually many different types of seizures and most people only think about tonic clonics (aka grand mals) when they think about seizures. Headaches are common after effects of seizures.

I'd recommend you read this thread epilepsy 101 for a better understanding of epilepsy and ask your son if he experiences strange taste sensations, spotty/colored vision, etc. that might be indicative of simple partial seizures.

As for the headaches, it might be an indication that your son needs more ionic magnesium in his system. You might try getting him a supplement from your local vitamin store (a multi-vitamin isn't a bad idea either).

[RobinN]

It is a scary time, isn't it? My daughters first two seizures were two years ago at the age of 14. I believe blood sugar and hormones are two of her biggest triggers.

I still don't have the blood sugar theory worked out. My daughter has done fine on a fasting test. Yet a seizure that she had recently it was up to 200 right after.

I have found that migraines are now classified in the seizure family, not in the headache family. My 30 yr history of migraines was cleared up completely with the ionic magnesium that Bernard recommended. It is now one of the minerals that my daughter takes. However, I give her the chelated version.

I hope you find some comfort from CWE. We hold each others hand through the good and bad moments. Take a deep breath, and help your son by gaining knowledge in this awful disorder. You will find that you do not always get the answers that you want when you want them or even correct answers from the conventional medical community. You will need to be your son's advocate and help others to figure out why he is having seizures. Don't jump immediately on the drug rollercoaster unless there are no other alternatives.

I wish you strength during this learning period

[twincedar]

Thanks for replying. I think I just needed to get it all out. I have read much of the information on the site and looking back there may have been times that he had a seizure and at the time I just didn't know what it was. I just hope he never has another bad one or has to go on medication. I guess that is what every parent hopes. It is just so scary watching your child go through this and the uncertainty is nervewracking. I believe we will feel better when we see the neurologist later this month. It is all just so confusing.

[skillefer]

Hi twincedar! Welcome to CWE. I agree with what Bernard said....check out the Epilepsy 101 thread. There's lots of different kinds of seizures. It's not unusual for adults to come here after being diagnosed, read the thread, and find out that those "odd " feelings they had were actually seizures or auras. Personally, I have grand mals. I started having them when I was about 13. I'd been diagnosed when I was 5. My mom always responded to a seizure by getting obviously frightened, and over protective. My dad would respond with a joke, or try to get me to smile. So after a seizure, I would always ask for my dad. Why? Because seeing how bad my mom was scared made me feel guilty for having the seizure. So please be careful how you react to your son's seizure. He's going to notice, and it might effect how he feels about himself. Seizures are NOT the end of the world. I have an advanced degree, as do others here, as well as a wonderful career, and loving family. Have I had to adjust some things or change some dreams? Yes. But I still have dreams, and I still pursue them.

[twincedar]

You are right. I have already found this out. While he was having the 2nd seizure he knew I was screaming at the Drs. That night his Dad asked him who he wanted to stay at the hospital with him and he said both. He said he wanted Mom to stay but he wanted Dad to stay too. He said if something happens, Mom panics and Dad holds your hand. I feel bad about it now but I had never seen anyone have a bad seizure like that before, let alone my only child and it scared me badly. The Dr. also told us that the more we made a big deal of it the more he would. She said your son may never have another seizure and if you make a big deal of it you will have scared him for nothing or you may have a son that will have seizures but he deserves to have a normal life so you need to not make a big deal of it.

[skillefer]

Sounds like you had a good doc. And, I have to agree....watching a seizure can be terrifying. When I was at the university, I was a health aide for my dorm floor. One day, I was over visiting my boyfriends dorm, when someone came pounding on the door and yelling that someone was sick in the bathroom. The health aide for the floor was at classes, so I went into the men room....and sure enough, there was, my boyfriends friend having a seizure in the bathroom stall. I sent someone to call 911 and wait for them downstairs, and I slid under the stall door and sat next to Andy and kept him company. I held his hand, and kept time on my watch. Was it scary to watch? For me, not too much. But then, mine are really frightening from what I've heard.

[Meetz1064]

Ya know, I do have to give parents credit. It's GOT to be horrible, watching your child go through this, and feeling totally helpless....and in some ways hopeless, too.

But then, at the same time, you have to be the adult, and go on, and not overreact, which is HARD. And I can only just BEGIN to IMAGINE how hard.

The doctor's right though. Try not to overreact. It's scary as all get-out, I'm sure. But, your child needs to know that you're going to love him no matter what. Some parents refuse to do that.......I know this for a fact. If it happens again, instead of screaming, try to place yourself in HIS shoes.... and it will be OK.....I promise.

[Shelley]

cared half as much as you do.
Please remember not to panic. I know it is easier said than done, but whatever you do, your son will react and remember accordingly.

[Belinda5000]

Shelley,
I know what you mean my mother could careless.
When I've ended up in the hospital because of my seizures she wouldn't even call me on the phone or call me at home much less when I had surgery.


Belinda

[darkmarkshark]

Did you tell the doctor about the migraines? Oftentimes aura's are mistaken for migraines before epilepsy is diagnoses

[twincedar]

Hi, The Dr. did say she thought it could have been caused by either low blood sugar or could have been an atypical migraine. We really don't have any answers yet or may never have any. We see the neurologist next week and I am hopeful he can shed some light. I did buy him some multi-vitamins and have started giving them to him last Saturday on someon'e recommendation in this forum. Belinda and Shelley, I can't imagine your parents not caring! I know I have been considered overprotective as my husband and I were married 11 years before I conceived and we had our son late. (We are many times mistaken for his grandparents and were at the hospital) To me it was just so scary and I fear for him to go through that again! I hope you both know that the problem of your parents not caring was theirs and nothing you did.

[skillefer]

Well, if it was due to low blood sugar, then at least you can start to work on controlling that....though trying to stop a kid from loving sugary stuff is hard. Still, remember to make sure he always has a protein with any carb he eats.

[skillefer]

Oh! Also, might want to try having him eat 5 times a day...I know, sounds like a lot....but it's really not. You just make the portions smaller and make sure he eats every 2-3 hours...send a note to the school and they'll probably let him eat his snack during class. I'm hypoglycemic and a teacher....so my student's are used to seeing me eat...and I have no issues letting kids eat in class as long as they don't leave a mess and what they're eating isn't obviously bad for them (example: jelly donuts.....*whimper*).

[Shelley]

Yes, Skillefer. 5 or 6 small meals is good for anyone, because of the way our bodies are designed. Great for weight control too.
Twincedar, back in the 50's, there was great fear (I guess) about the lack of knowledge surrounding 'E'. Our pastor was horrible, in saying dumb things about demon possession and other silly stuff.
I was born with complications, not breathing. Stayed in the hospital a while (according to mom).
Still need to write the hospital to see if I can get my medical records, because my parents never trusted me with the news. Guess they were afraid I would tell people of their 'shame'. Yet everyone seemed to be either overprotective, or taunting because I was 'retarded'. Was always threatened with the state hospital (for 'evil' non christian people).
My parents quit drinking after I grew up and left home. Even though they seemed to behaved better toward me, they still treated me weird.
This is my family, as I have no other (not abandonment, they just died).
This is the first place I ever experienced true concern for who I am as a person.
But I still meet people who think it's funny when it comes to flashing lights.
Or get upset, because I drive better than they can.