 Loading
|
Take control of your epilepsy and seizures. Seizure management has never been easier.
TAKE CONTROL TODAY
My 2yr old had a seizures for the 1st time two weeks ago. It did not present like a typical seizure. He stop breathing then started to posture. When he came to he did now know where I was and I was right beside him. He had several of them. Took him to ER had blood test and CT scan. Everything was normal. Then went to the seizure clinic at the Childrens hospital. The doc wanted him to have an EEG and MRI. We just got the EEG results back and they are not the best. It shows that he is very likely to have more seizures. They said that as he was falling asleep it showed that he had spikes in his brain waves as he started to sleep and more as he was sleeping. We have the MRI tomorrow. Praying for good results. He already has had a rough year. He had to have a jaw destraction surgery and just got the tituim rods taken out last month. Plus GI scopes last week. I am praying for my little guy to have a normal life. Since he has been born its one issue after another.
My question is, since alot of the seizure type activity from the EEG was when he was falling asleep, does that mean that he could have seizures while he is sleeping we not know it? If he stopped breathing with the 1st, it scares the crap out of me that he would have another and not be able to start breathing again. I have not slept since this all happened. Not much at least. Seizures do not run in our family and this has never been a factor for him or even a thought.
If anyone knows anything about this PLEASE help. We dont have another appt with his neuro doc till the MRI is done and has been read. But in the meantime I'm going crazy. I just want him to be ok.
Thank you for any imput
Recent Comments on this Discussion
Hi, I am a nurse practitioner. My daughter started having seizures at 2. She is now 28. Her daughter (my grand-daughter) started having seizures at 2 also. She is now 7. My daughters started as petit mal, then grand mal seizures started at 14. Going through puberty can either make them better or worse. Worse for her. My grand-daughter has petit mal seizures. This is a common seizure type that starts at this age. Good news is that they can outgrow these types. Both of their MRI's and CAT scans were normal, which is common. EEG is where you get the most information. You may want to find out what type of seizure your son had. You can ask the doctor and then research the type. I first noticed my daughters grand mal seizure when she was sleeping. During the EEG for both "my kids" they had seizures while sleeping. This is VERY common for people with epilepsy. You usually "do nothing" during a seizure (besides protecting the head and such) so they are usually OK. Your son may have had one or more seizures during sleep without you knowing at all. Don't stay up all night worried, because you may never get any sleep! Many patients seem to quit breathing during a seizure, but many are still able to get some air in and out during a seizure. It is still scary for me, even after all this time (and being a nurse at that). I hold her and pray that she is breathing and will be over soon. One minute seems like 30. Also, if your son starts on medication, it may take a while for the drs to get the right medication and dose for your son. My daughter has been on about 8 different meds in the last 25 years. She has always had some seizures while on medication. In my experience people who have "just one" seizure usually have normal EEG's. It is very likely your son may have more (I'm sorry), but would like you to be prepared. Hopefully I will be wrong and he will remain seizure free!!!Sorry if this was all over the place. Trying to say alot in a short amount of time. I'll check in, so feel free to ask away!! Good luck to your family!!
Thank you lilynurse! You gave great info. His MRI and CAT scan were normal also. Just the EEG was bad. As far as we know its only been the one night of them. And he had several in a row. But your right he could be having more in his sleep and we not know it. I have talked to the neuro nurse and the doc and I think we are going to wait on meds till we witness more. He is already on so many other meds (more than any 2yr old should be) really dont want to start something else till we know for sure. Glad you told me about the puburity thing, that has been on my mind but in the back, cause he is only 2. But so much changes in a kids body during that time. I hope there are no more. But I have the feeling that there will be. I am getting mixed answers from doc and nurse about the EEG. It should very prone/likely for more seizures. So I dont know how to really take that. Right now we are just letting him be a kid. Play and have fun. He is finally done with all his surgerys for now and he is healed so we are just letting him be a 2yr old. If you know more about the EEG please let me know. I cant find a clear cut answer about it. Thanks for your time and input. And good luck to you and your girls!!
Hi,
At the beginning of my daughters seizures, I was nervous that my daughter would have a seizure in the middle of the night and I wouldnt know. I fought insurance company, doctor and anyone else involved in making the decision but I finally got a sleep monitor for my daughter.
I definately slept with a piece of mind that if anything happened, I would know. However, the monitor went off all the time because it would keep getting disconnected.
Although I was up many time throughout the night to fix the machine, I knew that if anything happened I would know about it.
We are in the works for the monitor. Thanks. And The good thing is that his MRI is normal. So the EEG was bad. So we just have to sit and wait to see if he has more. than we will start with meds if needed. But we are looking forward for the first time in almost 3yrs him being a normal kid. I am praying no more docs for awhile. he has had enough surgerys and scopes done this year alone than most people have in a lifetime.
Also I would like to know, the EEG showed "likely to have more seizures" does this mean we are just sitting ducks till another one happens? Are there things that anyone can suggest to prevent or help. I know that meds are not going to be given till the results of the MRI if they are needed. But what if the MRI is normal and he has more. I am finding a lot of great info on this website but at the sametime getting frustrated cause there are so many things that could be going on with him.
Any info or suggestions would be great! Thanks
First thing, CALL THE DOCTOR. Your question about him having one in his sleep and not breathing is serious and the doctor deserves to be called.
The one thing about pediatric doctors is that they treat the child and the parents, like it or not. You have enough fear to worry about, and don't need this hanging over your head. Call-- there are breathing monitors that they use for children with sleep apnea maybe you could get one, at least for a little while so you can get some sleep.
That said, my dd, who does not have epilepsy, but had bad asthma attacks at night while sleeping never needed a monitor because my husband and I took turns watching her. We both were able to "sleep" next to her and wake up at the slights odd breathing. It wasn't the best sleep but it was a little better than no sleep at all.
My son, who is not 5, has epilepsy and he started when he was two. You are lucky that they took it seriously after the first one. When we had the first one they told us anyone can have one, go home. Call us when he has another. There is a history of epilepsy in my family so I was VERY unhappy with that reaction. My son only had two in his life. April of 2007 and July 2007. He went on lamictal in Aug of 2007, and just ended it in May of 2010. We are now watching and waiting to see if he'll have another now that he is off the medication.
Remember lots of children out grow seizures so it may get better. Son just woke up from his nap, got to run.
My son had obstructive apnea and was on montiors at night and O2 and cpap. But with the jaw surgery he is breathing great at night now so he no longer needs it. But I am really concerned cause I know nothing about seizures (or very little). We are lucky to have a great group of docs, but I feel I'm left with more questions than answers.
Thank you for your reply. Good luck with your son and staying seizure free and med free
does your son have any allergies that you know of? certain foods or weather can trigger seizures too.