sorry this is so long! looking for answers/advice

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I'm new here and came looking for answers and guidance.

Here's our story:
My son, now 13 months old, started having seizures in September. The first one started just 4 days after a well visit where he was put on antibiotics for a cough he had. I can't recall right now, but I think he also had a vaccination that day. My memory is a little fuzzy, but I'm going to ask his doctor tomorrow.
Anyway, 4 days later he had a seizure while with my parents. Paramedics were called and he was fine by the time they got there. they convinced my mom that she had overreacted and he was just tired.

Two days later it happened again. I called for paramedics once again and he was taken to the hospital by ambulance. Once there he was his usual self. They sent us home with a prescription for Keppra (sp?) a few doses of Diastat, and followup appointments for an MRI and EEG.

We weren't home 20 minutes when it happened again. We called for paramedics again and we were back at the hospital for the second time in the same day. This time the ER doctor was extremely rude. He was clearly irritated that we had come back and said to me "your child has a seizure disorder. go home and deal with it".
ummm.. what???? Deal with it?? with ZERO tests or answers?? It's not like I have a clue about this. I'm not a doctor. This is all new and extremely scary.

So, home we went. This time after just 10 minutes home it happened AGAIN! I happen to be on the phone with a friend who is a neonatologist. He felt he needed to be admitted to the hospital and have the MRI and EEG done inpatient. Since the ambulance would not take us out of county we dropped everything and rushed to another hospital on our own while our doctor friend called ahead to his friend and got us admitted before we arrived.

We stayed for 4 nights. While there they performed an MRI which came back pretty much normal. The only thing they said was that his ventricals were on the large side, but still in the normal range. Shortly after this result came in on day 2 he had a fever spike. They packed him in ice and gave fever reducer then rushed him for a spinal tap. Meningitis was ruled out.
At this point they felt this was a febrile seizure.

We stayed inpatient a few more days and went home. We followed up a few weeks later with an EEG and then a neurology appointment. The EEG did not go well. The tech who did the test was not easy to work with. I was supposed to get my then 11 month old to sleep in the middle of the day for the test. The tech was on the loud side while sitting in the room. At one point opening the door and carrying on a conversation with someone at the door. When I finally had my son asleep I waved him over. He said he wanted to wait a bit longer to make sure he would be asleep. He waited another 30 minutes! My son takes naps that usually only last an hour.

So, he started attaching the sensors. and with each sensor he held the tape dispenser over my sons face and ripped the tape off. Really, who could keep sleeping through this? He woke up with 1/2 a head done.
The tech then had me keep him still to get the 20 minute test completed. I had him watching sesame street on my phone and keeping him still was very difficult.

The EEG came back normal...but...is a test under these circumstances accurate?

We were to followup with neurologist in January, but today he had a seizure again. We were at a birthday party this morning and he tipped over on a kid push car landing on his face. Five minutes later I saw the seizure started. I gave him the diastat. He had a few seconds where he turned blue in the lips and cheeks. The seizure lasted a couple of minutes. Paramedics took him to the ER and said he had about a 20 second seizure while in the ambulance. I'm not sure it's related, but he had a flu shot on Monday.

In the ER today they did a cat scan to make sure he didn't have any trauma from his fall. Everything looks normal. We were sent home to follow up with his doctors. Then again tonight after dinner it happened again. I gave him another diastat dose. Not sure what the limit is on diastat, need to find out. He also seemed to not be feeling well and had a fever tonight. The last seizure happened about 45 minutes after I gave him advil.

It's almost 3am and I'm scared to go to bed. I had him sleeping in his stroller in front of me in the living room so I could watch him. After the seizure he slept about 4 hours. It was already his usual bed time and he typically sleeps 10-12 hours a night. I woke him up to give him a bottle he missed and make sure he was still his usual self. Other than being tired he seemed to be his usual self.

We have an appointment with his regular pediatrician in the morning and I will be calling for the neurologist appointment in the morning too. Sorry this is so long and thank you if you made it this far.

I feel so alone in this. Friends and family mean well, but they don't understand and I don't expect them to. My husband seems to want to just not deal with this. He just says... it's must be because he has a fever. It's common. He's fine now. He'll be fine. I'm sure this is just how he is coping with it, but that method doesn't work for me. It feels awful to not even be able to share my concerns with his other parent. Very isolating feeling.

I'm scared to go to sleep. Scared to not watch him every second. I have my alarm set for every 3 hours to check his temp, yet I haven't made it to bed yet. I have an AngelCare monitor on his bed which helps a little and I'm sitting here watching him sleep on the video monitor. Some how I got through this phase once before, but right now I'm at a lose on how to cope. I do need sleep so I'm going to try.
 
I feel so sorry for you having to work so hard for the well being of your son, but even if i don't know much as a 16 year old, i am sure people here can and will help you out as much as possible :) I wish your son and your family a healthy, happy and a peaceful life, and i'll be looking forward to your son's recovery.
 
Bless your heart...

1st. I would report the Dr. who said for you to just deal with your baby having seizures. I have done this more than once.
I had E. as a child and my parents couldn't deal with it. I was diag. when I was 18, my husband got me to a dr.

There are many types of seizures, and we all react diff. to the diff. meds.
There are many triggers and again we all react diff. to diff. triggers.
Some of the triggers are lack of sleep, fatigue, stress, infection, some foods. There are more.
Have you started keeping diary, recording seizure, length of time , time of day, ANY thing out of the normal such as sickness, any new meds. even over the counter.

I pray you will get some answers soon for you and your baby.
 
Keep fighting for your son!
Sadly with Epilepsy, the medical profession is VERY lacking.
We are our best advocates; so for your son, YOU are the best person to take care of him. My advice to you is to educate yourself on the subject-read this site up & down.
And follow your instinct.
Here is a link to a good thread on here: but there are many.
http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/

There's another thread in the Kitchen sub-forum called Sunshine & Seizures that might be worth your while. Good luck to you and your son!
 
What a nightmare.
My heart goes out to you as you struggle to get answers.
You are the voice for your son and you are being so strong.
 
Hi momto2, welcome to CWE!

The EEG came back normal...but...is a test under these circumstances accurate?
Click to expand...
Even under perfect circumstances, an EEG isn't always accurate. It can miss seizures that are too transient, or that originate too deep in the brain. And with kids it can be even trickier.

He had a few seconds where he turned blue in the lips and cheeks.
Click to expand...
While it looks worrisome, this is actually "normal" during a seizure -- it's a sign that oxygen has been sent to the brain (and away from the extremities) to help out during the seizure.

Not sure what the limit is on diastat, need to find out.
Click to expand...
Treatment with diazepam rectal gel should be given no more than every 5 days, and no more than 5 times per month.

I hope you are able to get a referral soon to a pediatric neurologist, someone who can give your son's health the attention and care he deserves. The seizures may be related to fever, or to the antibiotics/vaccines, but that doesn't make them any less worrisome. it would be great to rule out anything else contributing to his lowered seizure threshold, and you certainly don't want the seizures to become a regular occurrence. If you can, make notes about of all the details surrounding the times of his seizures: Dietary and sleep habits, any illnesses or infections, vaccines, medications, activities, etc. The information can be helpful to the doctor, and also for potentially identifying any triggers.

I hope you are able to get some sleep, and prompt help from the docs tomorrow.

Best,
Nakamova
 
HUGS!!!!!! and welcome. I had tears in my eyes reading you post as it brought back so many memories of the journey I am also on with our almost 2yr old. Keep going looking for answers. We have been on a search for answers with our little man since he was just over 7 months old. I was first told by a GP he was just a difficult child, it hadn't been a seziure and I needed a break from him! As you can imagine I felt like such a bad mum. He had repeated small seizures in front of another GP around 10 days later and I burst into tears in her office. She said it's OK we will help him and I said no I had tears of happiness that now someone would believe me. Since then I have been filming as many of his events as possible. He has been in hospitalt several times we have changed to a private Nureologist after being told we had to keep going back through the ED and I was so sick of explaining his story over and over again and worried I would leave something out. He has had 5 EEG's all but the last came back clear. The last showed a slight slowing of his brain on the back right side and on a few EEG's the girl doing the test has seen his eye's roll up with the flashing lights but his brain wave didn't alter. His nureo even thought he would outgrow it at 1 and then put him on meds after seeing one lot of footage as he realised we hadn't been over dramatising his event's. He is now on Tegretol which has helped a lot, allowed him to be able to interact most times as a normal toddler, but he still has strange event's and things happen. Thankfully his Nureo said just to be safe we will do an MRI when he's 18months but he said he doubted it would find anything. The MRI did show he has a lesion on his putamen which they are not sure what it is but it could be what is causing his strange event's and behaviours, but we were told it may not be they can't really say. Our little man is back for his 2nd MRI on the 18th Jan to see if the lesion has altered and to see if they can tell us more about what type of lesion it is and his Nureo said we will then reassess his med's after that and if anything else needs or can be done. Even if the lesion has not altered we have been told he will need to have MRI's until he is 10yrs old without the lesion altering for him to be given the all clear with it. His event's have altered and his condition has affected our whole family but my little man's smile makes us realise its a condition not his whole life. In the next just over a month he has a sleep study, MRI, plus see's 4 more speciliasts why they try and work out what is happening. I know sometimes i think I am over reacting but each time I do he does something which makes me realise I have to keep looking. His grand father refuses to acknowledge he has an issue even after he had a seizure on Christmas day right in front of them, he said no he was just leaning back so I know what you mean re people understanding and so I am very happy that I joined this forum with people who are or who have gone through what I am as they are the ones who truly understand.
I hope you are able to find help re controlling your sons seizures and they are able to give you some answers soon.
Take Care.
Donna
 
donnajane said:
HUGS!!!!!! and welcome. I had tears in my eyes reading you post as it brought back so many memories of the journey I am also on with our almost 2yr old. Keep going looking for answers. We have been on a search for answers with our little man since he was just over 7 months old. I was first told by a GP he was just a difficult child, it hadn't been a seziure and I needed a break from him! As you can imagine I felt like such a bad mum. He had repeated small seizures in front of another GP around 10 days later and I burst into tears in her office. She said it's OK we will help him and I said no I had tears of happiness that now someone would believe me. Since then I have been filming as many of his events as possible. He has been in hospitalt several times we have changed to a private Nureologist after being told we had to keep going back through the ED and I was so sick of explaining his story over and over again and worried I would leave something out. He has had 5 EEG's all but the last came back clear. The last showed a slight slowing of his brain on the back right side and on a few EEG's the girl doing the test has seen his eye's roll up with the flashing lights but his brain wave didn't alter. His nureo even thought he would outgrow it at 1 and then put him on meds after seeing one lot of footage as he realised we hadn't been over dramatising his event's. He is now on Tegretol which has helped a lot, allowed him to be able to interact most times as a normal toddler, but he still has strange event's and things happen. Thankfully his Nureo said just to be safe we will do an MRI when he's 18months but he said he doubted it would find anything. The MRI did show he has a lesion on his putamen which they are not sure what it is but it could be what is causing his strange event's and behaviours, but we were told it may not be they can't really say. Our little man is back for his 2nd MRI on the 18th Jan to see if the lesion has altered and to see if they can tell us more about what type of lesion it is and his Nureo said we will then reassess his med's after that and if anything else needs or can be done. Even if the lesion has not altered we have been told he will need to have MRI's until he is 10yrs old without the lesion altering for him to be given the all clear with it. His event's have altered and his condition has affected our whole family but my little man's smile makes us realise its a condition not his whole life. In the next just over a month he has a sleep study, MRI, plus see's 4 more speciliasts why they try and work out what is happening. I know sometimes i think I am over reacting but each time I do he does something which makes me realise I have to keep looking. His grand father refuses to acknowledge he has an issue even after he had a seizure on Christmas day right in front of them, he said no he was just leaning back so I know what you mean re people understanding and so I am very happy that I joined this forum with people who are or who have gone through what I am as they are the ones who truly understand.
I hope you are able to find help re controlling your sons seizures and they are able to give you some answers soon.
Take Care.
Donna
Click to expand...

Thank you, Donna. I hope you also get answers for your son as well. My husband has said similar things as your sons grand father. After the second seizure and we were in the hospital he asked me if maybe I was mistaken. I assured him without a doubt there was NO mistake. He had even held him during part of it when I went to put clothes on before the paramedics arrived! The third seizure, which was just a few hours later, I could see he was panicked. But here we are 3 1/2 months later and he's questioning again if he really had a seizure. We were at a birthday party where my friends husband is a paramedic and he took over. He had no doubt what was happening, but my husband still doubts. Really denial is more more like it. I get it. I don't want this to be happening to my baby either, but it is and it's my job to handle it.

It's so hard to find time to read this forum with a 1 and 3 year old. I try to get some reading done when they're awake, but it's nearly impossible and I don't want to ignore them either. Such a balancing act. So here I am up at almost 2:30am doing laundry and finally getting some time online. This seems to be my every other day pattern. I spend one day catching up on sleep and one day missing sleep. Need to learn to balance this out too.

My heart sank a bit when you said the EEG was normal until the 5th one. Yikes, I thought we were in the clear on that. At least that is what I want to believe. I find myself afraid to look at him at times. If the thought of a seizure crosses my mind that is. It's a denial thing I think. If I didn't see it, it didn't happen.

I started using my evernote app to log his meds and anything else I think is important. I can also take pictures and include them right there with my notes. There is no doubt he is fighting a fever right now. I'm so angry at myself that I didn't catch it sooner. 3 1/2 months with no seizure, we made it through being sick in December with no seizure and I think I got lazy or too confident.

He's following the same pattern as when the first seizure happened. Quick spiking fevers that start rising again as soon as the meds wear off. It lasted two weeks in September. Luckily keeping the fevers down stopped the seizures last time, at least I think they did. So, right now I'd doing meds every three hours until his temp normalizes.

I feel so guilty that I'm spending so much time worrying about him. I feel like my daughter who is 3 is feeling badly. I'm constantly having to keep watch over her and make sure she's being gentle with him and not bumping him when he's trying to walk. I'm afraid she'll knock him over and he'll bump his head again. I feel horrible for scolding her when she's just being a normal 3 year old and she doesn't understand why I've suddenly become paranoid about them playing together like they usually do. I don't want to create any resentment either. Tomorrow I will make a better effort to be calm and explain things instead of scolding her.

Found out today his neurologist is out on medical leave. We have an appointment to see another doctor in the department. At first I wasn't happy about that, but changed my mind. It's an easy way to get another opinion.

I'm not even sure what to do when the next seizure happens. Do we call paramedics again? Is that what other people do? Every time? or just get through it and let your regular doctor know? Really going to the ER every time doesn't make sense, except this last time because of his fall on his head. I want to call paramedics just to get his vitals checked and to have them on the way incase it's worse than it first seems. Not necessarily to be dragged to the ER again where everything seems to happened in slow motion. I just don't know what is the normal thing to do?

Anyway, time to give him his meds and check his temp again. Then I need to get some sleep. Both kids have music class in the morning and I plan to take them and try to get things back to normal.
 
Hope you got some sleep last night. I also have a 3yr old and a 5yr old so I can relate to what its like. I often get mothers guilt over my older 2 wondering if I am spending enough time with them. I have also become quite worried when they play with our youngest. He had a longer absence event a few months ago while playing next to the sand pit. I watched in horror as my eldest 2 kids through sand at his face laughing. I raced over to find his mouth and eye's covered in sand so you can imagine how distressed he was when he "came back". We have since gotten rid of the sand pit, we were thinking about doing it anyway but this made it happen. Once I had cleaned up my youngest and put him to bed, slept for 3hrs after seziure, I had to sit down with my 3yr old and 5yr old and explain to them why mummy got so upset and we talked about what there little brother would normally do if they through sand at him and how he had been "different" today. They used the word sick which I thought was fine.
When my youngest goes into one of his states he can be quite rough and my 3yr old is to frightened to sit next to him the side by side pram when he is like this and he has left my 5yr old with little bruises down his arm from being in the car next to him when he is like this.
I often think no its not happening myself but then others comment or I video him for awhile and see no it really is happening. I think we are becomming very use to his events and behaviours as I sometimes don't notice things until it's pointed out to me.
My husband is good but doesn't really like talking about our youngests issues so this forum has been fantastic for me. But now I think he is finnally starting to except there is an issue. I know things are bad if my husband comments on how our son has been for the day.
Re going to the ER etc We only went twice, once for his reflux when around 5 1/2 months old (since found out it was proably seziures) then once just over 7 months. His paed and Nureo have both said unless it goes for 5 minutes or longer or they are being continually repeated there is nothing much that can be done straight away. If concerned his nureo has given me his email which goes directly to his phone and so has his paed. It has been reassuring to get an email back with an couple of hours if I am worried. His GP also has told receptionists that they are to "make" room for him if I ring up and need to see someone straight away. What I have found important is that I have become the collection centre for all of his specialists making sure they are all kept up to date with each other as they are spread over 3 hospitals.
I keep a brief daily journal and for night have purchased a "security" video camera for his room which is set on motion detect so records around 1 sec after motion is detected, it misses the initial seziure/event but still gives us an idea of what is happening. I use to record footage of his whole night and watch it back but with 3 kids and working I had no time, this way it makes it a lot quicker. The great thing with the camera is I can check what is happening on either my computer or phone without having to race down to his room when I hear strange sounds which are often him having an event over night. Now I simply watch, see that he is OK and resettles himself then I do the same or if needed I go down to help him resettle. This camera has given both my husband and I a lot of comfort and better quality sleep. Having footage has also helped me see the development of my little boy and how far he has come. It reminds me that at 11 1/2 months he made a huge effort to start "crawling" dragging the left side of his body now a year on he is walking well, a bit differently but still strongly and you can not tell he use to not be able to use his left arm or leg very much.
Sorry for the long post. Have to go now as off to sleep study tomorrow night and still editing together some footage of what he does overnight they asked for.
Take Care.
Donna
 
donnajane said:
Hope you got some sleep last night. I also have a 3yr old and a 5yr old so I can relate to what its like. I often get mothers guilt over my older 2 wondering if I am spending enough time with them. I have also become quite worried when they play with our youngest. He had a longer absence event a few months ago while playing next to the sand pit. I watched in horror as my eldest 2 kids through sand at his face laughing. I raced over to find his mouth and eye's covered in sand so you can imagine how distressed he was when he "came back". We have since gotten rid of the sand pit, we were thinking about doing it anyway but this made it happen. Once I had cleaned up my youngest and put him to bed, slept for 3hrs after seziure, I had to sit down with my 3yr old and 5yr old and explain to them why mummy got so upset and we talked about what there little brother would normally do if they through sand at him and how he had been "different" today. They used the word sick which I thought was fine.
When my youngest goes into one of his states he can be quite rough and my 3yr old is to frightened to sit next to him the side by side pram when he is like this and he has left my 5yr old with little bruises down his arm from being in the car next to him when he is like this.
I often think no its not happening myself but then others comment or I video him for awhile and see no it really is happening. I think we are becomming very use to his events and behaviours as I sometimes don't notice things until it's pointed out to me.
My husband is good but doesn't really like talking about our youngests issues so this forum has been fantastic for me. But now I think he is finnally starting to except there is an issue. I know things are bad if my husband comments on how our son has been for the day.
Re going to the ER etc We only went twice, once for his reflux when around 5 1/2 months old (since found out it was proably seziures) then once just over 7 months. His paed and Nureo have both said unless it goes for 5 minutes or longer or they are being continually repeated there is nothing much that can be done straight away. If concerned his nureo has given me his email which goes directly to his phone and so has his paed. It has been reassuring to get an email back with an couple of hours if I am worried. His GP also has told receptionists that they are to "make" room for him if I ring up and need to see someone straight away. What I have found important is that I have become the collection centre for all of his specialists making sure they are all kept up to date with each other as they are spread over 3 hospitals.
I keep a brief daily journal and for night have purchased a "security" video camera for his room which is set on motion detect so records around 1 sec after motion is detected, it misses the initial seziure/event but still gives us an idea of what is happening. I use to record footage of his whole night and watch it back but with 3 kids and working I had no time, this way it makes it a lot quicker. The great thing with the camera is I can check what is happening on either my computer or phone without having to race down to his room when I hear strange sounds which are often him having an event over night. Now I simply watch, see that he is OK and resettles himself then I do the same or if needed I go down to help him resettle. This camera has given both my husband and I a lot of comfort and better quality sleep. Having footage has also helped me see the development of my little boy and how far he has come. It reminds me that at 11 1/2 months he made a huge effort to start "crawling" dragging the left side of his body now a year on he is walking well, a bit differently but still strongly and you can not tell he use to not be able to use his left arm or leg very much.
Sorry for the long post. Have to go now as off to sleep study tomorrow night and still editing together some footage of what he does overnight they asked for.
Take Care.
Donna
Click to expand...

Hi Donna,

Sounds like you're dealing with quite a lot. Thank you for taking time to respond here. How did his sleep study go?

Great Idea about the motion recording camera. I have a regular baby video monitor, but it doesn't record. I'm up so late most nights that there's not many hours that I'm actually asleep when he's asleep...usually. I have been wondering if he's had any seizures during sleep, however. So far he's had just 8 total that I know of.

I feel lost with the medical part of this. Like I'm not getting enough information from his doctors, but maybe there just isn't more information to get. I wonder if they're just telling me that they think he'll grow out of it in a few years to keep me from bugging them to fix him.

I want to cry, but since this started I've only broken down once. In the hospital when I told a doctor I was scared and he asked "what are you scared of?". To say out loud all the fears I was feeling was very hard. Of course I am very aware that many other parents are living with much more difficult situations and I feel guilty for that as well.

We are at the library today and I saw a book for kids about people in wheel chairs. Made me wonder if there were any children's books about kids with seizures. something I will be looking into. My 3 year old is doing so well with her little brother, but I don't want her to worry either. Every time we see a fire truck or ambulance she asks if they're coming to pickup baby. He's really started walking a lot more and of course falling too. She asks if we're taking him to the doctor when he trips from walking. Just another part of the journey I suppose.

Trying to read some and learn something new every day.
 
Sorry you had to join the epilepsy parent club. Some random thoughts:
  • Your son only has non-convulsive seizures?
  • You should contact your ER department director and report that first ER doc
  • If you have a choice in the doctor you see an epileptologist should be better than a neurologist and the pediatric form of either is obviously preferred. It sounds like you've already seen a neurologist? A good neurologist should welcome all of your questions and help you become part of the solution. If you're not completely happy with your neurologist by all means get a second opinion.
  • The general consensus is that vaccinations and flu shots can cause a fever, which if you're kid is prone to febrile seizures means they can indirectly cause a seizure, but they don't cause epilepsy.
  • I think the online epilepsy forums are skewed towards the more severe cases of epilepsy. Those with mild/easily controlled cases of epilepsy aren't as likely to spend large amount of times on the epilepsy forums. Therefore you're likely to read about a lot of difficult to control epilepsy online. However that's not usually the case. Odds are your son will outgrow this or simply need to pop a pill to keep his seizures away. One frustrating thing with epilepsy is that there are few concrete black and white answers. It's all about playing the odds, but the odds are in your favor that your son's epilepsy won't be bad.
  • Sleeping is good for you, but it's easier said than done when you're worrying about your baby silently having a seizure. A baby video monitor with the volume cranked up is what we initially used, but we've since moved on to using a hospital grade Pulse Oximeter on my daughter whenever she sleeps. Since her O2 drops and heart rate raises whenever she has a seizure this works as an effective seizure alarm for us. There are also seizure alarm mats your son could sleep on, but I believe they'll only detect convulsive seizures (which my daughter doesn't usually have). Other parents simply sleep with their kids to detect their seizures.
  • Fingertip pulseOxs are cheap, but can be tough to get to work on little fingers. You couldn't use one overnight, but during his daytime seizures if you can get a fingertip pulseox to work that will give you an idea what his vitals do while he has a seizure.
  • Blue lips and cheeks are scary, but the real indicator of if he's in trouble is to look at his gums. If his gums lose color then you're in trouble. Simply rubbing his chest and tummy can help stimulate breathing.
  • I have a document of epilepsy tips online, but I can't post links so I'll try to message you with it. It's geared towards Dravet Syndrome (a craptacular form of epilepsy), but a lot of it is applicable to epilepsy in general.
 
jimj said:
Sorry you had to join the epilepsy parent club. Some random thoughts:
  • Your son only has non-convulsive seizures?
  • You should contact your ER department director and report that first ER doc
  • If you have a choice in the doctor you see an epileptologist should be better than a neurologist and the pediatric form of either is obviously preferred. It sounds like you've already seen a neurologist? A good neurologist should welcome all of your questions and help you become part of the solution. If you're not completely happy with your neurologist by all means get a second opinion.
  • The general consensus is that vaccinations and flu shots can cause a fever, which if you're kid is prone to febrile seizures means they can indirectly cause a seizure, but they don't cause epilepsy.
  • I think the online epilepsy forums are skewed towards the more severe cases of epilepsy. Those with mild/easily controlled cases of epilepsy aren't as likely to spend large amount of times on the epilepsy forums. Therefore you're likely to read about a lot of difficult to control epilepsy online. However that's not usually the case. Odds are your son will outgrow this or simply need to pop a pill to keep his seizures away. One frustrating thing with epilepsy is that there are few concrete black and white answers. It's all about playing the odds, but the odds are in your favor that your son's epilepsy won't be bad.
  • Sleeping is good for you, but it's easier said than done when you're worrying about your baby silently having a seizure. A baby video monitor with the volume cranked up is what we initially used, but we've since moved on to using a hospital grade Pulse Oximeter on my daughter whenever she sleeps. Since her O2 drops and heart rate raises whenever she has a seizure this works as an effective seizure alarm for us. There are also seizure alarm mats your son could sleep on, but I believe they'll only detect convulsive seizures (which my daughter doesn't usually have). Other parents simply sleep with their kids to detect their seizures.
  • Fingertip pulseOxs are cheap, but can be tough to get to work on little fingers. You couldn't use one overnight, but during his daytime seizures if you can get a fingertip pulseox to work that will give you an idea what his vitals do while he has a seizure.
  • Blue lips and cheeks are scary, but the real indicator of if he's in trouble is to look at his gums. If his gums lose color then you're in trouble. Simply rubbing his chest and tummy can help stimulate breathing.
  • I have a document of epilepsy tips online, but I can't post links so I'll try to message you with it. It's geared towards Dravet Syndrome (a craptacular form of epilepsy), but a lot of it is applicable to epilepsy in general.
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Thank you for the information. He has had some convulsive seizures. Initially he stiffens and breathing changes. On the longer lasting ones he's had shaking on his arm. I think left side only, but because I've usually been holding him through the seizures I'm not sure of the right arm would be doing the same if if it were free.

My grandmother, moms mom, had epilepsy. I did not find this out until my son was in the ambulance the first time on the way to the hospital. Doctors have said that it wouldn't be hereditary since she was my sons great grandmother, but I question why they would think that.
My grandmothers story doesn't end well so that is in the back of my mind. She passed around age 29 after having six children, my mom was just 5 with three younger siblings.
Has anyone done research about epilepsy and heredity?
 
Dravet Syndrome is caused by a mutation in the SCN1A gene, so I know a bit about heredity as it affects Dravet Syndrome. I know it'd be very unlikely (but not impossible) for a SCN1a mutation to only show symptoms in a great grandmother/great grandchild. The SCN1a gene can cause more than just epilepsy. Some people just have headaches. Is it possible you and your mother had more mild neurological problems like migraines?

How long did your son's longest seizure last? How long do they last on average? You said on his longer seizures he shaking on one side only. Does the side/arm that shakes change? I.e. one seizure it may be his left side, but another seizure it may be his right side?
 
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jimj said:
Dravet Syndrome is caused by a mutation in the SCN1A gene, so I know a bit about heredity as it affects Dravet Syndrome. I know it'd be very unlikely (but not impossible) for a SCN1a mutation to only show symptoms in a great grandmother/great grandchild. The SCN1a gene can cause more than just epilepsy. Some people just have headaches. Is it possible you and your mother had more mild neurological problems like migraines?

How long did your son's longest seizure last? How long do they last on average? You said on his longer seizures he shaking on one side only. Does the side/arm that shakes change? I.e. one seizure it may be his left side, but another seizure it may be his right side?
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The first seizure I saw,which was the second that we know of, was about 5 minutes. It's hard to say when the seizure was over and he was just sleeping. Since then I've panicked and given diastat before the 5 minute mark each time. Plus he's been on keppra. Hard to say how long they would have lasted if left alone.
My mom and I don't have any issues with headaches. My family is pretty close and I've never heard of any of my moms siblings or thier children having headaches. A few of my cousins and myself do have high blood pressure which seems resistant to medication. Not sure if that is related.
Is the gene you mention something they look for in an anmio test? I'll have to go back and look.
 
His epilepsy doesn't seem likely to be hereditary.

I don't think your son has Dravet Syndrome or a SCN1a mutation. If I was a gambling man I'd bet my money on him outgrowing these febrile seizures. Even a SCN1a gene mutation isn't the end of the world. As I said above it doesn't necessarily cause Dravet Syndrome and even not all Dravet Syndrome is severe.

I don't want to scare you or add any more stress, but I believe in parents being fully informed. So if you see one or more of these things you may want to ask if they can get his SCN1a gene tested just to be sure. You could have all of these things and not have a SCN1a mutation, but for the peace of mind I would personally ask for a SCN1a test if even one of these was present:
  • Hemiclonic (one sided seizures) that switch sides
  • Status Epilepticus before 14 months (a long seizure, definition of long is a little fuzzy, I'd say anything over 15 minutes)
  • Seizures that are resistant to AEDs. I.e. you can't prevent his seizures from coming despite trying several different daily meds.
  • Trileptal makes his seizures worse/more frequent

An amino acid test doesn't check for genetic mutations. I think there are only two places in the US that test for SCN1a mutations. It takes a couple months to get the results and it's expensive (over $1k I believe), so insurance may not want to pay for it unless you have a good reason to order the test.
 
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Hi, Sleep study was interesting. Has your son had one. Our little man had a 24hr eeg when he was around 8months old but this was very different. The main thing which I found frustrating for him was he usually goes to sleep by 7pm and it was well after 9.30pm by the time they had him wired up and I was able to settle him down to sleep. His night was I think a bit better than usual but still all over the place. We have no results and have been told it takes up to 4 weeks before everything has been looked at and we get back into see the specialist. Knowing my little man they will say there is an issue but we are not sure what to do about it or what's causing it. The sleep specialist has already warned us that may be her finding before even doing the test. We have been told we are not able to take him to a sleep school to help teach him to sleep better due to his medical issues unless he gets a totally clear sleep report from his sleep study. Our older kids are quite good sleepers.
Next is his MRI under GA this Friday so basically keeping him at home until then in the hope of avoiding catching anything which would mean cancelling the MRI.
At the start we were told by his previous nureo and his current one that they thought he would outgrow what was happening probably by one. His current one still says he may outgrow what ever is happening but no longer has a strong feeling on this instead he said he has something "niggling" at him to keep looking.
My son does not have really bad epilsepsy or long seizures he has a collection of strange events (which his nureologist said do look like seizures but he can't say for sure), strange periods and strange behaviours which make everyone wonder what is going on and to top it off he can be the most normal toddler all with in the same day. Thankfully at the moment we are in a stage of seeing more normal each day and a little less of the strange/events etc. But this is normal for him to go through times like this and then times which make you wonder what is comming next.
If you feel like crying do it. I bottled it up for so long and was at work and had a full on panic attack. I have never had one before and I thought I was having a heart attack I went to the GP and they did all the tests and while there I burst into tears. I had a chat to the GP and what it was was that I had been stressing over when to take my little man into the ED when he was having seizures, etc. How bad did they have to be? What if I left it to late? He had had a bad run for a few days which had climaxed into clusters of strange seziures and I had emailed his Nureo who said to wait it out for 24hrs then contact him again and to contact him again 24hrs after that. For that whole time I had been on edge wondering if I was waiting to long.
I know there are some extreme cases of Epilepsy on here but what I have found is there is a lot of parents like me with children who the Dr's are not quite sure what's going on. They know something is happening but can not really explain it.
My biggest lesson so far has been that Dr's do not know or have the answers for everything, no matter how much we want them to. The other lesson I have learn't is if something doesn't seem right with my child to keep telling his specialists, keep recording as much information as possible as I would rather be labelled "one of those over reacting mothers" than to be sitting there thinking "if only I had got help sooner, If I only had........." It is my childs life. He is to young to speak for himself so I have to do it for him.
I use to have a hospital bag packed and left in our wardrobe for both him and I incase he had to suddenly go off to hospital again. I don't anymore but I am sure I could put one together pretty quickly if I had to.
You will recieve a lot of advice and if your like me read so many different things. Take it all in and then you can decide which you want to follow now, which you make keep in mind for later and which you think isn't for you/your child. I have a list of different things varying specialists have mentioned re possible diagnosis for my son, each one though mentioned only in passing. Thankfully they are gradually crossing things off the list. Hs paed now says she thinks they will find he has some extremley rare or even new metabolic disorder. I have said to her I am not so worried re what he "has" anymore as to helping him stay in the "normal toddler" periods and not enter into these other periods or have events etc. Labeling his condition may not help him unless they already have ways to help that condition. His Nureologist said his wish is that when he turns 4 we look back and wonder what all this fuss was about, that is my wish as well.
Sorry for the long post. When I read your posts they just remind me so much of myself.
Won't be on computer again until probably at least Sunday or later. I hope you find some answers soon and don't be to hard on yourself we can only do so much.
Take Care.
Donna
 
the vidio sounds good idea,but depriving yourself of sleep is bad for you both,sleep deprivation make you see things like he having ordinary twitch as we all do you be on your neves so much you be ill..the plus side you know he has sezious and you can educate yourself on them..you need keep your energy up as you proberly meet other dr like er doctor..
more practicalities let your baby sleep in cot maybe alarm sensors,in all honesty seziours can look worse than they are and when it your child worse again,chances are he had them when you not been there to see them and he ok...little things like flu jabs can do this plus babies are prone to lots of virus and that will do it aswel.
 
I'm not the most informed as we've only been dealing with this for two years and the first 18months were horrible and similar to yours. Different doctors saying that our baby has seizures and just to deal with it. If they last more than 15 minutes take them to a hospital. We have since found a new neurologist at a Children's Hospital and have gone to two different epilepsy seminars with other parents.

I can't offer much in the way of advice other than to say keep fighting for your son and keep searching. But also, be careful not to be hyper vigilant. You'll go nutty. I keep a camcorder out to record the seizures and have it as a quick button my phone. ANYTHING I think may be a seizure is now recorded. Write down everything; what was eaten, what they were doing before/after, etc. Keep the journal and give it to your neurologist along with the video and they may be able to help. This is how we have learned she is having more seizures than we realized.

I hope you get some sleep and that answers come soon. ((HUGS))
 
Thanks for all the replies. Things have been pretty uneventful since my last update. No seizures (that I know of) for the past 10 days and he's pretty much his normal self again. Can't say the same for myself. I feel like I'm in a constant state of holding my breath. I know from last time this will get better.

His appointment with his neurologist has been pushed out a week further. Now scheduled for early february. Guess we just have to wait and see.

We did go out and buy him a bike helmet. Not so much for riding a bike, but for falling in general. He's at the very early stages of learning to walk and they fall so much at this age. At home it's not really needed as we have carpet and I try to keep things he can hit is head on away when he's up and about. I'm more worried about when we're out at a park or somewhere and he it's happy just hanging out in the stroller and wants to walk. Also worried for when he starts climbing on play equipment too. He could fall and hit his head again or what if he has a seizure and falls from some climbing equipment? Has anyone had to deal with this worry? It wasn't so long ago a child living not far from me fell and from park play ground and did not survive. The helmet will make me feel better...I think.
 
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