At wits end, any suggestions?

[Blazem]

Hi All,

I have a 2 year old with epilepsy on tegretole 4 ml x 3 times daily. I'm a single mum and she is still having occasional clonic tonic seizures that they are still investigating. I have to sleep with her to know when she is having a seizure and to be able to react to it. This has been going on since she was 5 weeks old, how will I get my bed and sleep routine back? We are thinking about getting a seizure awarness dog but we don't fit selection criteria but I'm willing to pay for it myself if it comes to that.
Or any other suggestions?

Blaze

 

[donnajane]

Welcome. My little man is also 2. He has been having known seziures since 7 1/2 months although his nureo suspects they may actually have been happening earlier and just being dismissed as "reflux". Dr's are still searching for answers with him. He has had 5 EEG's, 4 clear, other than eye's rolling up with flashing lights but no movement on the EEG and the 5th showed a slowing on the back right of his brain. Thankfully his Nureo kept looking and booked him in for an MRI when he turned 18months and they found he has a brain lesion on his putamen, deep inside the brain that is why it wasn't showing on the EEG. He had his follow up MRI almost a month ago and when get the results from this in 9 days. His Nureo said he isn't sure if this is the cause of his event's and the other strange things which happen to him but he can't rule it out either. At the moment it's a wait and see. His Nureo is away until the end of this week by I am hoping now news is good news as surely his receptionist would have contacted him if the MRI report came back with something which needed urgent attention.
I was a bit like you with sleep but we now have a secruity night vision motion detect camera in his room. He is still sleeps in a cot as well as we worry with some of his event's overnight he may fall out of a bed but then kids without his issues do as well. Thankfully he hasn't even tried to climb out of the cot yet. The camera is great as it records after the sensor has been set off, we have it linked onto our laptop which records when it goes off so if he has a bad night I can check it in the morning and we also use an ipad as a monitor next to our bed so if we hear something which worries us we watch him on the ipad and decide if he needs us to go down to his room. Only draw back is we miss the start of any event/movement which first set of the monitor. We have only recently moved the spare queen sized bed out of his room. It had been used a lot by us before we got this monitor.
I know how hard and scary this is especially as my son is to young to tell us whats happening.
This site has been amazing for me. I have found a lot of support and others are always willing to help with advice when they can.
Take Care.
Donna

 

[Blazem]

Unfortunately she moves too much at night and doesn't tell you the difference between movement and a seizure

 

[Cint]

We are thinking about getting a seizure awarness dog but we don't fit selection criteria but I'm willing to pay for it myself if it comes to that.
Or any other suggestions?

Blaze

Hi Blaze,

I'm sorry to hear of your tough predicament. Since you don't fit the "criteria" for a seizure awareness dog (I don't understand why not) have you checked into this seizure monitoring device: http://www.emfit.com/

Also, who did you contact about a seizure awareness dog? Here is a website that provides dogs for children with seizures, with no age limit: http://4pawsforability.org/seizure-assistance-dog/

I hope you do find the help you most certainly deserve.

 

[donnajane]

My little man moves alot as well. Sometimes he sets his camera off close to 200 times a night and each of the times it records for 1minute. It at least gives me something I can look back over if he has a really bad night. The only thing is it misses the intial movement. I was filming him all night, not using the motion detect, but I was staying up all hours the next day to watch the footage through and mark down events so this helps a lot.
Hope you are able to get some assitance so you can get some sleep as well.
Donna

 

[KarenB]

Ha ha!! Well...this may not be the news you're wanting...but Jonathan is now 9 years old, and one of us still sleeps in his room. Most of his seizures are nocturnal, and I'm just petrified I'll miss one, and he'll suffocate or something.

There WAS about a 6 month period during his 12 months of being seizure free (last year) when we let him sleep alone, but put a baby monitor in his room (he usually screams out when a seizure begins). And we continued that, even when he relapsed and started having seizures again. But then, one time I just happened to walk into his room on my way to bed and he was in there having a silent tonic-clonic. That scared the crap out of me, because I had no idea how long he had been seizing, and it also alerted me that I couldn't trust the baby monitor to let me know when he was seizing.

So...we went back to one of us sleeping in his room. If we want a "conjugal" visit, we meet up in the master bedroom, and then either my husband or I (usually me these days) will go back to Jon's room (we keep 2 beds in there).

 

[Blazem]

I'm located in Australia and we have not so manny resources but thanks I have so good leads to getting life a bit normal

 

[Blazem]

Sorry Donna I don't know how to put this, my daughter has died twice (no heart rhythm or breathing) during her seizures. One major lasted almost 40 mins (in hospital) so I'd love to get to the stage where I can look back over a night of her sleeping but at this stage she even sleeps on the couch at lunch time so I can see her at all times. Thanks for explaining how that monitor works and your kind words.
We are hoping she grows out of it.

 

[Blazem]

Oh Karen, I did have a tear to know that someone else knows the fear of silent tonic clonic seizures especially the totally unexpected ones.
So life continues lol next step buy a bigger bed and another spare kids bed for her room
Could be worse

 

[donnajane]

Balzem I am so sorry your daughter has died twice. It must be so frightening for you. My son has also stopped breathing from a seizure but thankfully not "died".
I hope I didn't offend you with my explanation of the monitor's but I know for me until someone mentioned these and also the pad which monitors breathing under the child's sheet, I had not much idea and DH and I were taking turns camped out in his room overnight.
I hope you can find a way for you both to get some sleep.
Take Care.
Donna

 

[jimj]

For a list of devices you can use to detect nocturnal seizures see:
http://www.dannydid.org/sudep/devices-technology/

We personally use a hospital grade Pulse Ox. This is the best solution for us since my daughter's O2 always drops when she has a seizure, which sets off the Pulse Ox alarm. Her seizures are also almost always non-convulsive, which I think would make if very difficult for the other "seizure movement detection devices" to work reliably.