Help

[Miraclebit]

Hello again,
My son has very frequent complex seizures. For the last two week he has been waking up during the night and his eyes are slightly open and it sounds like he is snoring but he will start to dig his fingers or filp flop in the bed. It seems to keep him awake for several hours during the night. Has anyone had this happen? He also cannot communicate so we don't know what he is thinking or feeling. I did notice last night that he had about 23 small seizures while this was happening. He also is having problems eating. It has been a fight to get him to eat. We have had to force his jaw open to eat. He also started having a new type of seizure on Thursday.
Please help!
Thanks,
Chamisa

[RobinN]

I think you should call his doctor. If you don't get some help, call your PCP and ask for a second opinion.

[Miraclebit]

We have already called and gone to his PCP last Friday. She could not give us any insight.
We have had no reply from his neurologist and we have an appt. set up for the sleep doctor next wednesday as well as a neurologist on next wednesday as well.
I just thought that someone here might know something I don't.
Thanks Robin!

[Bernard]

You might ask the neurologist about the definition of status epilepticus. If your son if having seizure after seizure all night long, he might need emergency care. I don't mean to scare you, but I'm pretty sure this is a high risk factor for Sudden Unexplained Death in Epilepsy.

Maybe he would prefer to drink soup through a straw? Sorry, I don't have much advice for the non-eating bit.

[Miraclebit]

What does Sudden Unexplained Death in Epilepsy mean??? And what is epilepticus???

[Miraclebit]

He doesn't know how to drink thru a straw, but thanks you for the suggestion! He is only functioning at an 8month old to a 1 year old level. 98% no communication.

[Miraclebit]

I looked it up, thanks for the not so nice information, but it is greatly appreciated in knowing something I didn't have a clue about! I will call tomorrow mornig ASAP!!!

[RobinN]

My prayers are with your little angel. Good luck with your appointments. Don't forget you can talk to the doctor on call if you have any questions throughout the night. HUGS!

[Birdbomb]

I hope everything comes out okay.

[BensalemAngler]

My thoughts and prayers are with you

[Bernard]

What does SUDEP mean??? And what is epilepticus???

I think you later posted that you had looked it up, but just to clarify for any visitors reading the thread:

Most seizures end after a few moments or a few minutes. If seizures are prolonged, or occur in a series, there is an increased risk of status epilepticus. The term literally means a continuous state of seizure.

Status epilepticus is usually defined as 30 minutes of uninterrupted seizure activity. However, the Epilepsy Foundation advises parents and the public to call for emergency assistance when a convulsion continues for more than 5 minutes without signs of stopping. ...

Convulsive status epilepticus is a medical emergency. An estimated 42,000 deaths and thousands more instances of brain damage per year follow episodes of status. ...

status epilepticus

... SUDEP is sudden unexpected death in someone with epilepsy, who was otherwise well, and in whom no other cause for death can be found, despite thorough post mortem examination and blood tests. The definition excludes people dying in status epilepticus and those who drown.
...
Higher rates of Sudden Unexplained Death in Epilepsy are found in studies of people with severe epilepsy, suggesting that people with frequent, severe seizures are most at risk. Some authors have suggested that seizure frequency is not a risk factor but a recent study found it to be the most significant risk factor. ...

SUDEP - Sudden Unexplained Death in EPilepsy

This is also an interesting read: Should patients or their families be told of the risk of Sudden Unexplained Death in Epilepsy?

[Mom2tripp]

Chamisa, I could have written this. My son who is 28 and mentally delayed...limited speech. He has the same kind of seizures at night. He will make a snoring sound, turn around and sit up in bed....then lie back down. It has happen each night.I now give him an Ativan if he had more than 3. At 2am this morning he had several...so I gave him an Ativan.....05mg. It calms him down and he goes back to sleep without any more seizures.
For a LONG time he has had seizures when he naps...his head will turn left and he will make the snoring sound then will return to his sleep....they are not like the night ones.
I pray for your little angel...sending him prayers on Angel wings.

[wonderdogs]

Good luck with the doctors. I hope they are able to propose a resolution!

[brain]

((((((((( hugs )))))))))))

Hope the Doctors will work and find
something soon and quick!