Monitor at night?! HELP!

Pamela - posted on 12/19/2010

I got my daughters from here
http://www.muirmaxwelltrust.com/what-we-...
It was free and it is amazing. I actually get some sleep now.

Leticia - posted on 12/01/2010

Unfortunately I dont have an answer.....I simply share the same concerns. My 8yo has had 5 grand mals since june 2010. actually 11 once when levels of valporic acid were too low he had 6 in one day, he convulsed each time but nothing too bad. What I do is what many moms say they have done too... he sleeps w/me, which can be just as scary the first one he had he fell off my bed during as nap while i used the restroom. Its sooo scary., it drives me crazy. he continues toi have seizures at night and until tonight I didnt know others shared the same almost exact experiences. Good luck i will be following this post for more advice

Ashley - posted on 11/29/2010

My son has seizures and I got him a movement monitor that clips onto his diaper and if he stops breathing an alarm goes off. You can even make it beep every time he moves so you can hear it on a regular baby monitor. Its called a Snuza Go. I found it on Amazon.com.

Kristen - posted on 11/28/2010

My son was diagnosed at age 2 with epilepsy. Up until a few months ago he has always slept in the same room as me. At first I tried putting a monitor in his room and found I just could not sleep at all. I was too worried about him. He either just slept with me or on a bed in my room. My son has never been on meds just a vitamin regiment. He has had tons of grand mals, only at night as well. After so many years of having them, he has only had one that his neurologist would classify as needing immediate treatment(Calling 911). Now that I have moved my son back into his room, I am using the monitor again. When I am alerted to his seizure I just monitor him then return to sleep.

Jackie - posted on 11/19/2010

I have the same sleep fears as you do.Our son has GEFS+ and we are awaiting test results to find out if his SCN1A gene has mutated and caused problems with his sodium channels, for 5 wks now. He has had 6 status seizures, starting at 4 mths. He is now 15 mths. We also asked about the monitor, and his dr. simply said, they are not reliable tools. He said to tie a bell, or put a bell under the mattress, and that would be just as accurate. I also love the dog idea. Honestly, I just watch him like a hawk, and pray alot. Just know you are not alone, keep your faith, and your that you are in my prayers. If I could offer some advice, it is to get a great dr. We drive 5 hours to Cincinatti Children's and it has been great for him, he has a team of brilliant dr.'s and specialists, that we just don't have here. Breathe deep, it helps :)

Misty - posted on 11/18/2010

I'm so sorry to hear. My daughter has most of her seizures nocturnal as well. She sleeps with us . My fear is to great that she could not wake up from a seizure. My daughter has a syndrome and this is a marked feature of it . Every parent is different some have them sleep with a sibling, some sleep in bed with them , some in the same room , and then some parents get the angel monitor plus the ox , theres also parents that get the seizure alert dog that helps. So it's really up to where your comfort level is at. I think whatever decision you make will be the right one for you. For me I have a hard time when she sleeps with me in bed ....... Constantly checking for breathing and monitoring seizures, so I'm sure I would be a wreck whether in my bed or not!

Teresa - posted on 11/18/2010

My son is 19 now He started having infantile spasms at 3 months then he started having grand mall He has 3 to 4 grand malls a week. He use to have them so bad that he would have to be inabated and they would last an hour and a half sometimes. He takes topamax now He has been on every medicine there is and none of them control them completely. The only one that ever did is Lamictal and he had an allergic reaction to it. The reason I am telling you this Chelle is your son can live a happy life for along time. My son is 19 and he still has 3 to 4 grand mall seizures a week and they are bad it never really gets easier seeing your son have them, but guess what he is still alive. Get a monitor put it in his room keep the other up by your head so you can hear. You can also get the monitors that you can see him to. My son is alive at 19 and he is going to live a very long time. I am thinking about getting a dog also so I have back ups. Well, I just wanted to tell you that your son can live a very long life. I will be praying for you keep the faith.

Annette - posted on 11/17/2010

A seizure dog is good but will take time to get.
but right NOW get a oximeter moniter.
(it monitors the O2 saturation)
The moniter is hooked to a line that can wrap around a toe and will give his heart rate and oxygen level in his blood.
If he seizes and is not getting oxygen it will beep.
We have one (my son has seizure disorders but we have it for his respitory issues)
It can be delicate and beep when my son bends his toes or is not placed exactly right
but for the most part it's great and lets him sleep in his own room. (and gives us peace os mind)
You can rent this or get your DR to order through a medical company (thru insurance)
YOU MUST INSIST, they don't like to give them out easily.

Karly - posted on 11/17/2010

I completely understand....I have a 8 year old daughter that unfortunetly has every kind of seizure out there... She mostly has them at night. All of these ideas out there like the dog or monitor sound great for a back up, but nothing is going to be as safe as you. My daughter sleeps with me and I have to wake probably 3 times a night to handle a seizure, I really dont feel that I would be comfortable leaving it soley up to a dog or technology, but I do think they would be great back ups. I wish you luck.
Karly
(TO ALL: when there are seizures..
push Dr. to try 200mg of B6 a day!!)

Laurie - posted on 11/17/2010

Bless you heart! I totally understand your fear. I would ask for help with insurance in getting the bed monitor AND the dog. You can never have enough peace of mind and if you can fight/demand to get both then by all means do it. The dogs are great for PRE alerting from what I understand. I want so badly to get an alert dog for my granddaughter but my daughter in law is terrified of all dogs so she won't discuss it. Thankfully though my granddaughter has never had a grand-mal and I pray she doesn't. Hers are daily/hourly absense and myoclonic..This is such a terrifying illness...and we know how frightened we are. I can't even imagine what these children must be feeling. I absolutely HATE the look for fear on my granddaughters face when she's coming out of a seizure. My prayer is for a cure one day and one day SOON!! God Bless these children.

Chelle - posted on 11/17/2010

Thank you so much Lisa!!!

Lisa - posted on 11/17/2010

I'm so sorry to hear all you've been going thru. My daughter had only 1 grand-mal so far (after 4 months of 2 myoclonics per night) and that's about all I could handle. Thank God her meds are working but I understand and still have that fear every single night. (She still sleeps with me:) I've researched some alarms; http://www.bedseizurealarm.com/index.htm... (which will alert the movements) along with the Summer Infant - Best View Handheld Color Video Monitor (awesome visual & sound. I love mine. Has night-vision!) I'm sorry for what you're going thru and I totally understand. I don't want my baby (even tho she's 13) to be away from me just in case. My biggest fear is "not being there". Anyways, good luck, keep the faith, and stay positive & hopeful :)