Hoping someone can help..

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StephanieMomof3
Regular Member


Date Joined Apr 2005
Total Posts : 26
   Posted 8/4/2005 12:23 PM (GMT -7)   
Hello,
I have a 19 month old son,who has Epilepsy among some other medical issues which are still trying to be ruled out..such as a metabolic disorder..On Monday after putting my son to bed,I had went in to check on him..Found him seizing and his lip's were very blue...after calling for help..He was taken to the E-R to be monitored..He has been sick for the last two week's..Med's have been extremely hard to get in him.They did a level on him,it had come back at a 7 mad ..I was told this is extremely low..he should be at 90-100..So they now put him on liquid Depakene..4ml every 8 hours..So far he really likes the taste of the medicine..I am wondering if there is any type of an alarm or anything to put in a crib,that would go off with movement or something due to a seizure..I was told that there is an alarm for sid's...Also I am inquiring to the doctor about an apnea monitor,for him to wear during nap and at bed time..This is not the first time that he has turned blue..Sorry if this does not make sense..I am very scared,frustrated and confused..If anyone has any helpful advice I WOULD GREATLY APPRECIATE IT..I am still waiting to here back from the neurorolgist..
Thank's,

Thanks and HAVEGreat DAY!!

~Stephanie


StephanieMomof3
Regular Member


Date Joined Apr 2005
Total Posts : 26
   Posted 8/4/2005 1:06 PM (GMT -7)   
Hi Jennifer,
Yes that would be great IF YOU WOULD NOT MIND E-MAILING THAT TO ME..I will definitely be heading to "Toy's R US" 2day..Also no I DO NOT ALLOW HIM TO SLEEP WITH A PILLOW..
Thanks soo much,
~Stephanie

Thanks and HAVEGreat DAY!!

~Stephanie


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 8/4/2005 2:14 PM (GMT -7)   
Stephanie, I am so sorry that your toddler is going through this! It is so scary. There are other parents who also use apnea monitors. Talk to your pede and neuro to see if they will order one for him since he does turn blue...
 
I hope the medication does well for him and gets the seizures in control!
Ginny

StephanieMomof3
Regular Member


Date Joined Apr 2005
Total Posts : 26
   Posted 8/4/2005 2:26 PM (GMT -7)   
Thank's Ginny..
I am still waiting to hear back from both of the doctor's..

Thanks and HAVEGreat DAY!!

~Stephanie


StephanieMomof3
Regular Member


Date Joined Apr 2005
Total Posts : 26
   Posted 8/4/2005 2:41 PM (GMT -7)   
Just got off of the phone with his Pedia doctor..He is definitely going to order him an apnea monitor.. He said with his level being this low is very dangerous.But another concern he said is with the wires for the monitor,that he does not get them wrapped around himself..I am sure there is something to help with that..He said maybe a vest or something.So we will see..Just need to wait to hear from the insurance company now..
~Stephanie

Thanks and HAVEGreat DAY!!

~Stephanie


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 8/5/2005 12:03 PM (GMT -7)   
I have seen others who use a monitor with young kids use a Toe sensor...this way it is not the hand or near their head.....there is also a disconnect feature for kids who might walk to the bathroom at night....

My son used one for testing for a few nights and did ok not getting tangled in it.....

SO glad that the pede doc is willing to order this and will help you!! Helps SO much to have him on your side.

StephanieMomof3
Regular Member


Date Joined Apr 2005
Total Posts : 26
   Posted 8/5/2005 3:42 PM (GMT -7)   
Yes,Indeed...I am very thankful for my son's pedia...I just got a phone call a lil while ago from his neurologist..stating I should use just a baby monitor..I use that already for him..they are senseitive,but not enough to tell if he completely would stop breathing..Both of his neuro's comment's were,if I can't get him to take his med's than how do I think I am going to use an apneia monitor on him..I am frusterated..His pedia doctor already ordered one for him,but due to his age it has to be medically reviewed be4 the ins. comp will ok it.. Other wise it $348/month..So now it is a waiting game :(

Thanks and HAVEGreat DAY!!

~Stephanie


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 8/6/2005 7:29 AM (GMT -7)   
Stephanie, I hate that waiting, too! You are so right that the baby monitor is just not enough. The apnea monitor you can TAPE on and find ways to make it work. You do not usually alert to LACK of sound if you are asleep. Neuros just do not understand the stress of you trying to sleep and keeping your child safe while he sleeps.

Hang in there with it all!
Ginny
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