Tegretol to help with sleep and seizures?

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donnajane

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I sent Nureo my sons weekly update last night and attached footage of how he staggers and struggles to walk/focus when he wakes up. The Nureo said he was definite my 16 1/2month old was as Nureo calls it in a "fog". His Nureo has always said it could be this or... but this he was sure of. He said it is probably caused by seizure activity while he is sleeping overnight and during naps. I am sure he will look into this more. He is sending us out a script for Tegretol on Monday to use as a trial at night, but has said to use it only if the the Specialist at the Metabolics unit doesn't have an idea of what is happening. We are seeing the Specialist on Wednesday so I doub't we would have the script by then anyway.
Does anyone else's child use Tegretol? I have read some not so good things re it but I trust his Nureo and know that he never prescribes meds unless he feels they will do more benefit than harm and improve a childs outcome. We have seen this specialist for around 7 months now and even though my son has been having a varitey of what he calls look like Epileptic events he has never given him meds. He has given me a script for them but told me not to fill it unless he tell us to and so far he hasn't felt the need.
I feel like we are one step closer to helping work our what is going on with my little man.
 
I personally haven't, although I had a similar experience growing up.

I'd have "fogs" similar to what you were describing when I woke up in the morning. I'd stagger and be extremely confused, and sometimes it would lead into seizure symptoms.

Considering he's having the Metabolic Unit look into it, I'm guessing he's guessing it's the same thing mine turned out to be. When I was a kid my insulin would spike during my sleep, causing a blood suger crash. If blood suger gets low enough it can cause seizures, and also dizziness, confusion, fainting, and other such problems.

Solved that problem by eating a banana and some peanut butter crackers before bed every night. :) Bananas are metabolically slow, and so is peanut butter, plus PB has protein which helps maintain stable blood suger. Eating those about half and hour to an hour before I went to bed helps stabilize my blood suger throughout the night and those fogs in the morning have never been a problem since. Hopefully your solution is that simple and medicine won't be required! Be sure to keep us updated if you can! :)

Side note: I still have seizures and such, however they did reduce when I figured out my blood suger being low was a trigger for me.
 
Will the Tegretol be in liquid format or a sprinkles? Those would be easiest to give him, since you can mix them in with other foods if necessary.
 
No idea re how it will be. Still a bit almost "in shock" that he is giving him meds as Nureo has held off so long. I googled the meds and am a little worried as he has several forms of seizures and it says while it can help some it can also make others worse. I know it is a trial and see how he goes with any meds.
 
Yes, unfortunately all the meds have a trial-and-error aspect, since they affect everyone differently. Let's hope the Tegretol makes a positive difference quickly for your son.
 
Tegretol gives me a heavy head in the morning and I wobble, bump into things and fall backwards and even fall over. The price to pay, for me, for having reduced seizures.
:)
 
That sounds like my son after he wakes up without any meds! Will be interesting to see how he goes!
 
Can't work out what is happening with my little man. He had the most shocking night. They seem to have gotten worse over the last week, not sure if the Tegretol has made it worse as he is up to day 6 on a very low dose. (On Wednesday he goes from 2.5ml to 5ml-pm , then week 3 2.5ml am/5ml pm, then week 4 is 2.5ml am /7.5ml pm.) He still has the same forms of spasms/events overnight where he will suddenly move, suddenly go stiff and sometimes do a short scream as in immense pain. They use to happen around a dozen times a night but now it is so much he hardly gets to sleep for more than 20minutes in between sometimes less as they happen in clusters. My husband and I have been taking it in turns to spend the night from around midnight in his room in a spare bed to try and help settle and comfort him. Last night he was so bad I ended up putting him into the bed with me and trying to comfort him so bascially neither of us got much sleep. I felt so bad for him this morning he finally seemed to get into a settled sleep around 5.30am then I had to get him up around 6.30am to get ready to go child care at my work. We leave home around 7.30am. He looked shocking his face was also so reactive even wiping it with a wet face washers sent it into a large red welt. I just hope the Tegretol can start to help him and/or the MRI and Lumbar puncture will give us some answers soon as if need be I will stop work but it is such a good work enviroment for him and my other kids as the child care is at my work and their is a nurse on site which is important to me with my little mans issues. Every day something new and confusing seems to happen like even though he had a shocking night, his skin was super reactive and he looked so tired and worn out today it was the first day in 2 weeks he hadn't ended up soaked in sweat after his afternoon nap and he also was able to walk normal for him, slightly stiff, after waking up. Not sure how long he was awake in his cot though as they may account for him being able to walk. It has been such a huge learning curve for us these last 10months or so but at least now we feel the Dr's are over the lets see if he is going to "grow out of it" phase.
I really appreciate everyone's replies as I learn so much from you all.
 
I do hope the tegretol works for him - it took a month or more to work for me. I feel for you all - take a day at time (or as in his and my case, a night at a time.

Best Wishes
:)
 
He could be having an allergic reaction to the Tegretol, or it could just be side effects as his brain and body adjust. Certainly let his doctor know, especially if the side effects get worse.
 
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