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Old 09-19-2005, 03:20 PM   #1
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Not eating after seizures

Hi. First time posting. I'm the mother of a 20 year old male with autism and epilepsy. He only has 2-3 gran mal seizures a month, but for about 4 days following each seizure, he refuses to eat. He usually doesn't drink for about 24 hours and then won't eat for another 3 days. He is unable to speak, so cannot tell me what or how he feels. Has anyone else had such a problem? Bad taste in mouth? Food smells bad? Stomach upset? Anything similar to that? I would love to know how he feels, and if there is anything I could do for him. Not eating for 8-12 days a month keeps him a skinny guy. Thanks

 
Old 09-19-2005, 04:25 PM   #2
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Re: Not eating after seizures

Hi and welcome.
What meds is he on....some can interfer with wanting to eat. Does he eat good most of the time?
My son,Tripp,eats great no matter what.‹
Hope someone here can help you.
Betty
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Old 09-19-2005, 04:28 PM   #3
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Re: Not eating after seizures

Thank you. No, he eats great the rest of the time. Like a horse, I would say!! He's on Depakote, Tegretol, and Keppra for seizures, but they're still not controlled. Don't think it's the meds since he eats a lot normally.

 
Old 09-19-2005, 05:16 PM   #4
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Re: Not eating after seizures

Have the same trouble after bad ones, to the point of having to put in an NG tube to get fluids/supplements in, so I don't get into a cycle of dehydration, which leads to more seizures (complex partials, nocturnal, ?secondary generalized)... then after other ones, that aren't as bad, I am hungry- appetite has been shot for about 2 years- thought it was med related, but doses were changed and nothing happened. The sight,smell, taste, and feel of food in my mouth was repulsive for months. Was hauled off to the ER for IVs a lot, or blood pressure not staying up because of dehydration. I'm overweight, but have dropped about 30 pounds because of this, so not exactly how I want to get to a decent weight. Maybe he eats like a horse between times to compensate somehow, and that's what keeps him going...
Maybe some Ensure or Boost??? Not that that stuff is the tastiest in the world, but it gets something in....and maybe if it's not solid, it might be easier for him.....what's the doc say?

 
Old 09-19-2005, 07:09 PM   #5
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Re: Not eating after seizures

Oh, wow! I am so happy to find somebody else who can tell me what he might be experiencing. Not that I'm happy for what either of you is experiencing, but you know what I mean. That's what he acts like, like it is repulsive. He signs "finished" and pushes food away, and sometimes even gags. I do manage to coax his pills into him with a little pudding. I'm usually happy if I can just get liquids into him because, like you, he does get dehydrated. The neurologist says he's never seen such a thing. Great answer!!! I'm going to ask his regular doc tomorrow about it. I wonder if he could take some kind of meds for nausea during those times. Have you ever tried that? I've tried Boost and Ensure, but when he's not drinking, he won't drink that either. And, when he is drinking, he seems to prefer plain milk and Gatorade. He sometimes won't eat the day before a seizure either, so if he won't eat, I know one is coming. Thank you for sharing your experience with me. I'll let you know if the doctor tomorrow comes up with anything outstanding.

 
Old 09-20-2005, 02:25 PM   #6
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Re: Not eating after seizures

I was never on his mix of meds (Dep, Teg Kepp) but I have been on them all. Teg Dep and Dilantin was chaos for me (major drug interactions with all 3). Teg Dep and Lamictal was ineffective for me; Lamictal never reached proper levels.

Dep DOES cause weight gain if you do not know that yet. It also tends to cause hair thinning. But being on Dep did not make me stop eating. I ate more while on Dep compared to other drugs for epilepsy treatment that I have been on (a good number of drugs!).

Is he given another drug after a GM? It's possible the after effects last longer than just a few hours in his case; just not visable. That is just an educated guess based on your statement. If he has had an in-hospital EEG that would have shown.

Upset stomach is a common side effect (in my case it was) after GM's.
Neutral foods MAY help, some juices to settle the stomach if that is his problem.

--Travis

 
Old 09-20-2005, 08:26 PM   #7
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Re: Not eating after seizures

Regular nausea meds (like Phenergan) did nothing. My doc was going to try Reglan, but I was resistant since I'm already on so many other meds, don't have insurance, and just can't afford the 'luxury'....the NG stuff was actually cheaper on eBay than the meds were....I do a lot of Gatorade the day or two after bad ones, and can occasionally get the Boost/Ensure in... another option (which is cheaper and has basically the same nutritional value) is instant breakfast....if he likes milk, maybe he'd go for that. It got to the point that when co-workers were eating lunch, I had to leave the room. Kept having seizures, doc upped meds over the phone without seeing me to a dose of 3600 mg of Neurontin/day. When I moved up here, I was on 900... can't afford the generic of that now, so am tapering off, and hoping that the Tegretol and Klonopin (generics) do the job. I would go weeks between actual "meals", and months without eating more than once a day. If I'd get the urge to eat something, I'd go get it before I lost interest. Then I'd end up with the runs, but I was at least trying. Now, even with tapering off the Neurontin, which was what I thought was the culprit because of the massive increase in dose around the same time this started, I still don't care if I eat. It's not just seizure days, but definitely worse then. Except like I said above, if it's been fairly mild, I'll start grazing for a day. And after any bad ones, I've started using the NG for fluids, just to help prevent the dehydration, since I"ve ended up in ICU unconscious from a blood pressure that would not stay up because of dehydration being so bad (there were other things going on, but I've learned that dehydration is a HUGE problem after seizures). I can sleep for 20 hours easily, and then just sort of wander around, even though I've got a menu plan taped to the frig of things I could just grab (yogurt, bagels, peanut butter, etc), and it doesn't occur to me to eat. I live alone, so decided that the tube was my only hope of staying out of the ER (with no insurance- medicaid pending for 6 months- they reassure me that all is where it's supposed to be and being reviewed....). Will he point to pictures of food in magazines that he likes? Ensure makes pudding, and you can add a can of supplements to instant pudding if you make that....or milkshakes with the supplements as part of the milk component???? It's hard, because when the "repulsion" phase hits, there's not much that sounds remotely edible. ANd seeing, smelling, tasting, or feeling food is almost like torture. Let me know what your doc says...mine's at a loss.... she's not thrilled with the tube, but understands why I got to that last ditch attempt- and it has kept me out of the ER for months.

 
Old 09-21-2005, 06:43 AM   #8
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Re: Not eating after seizures

Took Michael to see the regular doc yesterday. Can you believe I totally forgot to ask her about trying nausea meds? I can't believe I did that. But, she said for me not to worry about him not eating for 3-4 days after a seizure. His weight is staying stable and he eats well the rest of the time. She said as long as he wasn't vomiting or having diarrhea, he was ok. That sounds difficult for a mother to do though So, I'll continue to push fluids often and get as many little sips in him as I can. The Ensure pudding is a good idea since I can coax him to eat pudding to take his pills. But, if he is feeling the nausea and actual repulsion to food you guys are feeling, I really don't feel like I can "force" him to eat much. That would be awful to feel that way and have somebody force food on you. No wonder he gags! I really appreciate you guys sharing with me and being Michael's "voice" to let me know how he may be feeling. Oh, I have a couple other interesting things his doctor said, but they're on a different subject, so maybe I should start another thread. I don't exactly the proper way to do this yet.

 
Old 09-21-2005, 05:39 PM   #9
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Re: Not eating after seizures

Not eating as an epileptic I can comment on... Not his meds; but my most recent add-on, Topamax caused me not to feel hungry. That was a mental battle I had to learn to overcome. I still fight that daily. I don't feel hungry, but I trained myself to eat in small "snack size" meals during the day, and one real meal at night. Now I am maintaining my weight.

At first when those effects kicked in I went 2 days without eating. Something I never did before. I knew there was a problem. I started to dig online and learned one of the off lable uses was weight loss for Topamax (in non epileptics!).

I agree if he can point use a poster like board of the foods commonly eaten to see if that may help. Or even post card sized (laminated) of food and see if that will help trigger the appitite. Your only problem is he may then demand specific foods every day once you try that technique. (and in turn refuse to eat if it is not what he wishes to have)

I learned on Topamax aroma's caused me to be hungry. Primarially it was shrimp I smelled (I love shrimp) and others mentioned the same effects with the drug.

I too worry if a person does not eat for more than 2 days. It is not healthy.

--Travis

 
Old 10-06-2005, 06:19 AM   #10
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confused mum HB User
Re: Not eating after seizures

Quote:
Originally Posted by shelseker
Hi. First time posting. I'm the mother of a 20 year old male with autism and epilepsy. He only has 2-3 gran mal seizures a month, but for about 4 days following each seizure, he refuses to eat. He usually doesn't drink for about 24 hours and then won't eat for another 3 days. He is unable to speak, so cannot tell me what or how he feels. Has anyone else had such a problem? Bad taste in mouth? Food smells bad? Stomach upset? Anything similar to that? I would love to know how he feels, and if there is anything I could do for him. Not eating for 8-12 days a month keeps him a skinny guy. Thanks


my little boy after seizures refuses to eat most things like toast and pasta dnt know quite why it is XX

 
Old 10-06-2005, 10:55 AM   #11
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Re: Not eating after seizures

Sometimes I can get jello down, on bad days, or saltines and ginger ale. Usually the colder foods are easier for me, and the warm/hot stuff is dreadful, and makes me feel nauseated. I'm doing somewhat better (up 5 pounds- most likely fluids balancing out) per the MD appt yesterday, but started a new med (Lyrica, and am back on Celebrex, and got some as needed Meclizine for nausea with headaches).

Will he go with you to the grocery store and point out stuff he likes?

 
Old 10-11-2005, 04:19 AM   #12
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Re: Not eating after seizures

Hi - my daughter Rebecca is age 20 and seizures daily and functions at around age 4. Keeping weight on her is a huge issue we battle daily. She weighs around 85lbs and is 5ft 1" tall. She has gone down to 78 lbs. She has limited verbal skills but where food is concerned, she is clear. Says no more and takes it away as we can tell it makes her sick to look at it. I firmly believe it is seizure related and it makes her not want to eat. We give her lots of supplements and stir in a calorine to help. But when she won't eat, she just won't eat. It is a constant struggle. Sometimes, when we are doing an activitiy she likes, we say she has to eat her snack plate first. We don't give her large quantities of anything as it just overwhelms her. We give lots of small snack plates. Interesting to hear someone else has those struggles too. As a Mom, it is very difficult as it is such a nurturing need for us to provide. Wishing you the best.........Paula
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Old 10-11-2005, 01:56 PM   #13
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Re: Not eating after seizures

For me, the texture of anything was repulsive, then add the smell, sight, and taste, and I'd literally go for weeks without real meals (still don't do 3/day), and throw away a lot of stuff. My metabolism adjusted fairly well- almost 2 years, and "only " lost 20 pounds, but fluids were more important. I just don't have a thirst mechanism to trigger wanting something to drink. Just an odd duck, I guess.

 
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