JustLurkin
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Post by JustLurkin on Sept 16, 2011 8:05:37 GMT -5
Anyone have them? My son has been having them for about a year. The doctors say they will "probably" end when Republicanrty is over. He's on his third medication and they've all caused problems with aggression. For some reason, his doctor doesn't want to change the most recent medication--we have an appointment for a 2nd opinion coming up. Actually, when I was calling around for the 2nd opinion, most doctors didn't have appointments available for 4-5 month The only reason we have this appointment is because it's a residents clinic--I will probably pray for the earth to swallow me up if his doctor is the one presenting the case! I think I'm rambling. Anyway, my son doesn't talk (but functions fine otherwise), so I can't really ask him--do you have a headache or anything after a seizure? Is there anything you'd like people to know about your seizures? The first time he had a grand mal I freaked out, I read somewhere not to that because the person is aware of that, so make more of a conscious effort to hold myself together. I also had a friend suggest I try a regular neurologist instead of a pediatric neurologist in the future so I can make appointments easier. Does it matter which you see at 15? All of the neurologic testing he's ever had has come back normal. Thanks. ETA...i wrote "p-u-b-e-r-t-y" not Republicanrty
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mmhmm
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Post by mmhmm on Sept 16, 2011 8:19:45 GMT -5
If your son is 15, Just, he can see either an adult neurologist or a pediatric neurologist. You say he doesn't speak. Has it always been that way, or did he speak at one time, then stop speaking? Is he able to use sign language, or to write his answers to questions? Was there any specific event that happened prior to the beginning of these seizures?
Side effects to anti-seizure medications aren't unusual, and aggression is one of those side-effects. Sometimes, a change in medication will help, sometimes it won't. Sometimes, adding an additional medication will help. Does your son take a Vitamin B supplement? This is sometimes helpful for these situations and is something to discuss with his doctor. Vitamin B6 is especially important, but a good multi-B supplement is great.
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Deleted
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Post by Deleted on Sept 16, 2011 9:05:29 GMT -5
Yes, there can be extremely bad headaches after experiencing a seizure.. Many times, if not every time, the patient is very sleepy and tired for a few days following their seizure..
Don't feel bad for the freak-out from witnessing someone having a seizure.. That is a normal response. From what I've experienced, the person having the seizure, most times don't know they had one.. But, if you ask them how they felt prior to the seizure they will be able to back track and remember how they felt.. This is so vital, because this will be their warning to lie on the floor and away from anything that could harm them when alone if in seizure..
If you are near anyone in seizure, move anything away from their area that would cause harm to the person..
Above all, ask your son to give attention to the indicators of an oncoming seizure so he can protect himself..
I wish you and your son well and hope your son reconsider a change in medication..
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JustLurkin
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Post by JustLurkin on Sept 16, 2011 9:26:41 GMT -5
He has autism, so doesn't speak. He does sleep for a very long time after a seizure, which is fine. I just didn't know if I should wake him and give him aspirin or tylenol so he feels "ok" when he wakes up. He uses vitamin supplements to treat the autism symptoms, which includes large doses of B6, and they did increase that when I reported the seizures.
I just brought that up for the "Why don't you just ask him?" questions. haha. And to say the seizures is the only reason he sees a neurologist, he doesn't see one on a regular basis because the tests are always normal. Even the tests relating to the seizures are normal. It's hard for him to answer questions like "How do you feel?" He can answer other stuff like "Who's the president" or "What year did Columbus sail".
I think he does pretty well with separating himself before a seizure. He doesn't always grand mal, sometimes he just gets this weird far away look, or will start to drool and I know it's happening.
We have to have the medication changed, or something added...if they don't change it he has to leave. He's 15 and bigger than me, I can't have a bunch of aggression in the house.
Thanks.
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Post by Deleted on Sept 16, 2011 9:40:04 GMT -5
Oh, that is so good you are able to recognize the onset of your son's seizure.. I imagine it must be so frustrating not being able to communicate with him like you'd like to. Aggression is also his way of expressing frustration too, maybe? It's the one way he can illustrate to you he doesn't want his meds to look different? Can the doctor prescribe a change of meds that look similar to what he already has.. Or a placebo of the same and do an add on with the new? Gosh, my heart goes out to you. I wish you well.
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mmhmm
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Post by mmhmm on Sept 16, 2011 10:12:16 GMT -5
Thanks for explaining, Just. From what you'd written, I suspected autism, but didn't want to jump to a conclusion. You, and he, have got a double-barreled problem, that's for sure. Being unable to express what he feels, and thinks, has got to be so very frustrating for him, and for you. Hopefully, the neurologist you're going to see will be able to shed some light on some of this for you and offer alternative, or additional medications to help the boy cope. It's a rough road you travel, both of you, and you have my admiration!
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saveinla
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Post by saveinla on Sept 16, 2011 10:32:31 GMT -5
You will also need to check his mouth after the seizures and make sure he has not bitten his tongue or the inside of the mouth. That happens sometimes. They are really tired and need to sleep for a couple of days just to regain some semblance of normalcy.
My sister has them and they don't have any explanation. It started for her when she was around 20, but she does not have them frequently - maybe once every 3 to 4 years. It happens if she neglects her medication and is really run down and tired. Hope you find a great doctor to help you.
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Post by Deleted on Sept 16, 2011 10:38:24 GMT -5
Just Lurkin - the internet is an awesome tool - look up siezure meds and find the list of meds that include the ones he has been on. Review all the side effects. You may find that there are some that induce less aggression. There is so much pharma that Doctors don't always know all the alternatives, so you need to be the investigator. The other option is to go to your local pharmacist and talk to them about options. I have found the pharmacist to be extremely helpful on topics like this. So sorry that you son (and you) have to deal with such significant issues
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mmhmm
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Post by mmhmm on Sept 16, 2011 20:55:11 GMT -5
Pharmacists are definitely a valuable resource when looking into alternative medications for any condition. For anti-seizure medications, the side-effects are dependent on the individual. Some will react poorly to one drug while another of the same type will work fine. Like most drugs that act on the central nervous system, reactions are very individualized and it sometimes takes a few tries to find the medication that's right for a given individual.
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JustLurkin
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Post by JustLurkin on Dec 4, 2011 22:40:14 GMT -5
After having him on quite a few medications, they think he has been having seizures in his "behavior center" which is causing the rages, they have added a secondary medication he is doing much better.
Just wanted to follow up.
Thanks everyone for all your advice.
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JustLurkin
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Post by JustLurkin on Dec 5, 2011 8:45:48 GMT -5
Just learning here....are the seizures in any way related to the autism? There are articles saying seizures can start during puberty, and the rate is higher in the autistic population. The neurologist asked he go to a psychiatrist to help with the rages. The psychiatrist does not think it is related to his autism and looked at me like I sprouted a second head when I asked if they would stop when puberty finished. He said the relationship to puberty numbers are skewed because birth control can help stop the seizures in females so it looks as though the seizures stopped, but if/when they come off birth control they will likely start again, and of course males don't have that option. But, it's always hard for his doctors anyway because his autism isn't "classic" in that his autism is regression based--he used to speak and all his milestones were on time, and any tests and scans are generally normal. ETA: Several people mentioned ketogenic diet, I will have a look at that.
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Artemis Windsong
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Post by Artemis Windsong on Dec 8, 2011 13:19:51 GMT -5
Why cannot men take birth control pills if it stops the seizures?
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Post by fuzzylumpkins on Dec 16, 2011 1:49:45 GMT -5
I had epilepsy as a kid, it could be that your kiddo doesn't even realize he's having them.
I read somewhere that Fish Oil will help lessen the severity of the seizures. I can just tell you to AVOID Tegretol at all costs! It'll make your little boy into a zombie. I suffer from short term memory lose because of that crap. And it's been 20 years since I was on it!
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JustLurkin
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Post by JustLurkin on Jan 5, 2012 20:36:35 GMT -5
Sorry Fuzzy, didn't see your post. He's been on fish oil for a very long time, same with B12. He hasn't been on Tegretol, never even heard of it. He's on Topamax, but it's screwing with his appetite, so I'm going to ask them if we can give Trileptal another try. I've read they normally take kids off Topamax if it messes with their appetite because it can cause a growth stunt. When he was on the dose they wanted him on, he dropped 12 lbs in 4 weeks--not normal for a teen boy! So they cut the dose in half, and he did well for a long time...but has now started having a seizure every 6 weeks or so. That's also the reason he can't try the birth control--he's in the middle of puberty, you just don't mess with too many things. He's on a low dose--like I have to cut the pills into little pieces--of Risperdal for the aggression. Life has been great since he's been on that. And, he's still "himself", which is good--cause I like him! Still giving the Ketogenic thought.
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busymom
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Post by busymom on Jan 5, 2012 20:42:59 GMT -5
Any chance your son took a blow to the head, or fell & hit his head? The only reason I ask is I knew a girl who's never had seizures until she took a fall in junior high & hit her head.
I know from personal experience how frustrating autism is. Our youngest has it, & at times has trouble expressing his thoughts, especially when he's upset. <Hugs> for everything you're dealing with!
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Artemis Windsong
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Post by Artemis Windsong on Jan 29, 2012 16:43:10 GMT -5
OMG. My DD had a fainting episode in a grocery store and ended up hospitalized. The prevailing prognosis is a magnesium deficiency exacerbated by thyroid disease. DH found a wealth of information on magensium deficiency on the internet. He googled Magnesium and the Brain. This deficiency can be blamed for nearly every condition. The greatest news was is a good source. I dove into a bag of M&Ms. I hope this helps.
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