Need help with epileptic son, please answer

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Aurora60
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Date Joined Jul 2006
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   Posted 2/2/2009 4:22 PM (GMT -7)   
I have posted before about my 35 yr old son who lives with me.  His seizures are under control due to a great neurologist and good meds.  He drives and has a decent job.  The problem is he has developed OCD and it takes him over 2 hrs in the morning to get ready for work.  He is always late with maybe the exception of 3 times.  He has had this job for 10 yrs. Before the OCD he would never, never have thought of being late. Now he takes a shower for at least 20-30 min and uses almost a whole bar of soap. He has become a germaphobe. I have talked to him till i'm blue in the face and nothing seems to help.  If this pattern continues he will lose his job and his health insurance. He also has learning disaiblilties so in this economy he is not likely to get another job. And he would probably have to go on medicaid and then he woulndn't have the good meds that control his seizures. How can I convince him to be on time or can I? He gets upset when I tell him his life will change drastically and he promises to do better but there are no results. His solution is to get up earlier. He gets up now at 5:15 AM and has to be at work at 8 AM. And work is only 10 min away. He thinks the solution is to get up at 4 AM but with epilepsy you need lots of sleep and he knows this.  If he keeps this up he won't be going to bed at all, just waiting to start the long process of getting dressed.  Please, please if you have any suggestions or ideas on what I can do to help I would be greatly appreciative. Thanks for listening to this long post.
 
Aurora

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 2/2/2009 11:26 PM (GMT -7)   
Hi, Aurora,
I'm kind of tired but will try to respond a bit. Who has diagnosed the OCD? Is your son seeing a psychiatrist and a good therapist - one who knows OCD? While epilepsy doesn't cause OCD, I don't think science knows everything about the connections in the brain. But there is help for OCD; meds are usually part of it and a good psychiatrist would need to work with his neurologist. Plus outpatient therapy to help your son maintain a functioning life. If he is diagnosed with a disability, the workplace may have to make reasonable accomodation for him - but this is a legal issue, and the devil is in the details. If your son isn't seeing professionals for help with the OCD, then it wouldn't look like he wasn doing everything he could. But if he is, they can all work together to get him protectiion under the Americans with Disabilities Act.

These are just some thoughts. Hope it helps. If you don't see me here and have a question you can find me on the CP forum!

PaLady

dabomb
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Date Joined Nov 2008
Total Posts : 18
   Posted 2/3/2009 1:03 AM (GMT -7)   
This may sound kinda stupid but i was watching an episoide of mtv's true life I have ocd, witch is something I think u should should watch, and a few people were one the show with different cases. one person saw a hipno theripast. the other saw a docter that got her to do things outside her comfort zone.idk i would look for the episode somewhere like youtube or walmart but i bet it would help. 

Aurora60
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Date Joined Jul 2006
Total Posts : 1249
   Posted 2/3/2009 11:02 AM (GMT -7)   

My son was diagnosed by an epilepsy specialist and neurologist.  He has had CBT and he said it didn't help him and now he refuses to see any therapist.  He will see the epilepsy counselor because I have told him he has to have help but he doesn't think she is a tradional therapist. He can't change his meds because what he is on is what controls his seizures. The OCD meds are ones that contribute to his seizures so only some type of therapy will work.  He just doesn't seem to accept that life changes and that I won't be here forever.  I am 63 and have had several serious health issues.  I think he is too afraid to face up to the future. So you can understand why I am so distsressed.  I am a believer that those who change do so by helping themselves but he thinks things will automatically change without him trying.  I am truly at the end of my rope. Thank you for trying to help me.

Aurora


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 2/3/2009 2:55 PM (GMT -7)   
Aurora,
I think you probably know this in your head (but accepting it in your heart is a different story!), but your son will need to face consequences of his choices at one point or another. What I might suggest - and please don't take this wrong - is for you to discuss this with a therapist who has some experience with OCD, but mostly someone who can help support you so that you aren't in any way enabling your son. Sort of a bit of "tough love" and I know that's not easy. Plus, you need to take care of yourself.

Your son sees the epilepsy counselor because something got through to him that he needs to; the same thing needs to happen with other resources for him, but it may not get through to him until he loses his job or something else happens. At the rate is he going , he likely won't keep his job unless it's an employer willing to make exceptions for him. It almost sounds like his OCD is getting worse. I've had a seizure disorder since I was 14, and now that I also have chronic pain I'm really seeing how medicaiton interations, and medication that impact seizure threshold, have become a problem where I never had one before. So I truly do understand it's not an easy thing to do. But I do know it will be important for your son to get the very best advice from an epileptologist and psychiatrist - perhaps you can find some that work together - who can see what combinations of medicaitons and treatments might be out there. CBT without meds for OCD can be difficult, because OCD is complicated. I've got some professional background (though I'm not giving professional advice here) but am not an OCD specialist. I'd see if you have a therapist in your area who specializes completely in OCD treatment. Also, some of what are called the "alphabet" therapies - like EMDR, TFT, EFT - MAY be helpful, but therapists have to get additional certifications in these. It's a bit different than talk therapy, but anyone doing them should also be a licensed therapist in a particular discipline - psychology, clinical social work, counseling, etc.

But my first thougnt is you getting some support for yourself.

Hope this helps a bit.

PaLady

Aurora60
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Date Joined Jul 2006
Total Posts : 1249
   Posted 2/3/2009 5:22 PM (GMT -7)   

Thank you Palady for your reply. I am looking for someone who specializes in treating OCD and I will try to work along with his neurologist to find the right person.  I live in a big city so there is lots of help if I can just find the right place.  As far as myself I do see a therapist and I do have a/d and anti anxiety meds.  I will also speak to my pdoc and see who she knows that treats OCD. I realize he may have to fail to get going on the right path. I just think it is(I hate to say this) so stupid to be late for work when you live 10 min away.  How can you get better than that.  If worse comes to worst I will have to place him in a home for disabled persons.  But please know I am trying the best I know how to solve this problem.  And again thank you for your support.  This is not a forum that offers much support.  I usually post on depression and I have tons of help on that one.  Take good care of yourself and let me know if I can help you sometime.

Many hugs,

Aurora


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 2/3/2009 6:03 PM (GMT -7)   
Aurora,
I think the first thing that may help you is to understand your son's behavior isn't rational, and can't be interpreted that way. OCD, while in part behavioral, also involves brain chemistry that makes it difficult to make the behavior changes. Because of the medication issue, it's not easy to correct that for your son. (and even without the epilepsy I've know parents just as frustrated with their OCD young adult children who are still living at home)

You really need someone who knows all the cutting edge treatments - first, the medications that might not interfere with the epilepsy, and someone who can do more than just basic CBT, although that's part of it. It very well may be that your son ends up with a defined disability, but that could be a good thing in some ways as he may get medical insurance, and some basic living support. But he also could continue to work as much as he's able. But please try to understand this isn't your fault, and that you can't cure it, as much as you understandably want to.

Please take care of yourself. It does sound like your son has a number of skills and that he may need to his hit bottom before he can make decisions for himself. It's actually tough for all of us to accept our bodies aren't working the way they're supposed to. As someone who's lived with a seizure disorder for over 40 years, I know the "oddness" (can't think of a better word) of knowing that your body periodically does things all by itself that all you can do it stand by and watch. My grand mal seizures have been under control for decades, but I do get minor jerking periodically, especially when I don't sleep well (which happened when I wasn't sleeping because of pain). Then I tried some pain meds that nearly caused another seizure, so had to stop them. OCD is kind of like that with the mind, I think (although I don't have firsthand experience with OCD). All of your sons urges aren't under his rational control, and he probably is confused about that himself.

Is there a major teaching hospital in your city that specializes in complicated cases? Because that's where you might find the right specialists in the same group. Epileptologists, neuropsychiatrists & psychologists, etc. and have your son get a thorough eval. so he could know his options. Then if he chooses not to take advantage of them, you need to let him experience the consequences. That's where you'll need support with your anxiety.

I hope this helps some.

Please remember to find me over at the chronic pain forum if needed!

PaLady

Aurora60
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Date Joined Jul 2006
Total Posts : 1249
   Posted 2/3/2009 7:06 PM (GMT -7)   

Hi Palady, My son's neurologist is an epilepsy specialist and is with a big teaching hospital here. I live in a very big city so I am not worried about finding the right people.  The epilepsy therapist I am working with right now has already explained to me that there is nothing rational about his behavior and that from his point of view can't understand this.  Everything to him is either black or white, there is no inbetween.  I have given him examples of what would happen if he didn't pick up a pair of socks before leaving the house.  I told him the socks would still be there and he could pick them up later. This of course sounds rational to you and me but he has his own way of doing things and he is having a hard time breaking these habits.  He was not like this 4 yrs. ago. He just started to worry about germs and cleanliness after his seizures went out of control over 4 yrs ago. But he has not had one since. He is just so afraid of having another one that he has developed these habits. And his neurologist has explained that he cannot guarantee that he will never have another seizure but he thinks if he is clean enough he won't have one. We have checked into diability insurance and he makes too much money (which isn't that much) and he doesn't qualify for disability.  And  he truly loves this job so he wouldn't want to have to give it up just to get a disability check.  At least he feels like a fairly normal person right now. He drives and goes out with friends. I just don't want his basic life to change for the worst. I am doing the best I can to get him help but realize that this won't happen overnight. I think we will eventually work this out but it just needs time. Also, he does have medical insurance, very good insurance but he will lose it if he loses his job. The neurologists at his hospital meet frequenrly to discuss his treatment and so far all agree he is on the best meds for him.  He is on the highest doses. He takes lamictal, keppra and zonegran. He was on prozac but it was determined that the prozac was a cause for seizure. He has frequent EEGs and they are clean so I think we are doing the best that has been advised. I do have professional help, a weekly therapist and a psychiatrist so I think I am well taken care of.Thanks again for your efforts.

Aurora


Daryl1
New Member


Date Joined Feb 2009
Total Posts : 14
   Posted 2/7/2009 12:46 AM (GMT -7)   
There is a type of cranial manipulation that reduced pressure of the cranial bones on the skull. In some cases it reduces the severity of seizures and in other cases it eliminates them altogether. You might want to check this out. Here is the link to the website.

http://www.nasalspecific.com/nasalspecific_002.htm

Daryl
I am recovering from Lymes, Fibromyalgia and Chronic Fatigue syndrome. I am interested in learning which natural remedies people are finding helpful. I became intolerant of antibiotics so I started using all sorts of herbal remedies and they helped some. Then, I started a concentrated plant and pancreatic enzyme program with Dr. Jenefer Huntoon in Seattle. This really moved me along the road to recovery so I want others to know about this enzyme approach. Dr. Huntoon might be able to consult with you by phone or possibly she could provide her protocol to your local doctor.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/7/2009 2:25 PM (GMT -7)   
Daryl,
This information on this link doesn't mention epilepsy or seizure disorders. It also doesn't reference any research regarding epilepsy. I don't want to get into any kind of argument here, but it doesn't appear in your signature you have epilepsy or a seizure disorder, so I don't know if you understand what many of us go through.

PaLady
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