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Epilepsy and Lupus (SLE)

Sat, 01/09/2016 - 15:09

My 10 year old son was diagnosed with childhood absence seizures when he was 8. This past August he was diagnosed with lupus (SLE). It has been very difficult for our family.  Our rhuematologist doesn't think the two diseases are related or that the lupus is drug-induced from seizure medications. I'm not too convinced. We ended up taking him off the seizure medication (ethosuximide) that was maybe causing the lupus like symptoms. His seizures are not well-controlled at this point as we are trying different meds ( keppra, lamictal and onfi). Nothing seems to work. I want to go back to the ethosuximide, but the neuro doesn't want to.  Still have not tried Depakote. I'm afraid of the side effects. His lupus symptoms have subsided and he's recovering very well. Was wondering if anyone has had a similar experience. 

Bernadette

 

Comments

So when hid doctors said they

Submitted by just_joe on Sun, 2016-01-10 - 11:08
So when hid doctors said they weren't related you went an took him off his medications. When a doctor is treating a patient any patient they need to tell the doctor of any and all medications the patient is taking, Which includes over the counter meds. The reason for that is so the patients meds do not counter those that they are taking. You were the one not convinced that they were not related. Did you go to college and take the courses and pass the tests and get a degree? I always question whether the meds will be countered. I do that because I hate taking meds and I take only those that will not counter the medications I know I need. My neurologist has never wanted to put me back on a medication I was taken off of. There are other medications out there and they all work. A medication that works for one person may not for the next and the same with dosages. As for side effects some people do get them. You can read posts about them not working. I have been in drug studies and know how those side effects get listed. We were to list anything different that day head ache, upset stomach and other things. I also know that the posts you see about the side effects are put out by 5-8% of the people taking it. So yo will not hear from the 92-95% of the people that are having no problems. How often did you have his meds changed? I ask that because seizure meds are not like aspirin where once taken it goes away after a few hours. If you see or hear about a side effect and it is in the first couple of weeks then let it be and understand that the neurologist prescribed a medication to be taken and it builds up un the body to get to the therapeutic level the neurologist wants. That time period is generally 4-6 weeks. After that the neurologist generally wants another visit to see how the meds are working. Without some time period on the medication he has no idea if that medication is working the way he is wanting it to. You listed several meds and in order to see if any of them were working right it would have taken close to a year. Two months to get the therapeutic levels set and 1-2 months to find out how many seizures have been reduced. If they were reduced a dosage change could have been all that was needed. Always ask questions and be honest about the number of seizures he has had. Dosage adjustments or coupling another medication with one he currently takes can help. I know. Been there done that. I have taken almost every medication listed on the neurologists list. Hey I wanted no seizures. Keppra reduced my seizures greatly. By adding Vimpat those seizures were changed to shorten the time in those seizures. I can have one while talking next to you and you would know nothing about it since now my seizures are a few seconds long. Ask questions and discuss things with all of his doctors. It was hard for my doctors to discuss things at times because they were associated with different hospitals but they did call from time to time. Which got things done and more results

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