Our 48 year old daughter has been on depakote and lamictal for seizure control for over ten years. She is severely mentally handicapped and cannot tell us what is bothering her but she seems to be losing the ability to control her legs and at times simply cannot walk. I know from lurking on this forum that lamictal in particular can cause loss of leg control but her neuro doesn't seem to think that that is the cause. It's scaring us to death since she cannot crawl or walk any distance unless we hold her by the shoulders. The deteriation is not linear in that some days she walks fairly well yet may lose almost all control of her legs by the evening. Any ideas? She does have daily lennox gasteau type seizures.
Non verbal daughter losing physical control
- Thread starter ltritter
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julie wishes
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I'm sorry. This sounds hard. A fleeting thought... does she have any low back or disc problems? I have a low back injury and its like what you describe. One day fine the next painful. Or the next good all day, then by the evening exhaustion and pain again. Its sounds like your daughter may have inability where I have pain, so not sure I'm on the right track here. I don't know enough about the medications to answer that question specifically. I hope you figure it out soon. Let us know if you do. 
Thanks "Julie wishes". We are getting an MRI of the head and back in a couple of weeks and that should answer your suggestion. She's lost so much mobility so quickly and I know some on this forum have had that side effect from lamictal that I guess we are hoping for a simple fix..
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I'm on Lamictal myself, so I'm particularly concerned about the long-term effects. I've been on it for 4 years, and haven't yet noticed any joint or back pain. On http://www.askapatient.com/viewrati...e=LAMICTAL&PerPage=60&sort=timelength&order=0 a number of folks who have been on the medication for many years do mention back pain issues, so if the MRI comes up negative, I would ask her doctor again about whether Lamictal may be playing a role, and if there are other meds to try.
julie wishes
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Really? How does it cause back pain? Ugh 
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It's possible that the joint or back pain could be due to deterioration related to bone loss -- but this is just a guess. Unlike some of the other meds, Lamictal isn't associated with lowered calcium levels. On the other hand, there haven't been any research studies measuring bone densities in women taking Lamictal and comparing them to women who are not.
It's distressing, but the docs don't actually know that much about AED meds, or why they have the side effects they do. For the newer meds, long-term side effects haven't been well-studied. Lamictal has been out over 20 years, but I haven't read any studies discussing what can happen over time.
It's distressing, but the docs don't actually know that much about AED meds, or why they have the side effects they do. For the newer meds, long-term side effects haven't been well-studied. Lamictal has been out over 20 years, but I haven't read any studies discussing what can happen over time.
Rae1889
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When I was on Depakote (Valproate Acid) I lost all control of my legs. This is because the medication went toxic in my blood stream because of overdose on the hospitals part. They did a blood test and found out it was toxic and then took myself off and the problem was solved. So maybe head down to the doc and get a blood test to see whats up?
julie wishes
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Ugh you guys... this just isn't right. It upsets me so much to read these things. The problem is we have so few choices. Our docotrs should be our ally's.
The problem is we have so few choices. Our docotrs should be our ally's.Thanks for the comments on my daughter. She just had her 49th birthday and will have a skull and complete back MRI the end of July. She has been on Lamictal and Depakoke for at least 15 years and as mentioned its hard to determine if her walking and other problems are due to aging or the long term effects of the medicines. Will let you know when we have the results of the MRI. Thanks again, its been a long 49 years with her seizures never controlled and Drs wanting to treat only the seizures without regard to quality of live