My son is almost 5 years old and a year ago was diagnosed with a myoclonic seizure disorder. He has a PDD-NOS diagnosis that doesn't quite fit him. He is very social. He has a huge language delay and some sensory issues. Anyway, he was almost typical after 4 months on Depakote and in an integrated preschool class.
During the summer we slowly saw his behavior and attention regress. At the same time he grew 4 inches and 5 pounds and his depakene levels went from 93 to 66. When he started school in September (after a terrible summer program) his teacher noticed he was not his normal self. We upped his medication since the levels were low. Now it is 3 weeks later and 2 colds later and he has had a handful of good days at school. We are seeing glimpses of him. He is still very impulsive, quick to have a tantrum, his sensory needs are high and he is not his normal self all of the time.
I spoke to the neurologist again and he is increasing his dose again. He was not very surprised I called back. So, after all this, my question is is a regression in behavior and attention a sign that there may be more seizure activity? Has anyone experienced anything like this? There are so many factors (new school year, sicknesses, medicine, bad summer program with no services), I don't know what to do. I just want him to get back to where he was. The good news is he did not regress with any other skills. It is so frustrating to me and his teacher because we know his potential.
Thanks for any help!
Welcome Amy!
Thank you so much for your story. I can tell how frustrated you are not knowing what is happening. It is true there are so many little things that can trigger seizures. Whenever Adam had a cold, he went down hill for sure. Summer is also a crazy time because they are completely out of their routine, probably snacking more and staying up later.
With Adam, I strongly felt that the medications affected his behavior. It is the first time I have been asked if a higher dose is required and could be responsible for the problems you are seeing. I just do not know.
I have a suggestion that I think can help your son. You mentioned that he has a PDD-NOS diagnosis (pervasive development disorder not otherwise specified) which is usually mild and may mimic some autistic tendancies. About 25% of kids with epilepsy have some autistic tendancies.
I strongly recommend that you listen to my podcast with Dr. Swingle as he works with kids with all types of brain issues. Your son may be a good candidate for neurotherapy and it could improve his abilities to learn, remember and manage his senses. The treatment results were incredible for Adam. Please listen to the podcast.
I wish you well with your son. Please consider the ketogenic diet as well as another option for controlling his seizures. There are some wonderful treatments out there that you may not have heard of.
Please keep us posted.
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com
Increase of Medication
Hi Arlene,
Thank you so much for your response. As per our neurologist after trying a small increase of Depakote that did not work we then increased the dose to double the original (only 500 mg total for the day). Anyway, this last week was like a miracle, his teacher and I are now totally convinced it was the medication. All his autistic like tendencies that we had not seen for so long almost disappeared again. I will definitely listen to the podcast you mentioned as we still have many other issues to work on. I also have been looking into the ketogenic diet as well. We do have an appointment with a nutritionist next week to actually focus on his increased eating habits on the Depakote.
Thanks again for all your help,
Amy
Hi Amy
I was reading your post and am glad you are making progress. A friend of mine had a similar experience with a different medication. There can be so many effects from medications... Thanks for the update, it great to read everyone's progress. Amber Kane