Results 1 to 5 of 5

Thread: DVA(Developmental Venous Anomaly)

  1. #1
    New Community Member
    Join Date
    May 2013
    Location
    Ohio
    Posts
    7

    Default DVA(Developmental Venous Anomaly)

    Hello.....
    Just an update on my sons condition. His 2nd MRI showed a Developmental Venous Anomaly. Neurologist told us that not a whole lot is known about these. Has anyone on here ever heard of these? And have they ever caused you to have seizures? My son is a generally healthy 12 yr old who began having gelastic seizures. He is currently on Keppra and Trileptal. Any info would be appreciated. Thanks so much!

    Jess.

  2. #2
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Jess, I have no experience with this which prompted me ot look it up. I'm sure you've done the same. What experience I can share with you is that my daughter has a very rare brain disease called moyamoya. I found that the best thing I could do for her was to find an expert in this particular disease. All Dr.s seem to be very micro specialized now so with the internet it's easy to find and contact a dr. Most will be willing ot look at scans and offer their opinion and advice and if close enough and convenient for you see your son. When I looked quick I found this hospital claimed to be experts. http://www.childrenshospital.vanderb...s.php?mid=9178
    Further investigations may find others that may be more convenient. This may be a place to start and they may even be able to reccomend another, especially since your son is having seizures. I hope you can get some answers.Please keep us posted.
    Mary Grace

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,037
    Blog Entries
    1

    Default

    ((((((Jess))))))

    Like Mary, I am unfamiliar with DVA's, so I also looked it up. From my brief reading on it, it appears that there is no treatment for DVA per se, only for the symptoms, such as seizures.

    Is your son seeing a pediatric epileptologist? Perhaps you could do a search for one in your area, if he isn't seeing one. These docs are experts in epilepsy in children.

    Has your son had an improvement in his seizures on the Keppra and Trileptal? I hope they are lessening.

    Sending healing energy your way ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  4. #4
    New Community Member
    Join Date
    May 2013
    Location
    Ohio
    Posts
    7

    Default

    Rose,

    Thanks for taking a few minutes to look up the info on DVA's. I aslo read a lil about them, coming up with the same as u. I'm just really confused at this point. My son has been seeing a neurologist since being diagnosed. I think his doctor has been sharing info with a pediatric epileptologist, but cant be for sure. He will be going for a 5 day video EEG in Sept, in the epilepsy center at the hospital. Hopefully, we can get a better idea of whats going on. As far as the meds, we haven't had much luck. He is still having seizures thru the night. He is going for a blood test Sunday to check his levels. We still have a lil room to increase the dosage if need be. Im just a lil worried its too much meds for his body to handle. Ugh. Everyday I worry about him. The word SUDEP keeps taking over my life. I feel very discouraged.

    Jess

  5. #5
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,037
    Blog Entries
    1

    Default

    ((((((Jess))))))

    Intractable seizures can be so frightening and enormously frustrating. Many of us here can relate well to what you and your son are going through, including the fear of SUDEP.

    I Googled SUDEP and gelastic seizures and found a blog with a link to another blog, which has a list of seizure protection and prediction devices. Perhaps having one of these devices would be helpful for you and your son:

    http://www.dannydid.org/sudep/devices-technology/

    Blood levels give you an indication of how your son's system is utilizing the medications, and if he is seizing frequently, his system may be gobbling up those meds. On the other hand, if he's not metabolizing his meds properly, his meds could be building up in his system. Also, seizure meds can sometimes have the opposite effect of creating increased seizures, increased duration of seizures, and different seizure types.

    Most of us here with children, who have epilepsy, have experienced trials with a long list of different meds. Weaning off of one med and onto another is fairly common. If the Keppra and Trileptal are not working, the neuro may suggest other meds. You may have to try a variety of combinations to find the one, which is most effective. That can be scary and frustrating too, but it's worth it, if you can land on the right med(s) to control the seizures.

    I hope the video EEG in September will provide the neuro with more information to help your son. Meanwhile, stick with us here, and join in our conversations. We'd love to get to know you and your son better.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.