Suggestions for my 5 year old daughter

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Hey everybody my 5 year old daughter has been struggling since birth with seizures since a birth injury of hypoxia causing brain damage, developmental delays, seizures, and horrible behavior issues which is what i mostly believe to be from the medications. Her type of seizures are partial She has tried keto diet keppra, lamictal, trileptol, phenobarb, onfi, depakoate, medical marijuana, and is currently on dilantin vimpat and zonegran but the zonegran is being taken away due to just starting and behavior has been out of control. We also rasied money and are working on getting her a service dog She doesnt speak more than 2 or 3 words and goes to school and does alot of therapy for her delays speech, ot, pt etc. She has consitently has breakthrough seizures every week or so that come in clusters and cant seem to find any successful medication to stop them and they all seem to cause worse side effects either toxic or making her extremely aggressive on top of her already bad behavior and has been to multiple drs. I really dont know what Any suggestions or advice on Medications for partial seizures, a dr to consult we are in north jersey nyc area b else to do with medication and what to do about the behavior which seems to be worse than the seizures. but I will fly to the other side of the world, what do do about horrible self injurious destructive behavior and developmental help It would be greatly appreciated

Comments

Nickvinci3,Wow, I'm sorry to

Submitted by birdman on Thu, 2018-10-11 - 21:40

Nickvinci3,Wow, I'm sorry to read of such a tough situation. It sounds similar to what my mother described of me only your daughter's situation sounds more extreme. I cannot measure to what extent our behavior problems differ, but I didn't have as many seizures as she does. But I do remember the uncontrollable anger I had as a child through my teens. I complained, "I can't control my anger" to medical professionals. Mother and I too noticed that it seemed linked to my epilepsy and its treatment. It got worse and then a seizure would happen and I would be more relaxed for several weeks. More medications made my behavior worse. Doctors all assured us that there was no chance that the meds and seizures had anything to do with my mood and behavior. It was hard on me as I felt guilt for not trying hard enough to control myself, and mom tells of hurt feelings as professionals seemed to investigate her and dad as if their bad parenting may have been to blame. It wasn't until the early 1990's that an epilepsy specialist (the first "epileptologist" I had seen for my epilepsy) admitted that they were starting to notice that some people with my epilepsy had emotional problems that are linked to epilepsy. I don't know if there just is no proof but I have read about Landolt's theory (from the 1950's?) of Forced Normalization (aka paradoxical normalization) which describes that some persons with epilepsy have increased psychiatric problems with increased seizure control. If it is true that leaves some of us with this horrible choice of seizures vs ugly psychiatric and / or mood problems.I hope your daughter is able to see an epilepsy specialist. We cannot do without medication, but I still believe that the risks of surgical treatments are not as severe as the risks and trauma that comes from years of mood and behavioral problems. I hope a specialist can lead your daughter toward better therapy. It will be a long journey, but take advantage of the learning experience. Keep good track of medications, side effects, and seizures. Use this information to take control and insist upon alternative treatment.

Nickvinci3,Wow, I'm sorry to read of such a tough situation.  It sounds similar to what my mother described of me only your daughter's situation sounds more extreme.  I cannot measure to what extent our behavior problems differ, but I didn't have as many seizures as she does.  But I do remember the uncontrollable anger I had as a child through my teens. I complained, "I can't control my anger" to medical professionals.  Mother and I too noticed that it seemed linked to my epilepsy and its treatment.  It got worse and then a seizure would happen and I would be more relaxed for several weeks.  More medications made my behavior worse.  Doctors all assured us that there was no chance that the meds and seizures had anything to do with my mood and behavior.  It was hard on me as I felt guilt for not trying hard enough to control myself, and mom tells of hurt feelings as professionals seemed to investigate her and dad as if their bad parenting may have been to blame.  It wasn't until the early 1990's that an epilepsy specialist (the first "epileptologist"  I had seen for my epilepsy) admitted that they were starting to notice that some people with my epilepsy had emotional problems that are linked to epilepsy.  I don't know if there just is no proof but I have read about Landolt's theory (from the 1950's?) of Forced Normalization (aka paradoxical normalization) which describes that some persons with epilepsy have increased psychiatric problems with increased seizure control.  If it is true that leaves some of us with this horrible choice of seizures vs ugly psychiatric and / or mood problems.I hope your daughter is able to see an epilepsy specialist.  We cannot do without medication, but I still believe that the risks of surgical treatments are not as severe as the risks and trauma that comes from years of mood and behavioral problems.  I hope a specialist can lead your daughter toward better therapy.  It will be a long journey, but take advantage of the learning experience.  Keep good track of medications, side effects, and seizures.  Use this information to take control and insist upon alternative treatment.

Nickvinci3,Wow, I'm sorry to read of such a tough situation. It sounds similar to what my mother described of me only your daughter's situation sounds more extreme. I cannot measure to what extent our behavior problems differ, but I didn't have as many seizures as she does. But I do remember the uncontrollable anger I had as a child through my teens. I complained, "I can't control my anger" to medical professionals. Mother and I too noticed that it seemed linked to my epilepsy and its treatment. It got worse and then a seizure would happen and I would be more relaxed for several weeks. More medications made my behavior worse. Doctors all assured us that there was no chance that the meds and seizures had anything to do with my mood and behavior. It was hard on me as I felt guilt for not trying hard enough to control myself, and mom tells of hurt feelings as professionals seemed to investigate her and dad as if their bad parenting may have been to blame. It wasn't until the early 1990's that an epilepsy specialist (the first "epileptologist" I had seen for my epilepsy) admitted that they were starting to notice that some people with my epilepsy had emotional problems that are linked to epilepsy. I don't know if there just is no proof but I have read about Landolt's theory (from the 1950's?) of Forced Normalization (aka paradoxical normalization) which describes that some persons with epilepsy have increased psychiatric problems with increased seizure control. If it is true that leaves some of us with this horrible choice of seizures vs ugly psychiatric and / or mood problems.I hope your daughter is able to see an epilepsy specialist. We cannot do without medication, but I still believe that the risks of surgical treatments are not as severe as the risks and trauma that comes from years of mood and behavioral problems. I hope a specialist can lead your daughter toward better therapy. It will be a long journey, but take advantage of the learning experience. Keep good track of medications, side effects, and seizures. Use this information to take control and insist upon alternative treatment.

Hello, as a parent with an

Submitted by Semperfi268_5a6bcd71c42c5 on Fri, 2018-10-12 - 15:27

Hello, as a parent with an adult child that has epilepsy and other chronic health issues, watching your child suffer is heartbreaking, especially when we can’t fix it. My son is 23 and fortunately right now he is doing pretty good. Look into The Undiagnosed Diseases Network. If you get excepted there is no guarantee that they will be able to help, however we exhausted all our local drs. we live in NJ too. In Monmouth County. Our neurologist is in Neptune NJ. When my son was 1st diagnosed with epilepsy we did go to Dr. Orrin Devinsky for a 2nd opinion. He has an office in Livingston NJ and in Ny. https://www.epilepsy.com/living-epilepsy/about-foundation/our-editors/orrin-devinsky-mdhttps://undiagnosed.hms.harvard.edu/Hope this helps!

My mother always told the

Submitted by birdman on Mon, 2018-10-22 - 20:25

My mother always told the doctor that my behavior was like a spring getting tightened up and then the seizure would happen and I was calmer for many weeks after as the spring wound up again.