difficult child manic after right temporal lobectomy

Discussion in 'General Parenting' started by liltreasures, Mar 25, 2008.

  1. liltreasures

    liltreasures LilTreasures

    This is my first time posting on this forum. I was wondering if anybody has input about our situation.

    In Sept. 2006, our difficult child, who was 13 at the time, had a temporal lobectomy to remove the seizure focus. The surgery appears to have been successful. Before then, he was already developmentally disabled (at about kindergarten level) and an active, silly boy.

    After the surgery he began having laughing fits, noisily demonstrated attention-seeking behavior, and became overly focused in his new obsession: calendars. Before the surgery, he was focused and learning. He connected with us, giving us hugs. He was interested in SpongeBob, Dora, and watching movies/TV.

    Three months after the surgery, I realized that it wasn't getting better. Only worse. We were without a pediatrician. neurologist at the time, so we went to the psychiatrist. He tried his very best to help. difficult child was still on Keppra and Trileptal from before. psychiatrist rx'd Prozac, Clonidine, Tenex, and even gave Focalin a try (with scary results). The medications weren't helping, only making him drugged and thin.

    We finally got a new pediatrician. neurologist last June. He prescribed Abilify 5mg twice a day. Next, we weaned difficult child off Keppra. By this time, his freshman year in high school with new teachers had begun. He started out managable, but as soon as we switched from liquid Trileptal to tablet (with a .1ml dosage drop), he started having crying episodes that would escalate into screaming rages (difficult child broke his bedroom window with his fist). Neuro rx'd Depakote, and immediately difficult child began wetting bed, eating constantly, and needing naps. The Depakote helped a little, but not enough. After three months of washing sheets constantly, the doctor reluctantly agreed to Difficult Child the Depakote two weeks ago. This is the first time difficult child has been off an AED in 12 years.

    So...here's where we are. difficult child is on Abilify 10mg twice day. He still has laughing fits. This week he has raged twice at the store (because we said "no"). He was suspended from school twice two weeks ago because he hit teachers/peers. He's not aggressive, just agitated.

    I'm wondering if there is a medication that could help him or if this is just the way it will be because of the surgery.
  2. smallworld

    smallworld Moderator

    Welcome! I'm glad you found us, but sorry you needed to.

    Do you have a children's or university teaching hospital within driving distance? My thought is that you would be able to find top-notch neuro specialists there to help you out with this difficult situation. I'm guessing that you might want to seek out a behavioral neurologist (there is such a specialty) to figure things out.

    The irony is that mania, when not caused by brain surgery, is treated with anticonvulsant/mood stabilizers (Lamictal, Trileptal, Tegretol, Depakote) and Lithium, which is a mood stabilizer but not an anticonvulsant PLUS atypical antipsychotics like Abilify. Is there any way you could go back to liquid Trileptal if that was helping more? Can you switch to another atypical antipsychotic like Seroquel or Zyprexa? Most of us have had to do a trial-and-error process until we hit on the right medication combo.

    I'm sorry you're struggling so. Hang in there.
  3. sandman3

    sandman3 New Member

    Hi and welcome. I would agree with both suggestions made by smallworld. I think a Major Medical Center/Children's Hospital/Teaching Hospital could help you a great deal. The medications are a tricky bit....some work with some kids and others don't.....It is an unfortunate and frustrating trial and error situation, but you can get through it and it is worth it in the end.

    MY difficult child 2 just spent time at a Major University/Teaching Hospital, and with their help, he is sooooooo much more manageable now than he ever was. It was the tweaking and fine tuning of the medications with constant medical supervision that did the trick, something that I would never have been able to do at home on my own without completely losing my mind!
  4. liltreasures

    liltreasures LilTreasures

    We used to go to the MIND Institute (UC Davis, about 1 1/2 hours away), but 8 years had passed with-o any testing and continued seizures. We happened upon an adult epileptologist who felt difficult child would be a good candidate for surgery. Within three months, he had had an MRI, PET scan, and been in the EMU (epilepsy monitoring unit) through the Sutter Neuroscience Institute. difficult child really loved the Sutter hospital/people.

    When the neurosurgeon showed us the MRI, I was totally shocked. The right temporal lobe was now smooth and completely non functioning, not at all the way it looked when he was 4.

    The pediatrician. neuro (Sutter Neuroscience Inst.) is also on the American Board of Psychiatrists, so I'm hoping that means he has experience on the psychiatry end of things. We will see him next month to rehash the medication issues. He didn't see difficult child before the surgery, so he is having to start from scratch. I plan to ask him about revisiting the Trileptal.

    I forgot to say that when difficult child was younger (7?) we tried Risperdal and Zyprexa and both times he had ocular gyric crisis. So when the Abilify was suggested, I was tentative about giving it to him. But he seems to be fine.
  5. slsh

    slsh member since 1999

    Hi and welcome - glad you found us.

    Based on absolutely no knowledge about this kind of situation at all, I would head back to neurosurgeon and get his input. Since this seems to be a direct result of the surgery, I kinda would think he'd be the one with possibly experience with this?

    Is there a reason neuro won't go back to liquid Trileptal?

    Again, welcome! Glad you found us!
  6. Star*

    Star* call 911........call 911

    Hi and welcome,

    Im curious - why didn't they try Topamax for the seizures before the lobectomy?

    You sound like a very brave Mom to have endured and battled for your child. I'm glad you found us.

    Another question - are you assuming that removal of the lobe has 'caused' his behavior problems? I'm trying to understand because I just have absolutely no advice. Even if the brain was intact, some of the mood medications aren't effective so I can see where if he is missing that portion of his brain now where you would have difficulty finding the best medications to suit your sons unique situation.

    I'm sorry I'm not able to hand over any advice that I think would be of help. Maybe check into a Traumatic Brain Injury (TBI) web site??? I know it's not an injury - but maybe there would be some help with those folks?

    You have my deepest respect.
    Hugs for you and your beautiful son
  7. liltreasures

    liltreasures LilTreasures

    The pediatrician neuro seemed just as unfamiliar with this situation as the epileptologist did (who gave us the referral to the neuro). Along with part of the lobe, they removed a part of the hippocampus and amygdala, too. I believe these areas are attached, so unavoidable, or maybe destroyed by the epilepsy, too.

    But here's the neuro's theory. There is a chemical released in the brain during a seizure. He believes that when we took away his seizures, we took away the chemical that was keeping him in a, so-too-speak, sedated state. And now we are seeing difficult child for who he really is.

    His seizure type was Complex Partial with Secondary Generalization. They occurred one day every 4 weeks, with 6-8 during that one day. I figured out that he had missed the equivalent to an entire year of schooling from seizures. I watched him throughout the day and night to make sure he didn't smother.

    We tried Tegretol, Carbatrol, Depakote, Keppra, and Trileptal to no avail. He went into status four times; twice at home, once in the EMU, and for a grand finale, once 6 weeks after his surgery.

    Our other option was the VNS (vagul nerve stimulator). When I did research about lobectomies, all I found was positive outcomes. It wasn't until afterwards that I found the forums with people who had had negative outcomes. (I had to try to find out what it was like for other people because difficult child doesn't communicate how he feels).

    I know I've covered a lot on this thread. I ended up here because I had questions about medications that might help difficult child be less agitated at school. And I know how helpful/informative parents are. So thanks for enduring my long posts.
  8. Star*

    Star* call 911........call 911

    OMG you haven't been around here so your "long" thread in comparison to one of my rants is very minimal. The forum here is HERE just for the reason you came so don't feel you ever have to apologize. You have a child, you are a Mother - you are doing all in your power to help him and I think that is fantastic.

    Finding an answer may be a little harder - but that is what we warrior Moms do - we are the energizer bunnies of the mental health world.

    I think we all would like to know what makes our children less aggressive. Lord knows with mine we tried 64 medications in 11 years. He now refers to himself as the Human Guinea Pig when medications are mentioned. It usually shuts a psychiatrist right up. The reason I'm hesitant to say or list any medications is because with my son most of the medications that we were told would help with impulse control, aggression and the like made him angrier and MORE aggressive. Even some SSRI's did the same.

    The last medicine that was recommended for him was lithium. My son said NO WAY - and refused to take it. He's still aggressive, but therapy with activities, and a new environment have seemed to help him. He's at a Therapeutic Foster Home (TFH).

    I would suggest while you are on your quest for the right medication or combinations of medications that you look into someone who teaches realaxation techniques. Some YMCA's have water therapy for kids. Some therapists could recommend play therapy. That may be good for him since he is emotionally at kindergarten level. My son is 17 and I can tell you that he's been 3-5 years behind. His life experiences as a young child made him an emotional wreck. In your sons case - surgery altered parts of his brain.

    I'm really floored though - WHERE is the emotional support from the doctor that recommended this surgery and the after-care suport? I think I would be knocking on a few doors and doing more than being nice. I belive in my humble opinion that this man OWES YOUR SON follow up care. I don't know how anyone can offer brain altering surgery and then just leave you to figure stuff out. I'm so sorry for that.

  9. Fran

    Fran Former desparate mom

    Welcome liltreasures. Sounds like you have done a lot of homework and gone through some pretty scary medical stuff.
    If you are asking about medications for difficult child's mood hike, Lithium is supposed to be first line medication. Once the mood is stabilized they add other medications.

    Being a veteran of a difficult child who had febrile convulsion (4 before the age of 2) and a easy child who developed seizures at 15 and had a craniotomy at 16 for a cyst, I know how terrifying and dangerous it can be. I don't really know much about a lobectomy unfortunately.

    Seems there should be a consensus and discussion between the neurosurgeon, epileptologist and pediatrician psychiatrist so that everyone can be on the same page and provide your son with a comprehensive treatment plan for seizure prevention, behavior support and educational support.

    I have heard great things about the research at M.I.N.D. institute but don't know much else about it.

    Glad you came to our forums. Hope we can help or at the least offer some support.
  10. Star*

    Star* call 911........call 911

  11. Fran

    Fran Former desparate mom

    liltreasure, I wanted to suggest putting together a Parent Report. It is one of the tools that a member or two put together to keep complicated history's of our kids more organized. Your guy is complex and I think it would be a wonderful tool for you, the school district and the doctors. You just print it off when you go to a new Doctor or to a School meeting.(you can pick and choose what you want the school to know, like family history)

    Hope this works as a useful tool. Every parent of a difficult child should have one of these done.

    Parent Input and Assessment
    by Jerri/updated by Wildflower

    Parent Report and Assessment for [Name of Child, Date of Birth]

    Prepared by:
    [Name of Parents/Caregivers]

    [Photo of Child]

    Table of Contents:
    1. Introduction to [Name of Child]
    2. Family History
    3. Medical History
    4. Mental/Emotional History
    5. Social History
    6. Scholastic History
    7. Assessment History
    8. Interventions - Past and Present
    9. Concerns - Present and Future
    10. Aspirations


    Do not try to write this all in one sitting. Start with one area of the document and work your way through, one item at a time.

    Gather all of the assessments, reports, report cards, journals, baby books and any other support documents into one folder/box so that you have easy access to the information while writing this report.

    Be mindful that the information will be part of the file/permanent record either at the doctor's office and or the school. Present the information clearly and as objectively as possible.

    The inclusion of your child's photograph lends a "face to the name" and personalizes the report even further.

    Introduction to [Name of Child]
    Describe what your child looks like, who he/she is, what his/her likes and dislikes are. This is meant to be a positive overview of your child.
    List what your child's strengths are in the home, the school, the community, and within him/herself.

    Family History
    Family: Start with whom your child lives with (parents, grandparents, siblings, etc.). When introducing the immediate family, indicate what their jobs are, what their interests are, any awards won, challenges they face, and what their relationship is like with your child, etc. You are trying to provide a picture of the influences in your child's life. Information about length of marriage, divorce, deaths in the family are important to address.
    Pets: List the number and type of pets you have and your child's relationship to them, how your child treats them.
    Values: Indicate what your family values are in relation to church, community involvement, volunteer work etc.
    Concerns: If you have concerns about your home, bring them up only slightly here.

    Medical History
    Start with the pregnancy of your child. What complications, if any, were noted? § Describe the delivery, birth weight, and any issues of concern surrounding the birth process.
    List any developmental delays.
    List immunizations and any reactions noted related to them.
    List any infections (example: ear), illnesses (chicken pox), injuries, broken bones, stitches, etc.
    List any medications prescribed over the course of your child's life.
    List any previous hospitalizations (physical/mental) your child has had.

    Mental/Emotional History
    List Family Medical History, in particular, any known disorders such as Bi-polar, Depression, Asperger's Syndrome, Nonverbal Learning Disorder, Attention Deficit Disorder/Attention Deficit with Hyperactivity Disorder, Dyslexia, etc.
    If any assessments have been documented, note briefly what the outcome of the assessment(s) has been. There is a section devoted to Assessment History that will provide this in detail.

    Social History
    Describe how your child developed socially: were they eager to play with other children, how did they respond, did they have playmates, were they invited to parties, etc.
    Describe any relevant social family information here as well. This would include moves to other locations, divorce, major family upsets, etc. This is the place to frame your family's social history in the light you want it viewed.
    Describe any relevant information regarding interventions with police or other law enforcement.

    Scholastic History
    List the grade level of your child and schools attended.
    Note any awards or academic achievements your child has received.
    Note any difficulties your child has experienced in school (bullying, exclusion, grade failures, etc.).
    If any tutors have been provided, list the subject area and duration.
    If you have an Individual Education Plan (IEP), include it here.

    Assessment History
    Provide any assessments that have been documented.

    Interventions - Past and Present
    Note behavior modification plans, if they worked or not.
    List all medical, dietary, natural remedies that have been utilized and note which worked and which didn't.
    If therapy has been tried, list the outcome and whether or not it was of any benefit.
    If you are using or have used - a methodology (such as the Riley Method, Explosive Child/Basket Method, 1-2-3 Magic, etc.) make note of it.
    Mention the resources you have found and tried, or wish you could try. Things such as biofeedback, music therapy, art therapy, summer camps, etc.

    Concerns - Present and Future
    What is troubling you about your child's behavior at present (education, social life, spiritual life, home life, etc.)?
    What are your concerns about it?
    What are your worries for the future? Why?
    List what your child's weaknesses are in the home, the school, the community and within him/herself.

    Allow yourself to sit back and dream of the life you want with and for your child. Be as specific as possible (enjoy mealtimes, outings, etc.).
    How you would like your difficult child to experience life.