Not sure where to start

Discussion in 'General Parenting' started by MDL, Jan 30, 2009.

  1. MDL

    MDL New Member

    Hello, I'm a new member and have found this board through various Google searches for "temporal lobe seizures," "ODD," "Trifectal," etc.

    My son is 6.5 years old. He shows most (all?) signs of ODD and some of ADHD. He was a very easy baby and toddler and started to become incredibly stubborn, defiant, moody and difficult at about 2.5-3 years old.

    We have been called to school for his behavioral problems since his first year of preschool, and those problems have become worse with each year. He is now in the first grade. This year he has hit his teachers, thrown chairs, pulled things off walls, knocked things over, and been generally disruptive. He screams at us, other children and other adults. His standard meltdown barage is, "I HATE YOU, YOU'RE AN IDIOT, YOU'RE GOING MAD, I'M GOING TO KILL YOU!"

    About a month ago we took him to a Psychiatrist who specializes in neurological testing. She did an EEG and said that he is having seizures in his temporal lobes and that these seizures are disrupting the brain's ability to regulate his emotions. She recommends Trifectal.

    After that diagnosis I came home and did a ton of online research, and I can't find anything that substantiates her diagnosis. I've found a lot about temporal lobe seizures, but my son does not have absence seizures, he does not have visual disturbances, he does not smell things that are not there... he doesn't have a single symptom on the lists for temporal lobe seizures/epilepsy.

    A friend of mine is an MD and I asked her about all of this. She asked two friends of hers - a Psychiatrist and a Neurologist. This was her email back to me:

    Our pediatrician recommended a Neurologist at Children's Memorial (we live in Chicago) and we have an appointment for March 12 - that was the earliest he could see us.

    I'm not sure what else to add. I'm sure I've left something out but will answer any questions that you have. I am at my wit's end. Thank you for reading
  2. Jena

    Jena New Member

    I just wanted to say hi and welcome you!! I"m so sorry for what you are going thru and it does sound confusing, yet you have found a great place with alot of wonderful and supportive ppl.

    I myself havent' had any experience with this, yet i think scheduling the appointment with the neuro was a great idea, and also have you had any other evaluations done as of yet??
  3. smallworld

    smallworld Moderator

    Welcome. I'm glad you found us.

    The temporal lobes regulate emotion. The symptoms of Temporal Lobe Epilepsy can mimic the symptoms of Bipolar Disorder (source: The Bipolar Child by Demitri and Janice Papalos). Kids with both BiPolar (BP) and TLE can have angry, disruptive rages. The treatment for BiPolar (BP) and TLE is typically a class of medications that are anticonvulsants but are also used as mood stabilizers. Trileptal is one of those medications.

    My daughter has tiny lesions in her temporal lobes that were discovered on an MRI. Her EEG was negative, which does not rule out seizures, but simply tells us she was not having seizures at the time of the EEG. Her neuro believes her lesions could be contributing to her mood dysregulation (she has a diagnosis of Mood Disorder-not otherwise specified), but there is no way to know for sure. Regardless, the treatment is the same -- with anticonvulsant/mood stabilzers. She has taken Lamictal for nearly 3 years with excellent results.

    Obviously, there's no way to know for sure what's going on with your little guy. I think it's helpful that you're getting a second opinion. I would hope that the new neuro will order both an MRI and a new EEG, hopefully the sleep-deprived and/or the 48-hour ambulatory version, which should give you the most accurate results. If all turns up normal, you will need to look for other reasons behind your son's behaivors.

    While you're waiting to sort everything out, we recommend getting your hands on a copy of The Explosive Child by Ross Greene. It has helped many of us here parent our extra-challenging children (regardless of diagnosis).

    Some questions for you:
    How does your son do in school, both academically and with peers?
    Did he have any speech or developmental delays?
    Any sensory issues (for example, sensitivity to clothing tags, loud noises, food textures)?
    Any mental health issues or substance abuse in the family tree?

    Again, welcome.
  4. Sheila

    Sheila Moderator


    A member, Sara PA, is quite knowledgeable about various types of seizures. She has posted many links about various seizures.

    You might want to do a search for her posts which contains those links.

    You may also want to PM her and ask her to take a look at your thread.

    Welcome aboard!:D
  5. TerryJ2

    TerryJ2 Well-Known Member

    Hi MDL, Welcome.
    I'm glad you found us.
    You've already gotten some good leads.
    I hope they are helpful, and that SaraPA shows up. :)
    Sounds like you're on the right track.
    I am so sorry for you and your son.
  6. DDD

    DDD Well-Known Member

    Adding a quick welcome to the others. Will your son be receiving a full neuropsychological exam? Most of us have found these tests to be very revealing as a tool for the future.

    I think you are making very wise choices. It is so difficult to have a child who is malfunctioning and not be able to rely on one expert...but...some of us have used multiple people and tried multiple medications and methods before finding an adequate fit.

    Good luck. Feel free to post often and soon you will feel like you are part of the CD family. A darn nice family :D of caring people! DDD
  7. slsh

    slsh member since 1999

    Hi MDL and welcome! First off, my oldest has been seeing a neuro at Children's for years and I can only give the very highest of praise for their staff - truly outstanding folks up there. I think you'll be in excellent hands.

    It might be time to ask for an evaluation of your son at school. If you're getting frequent calls about his outbursts then there are problems that are affecting his ability to receive an education. been there done that - my kid was also a chair throwing explosive volcano. Check out the sped 101 archives for sample letters to get the ball rolling. The school may just be calling you right now but in a year or 2, they're going to start disciplining (suspending) him for these kinds of things. In addition to the usual multidisciplinary evaluation (checking for LDs, motor skills, etc.) I'd insist on a functional behavioral analysis. This should help identify triggers and specific problematic behaviors - aside from the obvious ;) . Not only are his behaviors affecting his learning, but in my experience with my kiddo, they're also setting him up for a really rough time socially if the school staff doesn't start working on positive behavioral strategies to help him maintain in the classroom. Kids have long memories and tend not to want to socialize with disruptive peers.

    Anyway - glad you found us! Welcome!
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there and wecome.
    Rather than looking just at epilepsy, he may have other disorders causing his behaviors too (doesn't mean he doesn't have epilespy, but in my opinion it's probably more than that). I have a few questions.
    1/Are there any psychiatric problems OR substance abuse on either side of his family tree?
    2/How was his early development? How does he socialize with his peers? Does he make good eye contact? Can he play appropriately with toys? Can he make transitions well? Is he bothered by loud noise/lights/textures? Did he ever regress?
    Rather than just going to Neurologist root, I'd get a complete, long, indepth neuropsychologist evaluation (this is entirely different from what a neurologist will look for). He will test your son from 6-10 hours and look for any/all problems in all areas, both psychiatric and neurologically and they often find things that others don't. You can find them at Children's and University hospitals and in my opinion they are the best diagnosticians. I personally had rotten luck getting any viable diagnosis and help from school. in my opinion it's better to go to a private diagnostician. Your freind is correct that, to date, there is no way to diagnose why a child is "different" by looking at an x-ray, although some people pay a lot of money for SPECT scans. As of yet, mainstream medicine is not on board that this is helpful. Take care!
  9. compassion

    compassion Member

    At our Nami meeting Thurdsay night, they said the exact same thing: that brain scans, blood tests ,etc. for mental illness are sitll in very experimintal stage. Nami's stance is tha it is biological . I do belive it is biological and it will be great when these soets of tests are more widely done. Compassion
  10. MDL

    MDL New Member

    Thank you so much for your warm welcome and your helpful responses. Let me answer the questions some of you have raised.

    i think scheduling the appointment with the neuro was a great idea, and also have you had any other evaluations done as of yet??

    He's going through a psychological evaluation with the school psychologist. She wanted to be careful of the fatigue factor, so instead of doing them all at once, she's doing them in 30 minute segments over several weeks. He's also done the IVA pre- and post-Adderall (not sure how to spell it) and although the test results were much better after the stimulant, the EEG showed an increase in seizures.

    How does your son do in school, both academically and with peers?

    He is behind in reading and sees a reading specialist for 30 minutes every morning. He has a 2-3 very good friends, kids who stick by him no matter what, but he's explosive when someone bumps into him or upsets him or if he can't figure out how to do to something - especially if he feels embarrassed. I worry that this will affect his reputation in the long-term; he'll be going to school with the same kids through high school.

    Did he have any speech or developmental delays?

    He spoke very early but has been in speech therapy for three years for low oral muscle tone and articulation issues. No other delays.

    Any sensory issues (for example, sensitivity to clothing tags, loud noises, food textures)?

    Nothing to clothes, tags, food textures, but I definitely think that loud noises, bright lights, and a lot of movement are overstimulating to him.

    Any mental health issues or substance abuse in the family tree?

    I suffer from Depression, as does my mother, and I suspect one if not both of my two brothers might as well. My mom's dad was an alcoholic until he was about 40, then quit drinking (he never went to AA and was what I think is called a Dry Drunk. My husband has two or three alcoholic aunts and uncles on his dad's side (his dad is one of 10). My husband's younger brother had a problem with drinking and drugs from about the age of 13 but then cleaned up his act in his mid-20s.

    Will your son be receiving a full neuropsychological exam?

    I'm not sure. The school psychologist is doing a full battery of psychological evaluations and should be done soon, but I suspect this is different from a neuropsychological exam?

    Not only are his behaviors affecting his learning, but in my experience with my kiddo, they're also setting him up for a really rough time socially if the school staff doesn't start working on positive behavioral strategies to help him maintain in the classroom.

    I have to say, the school has been amazing. Aidan sees a social worker, a behavioral specialist, and the school psychologist. He has had a few behavioral plans in place and we're still all working together to see what works and what doesn't. I've met individually with the social worker, the teacher, and the behavioral therapist and we've met once so far as a team - all nine people that see Aidan on a regular basis (social worker, behavioral therapist, psychologist, teacher, two assistant teachers, speech therapist, reading specialist, principal) to talk about 1. his strong points, 2. his needs, 3. things that work, 4. things that don't work, 5. things to try. We have another team meeting on Feb 18.

    How was his early development?

    A little late to start table foods (low oral muscle tone), sat up at 7.5 mos, crawled at 9 mos, pulled to standing at 10 mos, walked at 14 mos. No real problems.

    How does he socialize with his peers?

    It's a bit touch-and-go. He went through a period when he was about four that it seemed like his main purpose in life was to bother his friends by ruining what they were playing with, knocking things down, etc. When overwhelmed he gets goofy and sort of spastic. When he gets upset he flies into a rage, yells and screams, tells his friends he hates them, etc. This yelling and screaming started at about age 5-6. When all is going well, though, he plays well, takes turns, and cooperates.

    Does he make good eye contact?


    Can he play appropriately with toys?

    Yes, but I've always noticed that he can also come up with different uses for any given toy. Right now he's really into Legos, and has a great mind for constructing, designing, and creating.

    Can he make transitions well?

    No, he's very bad with most transitions. When he's really focused on something it's hard to get him to stop and move on. This year we had to take him out of karate, something he had previously loved, because the class time was immediately after school and he simply couldn't make that transition.

    Is he bothered by loud noise/lights/textures?

    I think he's bothered by loud noise and lights, but he's never said anything. It just sort of short-circuits his system. Textures don't seem to be a problem.

    Did he ever regress?

    He used to, but doesn't really anymore. Big changes would cause sleep, eating, and potty training regression, but it doesn't seem to be an issue anymore.

    I have read The Explosive Child but am having a very hard time proactively inhibiting meltdowns by collaboratively problem-solving. Part of the problem is that there I can't always anticipate his triggers.

    Thanks again for your help, and for your support. I will also PM SaraPA
  11. MDL

    MDL New Member

    I hope it's OK to bump this up - I don't know how things work but it seems that it takes about 48 hours for my posts to be approved by a moderator, and after approval my post didn't bump the thread. Hmmm, will this also take 48 hours to be approved - will that restriction be lifted after I have a certain number of posts?

    We got a call from my son's teacher that he had a good day yesterday. We almost never get that kind of call, it was such a relief.

    This morning his speech therapist, also at school, called to say that she will be going on maternity leave at the end of March and that she is not going to have her replacement reassess him and create any new goals on his IEP. She will reassess him when she returns in September. She said that she knows him so well and the new person will not know what is accurate and what is skewed by his moods, frustration and stubbornness. I appreciate that - I feel like she's really thinking of what's best for him.

    She also said that at our next Team Mtg (in three weeks) new services will be added to his IEP.
  12. MDL

    MDL New Member

  13. slsh

    slsh member since 1999

    Sorry MDL - this kind of got buried so I'm bumping up for you again. ;)
  14. TerryJ2

    TerryJ2 Well-Known Member

    Hi again, MDL.
    It sounds like you already have some good interventions in place.
    I'm glad you have an appointment, even it if is in March. I hate it that it takes so long for these things. Ask a lot of pointed questions. Take notes!!!
    My son is 12, and while I've figured out most of his triggers, there's always a new one. Not to dissuade you, but just to let you know that it's a lifetime thing. I read recently that giving kids sunglasses to wear when you go into an area that is lit by fluorescent lights can really prevent meltdowns. Likewise, maybe earmuffs or even a soft, stretch knit hat that pulls over his ears might help with-noises. I'm assuming he does not like fireworks!
    My son hates it when I talk from another room, but since he jumps and gets upset if I sneak up behind him (Which I'm not doing, but that's his perception), I have to say his name as I'm walking toward him. Then he'll yell "WHAT?" in a mean voice, but at least he doesn't melt down. I just take it one issue at a time.
    I read all sorts of books and get excited to try everything, and have learned that it's better to work on one behavior at a time. Don't expect to learn all his triggers in 2.5 days flat. ;)
  15. MDL

    MDL New Member

    Thank you for the bump!

    I just got a call from the school that two other kids his age (so probably 1st grade) went to the Principal to complain that my son has been bothering them on the bus; he's calling them names and kicking them.

    The Principal and the Behavioral Specialist got the three boys together and came up with a plan to assign them seats at the front of the bus, but away from each other.

    I just finished filling out the BASC-2 for the school psychologist.

    In the meanwhile, my younger son has started to project some issues onto his preschool classmates, telling them that they are his worst enemy and bullies. The teachers have talked to him and got out of him that he's actually talking about his older brother.

    Thank you, Terry, for sharing what you have with me about your son. I feel like every single thing I read right now is valuable and might be helpful to me in some way.

    I read all of these signatures and as much as I hate to think of my son having a string of labels attached to his name, I am so desperate to know what is going on so that we can try to help him.
  16. MDL

    MDL New Member

    Yesterday was hell. On Wednesday I had taken my son to the dentist because he has two very lose teeth that he won't let me touch and that need to come out. In the past his teeth have gotten so loose and stayed in so long that they've cut up the gums; I didn't want that to happen again. He wouldn't let the dentist touch him, screamed that she was losing her mind, etc. She recommended that I do it myself, but I explained that I can't get any closer to his mouth than she can. She got him to agree to a plan of wiggling those teeth until they came out - a one week limit for the one on the bottom, a two week limit for the one on the top. He agreed but I wasn't hopeful.

    So yesterday my younger son accidentally bumps into older son's mouth and budges the upper tooth. Blood everywhere, son screaming hysterically, inconsolable, absolutely panicked. I try to soothe him, but I know that know the tooth MUST come out, there's no choice. It took forever and I had to hold him down because I knew he wouldn't be able to reach a place of compliance, but I got it out and when it was out he actually laughed and said it wasn't that bad.

    After that he did something that he knows he isn't allowed to do. I asked him why he did it and he said that he couldn't stop himself. I sent him to bed. Got to listen to him tell me that he hates me. I just tell him that I don't believe him and that I love him very much. I used to send him to his room for telling me that, but seriously, he'd be in his room all day if I kept that up. I hate hearing it, though.

    Sometimes when we have an absolutely atrocious day the next day is better, almost as if he's exhausted himself and doesn't have it in him to give a repeat performance.

    Has anyone else seen this? And does anyone have any tips for what to ignore (I hate you) and what to address?
  17. smallworld

    smallworld Moderator

    Every family has to decide what they can and can't live with. When my son was unstable, the only "Plan A" (non-negotiable) items for us were taking medications, going to therapy and attending school. As he's gotten more stable, we've been able to add in more expectations.

    It sounds as if a part of what's going on with your son contains a healthy dose of anxiety.
  18. MDL

    MDL New Member

    It's such a freaking roller coaster. He had a great weekend, a decent day yesterday, and today the school called and said he was yelling and kicking and had torn the cover off a book. They said that he seemed to be escalating and doubted he'd be able to recover enough to go back to class, so I opted to pick him up and bring him home. He's sitting on the bed in the guest room and will stay there until school is out. He will pay for the book out of his "tooth fairy" money. He's mighty unhappy about that. I feel like there needs to be more, there needs to be some way to get through to him that this is not OK. He shows no remorse. I am so tired.