This webinar highlights the latest research on how epilepsy impacts cognition, learning, and school performance.
The webinar is presented by Dr. Madison Berl, a neuropsychologist at Children’s National Hospital in Washington, DC. Dr. Berl’s presentation is followed by an interactive Q&A session. Some of the questions you might hear addressed include:
- How do schools build an IEP for a child with epilepsy?
- Are there services available to help my child transition into adulthood?
- What laws are in place to support my child
Q&A Transcript
Do you have any sense on how successful the percentage of cases are aided by programs like CogMed and how great the impact is?
Yeah. So for our study and I think there’s one other published study in Epilepsia, it’s about 20% of the kids that were in the study showed a significant improvement. So it’s not nobody, but it’s not a majority either. And so that’s a concern. And I think we don’t have enough information of why those kids responded and the other kids didn’t. So that may be something else about it to learn about too.
And then the second factor is, okay, they improved. Usually they’re improving on the measures that are very specific to that task. So they can repeat more numbers backwards or something like that. But how that actually translates to real life school skills or other skills is really lacking. The other thing that we’ve seen with longitudinal studies, because these programs have been tested a lot more thoroughly in ADHD populations, is that even if they show significant gains on something like math fluency, which we actually found too, it goes away after six months.
So it’s very short lived. And so does that mean that you have to keep doing this training? Does it really change things long term or not? And so those are some questions that are still concerning that it really doesn’t generalize or last in the way that we hope it does.
Advocating for 504 and IEP combinations seems to be a daily challenge. How can we get better resources for the teachers in schools?
Yeah. So that can go in a lot of different levels, right? So, yes, we need more funding for our education system, hands down. I am an advocate of that. In terms of getting the resources for your child, I think you also come to a point where you just have to fight for your own. And use of advocates is wonderful. They can be expensive. It’s like hiring a lawyer. But there are often, at least around here, organizations that have access to advocates that are free or at least at a reduced costs because their nonprofit mission is to help children access the curriculum. And so if you can get an advocate, if your school is not being responsive, really the parents that are the loudest, the squeaky wheel gets the oil, be like a pit bull and just be after them. And nobody likes that when it gets contentious, but sometimes that’s what you need to do for your child.
Are there any thoughts on what it indicates if a child makes huge cognitive gains on seizure meds and with every increase in their seizure medication?
I think that’s a great reminder to know that if there’s great gain, that probably means that was interfering with your child’s ability to learn. And so the medicine’s quieted down that brain activity. I would be very cautious about saying that then more medicines mean better cognitive skills because that can go the other way too. Like making them blotto by giving them too much drugs. And you really have to work with your neurologists about that.
They usually are working with you by doing routine EEGs to see what the EEG looks like. And if some of the problems are like attention, that’s where, again, maybe going to the stimulant medication and it’s not necessarily more anti-epileptic medication but it may be a different medication that could be helpful.
Are there any other options when stimulants don’t seem to work for ADHD?
There are non-stimulants ADHD drugs. So those could be helpful. Again, depending on what is going on, sometimes I’ve seen really the inattention is around sleep. And so I’ve had some parents feel like melatonin at night actually does wonders for the attention during the day because now they’re sleeping better. So I really think you need to dig in to know maybe why that stimulant wasn’t effective and that might open up some other options for other drugs or maybe other interventions. And really then just the behavioral interventions in school are definitely something that needs to be carried out. Whether that’s smaller class size, working in small groups, those kinds of things.
Does failure to medicate for the purpose of mitigating inattention have any impact on long-term development IQs?
I think what if your child is not available to learn, whether they’re sitting in the classroom and not listening or never attended school, it would be the other extreme, then, yes, that can impact their development. So, yes, if you are afraid of medication and decided not to, you may be hampering them because they are just not available to learn. But again, I’m not saying that it’s the only way. It’s just that it is a tool. And I feel most of the parents I work with are more hesitant to add a medication. And so that’s why it sounds like… I’m just telling you not to be hesitant and to consider it. It doesn’t mean that has to be the only way. But for sure, I would just think it should be considered more and I think many parents that I work with are a little bit more afraid than the typical parent because they already are on medications.
At what point do you think that homeschooling is a viable option for a particular child or student?
working with an advocate can be helpful. Fighting that process can be long and hard. And even what’s an acceptable amount of time that your child is not accessing the curriculum? Is one year too long? Is two years too long? And so I can sympathize and empathize with parents that say, “You know what? I can do this better and I can do this at home and we don’t have to waste all this time.” And I have had lots of families that have done a great job at that. I think you have to think about you and what you’re able to do and your willingness. I think there’s lots of tools and resources. We have lots of co-ops around here, so you don’t have to do it on your own. And then again, I would just make sure you at least worked with an advocate or a professional to make that decision just to have the discussion with somebody else so that an issue you hadn’t considered or options you hadn’t considered, that everything was turned over before you made that decision.
Again, some kids it’s just they need to because you know the school that you have access to. Or you know your child. We have some children that really, they’re so variable that they need to sleep till 10 o’clock in the morning and they can work and then they need to take a nap or they are going to be seizing every two hours. And so just because of them, they may do some of their best learning at seven o’clock at night and school’s not open. And a child that really needs that much more flexibility might be another reason to decide to do homeschooling. So there’s lots of factors that go into it. But I would mostly just recommend that having that discussion maybe with several people so that you’re considering all the options. But again, I’ve seen wonderful teachers, parents that are way better teachers than what’s in the school system. So it can definitely be a good decision.
Resources mentioned during this webinar are below:
Attention/Processing Speed Resources:
- Books:
- Websites:
- Apps:
- iPrompts
Executive Functioning Challenges Resources:
- Books:
- Executive Skills in Children and Adolescents: A Practical Guide to Assessment and Intervention
- Smart but Scattered: The Revolutionary “Executive Skills” Approach to Helping Kids Reach Their Potential
- Late, Lost, and Unprepared: A Parents’ Guide to Helping Children with Executive Functioning
- Becoming a Master Student: Tools, Techniques, Hints, Ideas, Illustrations, Instructions, Examples, Methods, Procedures, Processes, Skills, Resources, and Suggestions for Success
- Keeping a Head in School: A Students’ Book About Learning Abilities and Learning Disorders
- Learning Outside the Lines: Two Ivy League Students with Learning Disabilities and ADHD Give You the Tools for Academic Success and Educational Revolution
- Apps:
- AudioNote Auditorium Notes
- AwesomeNote
- Diigo
- MyStudyBar
- Noodle Tools
- SoundNote
- Voice Dream
- Webspiration
Memory:
- Books:
- Websites:
- Apps:
- Kurzweil 3000
- Kindle Learning Ally
- Read2Go
- iPromptPro
- Text Aloud 3
- Virtual Manipulatives!
- Numbler
- Math Drills
- Math Battle
- Simplex Spelling with Reverse Phonics: Lite
- TYPE! By Broderbund
- Mavis Beacon Teaches Typing Type to Learn
The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified healthcare professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified healthcare professionals who are familiar with the individual’s specific health situation.
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