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Old 06-30-14, 11:14 AM
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ADHD and Epilepsy :( Neurofeedback?

Hi everyone! I'm new here and seeking some support and advice.

My son (7.5 yrs old) was diagnosed with epilepsy one week before his 3rd birthday. He had his 1st grand map seizure on Thanksgiving 2009. His seizures proved to be VERY difficult to treat. From April-Dec of 2010, he had seizures every single day. Starting in Oct, they were multiple seizures a day. We were watching him fade away before our eyes. We went through 3 neurologists and 5 different medications before finding the right Dr and medicine to finally STOP the seizures. He's been seizure free since Jan 2011

He has an EEG annually, and each year the EEG has been abnormal. His most recent on this past January still showed TONS of slowly which is not on indicative of the epilepsy but also ADHD which I KNOW he has but he hasn't rec'd a formal diagnosis yet b/c the epilepsy has been the focus. Anyway, a few yrs back we took him to see a child psychiatrist to get some advice on his impulsive behaviors at school. The psychiatrist pretty much said "The only thing that will help are meds but all ADHD meds lower the seizure threshold. But since it's your only hope, here's some Ritalin. Just watch him for seizures." Yeah, we never went back to him. His neurologist gave Intuniv to help, especially since his magic seizure medication, Zonisamide, causes hyperactivity and focus issues. It helped him for a while, but now at 7 yrs old, he has maxed out on the doses and it's no longer helping him at all.

We have an appointment with his neurologist on July 31 and I plan to get her advice on this. She is against ADHD medication b/c of his history of hard to treat seizures. Her fear is that his threshold WILL be lowered and he will start having seizures again and the Zonisamide won't be able to stop them. I trust her opinion 100% and that's also a fear of mine, so we are not willing to risk that. However, I know that he is going to continue to struggle in life and school if we can't figure something out for him. I've started to you a therapeutic listening program for him called EASe (Electronic Auditory Stimulation effect) b/c I know that he is easily distracted by any background noises. This therapy is supposed to make him less sensitive. We're only on day 3, but I'm hoping it does offer him some support.

One thing I've really been reading up on is neurofeedback (or biofeedback). I see that it has not been PROVEN to help with ADHD but it's supported. I worry that it's supported by those therapists who simply agree with how it is meant to work We have a free consultation tomorrow afternoon to see if my son "qualifies". I'm sure he will b/c he has the slow brainwaves which now I'm not sure if they are slow from epilepsy or slow from ADHD The mapping, which is how they will determine what protocol to use for him, is $200. The receptionist couldn't tell me the cost of any following treatments, only that they finance. So I know this will cost an arm and a leg. I'm really not comfortable paying thousands of dollars for something that's not proven to work. Does anyone have experience or an opinion on this? Any advice for this confused and overwhelmed mom?
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Old 07-01-14, 07:52 AM
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Re: ADHD and Epilepsy :( Neurofeedback?

I wonder if an increase in the seizure meds would offset the ritalin?
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Old 07-01-14, 10:34 AM
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Re: ADHD and Epilepsy :( Neurofeedback?

There seems to be some controversy over the actual effects of drugs like Ritalin on seizure threshold. Some doctors swear that they decrease threshold, but the medical literature is actually quite mixed in terms of effects.

In your son's case, I could see why doctors would want to be cautious, but you may be able to find someone with a slightly more open minded approach to stimulants.
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Old 07-05-14, 04:51 PM
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Re: ADHD and Epilepsy :( Neurofeedback?

Since your son's major adhd symptoms are impulsivity, perhaps he would respond to a non-stimulant med such as Intuniv, if it doesn't interfere with his epilepsy meds.
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Old 07-06-14, 01:32 PM
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Re: ADHD and Epilepsy :( Neurofeedback?

Quote:
Originally Posted by ccom5100 View Post
Since your son's major adhd symptoms are impulsivity, perhaps he would respond to a non-stimulant med such as Intuniv, if it doesn't interfere with his epilepsy meds.
S/he said that they tried Intuniv, and it helped, but he maxed out on his dose, and it doesn't work well enough anymore.

This is a really tough situation . Neurofeedback does not have the proven success rate that stimulant medications have, but it seems that stimulant medications are a risky option. The studies on neurofeedback were probably done on people without epilepsy, so it's difficult to generalize the relatively poor results from neurofeedback when dealing with children with epilepsy.

Would Wellbutrin be an option? It's an anti-depressant with some mild stimulant properties, but it's not a stimulant.

Do you live near an academic medical center? They may have some clinical trials with neurofeedback, though some of the studies may require your son to go off meds, which wouldn't be an option.

I'm really stepping outside my knowledge realm here--have you considered medical marijuana for his seizures? It's been shown to be very effective for some cases of epilepsy. It's not the type of marijuana that makes people high. Rather, it's an extract that contains no psychoactive properties. You don't smoke it. Sanjay Gupta did a story on it.
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Old 07-07-14, 03:24 PM
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Re: ADHD and Epilepsy :( Neurofeedback?

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Would Wellbutrin be an option? It's an anti-depressant with some mild stimulant properties, but it's not a stimulant.
Wellbutrin unfortunately, *does* reduce seizure threshold, even in people without a history, so that's a no-go. I'm wondering if Straterra has the same risk as the stimulants or not.

The problem with neurofeedback isn't necessarily that it doesn't work; even if it *does* it requires a significant time-commitment, and the effects don't last forever, so you're left with a fairly high-cost option due to repeat sessions. If there's significant benefit, it may be worth it, but if the benefits are marginal, it's a huge time *and* money commitment. Sorry we don't have any definitive answers for you. You seem to be in a fairly difficult spot.

FWIW, I've read about a family who tried Ritalin with a child with a serious (life-threatening) seizure disorder on many seizure medications. While they weren't able to keep the child on the stimulants, their doctor at least gave it a try. I'm unsure how delicate the balance is with seizure control (and imagine that it varies quite a bit from person to person), but the one good thing about IR Ritalin and similar meds, is that they are out of the system incredibly rapidly, so if you *do* have an adverse reaction, the drug is out of the system within 2-6 hours.
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Old 07-07-14, 11:05 PM
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Re: ADHD and Epilepsy :( Neurofeedback?

Have you looked into dietary changes? Studies have shown that foods containing dyes and other petro-chemical additives can cause or exacerbate adhd type symptoms, especially hyperactivity and impulsivity. Even allergies to certain foods can trigger those symptoms. My ds has been following the Feingold Diet since he was 3 and it really helps with his symptoms. We didn't have to put him on adhd meds until he reached middle school. He is in high school now and, while he does take meds, his dosage is lower than most kids his age due to his clean diet.
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Old 10-08-18, 02:46 PM
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Re: ADHD and Epilepsy :( Neurofeedback?

I been doing neurofeedback. I think it is working great.

One of the roots of neurofeedback is a kentucky scientist that tried to provide feedback to cats to increase SMR sensorimotor Rythm brain frequencies. Later these same animals were exposed to chemicals known to induce seizures and the cats that had received the Neurofeedback did not develop seizures. The idea being that Neurofeedback is helpful in treating epilepsy, and it seems as though the results were not temporary, as they constituted a restructuring of the neural pathways.

Spotlight on Dr. Barry Sterman

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