trying to find answers for my daughter

[pam472]

My 17 y/o daughter had her first seizure on Jan 25. We were at a concert. When the 3rd band came on, they had bright, white flashing lights as part of their show and we had 4th row seats. About 45 seconds into their set, she was on the floor convulsing with a tonic-clonic seizure. She was taken by ambulance to the hospital and was admitted. She had a few more seizures over the two days she was there but her EEG was normal.

She was transferred to Riley's Children's hospital at IU Medical Center for a 24 hr video EEG and had a grand mal seizure in the ambulance on the way to Indianapolis.

During the 24 hr EEG, which was really only about 16 hours, they were able to induce a seizure with a strobe. However, the Dr said the EEG was completely normal. We were told they must be stress related, was sent home with no meds, was told to practice deep breathing, and to see a psychiatrist. She has been in counseling for several years and her counselor says there is no way they could be stress related. He says she is his most stable patient. He's been doing then for more than a couple decades, so I would think he knows what he's talking about.

Since then the seizures haven't stopped. She was averaging one seizure about every 3 days until last Friday. Since last Friday it has been at least one each day. Wednesday she had 4 seizures back to back in the hallway of the high school and was taken to the ER by ambulance. Since she was scheduled to see a local neurologist on the 28th for a follow-up, the ER Dr gave her a prescription for Ativan to place under her tongue if she felt she may have a seizure. Not the best solution because she usually doesn't know when she may have one and she could choke on the pill.

Later that afternoon, the local neurologist's office called to cancel my daughter's appointment because Riley's diagnosed them as stress related pseudo seizures. She said it would be like someone coming to them for a broken foot.

Sunday she had 9 seizures in 5 hours. After the 4th one, I took her to the ER. When the ER Dr saw the seizures, he said they were definitely 'real seizures' and gave her 1000 mg of Dilantin and transferred her to a hospital with a neurology unit. They did another EEG that was found to be normal again. But this neurologist did prescribe Tegretol and it may be helping. She hasn't had a seizure in 45 hours and she isn't jerking like she had been since the first seizure. However, we were told to follow up with our family Dr because it wasn't necessary to see a neurologist since they are pseudo seizures.

Has anyone else had this much trouble getting someone to take them seriously because the EEGs are normal??? What should I do???

 

[pam472]

I forgot to add that she has dropped 3 jean sizes in the month this has been going on. She wasn't very big to begin with. She now wears the same size jeans she wore in 7th grade.

 

[LW6279]

pseudo seizures does not mean that they are not real. I think that is what they call them if there is no focal point to pinpoint it on or nothing on the EEG. A lot of people have this problem and it changes as the Dr. gets to know you better. Find a Neuro that specializes with E and I think that Dianosis will change.

 

[pam472]

That's what the Dr. at Riley's was supposed to be, an epileptologist. But he was about as young as Doogie Howser and, I suspect, not as smart. I'll keep looking for a different doctor.

Thank you.

 

[Nakamova]

But he was about as young as Doogie Howser and, I suspect, not as smart.

Yes, sounds like she'd benefit from a neurologist who's actually treated a ton of epilepsy cases, not one who thinks a clear EEG is the same as stress-seizures.

 

[LW6279]

Let's us know how's she is doing!

 

[KarenB]

Hi Pam,
As Nakamova said, a clear EEG does NOT mean real seizures aren't going on. Sometimes, if the seizures generate from deep in the brain -- such as the hypothalamus - the electrodes on the scalp will not pick these up, unless they then generalize to other parts of the brain.

Our son began having REAL seizures when he was one year old. He's now 9, and has had over a dozen EEGs. Only 2 of them showed abnormal brain waves. The rest were normal.

You are right to continue the search to find a better doctor. For her to have so many seizures after her first one, along with the significant weight loss, is quite worrisome. Weight loss doesn't typically accompany seizures, so there may be some underlying health issue that is causing both the seizures and the weight loss.

Do you know why she's losing weight? Do you think it's the stress? What was her blood sugar readings when she was hospitalized? (Diabetes can cause unexplained weight loss and fluctuations in blood sugar can trigger seizures). Did they do a thyroid level? Hyperthyroid can cause weight loss and is sometimes associated with seizures.

 

[mglynn2]

I agree with KarenB. The seizures could be coming from deeper inside the brain so not picked up. It took a few tries for my doctors to get their results.
I also agree it could be another health issue causing all of this. My roommate in college had diabetes and a stomach issue and whenever her blood sugar was extremely high or low or she had to be hospitalized she had seizures

 

[pam472]

I don't think they checked her thyroid, but blood sugar was normal.
Am I wrong to think if they are originating in her hypothalamus that could cause fatigue and weight loss? She did have a period of about 2 months of extreme fatigue not long before her first seizure. Tests were inconclusive, but our PCP assumed it was mono.

 

[KarenB]

The hypothalamus controls an enormous amount of body functions, so yes, some disorder there could cause fatique, weight loss, and seizures. Did they do an MRI while she was in the hospital? That might show if she has some sort of lesion or something in that area, but ONLY if they follow a certain protocol. If she hasn't had an MRI yet, hopefully you can connect with a doctor that will consider that.

Mono is caused by the Epstein Barr virus -- even though most people don't get very sick with mono, and most of us adults have been infected with EBV when we were children or young adults without any problems -- there can be complications with an EBV infection INCLUDING encephelitis and meningitis, AND seizures.
http://professionals.epilepsy.com/page/viral_ebv.html
http://www.medlink.com/medlinkcontent.asp

(note that in the literature review in the first link above, that 64% of patients with an Epstein Barr infection that led to seizures had abnormal EEG readings during the acute phase, and that 43% had abnormal readings after the acute phase was over. That means that more than one third of the patients with seizures caused by EBI had NORMAL EEGs even while quite ill with the virus)

 

[pam472]

Thanks, KarenB. Her blood work only showed exposure to the virus, not an active infection. They did do an MRI, but they are unable to see everything because her braces cause a cloud. Otherwise, her MRI was normal.

 

[KarenB]

Hmmm...the hypothalamus is located in the brain about an inch or two behind the eyes, and very close to the jaws -- so the braces could possibly have obscurred a good view.

However, most tumors on the hypothalamus are there from birth, so she would have probably been having seizures before now (gelastic seizures -- giggling spells when nothing is funny -- are associated with hypothalamus, as is early puberty, and other seizures like grand mal show up later).

 

[KarenB]

It seems like she has photosensitive seizures, since her first one was triggered by the strobe lights at the concert, and they were able to trigger one on the EEG with strobe light. Here's some basic info on that:
http://serendip.brynmawr.edu/exchange/node/1718

This is a rare type of epilepsy, and not a lot of research.

I'm still trying to get some more information on photosensitive epilepsy, since our son developed this in August 2012 (he had other seizures before that -- mostly nocturnal. He has right temporal lobe epilepsy.). He began having seizures when watching TV or looking at the computer (esp. if too close to the screen), and also if the sun was flashing off of water, that would trigger a seizure. It was getting to the point where he was having several seizures a day. Fortunately, in his case, the seizures (of all types) have gradually faded away, and he has now been seizure free for a month.

However, in the thread "Sunshine and Seizures" -- a couple of us went to great lengths to try to put a finger on the cause (not the trigger, but the cause for the trigger) of this type of seizures. You can go over and read that if you have hours of time (we also tended to get off-topic at times). One potential link that we found was the gut-brain connection -- it seems that intestinal flare-ups and overproliferation of bacteria in the gut can affect histamine in the body, which can then lead to seizures triggered by flashing lights.

Our son was having a lot of diarrhea (and also losing weight) during this time period (his GI doc diagnosed him with Inflammatory Bowel Syndrome), and his neurologist agreed with us that the seizures were not going to be licked until the IBS was brought under control. So, the month of December was devoted to doing just that. We worked with his Pediatrician (who specializes in Nutrition), and she prescribed zinc and probiotics and also worked with us on a diet plan (he's already on the ketogenic diet) to clear up the diarrhea. In January, he was mostly diarrhea free, and started to gain his weight back, and he began having fewer seizures. We adjusted his diet a little more, and his last seizure was the last week of January.

 

[pam472]

Hmmm, the picture is getting clearer with each of your posts! I was confident that we may be looking at photosensitive epilepsy, but it didn't seem that any of the seizures on Sunday were related to light. However, she was diagnosed with irritable bowel syndrome last year and still has frequent flares.

There is so much information that I need to remember to mention to the Dr in Chicago when we go on the 14th. I better sit down and start typing stuff up so that I don't forget anything.