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colleendonny

seizures and pandas

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I am at the hospital with my DD10 months old for possible seizure episodes. She is still hooked up on the EEG. Basically her first episode was in Feb. It was about 1 month after a PCV13 vax. Before the 1st episode she started doing a head shaking, like as if saying no. Had an EEG for that, was normal.

Her 1st episode lasted about 2 minutes. Her eyes glazed over amd she was blinking and her head was falling gently. She was confused for about 10 minutes after. Never had a follow up EEG.

She had a small episode on Easter and two the next day. Looked the same but lasted about 10 seconds.

Then Saturday night it happened 6 times in less than 3 hours...

She has been on an EEG since Sunday morning. No episodes until this morning where she had one that lasted a few.seconds.

 

Wonderig if this could be an early sign of PANDAS.... Any thoughts?

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We have found one case study that related seizures to PANDAS. I'll have my hubby give me the link tonight. My DS 16 started having seizures in August 2011 and 6 months later DS 14 started having tics and has been diagnosed with PITAND. So, we are wondering the same thing. Waiting on Myco P, strep and West Nile Virus test results on DS 16 now. Will let you know how those come out. Does anyone else know if seizures can be related to PANS?

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I wanted to add to not let her get any vaccines at all for the time being. Could the vaccine have triggered the seizures? Have they done a throat culture (grow it out for 72 hours). Have they checked strep titers (ASO and ADB)?

 

Colleen

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I am so sorry you are going through this. In my early teens and late twenties I went through similar episodes myself. I also had significant fainting episodes and often wound up leaving public places (work, shopping malls, etc) on a stretcher (horribly embarrassing and scary). Many times before I would pass out I would fall into staring spells - as if I was in a trance. I could hear people but had an extremely hard time responding to them. I wanted to tell them I could hear them but often would stare into space and no words would come out. I also would be confused afterwards. Excessive blinking was part of it. Have you ever eaten something really tart and had your eyes wince up and blink really fast? That's what it felt like. I was put on seizure meds for almost 5 years. Tried tegreyol, depakote and Dilantin. They really didn't do anything to help. During this time, I started showing a host of physical health symptoms and a primary care doc weaned me off the meds. I felt like I was alive again. The year or two on depakote was terrible. I gained weight, my hair was thinnin and coming out like mad and I felt like I missed an entire year of my life. I don't remember it at all. My husband has been noticing my blinking again and I have been feeling this fluttering feeling in my eyes. Hope it's a fluke!

 

I'm telling you all of this because I truly wonder now if it has a tie to what is going in with my son and your description of your dd sounds similar to ehat i experienced. My EEG's were mostly normal, lots of twitchy movements during sleep study and MRI was normal, but this was far from normal, I assure you!! I am now showing high titers to mycoP, which I read your body never gets rid of us this true? Also, pretty positive I'm battling Lyme disease an believe this to be to blame for my problems for many, many years. But, I always have battled sinus infections, ear infections and strep as a child, teen and even into adulthood. Makes you wonder!

 

I have been surprised that I have not read about more "seizure" activity with PANDAS kids. in theory you'd think they would be very likely to experience seizures. High fevers can trigger seizure activity, encephalitis, brain trauma....our kids brains are being assaulted...seems like they would be more susceptible to neurons misfiring. I would challenge any neurologist that told my nicely I wa full of $git - that's for sure!

Edited by fightingmom

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I agree with Colleen about holding off on vaccines until you sort this out. My DD had a few seizures ages 2-6 following a cold or infection. No seizure activity showed up in the EEGs though. Since I have learned that seizures can be a symptom of Lyme disease. I believe she had congenital Lyme/Bartonella. Have you tested any family members for Lyme?

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Her EEG showed no abnormalities. I do think something is going on. I knew I shouldn't have given her that PCV13 vax. I went in that day telling my pedi no vax, and he talked me into it saying she already had 2 of these and no reaction.

Figures, there was hardly anything I noticed at the hospital, but I did notice this morning her kind of dropping her head, but she snaps out of it within a few seconds.

We have a supportive pedi now, so we are no longer getting anyone vaccinated.

I got the pertissus vax in the hospital and I still nurse her.

 

I had Dr. B check me for Lyme last week and.we don't see him again until June. I think I will do a phone consult.

 

I wish things were easier for all of our kids :(

I'm just really having a hard time coping with all this stress lately.

 

I think I will bring Lucy along to our next Dr. B visit.

And I will give her a throat culture Wednesday when I go to our pedi's.

Thanks everyone.

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Nancy-

What did your DD's seizures look like?

The hospital said it was behavioral or stimming. I find it so hard to believe. You can't snap her out of them when it happens. And sometimes they are so quick, it can stop before I have try to call her attention.

And I'm wondering how often it happens when I don't always have my eyes on her.

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We also haved had some seizure like experience with Aidan - a couple of different kinds. The first ones that we noticed was when he was 1.5 years old but were more movement related - now a couple different types that seem like true seizures. Nothing that shows on EEG. Perhaps there was more going on when he was younger also but we just weren't watching. It is common for Lyme patients to have non-epileptic seizure activitiy per our LLMD and I would think that it also could be a symptom of PANDAS. We think that Aidan has congenital Lyme and Bartonella (but also had issues with strep through the years.) I don't really like to bring Lyme up on this board so much because it causes waves but doesn't your other PANDAS child have some evidence of Lyme? Could it be congenital for both? Symptoms are far more important in Lyme than testing so I would consider getting her to a LLMD as soon as you can. I sure wish we had discovered either PANDAS or Lyme when Aidan was littler - perhaps he would have had more of a chance to develop normally. But we will not give up.

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They looked like petit mal seizures...blank stares for 30-45 seconds followed by disorientation and fatigue. Neither the teachers nor I could snap her out of it and sometimes she had multiple in a day. Usually right after a cold or infection. Now that I think back they stopped at age 7 when I put DD on abx for PANDAS.

 

Nancy-

What did your DD's seizures look like?

The hospital said it was behavioral or stimming. I find it so hard to believe. You can't snap her out of them when it happens. And sometimes they are so quick, it can stop before I have try to call her attention.

And I'm wondering how often it happens when I don't always have my eyes on her.

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They looked like petit mal seizures...blank stares for 30-45 seconds followed by disorientation and fatigue. Neither the teachers nor I could snap her out of it and sometimes she had multiple in a day. Usually right after a cold or infection. Now that I think back they stopped at age 7 when I put DD on abx for PANDAS.

 

Nancy-

What did your DD's seizures look like?

The hospital said it was behavioral or stimming. I find it so hard to believe. You can't snap her out of them when it happens. And sometimes they are so quick, it can stop before I have try to call her attention.

And I'm wondering how often it happens when I don't always have my eyes on her.

 

Interesting, that's how mine were, but sometimes lots of blinking like I described. Have been on numerous antibiotics over the years for sinus/ear infections, etc. - but coincidentally had been on them long term for about 4 months during exploration for stomach issues (which turned out to be gallbladder issues) and that's around the time these staring fainting/seizure like episodes stopped. Might be on to something there, NancyD!

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I wonder if Dr. B will give her blood tests for Lyme and Co, plus other infections. I believe there IS a reason for what is happening with her.

She is on abx now (Cefdinir) for an ear infection, and I am noticing the episodes now more than ever.

So strange.

I'll have to mention this to LLMD at the end of the month.

Thanks for the insight, ladies. :)

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I wonder if Dr. B will give her blood tests for Lyme and Co, plus other infections. I believe there IS a reason for what is happening with her.

She is on abx now (Cefdinir) for an ear infection, and I am noticing the episodes now more than ever.

So strange.

I'll have to mention this to LLMD at the end of the month.

Thanks for the insight, ladies. :)

 

Do you think it is a reaction to the medication? Was she on meds during the previous episodes?

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Nope, she wasn't on meds for her initial episode. It's baffling, but I will definitely pursue this. Is she too young to check for Lyme and Co, mycoplasma, ASO etc....? Would she still have my antibodies? And she is still nursing, a lot... Would this make a difference in her blood tests?

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    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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