My son just had his first febrile, focal seizure

[Stephanie2]

My youngest pandas son last night had a febrile, focal seizure. He stopped breathing for the first 30 seconds, scare of my life, he still wasn't breathing as I was calling 911 and my neighbors were flurring around the house to help me as my husband wasn't home. You can only imagine the scene!

 

Anyway, I suspected seizure activity with him back when he was 15 months during his first ever pandas exacerbation. He is now 3.75. Long story, but I did the full neuro workup and consulted with two neuros and they concluded that they could not rule in or out the seizures unless a "real seizure" happens and I happen to witness it - which happened last night. Anyway, back to the first episode when he was 15 months and had strep. The "movements" went away as the other pandas symptoms went away. They came back (very mild) the next couple times he had strep/pandas. Then they were gone for a long time, even with strep infections.

 

I have no idea if he currently has strep right now, but this seizure happened during a very sudden onset of illness last night and a very rapid rise of temp. We went to the ER and then returned. While he was sleeping last night, just as his tylenol was wearing off, I witnessed some mild seizure activity. I guess my point is that this is most-likely not a "one time" febrile event.

 

Has anyone else seen or suspected seizure activity that waxes and wanes, specifically, with strep infections? With or without fever? I need to go back to the neuro on monday and he is a pandas-friendly guy, thought I would run some of your thoughts/experiences past him.

[dcmom]

My sister and I both had a couple of febrile seizures as very young kids. It is possibly genetic. We grew out of them. My pandas kids have not had any issues.

 

Must be very scary.

[peglem]

My oldest (not PANDAS) son had febrile seizures as an infant and toddler. They were very scary. I just gave tylenol around the clock at the 1st sign of illness. He outgrew them by about age 6. Prophylactic sulfa drugs were tried, but he developed an allergy to them.

That being said, I'd get his thyroid gland checked out and check for thyroid antibodies as well. Thyroid hormones are supposed to control the rate of temperature rise and the body's adjustment to temperature fluctuations.

[tpotter]

My youngest pandas son last night had a febrile, focal seizure. He stopped breathing for the first 30 seconds, scare of my life, he still wasn't breathing as I was calling 911 and my neighbors were flurring around the house to help me as my husband wasn't home. You can only imagine the scene!

 

Anyway, I suspected seizure activity with him back when he was 15 months during his first ever pandas exacerbation. He is now 3.75. Long story, but I did the full neuro workup and consulted with two neuros and they concluded that they could not rule in or out the seizures unless a "real seizure" happens and I happen to witness it - which happened last night. Anyway, back to the first episode when he was 15 months and had strep. The "movements" went away as the other pandas symptoms went away. They came back (very mild) the next couple times he had strep/pandas. Then they were gone for a long time, even with strep infections.

 

I have no idea if he currently has strep right now, but this seizure happened during a very sudden onset of illness last night and a very rapid rise of temp. We went to the ER and then returned. While he was sleeping last night, just as his tylenol was wearing off, I witnessed some mild seizure activity. I guess my point is that this is most-likely not a "one time" febrile event.

 

Has anyone else seen or suspected seizure activity that waxes and wanes, specifically, with strep infections? With or without fever? I need to go back to the neuro on monday and he is a pandas-friendly guy, thought I would run some of your thoughts/experiences past him.

 

 

I have been told that my DS's seizures (not necessarily febrile, but not epileptic) may be due to PANDAS.

 

Also, I noticed that you were giving him tylenol. At the TX A&M conference they said these kids need antiinflammatories like ibuprofin (they specifically said that tylenol gets rid of the pain and fever, but if there's inflammation, it doesn't get rid of the inflammation. Ibuprofin gets rid of them all.) Just thought I'd mention that to you.

[Stephanie2]

Peglem, that's an interesting thought, the thyroid. He certainly did spike very fast.

 

Tpotter, I usually do not use tylenol b/c it reduces glutathione which is a very important antioxidant in children with autism/pandas. BUT motrin was not cutting it alone so I am having to do both. This is the most aggressive fever I have ever dealt with in either of my boys. I can't miss a dose of either one or we get a spike, and we have already had a return of mild seizure activity, had to throw him in the bath.

 

Not getting much sleep here...

[saidie10]

Oh my goodness I am so sorry. Absolutely terryifying. I hope you little one improves soon and that you get some answers Monday...

[thenmama]

myoclonus as a PANDAS variant that I've come across in my research-- both case descriptions: A Case of Myoclonic Symptoms After Streptococcal Infection: a Possible PANDAS Variant and Acute Myoclonus Secondary to Group A β-Hemolytic Streptococcus Infection: A PANDAS Variant

Edited March 28, 2013 by thenmama

[Stephanie2]

thenmama, thank you that is very helpful, I am going to print those out and bring to neuro, I think I have another one in my files. His neuro and I have actually discussed possible O/M movements before but it was never set in stone. He wanted to do a cat scan to rule out neuroblastoma, but I declined b/c I knew it was not cancer, I just knew it, and it turns out it is most likely strep related or seizures.

[LNN]

Stephanie,

My son did suffer from myoclonic jerks and "freezing" seizures, but that's not what you're seeing in your son, so I don't know that that would help much. My DD did have one febrile seizure 2 yrs ago with H1N1, but none before or since.

 

I'm sure you know way more about ASD issues and treatments than I do, but I found the article Nancy posted about amonia and seizures interesting.

http://biologyofkundalini.com/article.php?story=TheAmmoniaHypothesis

 

I don't know if all the info in the article is correct or not. But I found the link interesting, as methylation is my new research interest and ammonia plays a role in the cycle. As soon as life returns to normal here (just got power, heat and water back 8 days after a major northeast storm), I'll being doing a trial of betaine with my son. My gut tells me we have an ammonia detox issue contributing to our situation. It may be worth looking into. Dr Amy Yasko's work may also have something that applies to your situation.

 

I hope things improve quickly!

Laura