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| A rare sight in Los Angeles |
We woke up to gentle rain this morning, and after the swirl and angst of getting-ready-for-school, the house is relatively quiet, save the humming of Sophie who has been sick all week with the flu. She is better today, up for the first time since I got home on Sunday. The strange thing is that Sophie doesn't have seizures when she has a fever. It's been a phenomenon since she was a tiny baby: high fever, no seizures. In case there's an immunologist reading, I have three questions:
- Sophie began having seizures and was diagnosed with infantile spasms shortly after her initial vaccinations at two months of age. She had no fever, just the myoclonic jerks that soon morphed into other type seizures.
- The only treatment that Sophie responded to when she had bouts of ESES (electrical status epilepticus in slow wave sleep) was infusions of intravenous immunoglobulin (IvIg).
- When Sophie has a fever -- particularly over 101 degrees, she stops seizing.
Well, those are actually three observations -- not questions -- and my question is: Are these three observations related?
Anyone?
I sure wish I was smart enough and knew enough to be able to draw come conclusions. Or to help in any way.
ReplyDeleteWow! I would think a doctor could take those observations and run with them! In my very limited medical background when it comes to immunology, I would say that perhaps the immune response to whatever it is that is making her sick (flu, cold, food poisoning, what-have-you), is over-riding the seizure activity because it might be autoimmune related. There is some evidence that seizure activity can be caused by an immune response. Perhaps the fever is re-directing the immune response to a more acute, immediate need and is leaving her nervous system alone for a while?
ReplyDeleteI'm sorry she has the flu, but I love that the silver lining is fewer (or no) seizures. Have a lovely, quiet day.
It's been my experience that no doctor takes those facts and "runs with them." I don't know why. There is more and more research being done on the immunology/autism link, but I haven't read or heard anything about the phenomenon of fever/no seizures; in fact, it's generally the opposite! Sophie hasn't been sick in such a long time, that I haven't thought about it --
DeleteI can't imagine why no doctor would respond to this, either, but I guess sometimes it's hard to think outside the box when you have to treat a certain number of patients per day in order to get paid by the insurance company. Sorry - don't get me started on that rant.
DeleteMost of the information out there is about febrile seizures, but I would think the way to go would be to investigate the immune response as it relates to Sophie's particular brand of seizures. Not for YOU to investigate, but if some lovely medical soul out there was interested.... I wish I knew more, but I will be interested to hear whether anyone picks up this thread of information you've provided and discovers something helpful.
Don't you have a pediatric neurology student who reads your blog and wants to learn more about working with families of patients with these conditions? Have you asked her these questions? What does she say? Can she hand the question on to her colleagues and get their input?
ReplyDeleteI do, and I'm hoping she'll respond in some way. Like I replied to Kario, I've discussed this with various neurologists over the years to no avail. The only person who has ever found it curious and interesting is the osteopath Dr. Viola Frymann whose work with children with brain-injured children is world-renowned but who is considered "alternative."
DeleteHaha, I'm here. And reading, and thinking. You are correct in that most of the time we think fevers are the cause of seizures so this is a strange phenomenon in dear Sophie, but Sophie just doesn't seem to be classic in any sense of the word. And I DO think it is interesting and merits some investigation... I don't have the answers but I'll ask around and look at the current literature and ponder these questions you have posed....
DeleteOf course it's connected...how, I have no idea. But, that's too much to just be a coincidence. I hope she's feeling better soon!
ReplyDeleteI hope you and Sophie have a cosy non-seizing day, with Sophie enough on the mend so that she feels floaty but not ill.
ReplyDeleteI'm not a doctor (but I play one of t.v.!) but I wonder if fever interferes with electrical impulses in the brain. My two year old daughter had a high fever of 104 and then had a seizure. The seizure broke the fever. Scariest damn day of my life. You have good questions. It would be nice if someone could answer them.
ReplyDeleteI wish i had more insight to the seizure-free fever and IvIg response phenomenons.
ReplyDeleteLooks like my neighbor and his truck found their way down to L.A.. Sorry about that.
I wish I were a brilliant neurologist.
ReplyDeleteSending out wishes for someone to connect the dots.
Hope you and Sophie have a good day.
As you know, my son Nicholas suffers from Prader Willi Syndrome which causes a disruption in the part of the brain called the hypothalamus. One of the symptoms of PWS is a lack of fever in response to infection and ESES. Like you, I try to do some on-line research from time to time and did find a connection between the autonomic nervous system and fever, seizure activity, weakened immune system and several other characteristics common to PWS. It seems, at least to me, that there is a lack of research and real understanding of the ANS and those who suffer from dysfunctions related to this complex system. Lately, however, there has been alot of new interest geared toward the study of pws and ans. I will be sure to keep you informed of what this closer look may uncover. Perhaps there may be something learned that would benefit Sophie too? I am always hopeful and very glad to keep connected to fellow "searchers" like you.
ReplyDeleteThanks, Lisa! I know there's lots of research being done on the role of inflammation and autism and seizures -- but please keep me posted if you learn some new stuff!
DeleteSo, this really won't lend a whole lot to your questions/ observations but I thought it was interesting.
ReplyDeleteWhen Joe is coming down with something , his medication becomes basically ineffective at the onset of the illness. When his behavior is off the wall, we look at each other and wonder what is brewing in his little body.
When I mentioned this to his pediatrician, who by the way is one of the few in the area who has a large client base of children with special needs, he remarked to me that many of his parents of children with Autism, who have limited communication, become MORE verbal when they are sick. With the humor necessary for this journey, many of those parents joke that perhaps they could keep their kids just a "little" sick all of the time!
On the flip side, when Zoey was having seizures, illness brought on an increase. So who knows but what I sure wish was, that someone could be of some help to you all.
Kids with aphasia from Landau-Kleffner Syndrome often begin talking with high dose steroids, and as you know, infantile spasms sometimes responds to steroids or other anti-inflammatories. Interestingly, Sophie did NOT respond to high-dose steroids. Go figure. And figure and figure and figure. I responded to your comment below, too!
DeleteThanks for your comments, Heather! The most normal reaction to fever -- and most common -- is seizures (febrile seizures being fairly common in the "normal" population as well!), so you can be assured that Zoe is normal in that respect! As for autism -- I do know quite a bit about the role of inflammation and autism -- and why some kids do seem to benefit from certain supplements and diets -- and I've heard about kids talking when they're "a little" sick. What a labyrinthine world it is -- and obviously a dark one. The body's inherent ability to heal itself -- fever -- is something that we as a family have respected for many years. We only give fever reducer meds for pain relief -- and never until the fever climbs over 102.
ReplyDeleteI had an appointment with a blood specialist the other day (I've had a low lymph count for many years, and one of my primary docs decided to send me to a specialist.) The point is, he is one of the few doctors I've seen in many years, who seemed actually curious to investigate the reason for my condition. I think the medical community has, to a large extent, lost that curiosity. It seems as if Sophie's fever/no seizure connection would be of great interest - I hope someone in the medical community thinks so, too!
ReplyDeleteIf someone figures it out let me know too. Same thing happens with Ryley, when he has a high temperature he has not a single seizure. I have also mentioned it to his neurology team over the years with no explanation from them.
ReplyDeleteI can't help on the immunology, but I have to respond to that "You can't blame Bush anymore" bumper sticker. Umm, yes, I actually can! So much of what we're still dealing with is Bush's legacy! Wars! Deficits! Bailouts!
ReplyDeleteIt looks like someone from up here is down there ... Disneyland? Gun show?
ReplyDeleteI hope someone can connect the dots for Sophie. It's hard to understand why it should be such a mystery.
Your questions just bring me more questions! I have heard of babies developing seizure disorders after immunizations. Did you have your sons immunized after Sophie's experience?
ReplyDeleteAs for that truck. I wonder how many guns he owns?