My 22 month old son

On January 10 my 22 month old son had a massive seizure and was transported unconscious to the ER. Prior to this event my son was having staring spells and rapid eye movement that we were already seeing a neurologist for but they had almost completely disappeared until this seizure event. He is now on Keppra and awaiting a 24 hour video EEG at Children’s National Medical Center. Because of the seizure he was given and MRI and during the MRI they discovered that he has a Chiari 1 Malformation of 8mm with diminished CSF flow. They do not believe this is connected to the seizure however, I’m now wondering if all the rapid eye movement and eye squinting we see with Shane is. Needless to say we are just beginning to understand what all this means and have been told to get a neurosurgery consult.

My biggest question is do these get bigger, if he is at 8mm as a 22 month old and his brain and head are clearly still growing would we expect this to get bigger? OUr son has several delays and was an extremely late walker, 18 months…the question becomes is he having symptoms that he cannot communicate to us…he falls down frequently but how much is just normal toddler vs. an actual balance issue.

My understanding is that the surgery is best when done young…but the concept of operating close to his brain and spinal cord is just so scary…there is no way for us to know if he is having symptoms since he cannot communicate well yet (another delay…he receives services for his speech delay but is making great progress). ALso has anyone had seizures associated with a CHiari?

Any info would be greatly appreciated.

I have epilepsy, but was told that the two are not related and completely different things. I dont have any other answers for you but wanted you to know my heart goes out to you, I have chiari, I cant imagine as a mother myself seeing any of my kids (ages 10, 4, and the youngest is almost 3) go through something so devestating as that. Your best bet is seeing the NS and go from there, they can prob answer your questions best, other than the mods on here. I am really sorry.

The neurosurgeons should be able to give you some answers. In general, chiaris are better treated when less symptomatic(not necessarily, when younger). 22 months is a recipe for disaster for a Chiari operation(only do it if absolutely necessary). Because the body's natural tednency is to close a hole that wasn't originally there, most children who have a Chiari decompressed(up to 80% when <2yo, up to 50% when <5yo) require a second decompression to remove the bony regrowth.

Seizures are a supra-tentorial phenomenon, Chiaris are infra-tentorial(there is no direct correlation).

What we expect to see with children and Chiaris is commensurate growth, meaning if the Chiari is at the top of C1, it should stay there. the absolute number should increase. measure his fingers, toes, any body part and it is expected to growth for another decade. Same with the Chiari(so the mm of cerebellar tonsillar ectopia is expected to increase, hopefully staying in the same location).

Good luck!

So I am writing this as I lay in my son’s hospital room at children’s national medical center in DC. We were admitted after my son had two episodes of turning blue around his mouth on tuesday. We have been told that these are likely seizures and not related to chiari but we are about to start our 3rd day of video EEG and so far have no findings. I’m questioning seizures and wonder if the blue spells were chiari?? We have met w/ NS and my son’s chiari is very tight and described as pulsing. We were told that the spinal cord is literally continuously kicking his brain stem repeatedly. They tell up no bruising or damage is evigdent as of yet. They want to hold on surgery as long as possible as long as his spinal MRI is clear of syrixes and his sleep study is clear for apnea. MRI is tomorrow and sleep study is sunday night.

I started having seizures around 12 years old. I did not become symptomatic until my late 20’s, I believe due to going to the chiropractor. I have yet had a doctor confirm to me that they are related but I think they very well Could be. I also have an arachnoid cyst that may or may not be related as well. Anyway I have been on seizure meds since and I’m now 38. As long as I take my meds I’m fine and haven’t had one since 2001 ( wasn’t taking my meds). Hope this helps.


SO it has been a long road, but my son did have decompression surgery back on Feb. 20th. 1 month later he celebrated his 2nd birthday (he is a St. Patrick's Day baby!!) and it was wonderful. He was doing very well post-op and frankly had an amazing recovery. He was speech delayed and was being seen by our county's Infants and Toddlers Program for early intervention and was released from his speech therapy within 4 weeks of surgery. We joke that he was literally "uncorked"! He literally went from non-verbal (not even mama or dada!) to speaking in 3-4 word sentences in what seemed like days. None of us know if this has any correlation but we were thrilled. He continued to make a rapid recovery all spring and basically we have felt were were out of the woods. He was removed from anti-seizure medications in early May and was completely symptom free. The doctors, both neurologist and neurosurgeon are unsure to this day if he actually had seizures or we are going with the assumption that everything was CHiari related since all symptoms have gone away post-surgery...

That was until this past week...we went in for our first follow-up MRI post surgery last Monday and had the devastating news that his Chiari is not at all fact the neurosurgeon said the argument could be made that he actually looks worse than he did before surgery. We were so surprised! Symptom wise, just 7-10 days prior to the MRI we started seeing him staring off again...he also started telling us he was tired and wanted to lay down at very weird times and in very weird places. We didn't think much of it until we got the news about the MRI. Then just two days later after the MRI we got called home by our babysitter in a panic as he was having another seizure-like spell and his eyes were rolled back up into his head and he was not very responsive. The thing is his body was not shaking at again not sure if these are seizures or not...needless to say it looks like we are probably heading back to Children's for more tests. I don't know if they will do another surgery or what...that is all to come...but we are still in shock and feeling very much like it is deja-vu!