Our little Kali is our little fighter girl. She was diagnosed with Infantile spasms @ 4 months old. Since then she has had lots of EEG's and MRI's a EMG & PET scan.. and countless number of blood test/urine test etc... She is developmentally 2 1/2 months old. She can roll and laugh but that is about it. She has a g-tube. She receives PT and OT and speech therapy + feeding clinic. She has been on over 16 seizure meds (none has worked) we have tried the keto diet with no success- ACTH twice. We have contemplated the VNS for her in the future. We have been seen at UNC & DUKE and Wake Forest hospitals. We have consulted with Dr.Shields at UCLA and Dr.chugani @ Michigan's children hospital.
The last EEG showed multi focal sz's that are in the right frontal lobe. Her brain is constantly having sz's As the neuro states, her brain is very angry.. She had an MRI Wednesday and it showed that her perivascular space is dilated so now we are going back to the genetic Dr to look at possible metabolic or mitochondrial disorders..
Is this MRI common with children with sz's?? We have had her tested for Dravet and Retts and both were normal.
What exactly does that mean.. the perivescular space being dilated?? She also has a cyst that is indenting on the R hippocampus, they say this is not causing the sz's. Could it be possibly causing the sz's??
We are lost trying to help Kali and would appreciate any feedback.
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
Let me begin by saying your daughter has been treated at some very reputable institutions by some very good doctors and from what you've described in terms of the studies and work up they've done, they're being very thorough. So much so, in fact, that I'm almost a little hesitant to suggest much given the significantly lesser amount of information I have from what they surely have in actually being able to see the MRI images, EEGs, etc.
"Perivascular space" merely means the area around a blood vessel. This does not indicate a specific area of the brain and without being able to see the images, it's hard to know the significance of this finding. The right sided cyst is also hard to know the relevance of in relation to her seizures without being able to see the EEG which can often help to localize where the seizures are coming from. You mention the last EEG suggested "multifocal seizures of Right frontal lobe." Do all the EEGs show the seizures coming from the right frontal lobe? If so (and while I hate to muddy the waters when you already have a lot of good physicians on board), it might be worthwhile to ask your epilepsy doctor if your daughter is possibly a surgical candidate. Otherwise you've mentioned pretty much all other possible therapeutic treatments as well as a very extensive work up above. I wish you and Kali the best of luck.
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