Hey out there! :)

[LIZARD]

Hello, everyone!

Thank you, Bernard and Stacy, for setting this forum up. I hope I can be of help to some of you, and possibly receive occasional help myself. I'm a 39 yo mom, dx'ed with E in infancy after a grand mal seizure while in my mom's arms. Prior to that, at 3 weeks, I was dx'ed with hydrocephalus, a condition where the cerebrospinal fluid (CSF), which cushions the brain, builds up due to blockage or malformation within the brain's ventricular system. "Hydro," as those of us who have it have come to call it, is treated most often with a shunt, a siliconized rubber catheter, which is inserted into the blocked ventricle and threaded down the side of the torso into the peritoneal cavity, near the stomach, to allow for continuous drainage of the CSF in order to prevent swelling of the brain, compression of the brain tissue, and severe physical issues (headache, balance issues, vision issues) and even death. The shunt is not a cure, and most hydro patients require several shunt surgeries throughout the lifetime (I have had six), but with a properly-working shunt, we can often live full, active, happy, (near) normal lives. Seizures will occur in about 20% of hydro patients, and epilepsy will be a lifelong issue for about a quarter of those. Just lucky, I guess.

I am thrilled to tell you that I haven't had ANY shunt surgery since I was 13 yo, although I'm sure there will eventually be more. Right now, I'm just thrilled to have excellent seizure control (a few simple partial "clusters" a year, from things like sudden weather fronts, and a very occasional grand mal) without med, and my biggest day-to-day issue isn't even anything related to my health. It's my 11 1/2 yo son's autism. Drew is doing wonderfully--no E, no meds--but as anyone with a child with any degree of autism will tell you, life is never dull!

I welcome any questions about anything I have posted here, so please feel free.

Peace and good health to everyone,

LIZARD

[Bernard]

Hi Lizard, welcome to the forum! I recognize you from your posts at BrainTalk.

Looks like we are just about the same age! :shock:

We have our hands full with two children ("normal" as far as we know). I can only imagine what additional challenges you have.

Your condition sounds like a scary one for an infant. How do they diagnose it? What if they don't catch it in time? In any event, its very nice to hear that you are doing great!

[LIZARD]

Hey, Bernard.

Hydro is scary for anyone, but it's also very commonly dx'ed in infants, and even prenatally now. It's dx'ed in a few ways, usually MRI, but occasionally spinal tap and head measurement or even eye exam (to check for papilledema, or swelling of the optic nerve). I used to have more probs with it than I do now, which were mostly nasty headaches and blood sugar plunges. I can feel my sugar dip now, but my symptoms aren't nearly as sudden and severe as they used to be, and my level was actually tested at normal for the first time in my life about five years ago. (Now that I'm losing weight, it may start dropping again, but I'm much more successful at managing it than before.)

If hydro is caught or treated late, it may result in anything from retardation to severe seizures to profoundly abnormal head growth and even death. I'm really too busy with Drew to spend much time thinking about it, but when I had my last surgery, I learned quickly how bad it can get. It was terrifying, to say the least. I'm really fortunate to have had only a small handful of ops. Many folks I know have had a dozen or more. One very close friend who died almost 10 years ago had had over 100! I can only hope I'm doing her memory justice by carrying on with her work in advocating and providing support.

So...how old are your kids? For Stacy: Do they understand about your E and help out? My daughter knows almost as much about hydro, E, autism, and Chiari as I do! I don't call her my "assistant" for no reason.

Well, I have to throw the kids into bed and then get in myself.


Have a great night!

LIZARD

[Bernard]

We have two boys currently aged 5 and 2. The older one has witnessed Stacy having lots of tonic clonic seizures and being whisked away on a stretcher when she busted her scalp once too.

He has been taught what to do if mommy has a seizure and has helped me before. He will likely be able to hitchhike his way through the galaxy because he has the first rule down pat - don't panic. :shock:

[Stacy]

Hello Lizard,

Just wanted to say Thanks for the reply, and now I'm off to get ready for school. I'm taking "Research Methods in Chemistry".... lucky for me I know this class will be no problem.

[LIZARD]

Hey, Y'all.

Sorry for my absence. Just been a bit busy, and getting a lot of competition for the PC.

Stacy, I can't even imagine trying to handle a class like that. I have a college degree, but it was a nightmare getting it because, believe it or not, Tegretol nearly killed me, and four neuros were completely clueless. Chem ain't my thing, to put it mildly. It sounds intriguing, though. It's funny how the classes I couldn't stand in high school and college (i.e. biology!) are my life now, what with my brain and my son's. Good luck with it!


Hugs,

LIZARD