Hi all, I figured since the forums are back up and running and some of us are new or dont know everyone... (is that a run on or what, lol) that I would put my story out there so you all could get to know me. I hope that if you all want to, you might do the same. If not, its ok and understandable. So here goes...

My name is Andrea. I am 26 years old and the mother a beautiful little girl named Sierra Lee Ann. She was born 10/13/05 and boy is she getting to be a handful! lol Well, lets see, I was diagnosed with hydro in 6/1999 after passing out in the middle of the floor. I was rushed to the hosp. where they believed that I had meningitus. After many a ct and mri, I was diagnosed with hydro and later that year in September I had a vp shunt placed. So far I have not had any problems or revisions. But I have also been without insurance for the past year and a half. Since then I have started noticing somethings that seem different. I have gone to the ER a few times and each time they did a ct and stated that nothing seemed wrong. So I went home confused. Assuming all is well. I still feel 'off' however so I am unsure that they are right but do not know how to go about finding out how to prove them worng, if that makes any sense. I found BT right before the crash and I was so happy to know that I could finally talk to others in the same situation and maybe get answers that I am looking for instead of a Er drs point of view. (They think they know it all sometimes, lol) The crashed happened and I honestly felt decimated! That sounds dumb probably I know. Anyways, I have some questions about hydro complications and what not but I shall leave them til my next post. I hope that I can get to know all of you and maybe develop some lasting friendships here. Until next time, I am off to bed! Here is hoping all of you who read this have a great evening....

I am LIZ, a prolific member of the "old" BT forum. I will be 40 in another couple of months, and I was dx'ed with hydro at 3 weeks old. After a rough start with five surgeries by 4 yo, along with a shunt infection and some seizures, I have had only one surgery since--at 13, 26 years ago last week!!!!!!!!! I am happily married (with an anniversary this Friday!), and I have two terrific kids. In all honesty, my son's autism is the toughest thing I deal with. I have an occasional off day, generally with simple partial seizure "clusters" about 4-5 times a year, but I do all the things everyone else does, and I have no serious complaints about my life.

Please feel free to write me here or PM if I can ever help you with any questions. Kiss Sierra for me, too.

LIZARD

Hi Liz,

Thanks for adding your story to the mix. I dont know a lot about my hydro. I thik I got it when I fell from a tree and was knocked out in my early teens. But let me ask this and hopefully I will phrase it correctly so it doesnt sound dumb. My vp shunt... When I feel it on my head is it supposed to feel inflated or not. Sometimes mine doesnt and it kinda makes me worry, but as I have said, Ive gone to the ER and they said all looked ok. I just still wonder due to the fact that I seem to get lightheadedness,stinging pains in my right eye, dizzy spells, shakyness in my hands and other such things a lot more than I used to. It worries me and I dont know how to really deal with it. Maybe you could help me out. I have looked up hydro complications and cant seem to find any real link between it but if its not the hydro causing it then I am scared of what it might be. Atleast if its hydro I know I can handle it! lol...

Hi Andrea. I am Heather, mom to Jack and Megan. At the old BT, I was hedda... but I changed with this. I wanted a new user name anyway.

Megan was dxed with hydro at our 20 week ultrasound. She has had 2 shunt infections, a failed ETV, and in about 2 weeks we are going to celebrate her 2 year shunt-a-versary!!! She also has seizures. They are long and one sided... so I am starting to notice a definite preference as to which side she uses on a daily basis. She is really starting to walk now... but isn't consistent at all. I am dreaming of the day I don't have to carry her everywhere because she is about 40 lbs of determined 2 year old... which means my back hurts! And, as much as I want her to be a girly girl, she HATES dresses, hair things, shoes or socks, and would rather be just in her diaper (or naked) playing in the dirt.

I am a preschool teacher and college student. My husband is a security guard for a college, and Jack is a funny little man. He hates bugs, but wants to go hunting with his daddy. He talks ALL the time (even in his sleep) and wanted to go to kindergarten this year.... at the "old" age of 3. He is also the best defender of Megan unless she is touching his stuff.

Just a question... have you checked to see if you qualify for Medicaid? I know that Medicaid is a big hassle, but if it can get you at least some coverage so you can get some of this checked out, it might be worth it... when my dh was the only one working, we "made too much money" for Medicaid.... I was just amazed that a family of 4 was supposed to survive on $12/hour... 40 hours/week. Crazy. Anyway, just a thought.

Heather

Heather good to see that you made it here. I was hoping you would see my message in Megs guestbook. Off to the NS.

Suz

Hi Heather,
I did try to get onto medicaid this year and unfortunately they told me no. I am going to have to try something with the hospital in hopes of getting some help with this. Luckily, they did put my daughter on medicaid as she is a victim of domestic violence and I ended up without insurance for her due to loss of my job. They wanted to make sure she was taken care of incase anything happened as a result of the incident. (My soon to be exhusband/ her father put her in the hospital when she was only 4 months old) I am praying that all will be well with me until I am able to find some type of healthcare and get checked out. Guess thats why I am so worried about finding out the signs of any complications. But again thank you for the advice!

That's too bad... The system really bites. I believe it is set up for failure. What reason did they say you didn't qualify? I don't mean to be nosey, but there has to be something that will qualify you or something that can help you with some kind of coverage.

I gotta get to bed... Days aren't long enough anymore!