New to here....12 yr old with Epilepsy

[ziggidypoo]

You can read up on this here, I posted a thread last year
on it:

Human Herpesvirus-6B with Mesial Temporal Lobe Epilepsy

But when you click on the article thread that I posted the
link to, it is very lengthy and it is WORTH the time of
reading it all ... as Bernard had commented on that thread,
it is interesting! So it is a worthwhile reading and to book-
mark it, and I believe you can print it out if you have a
printer, but I'm not sure how many pages it will take...

Thank you, Brain, Went and read what I was able to take in at that time. My head cannot read complicated studies for long periods any more even though eons ago in college I studied non-stop for hours and had 4.0GPA - now, haha, even in '86 had to drop out of college because my brain ability dropped so significantly I could not keep up and it was THEN by that that I knew SOMETHING was wrong. Never dreampt I'd be here now. Question? My father came back from Korea with a strange HIGH fever, critical illness and my Mom became preg w/ my bro. then who later died of cancer as did my father in later life. The question is, that was back in '52, and my bro. had no seizures, could THAT unknown fever disease that my father had left a virus that was passed not only to my brother, but me? I started w/ a febrile seizure and everything was dormant for yrs. I will, if I can recall, ask my neurologist about HHV6. Can it be tested w/ bloodwork? Yes, I could study this for myself, however, my study ability is gone with my memory ability. I cannot even read favorite books anymore - my head will feel like it is swelling up like a balloon. But, these short notes on the web are ok. Thanks, Brain, if I can remember I will keep going back to that link until I get it all read.

GL

[ziggidypoo]

Much prayers will continue to abide! Thanks
for the update! Laura

M2M, I will pray now for you so I don't forget. PLEASE keep us all posted - KEEP the HOPE going!! You are NOT alone - we care.

GL

[tinasmom]

I just spoke with Mom2many and her 14 year old has definitely been diagnosed with viral menengitis, after they did a spinal tap. They took 6cc of spinal fluid out to relieved some pressure on the brain. He is being given Moraphine just to keep him comfortable. They have to watch the rest of the family for 10 days to see if anyone else has it. Thank you everyone for your thoughts and prayers, she really appreciates it.

[stilldancing_98]

Welcome M2M! I am so glad you are here. I have epilepsy. And my 10 year old son does to. He has myoclonic seizures and he has regressed. Lost all his speach, forgotten simple math, and I am grateful that he does not know that.But he has relearned what he has forgotten. After a cluster of seizures his behavior changes. Oh and he just informed me he will be 11 in January. I know this hurts.I am with you in spirit. Love ,Teresa and Alex

[ziggidypoo]

I feel deeply for you and others who have young children with E. I only pray their futures in this modern medical technological world will be peaceful as compared with the old time days of total misunderstanding. That's a super reason why the whole world needs Epilepsy Awareness!!

[stilldancing_98]

Zig, you are to cool. I love your attitude.Teresa

[stilldancing_98]

M2M I am also praying for you and your family. I wish I could be there. I just don't get it.

[Mom2many]

My gratitude: First I must say Thank sot my dear best friend Laura. She helped me find CWE then she made sure everyone got in the loop of the happenings for us. Thank you to everyone that has been praying and keeping our family in their thoughts, IT HAS WORKED TO encouraged us and has help us immensely to get through some very scary and tough days.

My update:
My 14 year old son was found to have Meningitis caused from some virus...He is stable and with some meds the Dr are keeping him comfortable. We have no idea when he will come home, they say it can take a week.
My husband spends the night in his room and I am with him during the day.

Now our 8yr old son who began having seizures (the first was in Dec) tests did not confirm at that time. However the staring spells and what he calls " Shaky Brain" have come back and he will be entering the hospital on Nov 24th for more observation. Including an Audio/ Visual EEG .

Mari has her T3 MRI with spectroscopy tomorrow and the
MEG Scan on Wednesday. BOTH are at the same hospital with Abryham so it makes life easier that way.

I HOPE EVERYONE finds life being very kind to them this week. Thank you for CWE friends. In a short time I have found a great family and
I can see it makes this journey easier.

[stilldancing_98]

I am here with you. Been thru the spinal taps. Oh big hugs.You must have a lot of with you. including ours.Love you all. Teresa

[sixpack]

My prayers are with you. Meningitis can be scary. I hope all the tests come back with the best possible news.

[skillefer]

My prayers are with you and your family, as well as the doctors. May you and your spouse be be given the strength to make it through these hard times, and the doctors the wisdom to best serve your children.

[stilldancing_98]

Wow, right now you have a lot on your plate. I also will be praying that the right Dr.s are there. And I just know Angels are in that hospital room right now.

[ziggidypoo]

Don't feel up to talking tonight, but I care and well, Sending hugs may sound trite, but if ya'll were here, with all you go through, I'd squish ya'll ta bits!!!

[RobinN]

I am not sure if there is any connection between the scarring you implied and what is mentioned here, just thought I would share the info:

The researchers conclude that focal white-matter lesions in the brain may represent an extra-intestinal manifestation of celiac disease. They theorize that the lesions may be the result of a decreased blood supply caused by the constriction or obstruction of blood vessels due to inflammation, or caused by the destruction of the nerve fiber due to inflammation. Further, children with white-matter lesions, even if they do not have intestinal symptoms, should be tested for celiac disease. Last, more research needs to be done on people celiac disease of all ages to develop a proper predictive value, and to discover the exact cause of the lesions.

http://www.celiac.com/articles/112/1...ase/Page1.html

[Mom2many]

Thanks everyone for all the well wishes, prayers and squishy hugs (even if it is to bits..lol)
Thank you for all these links which I hope to catch up on tonight...these are all helpful.
Mari has been tested for Celiac disease, her dr.s performed many tests and said her MLE has no known cause. They explained her seizures caused the lesions, the more seizures the more lesions the more lesions the more seizures. But was it a lesion first or a seizure first?
I asked this but was told it was the Million dollar question.
I will never stop looking though so as anyone finds anything if I see it I read it and usually save it. There is power in knowledge....
Thanks a ton everyone and hugs to you all.
P.S. My son with menegitis is doing a bit better. His blood pressure and sodium are more normal. He has a few latent things like fever and headaches, dizziness but medication helps to control these things, we hope he will be home soon.
Thanks ~Ryn

[stilldancing_98]

All I can say is I'm still praying.For you to.