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

[Mom2many]

We have a large family combination of 12 children.

Our family has no family history of Epilepsy. We had many months of headaches and day dreaming with a few dr.s visits, all the while the Doctors said our DD was growing in puberty.

On July 4th 2007 our lives would thrust into E.
Marielle had several grand mals, and complex partial seizures. 3 days later would come the diagnosis of Mesial Sclerosis.
Marielle has since gone through 4 meds changes and after 16 months we have learned that she does much better than us. She teaches us everyday that each day is new and we must embrace it for anything it has to offer.

Marielle is not a typical child in that over time we have seen much regression in her daily life. Her memory is affected most which affects everything. Somethings for instance, she has caused 2 fires in the kitchen due to walking away and forgetting what she had been doing.
Also, up until this summer we used Medications containers with days of the week. One morning Mari forgot the date after having her morning meds and took more meds..thus over dosing and landing in the hospital.
We have had to make many changes like:
Marielle can only cook under supervision (She has notes posted in the kitchen to remind her).
Marielle can only have her meds dispensed by me. (Meds had to be locked up)

I share these things because I have found through my many hours of research that these types of things are not addressed often. I also never knew 16 months ago my daughter could lose so much memory that she would fall behind by 3 grades in school. I had no idea that life would be today what it is for us.
Marielle has left an impression on the hearts of many. For this I am grateful because I know I am no longer alone....as I felt from the start.

I greatest wish would be to meet another family with a CHILD that has Mesial Sclerosis.

[skillefer]

Hi M2M! Welcome to CWE. I hope that in some small way we can help you. I am truly amazed when I hear from parents like you who are struggling with so much. There are several parents here with children with E. As to Mesial Sclerosis, I don't know. But you are most definitely welcome here.

[Mom2many]

Thank you for the Welcome. My friend "Tinasmom" invited me here.
I will be reading many threads here to day, I am hoping to connect with other parents.

Mesial Sclerosis is commonly found in Adults, rarely in children. Mari has Simple partial, complex partial and grand mals. Her left hemisphere is smaller than the right, and she has lesions on her brain. She is currently on Lamictal and Tranexe.

[Meetz1064]

Your name rings a bell........I think we've met on another forum somewhere. Just don't remember where.

Anywho. Welcome to CWE. Great place to be. Mr B has made us an awesome home here. Lots of nooks and crannies to check out......

You'll find we're quite friendly here, with just as many caregivers, it seems to me, as E people. (I'm an E person myself).

I suffer from the tonic clonics (grand mals) myself--although mine occur in my sleep. Mine are also a bit more controlled, too......luckily.

I wish you well, and again, welcome to CWE.

Meetz

[ziggidypoo]

I am in awe of all that you are dealing with.

I am not familiar with your dd's condition.

I'm new here too and have never felt so accepted and comforted with all that I deal with on a daily basis.

Yesterday, I had a long aura, about 3 min., may have been a seizure, don't know. I could not walk without my companion's help, kept repeating "not feel right" over and over, knew I was about to have a major seizure of some sort, rushed to bathroom to empty bladder so I wouldn't "oops" on the bed, rushed to bed, my cpap and O2 and mouth guard (I grind my teeth and have sleep apnea and COPD), and slept.

The reason I THINK it was either an aura or a PC is I knew everything even if everything was not working right.

Carey - my love - my companion - has adapted to my oddities and knows more of what to do and more about my episodes than MANY of the EMT's we've encountered, even more than many DR's.

I hope that your dd has friends and I hope you can find adequate help.

HOW does she react to her memory loss?

Does she KNOW she has forgotten, weird question, I reckon.

One time, after a major, seizure with a prolonged post-ictal stage, I lost 35 yrs of memory and it took about a week for it all to return.

Usually, now, I lose days.

For me, at 52, it is frustrating to know this when others tell me it was that.

When I was a child, I had memory lapses, it affected schoolwork and friends.

I really pray that the experienced people here can give you much hope, love, and comfort as they have me so far.

God bless you and your DD and family.

Gail Lynn

[ziggidypoo]

As an add on, if that is ok. I did some study of the hippocampus and the mesial (I forgot the term, sorry).

It was quite informative.

Especially since 50 yrs ago I had my 1st seizure (febrile complex partial) evidentally and it may or may not have been related to a measles exposure - I had no rash only high fever and a prolonged complex partial seizures.

My behavior, I was told was fairly normal except memory.

Then, black-outs w/menses.

Then, in my 20's I started with lots and lots of temporal lobe epilepsy or complex partial.

I would like to learn more about your daughter and I TRULY believe people here will be a great help to you. I'm new, too, so not much help but to listen and learn my own self.

God bless,
Gail Lynn

[Bernard]

Hi M2m, welcome to the forum.

I greatest wish would be to meet another family with a CHILD that has Mesial Sclerosis.

Have a look: http://www.coping-with-epilepsy.com/...tags/mtle.html

[Mom2many]

This that Bernard posted is very informative. Mesial Sclerosis can be very complicated. Often diagnosed thru MRI. Its for a lack of better words scarring caused from seizures, seizures cause scars an ugly vicious cycle. These "scars" can sometimes be surgically removed and thus stopping the cycle. In Mari's case we will know better after these tests next week how much and what parts of her brain are affected. She will be having a T3 MRI with Spectroscopy and an MEG (Magnetoencephalography), These are to determine the scarring process, hippocampus size difference, and to map the brain.

How does she respond to memory loss......we spend alot of time hugging the tears away.
She does not realize how much she forgets which is good but often when it is pointed out to her, she says..."Sorry" and moves on with her tasks.
She does not realize how much she can't remember. Since she clusters, those days we sadly walk through quietly. We miss her but she usually takes a while to get better so she does not have that loss of time like some. I hope that makes sense...

THANK you so much for your welcoming me......it means alot to me

[RobinN]

Welcome Mom-
I too have a daughter with tonic clonic seizures. She has memory loss with them, and also had a period where she suffere regressive amnesia for two months.
It is my belief that many of the neurological issues that are being fought in our society these days are more common than some give them credit for. Take a look at the links below and consider the information. Not necessarily with the labels of the disorders in mind, but what is actually occuring in the brain. Perhaps there is an alternative answer.
Who knows for sure, but it is worth a try.

My daughter has a heterotopia and has been helped by neurofeedback. Her cognitive ability has improved since beginning this.

The researchers in this study asked whether infections with human herpesvirus 6B (HHV-6B) are associated with a common type of epilepsy called mesial temporal lobe epilepsy (MTLE). Patients with MTLE often have extensive scarring in the hippocampus, a brain region responsible for memory that lies deep within a bigger region called the temporal lobe. Hippocampal scarring and MTLE are associated with a history of fever-induced fits, and HHV-6B infection can cause such fits in young children. Most people become infected with HHV-6B (or the closely related HHV-6A) early in life. The virus then remains latent for years within the brain and elsewhere. Given these facts and a previous investigation that showed that brain tissue from several patients with MTLE contained HHV-6B, the researchers reasoned that it was worth investigating HHV-6B as a cause of MTLE.

http://www.danasview.net/virrec3.htm
http://www.danasview.net/virfile.htm

[Mom2many]

Wow this is new information that has never been shared with me before....thanks.
I will do a lot of research on this .. I did do a small amount of reading and did find this info:
HHV6 is usually acquired in early childhood - more than 90% of the general population can be shown to have been infected with the virus. After primary infection, HHV-6 can persist lifelong in some white blood cells, salivary glands, and in the central nervous system.
That is important info we should all seriously look into.
The only thing that confuses me is; Why have I not met anyone with a CHILD with MTLE?

[RobinN]

Perhaps that info has not been shared with the parents, or the parents are okay with just enough knowledge to give meds. There are many that just want a quick fix.

Also, consider the possiblity of vaccination induced virus, or a combination of them.
If the bodies immune system is compromised for any reason this could be the beginning of many neurological issues.

Curious if she has any intestinal issues.

[RobinN]

http://www.danasview.net/vitamina.htm
http://www.enzymestuff.com/conditionviruses.htm

I have also been interested in the vitamin A protocol that is suggested on such sites.
Not sure if it is relevant to your situation, but there is HOPE where there is knowledge.

I willl tell you that most conventional doctors will not discuss this. The problem is that it brings up all sorts of conflicts with immunizations. There is already law suits being won over this, so the immunization schedule is coming under fire.

If you go back and look at her vaccine record, do you see any connections?

http://www.danasview.net/virrec2.htm

[Mom2many]

No connections with immunizations, or illness. She has had asthma since she was 4 yrs old. Except for that she has only had a couple colds, one time a stomach flu but after being dx with E.
Mari has 2 things though, the left side of the brain is smaller than the right and the Mesial Sclerosis. (Mesial means: of, in, near, or toward the middle. and Sclerosis means: scarring)
MTLE is sclerosis of the Temporal lobe, if one has sclerosis throughout the entire brain it then just that acronym MSE Mesial Sclerosis Epilepsy. So there is a bit of a difference.

I wonder though since Dr consider the new immunization for HPV for girls and women how that would correlate with HBV6 ? BOTH are Herpes virus linked. How would that affect a child with E.

Have you seen any information on the chromosomes and E related information?

[RobinN]

Supposedly Rebecca's right side is slightly smaller than the left, however she was fine for 14 years of her life. She had speech issues and I can now see that her vaccines could have played a part of that. She stopped trying to talk after her 18 mo immunizations, and regressed again between 5-6 yrs after boosters. I didn't see a direct connection until I started my research on seizure disorders.

I have a test that shows she is high in mercury. There is a connection for many with neurologist issues with vaccines and mercury levels. The body isn't able to eliminate the heavy metals for some reason. An immune reaction of some sort. There is also a connection to intestinal issues, which my daughter also has.

She had ezcema as a child which is yeast related, and yeast causes constipation.
Her diet was high (and still is to a degree) in carbs that feed yeast. Asthma, allergies is also seen as a connection to liver function. This is something that I am addressing with Rebecca. She was having monthly allergy attacks, and I saw nothing in her environment that was causing it, so I considered internal environment, and that seems to be helping.

For Mari, I am curious as to what has created the scarring? Have they given you any indication as to what brought this on?

I personally would not give my daughter the HPV vaccine. The research I have done, there are far too many negatives.

I did see something regarding chromosomes... let me do a search to find it.

[RobinN]

http://www.coping-with-epilepsy.com/...-project-4244/

http://www.autismvox.com/mutated-gen...ties-in-women/

http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0

http://cat.inist.fr/?aModele=afficheN&cpsidt=17848379

[ziggidypoo]

Just wondering how HHV6 is tested for, diagnosed, I have not studied this thoroughly. Sorry.

****************************
ZIGGIDYPOO
"Bless you always, Amen"
http://www.myspace.com/ziggidypoo
"Live and let live!!"

*****************************

[tinasmom]

Just wanted to let everyone know that mom2many's son may have viral meningitis. Her son who has been having seizures may have it also. Keep her in your prayers please.

Just got news, it is not meningitis but some other virus attacking his neurological system. Still don't know why other son is having seizures.

[RobinN]

I hope that they caught it quickly.
Let her know that we are thinking of her and pray they get better real soon.

[brain]

Just wondering how HHV6 is tested for, diagnosed, I have not studied this thoroughly. Sorry.

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...

[brain]

Just wanted to let everyone know that mom2many's son may have viral meningitis. Her son who has been having seizures may have it also. Keep her in your prayers please.

Just got news, it is not meningitis but some other virus attacking his neurological system. Still don't know why other son is having seizures.

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