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Old 01-16-2012, 10:18 AM
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Our Journey with epilepsy due to mixed causes and diagnoses


I know I posted here many years ago completely beside myself in searching for any answers and/or help I could find. I will go into a lot that you might feel doesn't apply to seizures at all, but if you'll bear with me you'll find the connection. I'm sorry for the length in advance.

Here is what we've found since first being diagnosed with epilepsy in my daughter. She was 20 when diagnosed. It has been four years and she is, as of January 9, one year seizure free from complex partial/absence seizures. My hope is that some of this information can, and will be, helpful to anyone who can relate with anything contained herein.

Jessica was always different from other children. She couldn't keep up with others when playing, periods of time where she needed much sleep, mood swings, gray patches of hair at 11, thin skin with the body of older woman by that time as well (having started her period just after her ninth birthday).

The doctors didn't know what was wrong with her. Not only did she have all those things and more, she began a voracious appetite at about six and began packing on weight.

They knew something was up but didn't know what. They did everything from simple thyroid testing (which showed it normal to borderline hypo) to extensive testing for variations of aging disease which had to be tested in CA (we're in OH).

She suffered with out of the blue anxiety, mood swings, sleeplessness, reduced appetite, voracious appetite, thin skin, hair falling out. As she aged to about 15 she'd even have periods of extreme itching when she would literally pool blood under the skin where she'd scratched...like something in a horror movie. We didn't know at those times her liver was highly involved.

Also during this time it seemed that she couldn't do anything without injuring herself from her back to her ankles and neck. She had surgery on ankle and was diagnosed with 3 herniated discs at 18 (just before 19th birthday).

She managed to graduate high school and began her first serious relationship. She was on the pill and managing, if not great. She told me she was having these weird stomach aches with weird "dreams" right before. She knows she has a dream but couldn't remember what they were. Well, that was strange, but just another thing that couldn't be explained. All I could do was make a mental note as we were dealing.

Christmas Eve morning, just after her 19th birthday, she came to me to tell me she was pregnant after eight pregnancies tests (because she was in disbelief). She was on the pill and couldn't comprehend this happening. We had the pregnancy confirmed and got her in with an OB.

This is where everything began to reveal itself.

Thanks to an observant OB dr who asked the right questions at intake, he ran comprehensive tests on her thyroid. They called us immediately and had already scheduled an appt. with an endocrinologist they said as her thyroid was "out of control" and at very bad levels.

We knew nothing of thyroid and they acted VERY concerned so we were as well. What is going on and what about this precious new baby?

We went to the endo who diagnosed her with grave's disease, grave's opthalmapathy, and thyroid goiter. Further, after taking a history, he said she'd had the even more rare childhood grave's...which explains so much. He explained to us that there wasn't a high chance of the baby making it through with grave's as uncontrolled as her's is but that he'd do his best (even doing surgery while pregnant if necessary).

Long story short, God sent that baby to save her life because doctors were clueless and He carried him through completely untouched by all the ugly and drugs. He's a happy and healthy four year old...again, completely untouched, mentally or physically, by all the ugly.

She continued having her "dreams" and severely upset stomach that went away as quickly as it came. However, we were very busy trying to manage the horribleness of what she was going through in the pregnancy. Her graves was completely uncontrolled and the emotional, physical and mental toll her her mind and body were almost too much to manage. The doctors didn't treat the baby as "real" until she was 7 1/2 months pregnant. It was bad.

After the baby was born, it became an emergency situation to have her thyroid removed as she began another thyroid storm in the beginning of postpartum. This time her liver, kidneys and heart were involved to scary degrees. We had the emergency surgery and hoped that life would be fine.

She had to have a tubaligation at 20 as the doctors told her that she could never be pregnant again. Even if she were to do better, all the things she could pass on due to heredity were something to consider as well.

It was after the baby was born that I finally saw her during one of her times of "dream" and stomach episodes. All she did for some seconds was tuck her head down and swallow continuously. She remembered none of it and didn't believe me. We later began to wonder if she was having a seizure of some type. I began to realize that her emotions before, during and after this time were highly affected as well...as was her cognitive functions.

Sure enough, the doctor confirmed that she felt she was having absence seizures and sent her to a neurologist.

This was one of the worst experiences of all the doctors we'd seen. He immediately agreed that they seemed to be absence/simple partial seizures and began a bunch of testing. When one eeg and an mri came back clean, he began to hint they were psychosomatic due to stress she'd been through the last year. I strongly disagreed, explaining that would make good sense, but her seizures began at 15...well before the horrible past year. He didn't listen, even though he was medicating her for seizures. Makes no sense.

Anyhow, by chance she was hospitalized with pan colitis where they did an eeg which showed focal slowing and seizure activity. We went to another neurologist who ran an mri with contrast and found gray matter heterotopia, bilateral, with larger on left side...where the focal slowing was in the eeg.

All during this time and after we'd recognized her seizures as such, we saw an absolute and very defined pattern to them. They were every two weeks like clockwork...within a couple of days of onset of menstrual cycle two weeks after at ovulation. There was no exception to that rule. I told her drs this and that hormones had to be involved. But, by this time she had several diagnoses with several specialist who all seemed to have their own tunnel visions that couldn't see outside the box and envelop the entire body. By this time she'd been dx'ed with gray matter heterotopia, ehler's danlos syndrome (hypermobility type), grave's disease, grave's opthalmapathy, seizure disorder, pan colitis, lymphocytic colitis, seizure disorder. Her specialists consisted of PCP, endocrinologist, geneticist, OB, gastroenterologist, hematologist, neurologist, rheumatologist, and various specialists at the Cleveland Clinic. The geneticist wants to do specific testing as he says all these things are NOT coincidence and with her having one genetic and one congenital disease there is a connection. We've yet to do that.

We began new drugs with the new neurologist that helped the seizures NONE. The meds weren't helping and she couldn't function on them so she went off of them...accepting she'd have seizures for forever.

When she was in the hospital for the pan colitis, however, she was given IV steroids. She didn't have a seizure for four months after! We'd noticed prior when she had to have oral steroids for something, she went two months.

We tried to explain this to specialists and tell them that's a key somehow...right in our face. They'd just look at me and say, "Hmmm". That's it. I told them that I believed the gray matter heterotopia gave her a lower resistance to the seizures and that either her female hormones or the inflammation in her body due to autoimmune disease were bringing the contributing factors to fruition...the straw breaking the camel's back. Again, "Hmmm."

Finally, as a last resort, I explained this to her new family doctor and he said, "Of course that's possible. Look, she's so rare that anything might help that's not considered a standard treatment." He explained that there's something called "pulse steroid therapy". and began her on it.

She takes low dose steroids every three months (or sooner if she feels body flaring up). She's been seizure free another six months for a total of a year now!

That said, during this time we've been able to have her thyroid disorder much more controlled as well. Everything in her body is calming and no seizures.

She's now seeing one dr and taking very few meds with amazing results.

I'm sharing this because doctors simply don't know enough outside of their "box" to look for possible causes of seizures that might come into plain view. Further, they don't like to be questioned at all and tend to refuse to listen if someone does question. Not a good combination.

If any of this resonates with you in regards to yourself or a loved on, please tell your doctor and demand simple blood work to looking for contributing factors. Like us, if the contributing factor is there and addressed, there could be great results!

Good luck and blessings to all!

Last edited by kymdawn; 01-16-2012 at 04:31 PM.
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Old 01-16-2012, 04:19 PM
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A quick update...

My daughter was just released to drive an hour ago!!!! How much that means to a young person!!!

Please keep up in your thoughts as we will you!

kymdawn
Mom of Jessica
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Old 01-16-2012, 04:24 PM
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Thanks for your post kymdawn. It points up how hard it is -- and how crucial it is -- to ask questions, and be persistent when getting medical issues addressed. It sounds like you were an excellent advocate for your daughter, especially given the foot-dragging, the misdiagnoses, and the apathy exhibited by some of the doctors you and she consulted. Many doctors mean well of course, but the tunnel vision you describe seems to be symptomatic (pun intended) of a disorder that is widespread in the profession.
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Old 01-16-2012, 04:36 PM
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Your daughter has been thru H***L and back. My daughter has Hashimoto's disease. Initially, she was having terrible menstrual cramps and irregular periods. Thyroid problems run in my family, so I finally convinced her to go to an endocrinologist and have her thyroid check.. The ob/gyn kept putting her on birth control to help with the bleeding. By then, she had already lost 1/2 of her thyroid to Hashimoto's. And she was suffering from depression due to hormonal issues. Fortunately for my daughter, she doesn't have the seizures like her mom.

And like you say, demand simple blood work/test if you suspect something is wrong and the dr. doesn't want to believe you. Trust your own inner voice.
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Last edited by Cint; 01-16-2012 at 04:37 PM. Reason: delete a word
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