Hello - Glad to be here

[Blondie47]

This is a wonderful site. I wish that I had found it sooner!

Our 13 year old daughter had been seeing spots and having headaches last fall. She was diagnosed as having migraines. The spots were called aura's.
Then she had clonic seizure in October. It was tramatic and shocking. We dialed 911 and our journey into epilepsy began.

Let me first state that our daughter is a Leukemia Survivor. She was diagnosed in 1997 (19 months old) and had chemo for 2 and half years.
The chemo saved her life, but left calcifications on her brain. She has had a learning disability because of it, and now epilepsy.

We are currently on our 2nd neurologist. The first one was part of the group at our Children's Hospital. For 5 months they could not control her seizures. Our daughter missed a great deal of school, and collapsed in the shower during a clonic (Thanksgiving Day). The med was Keppra. We begged them to take her off it- it gave no control. They refused - kept upping the dose.
Finally they added Depakote and we gained some control.

I sought out a second opinion at a level four epi center. We were told that the initial diagnosis was wrong (generalized), the meds were wrong too.

After LTM, she was placed on generic Trileptal and our lives changed 360 degrees. The correct diagnosis is Multi Focal localization epilepsy (simple partial seizures) (Frontal and Occipital)( sometimes with impairment). Right now we are on 600mg 2x daily.
And side effects are minimal. Blessed. Seeing our great epi doc June 15 for our first follow up since LTM. Thanks for listening!

 

[Nakamova]

How frustrating that you had to the learn the hard way that not all neurologists are the same. While it's true that it can take awhile to find the right balance between drug, dosage, and side effects, it's sounds like your first neurologist wasn't able to listen to you and have an open mind. Good on you for getting a second opinion, and congratulations on finding a good doctor and a treatment that is working for your daughter.

 

[skillefer]

Hi blondie! Welcome to CWE. Sorry to hear about your daughters problems..but glad to hear that you found a wonderful doc.

 

[epileric]

Welcome to the site

It sounds like your experiences with neurologists is similar to many people. I've had to keep changing neurologists for a while before finding the right one.

There are alternatives you can research. Hopefully the right one can keep your daughter on a minimal dosage of pills or even eventually get off of them http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments.

Something I do to try & lessen my seizures is I keep a schedule of when I have a seizure, wake & go to sleep, take my meds, move my bowels (I've found that full bowel/bladder increases the likelihood of a seizure) and what I eat & when.

 

[RobinN]

Hi Blondie - WELCOME
We also started on this journey with our daughter at the age of 14. We went the conventional route for the first two years, and this past year have found far better control without meds. Journaling and finding causes has been my focus. Making nutritional changes, adding vitamin and mineral supplements for brain and body health, neurofeedback all have made considerable improvement in seizure control and quality of life.

I have to give it some thought, but I seem to remember posting something about calcification, and therapy to reduce this. Neurofeedback also is a way to train the brain. It can learn new methods to work around damaged areas of the brain. It also trains the brain to stop the kindling pattern. I highly recommend this therapy as an alternative to drugs.

http://www.ncbi.nlm.nih.gov/pubmed/7484640?dopt=Abstract
http://www.coping-with-epilepsy.com/forums/f22/iimp-article-seizures-celiac-5379/
http://www.coping-with-epilepsy.com/forums/f22/seizures-induced-eating-1445/#post13746
http://www.coping-with-epilepsy.com/forums/f22/sodium-channel-connects-epilepsy-diabetes-6025/
http://www.coping-with-epilepsy.com/forums/f22/folic-acid-malabsorption-3171/
http://www.springerlink.com/content/7t057466577815r4/
http://pediatrics.aappublications.org/cgi/content/full/120/4/e1120
http://www.gluten-free.org/hoggan/leukemia.txt
you might continue if you want more info... I googled: celiac leukemia

 

[Blondie47]

Thank for your kind responses. I have been reading everything that I can get my hands on regarding epilepsy and greatly appreciate the links.

 

[RobinN]

Migraine, Celiac Disease, and Cerebral Calcifications: A New Case.

Correspondence and Clinical Notes
Headache. 45(9):1263-1267, October 2005.
D'Amico, Domenico MD; Rigamonti, Andrea MD; Spina, Luisa MD; Bianchi-Marzoli, Stefania MD; Vecchi, Maurizio MD; Bussone, Gennaro MD

Abstract:
Celiac disease is sometimes associated with neurological complications. Only one case of celiac disease associated with migraine and cerebral calcifications has been reported. We present a patient with migraine (with and without aura) in whom neuroimaging revealed cerebral calcifications in the occipital and parietal regions bilaterally. Visual examination showed bilateral double scotoma, and further investigations revealed celiac disease. Migraine may on occasion be a sentinel symptom of mild celiac disease.

http://pt.wkhealth.com/pt/re/head/a...8YlsRYbZGpYypmqM!-701738752!181195629!8091!-1

 

[Blondie47]

Thank you Robin! Your links are wonderful.

The calcifications are the result of intrathecal methotrexate chemotherapy. I am well read on that issue.

A celiac panel was done at LTM. We will have the results on June 15th.

 

[RobinN]

Thank you, I am just grabbing, as when I started on this journey I had nothing to go on, other than meds.
From my understanding which is still in the novice stage, Celiac testing can give you false negatives often. I have never had my daughter tested for that reason, and because it was so expensive to do privately. I jumped in to changing diet without the testing. We are not 100% compliant, so I am looking forward to your experience with the test.

I am not happy that you have to be here at CWE, but I am happy for us that you are. It is good to have a specialist in this area. I am sure you have a lot of experience that many of us don't have.

Could it be possible that the calcifications are attributed to both reasons which triggered the seizures?

 

[Blondie47]

Thanks for sharing your experience on Celiac testing. To answer your question, <<Could it be possible that the calcifications are attributed to both reasons which triggered the seizures?>> not likely in my opinion.