My daughter and I need help!!!!

[kmc3076]

I am new to this site, but I need help!!!! My daugther is 12, she just start
ed having seizures 16 monthes ago. First they told me that it was complex migrains, then they said that it was complex partial seizures, and now they are trying to tell me that she is depressed and that is why she is having seizures. Now they are not even taking it very seriosly anymore. She is still having the seizures. What do I do now?

[Heather]

Get a second opinion and it sounds like you need to find another doctor all together. If a doctor won't listen to you and take you seriously, you need to find another doctor.

If your gut is telling you the doctor's making bad decisions, you're prob right. Everytime I've ignored my gut feeling, I've paid for it the hard way.

Also, if you haven't already, take her to a neurologist.

[kmc3076]

The neurologist is the doctor that has told me this, but I am in the mist of trying to find a new doctor. I have put her in home school because I am so scared of her falling and hurting herself. I don't think that she was depressed before, but she sure is getting depressed now because her whole life has changed and we don't even know why. Thank you for your advice.

[Heather]

When she goes to the neurologist, she also needs to have an EEG done.

[epileric]

I've had seizures all my life but when I was about 40 yrs old I was sent to a neurologist who after talking to me for 10 minutes decided I didn't have seizures & tried to take me off all of my meds, needless to say that I had a huge convulsion a couple of days later.

Of course I changed neurologists immediately. I agree with Heather that you need to find someone else who will take you seriously. There are some good doctors out there, it's just a matter of finding them.

I would also recommend an MRI & hopefully a battery of tests to go with the EEG

[kmc3076]

The first thing that the doctor did was took her off her meds. She has had so many seizures since then and they seem to be getting worst. I am looking for a new doctor now. Thank you so much for your comments. It helps to know that our family is not the only people going through this. Thank you again!

[Heather]

Taking her off all meds was stupid, esp if she does epilepsy. Show could go status epilepticus. If he took her off meds cold turkey, that's even more stupid. That could cause anyone to have a seizure, whether they have epilepsy or not. Any doctor knows that, whether they're a neurologist or not.

Start keeping of calendar of when she has seizures and describe them, the best you can. It would be helpful to the neurologist and for you to keep, so you can track it. I had a neurologist, that (I didn't find out until she dropped me as a patient) thought I was having anxiety attacks, even though I've had epilepsy most of my life. When I picked up my medical records, there was almost NOTHING in there. I had been going to her for about 8 yrs. You could fit my medical records in a small envelope.

Keep track of everything, dates, seizures, meds, dosages, etc.

[RobinN]

Dear K - I am away from home this week and it is not easy to reply via iPhone but your situation sounds very similar to my daughters. I will write more next weekend . in the meantime you can read my blog (linked in my sig remember to read from the bottom-first post to the top) Gives a bit of an idea of where we started and where we are at now

hang in there

[No Shame]

I was diagnosed at age 2 years ago at age 29, with simple/complex partial seiuzures. My first neurologist was great, and was sure of the diagnosis with EEG. I went to a different neurologist for a 2nd opinion, and he is part of a research and teaching hospital, and he gave me no direction on my medication, and even though i had 4 abnormal EEG's, he questioned my mental health, even though anxiety does not register as spikes on an EEG. It was more mentally and emotionally exhausting than it needed to be to deal with this doctor. Move on to a better neurologist--that's my advice! I should have stuck with the 1st neurologist now looking back! When you find a good one, keep 'em for the long haul.

[Zoe]

I am new to this site, but I need help!!!! My daugther is 12, she just start
ed having seizures 16 monthes ago. First they told me that it was complex migrains, then they said that it was complex partial seizures, and now they are trying to tell me that she is depressed and that is why she is having seizures. Now they are not even taking it very seriosly anymore. She is still having the seizures. What do I do now?

Hi I just posted the links below to "No Shame" in another thread. Some of the conditions that cause seizures, whether or not they are "eilepsy" run in families.
The most common misdiagnosis is of cardiac disorders which can also affect behavior and mental states. Do a lot of looking around and try to find a dr who will look for the cause of the seizures, not just label them as "mental" or even as "epilepsy" because the drugs for those conditions could make any unrecognized problem much worse.

Internal Medicine Medical News about refractory temporal lobe ...Hippocampal sclerosis in refractory temporal lobe epilepsy is associated with gluten sensitivity. Journal of Neurology, Neurosurgery, and Psychiatry ...
http://www.mdlinx.com/internalmdlinx...le.cfm/2628864

http://www.worldcat.org/oclc/56956444
----------
Misdiagnosis of Epilepsy - WrongDiagnosis.comBasilar artery migraine - BAM is often misdiagnosed as epilepsy; ... Epilepsy misdiagnosed as schizophrenia: The book "Preventing Misdiagnosis of Women" ...

http://www.wrongdiagnosis.com/e/epilepsy/misdiag.htm


Abdominal epilepsy misdiagnosed as psychogenic pain.Abdominal epilepsy misdiagnosed as psychogenic pain. P. D. Singhi and S. Kaur. Department of Pediatrics, Postgraduate Institute of Medical Education and ...
http://www.pubmedcentral.nih.gov/art...?artid=2428499

Cardiac-related symptoms often misdiagnosed as epilepsyBritish researchers performed simple, noninvasive cardiac testing on patients with apparent epilepsy, many of whom were receiving anticonvulsant medication, ...
http://www.theheart.org/article/296309.do

Epilepsy and Intellectual Disabilities - Google Books Resultby Vee P. Prasher, Michael (Michael P.) Kerr ... - 2008 - Medical - 232 pages
Sleep Disorders Misdiagnosed as Epilepsy Several sleep syndromes cause confusion with epilepsy: • Narcolepsy is a disorder of rapid eye movement (REM) sleep ...
books.google.com/books?isbn=1848002580...

The Differential Diagnosis of EpilepsyEpilepsy and Intellectual Disabilities, .... one generation of a family being misdiagnosed as having epilepsy. ...... Zuberi SM, Eunson LH, Spauschus A, et al. (1999) A novel mutation in the human voltage ...
http://www.springerlink.com/index/mh41870755723586.pdf

[skillefer]

Ok..the first thing to do is to get a new neurologist. Also, get everything in writing as far as when he pulled your daughter off meds and how. Ask for a copy of her records and start doctor shopping. If you have a video cam, the next time she seizes record it. That gives the new doc more evidence. And if she has back to back seizures, take her to the emergency room. (My personal thoughts is that the current neurologist is a flaming idiot who ought to have the pants sued off of him.)

[tripletdad]

I had my own issues when i was your daughter's age. My original neurologist took my off of Pheno and on to dilantin too quickly and it really messed me up for about a month. My point is there are good neuros and bad neuros just like there are good mechanics and bad mechanics. Please seek a second opinion asap. I dont know where you live but there are some good ones in southern california.

[epileric]

Hope this helps a bit. You can hear what others said about doctors in your area

http://www.ratemds.com/social/?q=node/8521

[Bernard]

Hi kmc3076, welcome to the forum.

... My daugther is 12, she just started having seizures 16 monthes ago.

Are her seizures, by any chance, occurring in a pattern related to her menstrual period? Hormonal changes associated with puberty can sometimes be enough to start triggering seizures (see catamenial epilepsy).

Have a look at the proactive prescription for epilepsy. It should give you some ideas on things you can do while you search for a doctor who will help.

[kmc3076]

Well we thought that it was her horomones at one point and they started her on a birth control, but it was very mild. I was told that they were going to change her script but that never happen. I think that they only put her on it in the first place because i pushed so hard. I am trying to locate a new doctor now. It is a lot harder than people think to find one. I am scared that we will waste time finding another doctor that will not help us.She is having them so often that I don't let her do anything but sit on the couch, because I am so scared that she will hurt herself. They seem to be getting more intense. When we go to the er the give her a cat scan and send her home, because they said that if she is not seizing at that time there is nothing that they can do. She has them so much that the ems knows her well.

[RobinN]

from all of my research (PubMed studies)I understood that BC pills were not found to be helpful with Catamenial Seizures. It has been found that it must be Bio-Identical Hormones.

I am also finding that too much insulin in the system causes an imbalance of estrogen in the body which is known to excite the brain.

[kmc3076]

I have gotten my daughter a new doctor. She will go to duke university on may 11th. I heard that this is one of the best places to go to. Please pray for us and keep your fingers cross that they can finally help my daughter to at least get some of her life back on track. I have taken all suggestions, wrote them down to take with me to her appointment. Thank you again for all of your support!!!

[Zoe]

I have gotten my daughter a new doctor. She will go to duke university on may 11th. I heard that this is one of the best places to go to. Please pray for us and keep your fingers cross that they can finally help my daughter to at least get some of her life back on track. I have taken all suggestions, wrote them down to take with me to her appointment. Thank you again for all of your support!!!

And please let us know how it goes for her and how you are doing too!

[flinnigan]

Duke is a great place to be. When it comes to our kids we have to fight for the best. I had a scare with my son in 2007. It was a horrible time. We finally got to St. Jude's Childrens Hospital and they were incredible. He's fine now and is just on yearly check ups. His Dr's use the term miracle and tell us to take it. Keep positive and keep fighting.