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#1 of 17 Old 04-14-2013, 08:45 PM - Thread Starter
 
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my 2 year old dd has just been diagnosed with epilepsy. she has had 2 seizure episodes, diagnosed as complex partial with secondary generalization-status epilepticus. she is neurologically, developmentally normal.

 

is she special needs? am i posting in the right place?

i am so overwhelmed. she is doing ok but i feel like my heart is broken. i worry all the time and don't get much sleep. this is not the dream i had for my child. i have been doing my best to educate myself and it does help to be informed, but i still feel so sad.

 

any other mamas out there dealing with a child with epilepsy? is there a thread for us?


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#2 of 17 Old 04-15-2013, 08:53 AM
 
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hug2.gif You are in the right place.  I understand what you are going through.  My oldest son was diagnosed with rolandic seizures when he was 9.  It was scary as hell the first time I saw him have a seizure, and I slept on the floor in his room for at least 2 months. Even then, every time he turned over or made a noise, I was at his bedside!

 

He's 14 years old now, and he still has a seizure disorder, though he is supposed to grow out of them eventually.  The sadness in the beginning is a pretty normal response.  Seeing your child struggle is so hard, and knowing that there is only so much you can do is even harder. 

 

From the point of view of someone who has a seizure disorder that is a result of having a bleed in my brain, I can tell you that the seizures themselves are much harder on you emotionally than they are on her.  I have no memory of my seizures.  When I saw my son have a seizure, it suddenly occurred to me how scary that must have been for my family to see! 

 

It will get better with time though.  You will adjust and it will just become a part of your life, not a pleasant part, but a part that you deal with as a matter of course. 

 

Is your dd on medication for her seizures?


 
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#3 of 17 Old 04-15-2013, 09:28 AM
 
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Hi, I was just checking here because my son has epilepsy too. I probably haven't posted on these boards for 9 years -- surprised my account is still valid.

 

Sorry to hear about the recent dx in your family. My son's seizures are also partial that move to generalized. Fortunately he has never had status eplilepticus.

 

I consider kids with epilepsy to be "special needs." Epilepsy almost always goes along with needs that are beyond the ordinary. For my son, he has sensory sensitivity at about the level a kid with autism would have. He also has a lot of difficulty regulating his emotions. He is 11 years old, and getting better at it, but his development has been very different.

 

For us, is is really hard because his issues don't fit in with any one group, so I can't just look up what works for ADD, what works for autism, what works for developmental delay. Dealing with the behavioral and emotional stuff has been much more trial and error.

 

In terms of the emotional fallout for you-- have you ever read the poem "Welcome to Holland"? http://www.our-kids.org/Archives/Holland.html

It fits very well with the experience of having a child with epilepsy. No, this is not the life you dreamed of for your child. You will likely go through the stages of grief (I sure did). Please be kind to yourself as you deal with these stages.

 

There are boards for parents of children with epilepsy. one on the Epilepsy Foundation website is the best I've found.

http://epilepsyfoundation.ning.com/forum/categories/parents-helping-parents/listForCategory

 

I sincerely hope some of this is helpful to you.

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#4 of 17 Old 04-15-2013, 10:58 AM
 
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Hello, my ds also has epilepsy. Hugs to you and your little one. It is pretty traumatic to see some of the seizures. We still have a baby monitor in ds' room and he just turned 12. Luckily, he has not had clonic tonic since on medication. He is still potentially having partial seizures, but hoping he will out grow.

If you can, try to find support groups in your area. It is great to get support here, too, but it is important to find as many people as possible in real life to help. most people do not understand, so you need to help educate. Even doctors struggle to comprehend. Recently, we got an active director for the Epilepsy Foundation, now we have a support group in our area, plus she is knowledgable about services. It helps to talk to someone who understands epilepsy is not the same as other disorders.

I get a lot of medical info from the epilepsy therapy project. We also use their seizure/medication diary.
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#5 of 17 Old 04-15-2013, 11:44 AM - Thread Starter
 
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thanks, mamas. i do think i need to seek out some support.

 

amerline- i cried over the skillet making lunch today when i read 'welcome to holland'. thank you. good perspective.

 

i also checked out the epilepsy foundation forums, thank you.

 

my dd has started on carbamazepine. the first week was so difficult, watching her stumble, slur and sleep half the day away. thankfully this has improved and she is mostly back to her old self. i do think she seems slightly more emotional and clingy, but she hasn't had anymore seizures. i really dont like giving her the meds but at this point it seems that it is the best choice. we are going for a second opinion at the mayo clinic in a few weeks.

 

hoping to work on staying calm if another seizure were to occur. my reaction so far has been to freak out, cry, etc.

it is scary that her seizures last so long. her first ended on its own after a half hour, but the second lasted nearly an hour and she needed 4 med interventions before it was over. the recovery from those meds took several days and her behavior was so unsettling. she was beyond agitated, scratched her body up, crawling out of her skin. there was nothing i could do to help calm or soothe her and it nearly broke me.

 

i did post in the 'i'm not vaccinating' forum, but just adding here that this all began after she received a 3rd dose of pentacel, the dtap combined with polio and hib. we did delayed vaxx and this was her first series of any shots. all of the dr.'s and neurologists so far see no connection. the insert on the pentacel does say that seizures within 3 days is a side effect, and that is what occurred. i am not sure what to make of all this, but this is how it happened. we are going to have a heavy metal screening done just to see what levels (specifically aluminum) are present.
 


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#6 of 17 Old 04-15-2013, 11:55 AM
 
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Originally Posted by summersmama View Post

thanks, mamas. i do think i need to seek out some support.

 

amerline- i cried over the skillet making lunch today when i read 'welcome to holland'. thank you. good perspective.

 

i also checked out the epilepsy foundation forums, thank you.

 

my dd has started on carbamazepine. the first week was so difficult, watching her stumble, slur and sleep half the day away. thankfully this has improved and she is mostly back to her old self. i do think she seems slightly more emotional and clingy, but she hasn't had anymore seizures. i really dont like giving her the meds but at this point it seems that it is the best choice. we are going for a second opinion at the mayo clinic in a few weeks.

 

hoping to work on staying calm if another seizure were to occur. my reaction so far has been to freak out, cry, etc.

it is scary that her seizures last so long. her first ended on its own after a half hour, but the second lasted nearly an hour and she needed 4 med interventions before it was over. the recovery from those meds took several days and her behavior was so unsettling. she was beyond agitated, scratched her body up, crawling out of her skin. there was nothing i could do to help calm or soothe her and it nearly broke me.

 

i did post in the 'i'm not vaccinating' forum, but just adding here that this all began after she received a 3rd dose of pentacel, the dtap combined with polio and hib. we did delayed vaxx and this was her first series of any shots. all of the dr.'s and neurologists so far see no connection. the insert on the pentacel does say that seizures within 3 days is a side effect, and that is what occurred. i am not sure what to make of all this, but this is how it happened. we are going to have a heavy metal screening done just to see what levels (specifically aluminum) are present.
 

That is a very long seizure! I can imagine how difficult that must have been.  My son's seizures only last 1-2 minutes, and that seemed like a lifetime.  I'm glad it seems like the meds are working.  My son didn't seem to have a lot of reaction to the meds he is on, but I had very nasty reactions to the first one they had me on.  I am now on a med that works for me, but I do understand the struggle with having to put your child on meds, due to the possibility of side effects.  . 


 
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#7 of 17 Old 04-15-2013, 05:53 PM
 
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Summersmama, Due to the relationship of the seizures to the vax, I think you should report it, if your doctor has not. http://www.fda.gov/downloads/biologicsbloodvaccines/vaccines/approvedproducts/ucm109810.pdf has an number to call and report.  

 

My ds takes carbamazepine. He was very sensitive to the side effects of some of the other medications he has taken, and luckily the carbamazepine has been less problematic.  He did get dizzy from it when we increased his dose , but otherwise seems ok.  Actually seems drunk or impulsive, if he misses a dose.   Some definitely react more than others.  

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#8 of 17 Old 04-15-2013, 07:18 PM - Thread Starter
 
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thanks, melissa. its nice to hear about another family dealing with the meds.

 

and yes, i did report this to vaers.
 


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#9 of 17 Old 04-20-2013, 06:52 AM
 
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Hello Summersmama, how is your dd doing? Has the medication successfully stopped the seizures? Since she was dx with partial complex seizures, we're you able to identify episodes are seizures besides the generalized?

We just talked with the school nurse for ds and found his seizures are not part of IEP anymore and that he did not have a health etc at school. We are coming up on his 3 year evaluation in the fall. We are hoping to get the nurse added to his team and to get some changes to his schedule, which we have requested for the past 3 years, but not received. Always something to do- I would not have even thought a lot about this, if I had not had a chance to help with a local auction to support cures for childhood epilepsy. I was able to meet our local advocate and she put me in contact with a nurse that was at seizure training that could review ds' IEP. Another request I made, is that they have a staff training for ds' teachers next year to identify either seizures or anomalies in his performance that might be seizure related. We are hoping his seizures are being treated, but we notice him spacing off in an absence kind of way frequently.
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#10 of 17 Old 04-21-2013, 09:16 PM - Thread Starter
 
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hi melissa-

 

my little one has not had any more seizures since her big #2 incident at the end of march. her sleepiness has gotten better after a week or so on the meds. i would say that she seems more clingy/whiny and sometimes she seems overly hyper. but no more seizures.

 

we had our first follow up with local peds neurology. she had an eeg that still shows slowing in the anterior right temporal lobe. this has been bothering me, a lot. the dr. thinks she is doing quite well, very normal activity, skills for her age, and doesn't seem very concerned. just wait and see, the dr. tells us. when i brought up the insanely high amounts of aluminum in the vaccine, and asked what this aluminum could do to her brain, she did a total side-step, 'you need to vaccinate your child' dog and pony show. i told her i didn't want to debate, i just wanted to know what the aluminum could do. no answer was given.

 

we go to the mayo clinic next week for a 2nd opinion. i have 2 more pages of NEW questions to ask when we go there. the more i research and read, the more questions i have. i want to know more about that focal area where the activity is happening. i want a heavy metals test done on her, and i want to have a CONVERSATION on the vaccine issue. i don't want a debate, i just want to ask a few questions and not be scolded or laughed at or treated like a nutjob.

 

most days i continue to be pretty upset about all this. i feel very uncomfortable not knowing, not controlling the situation. will she deteriorate with this continued focal slowing, as the abnormal eeg shows? what will be the manifestation?

 

i am also realizing that i need to find a way to accept the reality of this, as the more i argue and fight what is (in my own head), the more exhausted and stressed and in pain i find myself. no matter what i love her dearly. it is what is happening. i am angry and upset, but i need to find some peace so i can rest and be a good mom.

 

peace to you and your ds. it is nice to hear that a training may be held for his teachers. i can't imagine sending mine off to school right now. i am so on edge about taking my eyes off her for one second.


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#11 of 17 Old 05-08-2013, 08:07 PM - Thread Starter
 
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update:

 

we went to mayo clinic for a second opinion. good news: 4 weeks after the 2nd big seizure/hospitalization, DD's eeg has finally returned to normal!!! overjoyed!!

other than that, though, no new information. same diagnosis, treatment plan, etc as local peds neurologist.

when i brought up the vaccine, i was given a familiar story: "you should see the suffering of a child who is ill with a disease that could have been prevented with vaccination". no discussion at all on the specifics of our situation, with the onset of seizures immediately following the pentacel vaccine.

 

next week, we are going to an integrative m.d. who is also a DAN doctor. i am so interested in what will come of this appointment.
 


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#12 of 17 Old 05-09-2013, 03:15 PM
 
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That is great that her eeg was normal!  Hopefully, that indicates the medication is working and she is past any bad side effects.  

 

I do find it disconcerting about the dr.'s and the issue of vaccine.  They should not overlook the possibility of long term effects on your child caused by the vaccine.  I am pretty sure there are compensation programs for kids that have documented injury or poor reaction from vaccine.  Maybe you need to readdress it with the ped that originally gave the vaccine.  I thought DAN doctors work with kids with Autism?    

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#13 of 17 Old 05-09-2013, 07:37 PM - Thread Starter
 
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yes, your are right-the DAN doctors deal with autism. the one we are seeing is an integrative m.d. who also happens to be a DAN doctor. we are hoping to get some discussion/answers on the vaccine issue and the heavy metal test we would like done. the more research i do on seizures, epilepsy and vaccinations, i keep being lead down the road of autism. my child, so far, does not appear to have any issues related to autism, but i am learning that many little ones begin their autism journey following a vaccine and subsequent seizure event, and continue to have seizures in addition to their ASD diagnosis.
 

so i wonder...what was it about that vaccination that started this whole mess? can it really be just a COINCIDENCE? is my child going to slip into the world of autism? so far, she seems ok. is there a chance that treating my DD in the ways of the DAN doctor might be beneficial for her?

dear god, i hope this m.d. has something more to offer us.


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#14 of 17 Old 05-09-2013, 09:50 PM
 
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hug.gif Mama. I am following your story and hoping you can finally get a doctor who actually cares and helps in some way. From what (little) I know about vaccine induced autism it is more likely to be from the MMR (though I'm sure not always) and usually the behavioral changes happen fairly soon following the vaccine, regression, speech, autism like behaviors. Like within the first two weeks or so. But I think if the doctor has experience in clearing heavy metals from the system, and the diet changes which can lessen autism symptoms, then those can only be helpful in your case too. Have you tried contacting the vaccine manufacturer to see if they concede that that vaccine can cause epiliepsy/seizures? Since you said it stated on the packet that it can. Not that it will change anything, but at least you have something to say to the doctors when they tell you that you're being ridiculous regarding the vaccines.  

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#15 of 17 Old 05-11-2013, 07:07 AM
 
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Summersmama, I think you should not focus energy on autism unless you find that your dd is exhibiting behaviors or tendencies. Seizures do not cause autism, but can be comorbid with autism. Seizures rarely cause brain damage- only in extremely rare situations. They are mostly scarey for those watching the person seizing, but not damaging. There are types of epilepsy, like Dravet or Lennox Gastaut, that appear like autism, but have distinct patterns on the EEG. Epilepsy that is genetic can be triggered by vaccination, injury, etc., so dr.s may look at it as it is not a cause, but the effect expressing what was already there.

It really seems, according to what you wrote, that the seizures are controlled (which is awesome) and that the type of epilepsy (partial seizures with secondary generalized) is much less likely to have intellectual or cognatively disabilities. This is the type of epilepsy my ds has, and for the most part he appears as a neural typical kid. Because partial seizures affect different parts of the brain, each person with seizures can have some unique challenges, but there are also commonalities. For instance, ds has problems with memory processing and executive functioning, which s not unusual in epilepsy. He was dx with ADHD and dyslexia by a psychologist following a nueropsych exam, but his epitologist lists it on his charts as ahdh cause as result of epilepsy-something similar to that. With each aed ds was on, the psych changed the type of ADHD because aeds also impact memory and behavior. It sucks when the choices are seizures or aeds with side effects.

I hope your next dr is able to help give you some peace mind. Here is some advice I found useful from an unrelated thread on here: don't research your child's condition through google because often website show extreme situations as examples and lack editorial oversight. Talk to your dr.s and support groups (epilepsy foundation and epilepsy therapy project) to find information.
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#16 of 17 Old 06-15-2013, 08:39 AM - Thread Starter
 
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update: i have updated our story at my original link in the no vaccine forum.

 

http://www.mothering.com/community/t/1376070/30-min-seizure-after-pentacel-vax/20#post_17363951


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#17 of 17 Old 06-18-2013, 06:09 AM
 
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It is good news about the dr being proactive with your dd. Not good news about the heavy metals and imbalances. Is there any other possible means of exposure besides the vaccine for the metals? Hopefully he can help you report and maybe even get compensation for the medical treatment.
I had a good allergist in La Crosse that worked with allergies/sensitivty/intolerance, if you are interested.
I think you will want to go slow to the taking your dd off aeds all together. There is a good chance that she could out grow the seizures, but if removed too soon, then they can cause seizure and some people claim the meds become less effective with the on then off and then on again. If she is seizure free for 1-2 years or has passed a point of brain growth with out seizures, she may have outgrown them
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