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Posted by on Jan. 21, 2009 at 7:22 PM
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I just joined this group. I find myself turning to the experts :) My son is 11 he has been having tests done for a couple of months. He had an eeg 3 weeks ago. Well we finally got the results today. They said he is being diagnosed with a Partial Seizure Disorder and that we are to go see the specialist that read the test in two weeks. I guess at this point I just don't know what to expect, what to do, or not do. If you or your children have been diagnosed with this please share. I really feel alone right now. I haven't even told my son I am not sure if I should or not or even how to explain it. He was diagnosed with ADD  years ago and has learning disabilities. I don't want him to make a joke of it. Also, it makes me wonder if he was misdiagnosed with ADD and unnessicarily medicated for that.. I am just at a loss......

 

Well he has been sent home from school on the past 4 school days because he hasn't been feeling well. So I called their office and told them what was going on now we go in 2 days!

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by on Jan. 21, 2009 at 7:22 PM
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Mikala2659
by Member on Jan. 21, 2009 at 11:54 PM

I'm assuming that the specialist you're being referred to is a Neurologist.   He/she will read the results of the EEG.   Depending on what it says, they may order another.   The doctor will probably ask you to describe what abnormal activity you've been seeing and how often it occurs.  They may suggest and/or prescribe a seizure medication.   It really depends on the individual person. 
My son is 8 years old and significantly delayed.   He does not know about his disabilities.  (I'm sure he knows but I haven't actually sat down and talked to him)   In my opinion, I don't feel that my son is able to fully grasp what this or that diagnosis means.   I also haven't told him because I don't feel that it matters.   His disabilities do not and should not define him as a person.  So when he asks or is ready to know, I'll tell him anything and everything he wants to know.  I hope that makes sense. 
Telling your son is up to you and what you think his understand would be of it.   The doctor and his or her staff are trained to help in these situations.   They may also have reading material to help you and/or your son understand what epilepsy is and what it means.   Do what you think is best by him. 
I hope this helps.   Good Luck to you and your son!  : )

lilmysknowltal
by Member on Jan. 22, 2009 at 10:12 AM

My son is 10 and has had epilepsy since 2 months old. He knows about it to me its important specially with him having a seizure in school and all his friend seeing it.  no one except his teachers knew about till that day.. then i got a book for him to read about bring epilepsy to school.it is a great book and he even borough again last year for them to read. The next day he wanted to show his friends he was okand we went into the very next day.. They do say my sons epilepsy is hereditary or started with him... we know of no family history of seizures. Please note you may not get the answers you are looking for it took a long time before we got ours and still dosent make sense to me.

I still believe my son had his 1st seizure cause the DPT vaccine and he isnt allowed to get the P part "just in case" it was from the vaccine......but all dr cover each other so... i dont think i will ever get the answer to that question...........

Good luck and i hope all works out well............

 

kconklin3976
by Member on Jan. 22, 2009 at 10:58 AM

My son is 14 and has had Epilepsy since he was 7. He  has grandmal seizures usually when he is sleeping and complex partial seizures when he is awake during the day.  His grandmal seizures have been controlled by meds for a while now.  He has a complex partial seizure about 3-4 times a week.  He ABSOLUTLY knows that he has Epilepsy.  Personally I think it is very important for him to know.  If he has a seizure then he can notify someone after the seizure is over so we know what is going on with him and I can also keep track for the Dr's.  Not only that, but I think my son has a right to know what is happening with his body, why he has to take medication, why he wakes up and has a major headache and has wet the bed, why he has "weird feelings" during the day and blacks out.   I can't imagine going through all of that and not knowing why.   Knowledge is power and I want my son to have as much knowledge about Epilepsy as he can so he is not afraid of it.  I have never treated Nick's seizures as a "disability". There are some activities that he has to be more careful with and have someone around  when he is doing them (like swimming), but he does everything a normal 14 yr old boy would do. Our family is also very involved in the Epilepsy Foundation where he has met a lot of friends who have Epilepsy.  It has been awsome support for Nick (and me!)  to have friends who know exactly what it is like having Epilepsy which is a great help for him and his self esteem.  Hopefully your appointment with the Neurologist goes well.  You are lucky that you are going into the appointment knowing what type of seizures he is having.  Hopefully that will help with the "guessing game" of meds to put him on.  Good Luck!!!  

 

Mikala2659
by Member on Jan. 22, 2009 at 11:39 AM

I just wanted to note that my son does know in his terms that he has seizures/epilepsy.   Everytime he's felt weird, had an aura or a possible seizure, he's told me, his teacher or whomever the responsible party was at the time.   What he doesn't know are the correct terms, simply because he doesn't nor wouldn't understand them.   As soon as he asks or I feel he's capable of understanding, he will be told.  
I do agree that knowledge is power.  
My son has more than one condition or disability.   Epilepsy is just one of many of his diagnosis.  

tashah
by New Member on Jan. 22, 2009 at 5:39 PM

Thank you ladies for your responses. I definitely plan on tell him what is going on. The more I read or hear your responses it may actually make him feel better. (emotionally) To know why he has headaches the way he does or wets the bed when he hasn't drank for hours just to prevent an accident. Or the days that he can't pay attention and gets in trouble at school.

Actually after reading I was surprised they picked it up on the first eeg. Glad, but surprised. Who knows he might be able to stop his other meds and try something that might actually work :)

tashah
by New Member on Jan. 29, 2009 at 4:42 PM

Now I might be more confused than before!!! We went to the Neurologist today and he spent almost an hour with us. He said that he could be having migraines. He said that these type of Seizures can show up the same as a migraine on an EEG. He ordered a MRI next week then he is scheduled for a 24 hour EEG IN APRIL! They said they only have one take home machine and that is the first available opening. They said if anything changes before then to call. His follow up appointment in in June. Is it just me or does this seem weird. These "migraines" are just tiny little headaches that last for like 5-15 mins. Not severe just pain.

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