partial complex seizures

[buffy2000]

Hi my 7 year old son has been having seizures for about 5 months now only 3 months ago was put on medication started off with staring, chewing and playing with his hands.He was having about 5 a day then he started to wonder around when having a seizure. He had an EEG done and had a seizure during the EEG,since then his seizures tripled one night in 1 1/2 hours had 10 seizures took him to the hospital and he was put on Tegretol 100mgx2 a day then increased to 12.5ml (liquid)still had seizures one after another so changed him to Topamax 3 weeks ago. His seizures have decreased to only 2 or 3 a day, but other night doing homework he didn't know what to do i asked him what 1+1 was he didn't know and had around 8 seizures in 1 1/2 hours. We will be seeing a neurologist for the first time in 4 months time, can't get an earlier appointment i'm at my wits end his school is suffering his memory is getting worse. Why hasn't my doctor got a ct scan done yet or mri? seems nobody is doing anything and my son is suffering. Haven't even seen a pediatrician only the one in hospital. My doctor sent me to another doctor who deals with allergies???? and i can't get anything done there.
Is this normal waiting time??? Like i need answers i'm Pregnant and very worried if my baby will develop seizures?

[CCF-Neuro-M.D.-JT]

Your son definitely needs to see a peds neuro, or at the very least a pediatrician who can help. 4months is NOT an appropriate time if he's having multiple seizures a day and cognitive changes despite adequate dosages of medications. And he does need an MRI without question to evaluate his brain to see if there is anything going on in the temporal lobe (which is where many complex partial seizures begin). Although he's only having complex partial seizures right now, if they secondarily generalize (meaning he goes into a grand mal) take him to the ER. He should also be taken to the ER if he has mult seizures within an hour again where he may need to be admitted and worked up as an inpatient.

I can't begin to understand how frustrated you must be, but I agree that your son needs help. Sooner rather than later.  Consider taking him to a major clinical or academic hospital for further evaluation, or just talk to your doctor about your son's condition. Let them know how worried you are and how this is affecting his schoolwork and overall being. As for your second child, there is a genetic predisposition to epilepsy, but it depends on a lot of things such as what kind of sz, is it fever related, any neuro abnormalities, etc... No easy answer and I'm not sure anyone can definitively tell you what are your chances of having a second child with epilepsy. Best of luck to you and your son.

[sfsaint]

My son was 6 when he started having partial complex seizures, sometimes he had just a couple a day, other times he would have a dozen in a short period of time.  He was on Zurontin for years, but as he grew, the dosage was not monitored and adjusted.  The doctors had good hopes that he would grow out of the seizures, but in 12/01 he had his first tonic clonic which scared me to death!!  He has had 5 of them, but none in the last 3 months (knocking on wood!!) His neurologist changed his meds to depakote, and we've been increasing the dosage after each of the seizures, and at his current level, there are no partial complex, or tonic clonic.... So we are keeping our fingers crossed, and watching his levels!!

My heart goes out to you, find a great!! pediatric neurologist and get him in and be agressive.  Contact the epilepsy foundations for additional information, and if you need help finding a doctor.  INFORMATION is the key!!  

Alot of doctors don't follow the school of thought about heredity, but I have a niece who is epileptic as well, so I have my own thoughts regarding that aspect.  Also, my son has an egg timer next to him whenever he is on the computer or the playstation or gameboy, we limit his time on, followed by a break.... I think video games, played a big part in his seizure activity.

Good luck, keep positive thoughts, and everyone be safe and healthy...

((((((hugs)))))
Brenda s.

[jan]

Buffy,
I am sorry for what you and your son are going through right now.  It must be very hard.  I had my first seiz. last yr. at the age of 44. It must be hard watching your child go through it.
I have no words of wisdom for you, but I can direct you to 2 sites and they can further direct you to sites for parents of children with epilepsy and I am sure they can give you some tips and comfort.

http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics&forum=Epilepsy&number=33&DaysPrune=


http://groups.yahoo.com/group/epilepsysupportgroup/messages

I hope these help you.

[mikesgirl]

Buffy, I don't have a lot of info to share with you, although I have done extensive research on epilepsy meds.   Mostly, I just wanted to extend my empathy because I know how frustrating and frightening it is when someone you love is suffering and it seems that no one cares, and no one seems to share your urgency about getting treatment.  One possibility is that if he has more or more severe seizure activity, you might consider just taking him to an ER for more evaluation.  For some reason, ERs seem more likely to order CTs and MRIs when this sort of thing is going on.  Has he had an EEG?  Just wanted to share that it drives me nuts to see the lackadaisical attitude of so many doctors.  I would be completely frantic in your situation and I have no idea what I would do.  Bless your heart.  I will be thinking of you.  Oh, one other thought.  There's a website called Kasamba.com where you can post questions and get answers to some of them in a very expedient manner.  I hope this post will allow that url to show in this post.

[headproblemz]

I do not recommend that you follow the advice that the aforementioned person said. No offence.

[buffy2000]

Thank you everyone for your help. I'm still waiting to hear from the doctor...

thanks again so much

Buffy

[bridgetsfury]

Hi Buffy2000. I can relate exactly to what you are going through. It is hard to explain to someone how you feel and what goes through your head to see someone you love so much having a seizure. I am 28 and my mother is epileptic. You must keep truly focused on the treatment options. My mother recently laerned that the Cleveland Clinic has some of the best treatment options available from a family friend who has spent many years doing research on brain disorders and tumors. I would definitely insist on an MRI scan . It shows a lot more detail than a CT scan. A CT scan is a good place to start but you might as well get right to the point. There are many reasons to want to know what in the heck is going on. Being pregnant I know is also frightning. I also have a son who is now 9 and at the age of 3 was doing some pretty odd things in his sleep that scared me half to death. Being that my mom has a brain tumor and they don't know enough about them to know if they are heriditary or not, I was beside myself too. It all turned out to be OK Thank God, but was still enough to keep you up at night. Best Of Luck!  

                                       Bridgetsfury

[cris2002]

i have a child who is 3 1/2 years old and started having seizures at 48 hours old so i know how hard it is. if you live in new england go to dartmouth hithcock medical center in lebanon nh. they have a very good medical team and they get thing done. they have help me and my family out so very much. I do not want to put doctors names on here my my sons doc down there i owe my son life to he is amazing. get books and read all you can on meds for seizures. the more info you get the better you are prepared to help ask the questions. if you live in vermont call the infant toddler program in what ever county you live in they also help with kids with special needs they help so very much get thing done. well i wish you and your family all the best.

[momtoo]

My heart goes out to you. I also have a 7 year old son with partial complex seizures. His started as an infant, but were such that I did not know what I was seeing, and no one else noticed. At 2-1/2 a friend told me he was having seizures. I took him to his pediatrician who imediately ordered an EEG and MRI. Between her, and the most wonderful ped neurologist we have successfully controlled his seizures. he is currently taking lamictal. One odd thing, after his first MRI-could it be because he was put to sleep?? he stopped having seizures totally for 2 months. When they started back up the doctor was ready with
his first prescription. In an 8 week period we weaned him onto
depakote. Since then he has had a few seizures along the way as he outgrows the dose or type. I hope all goes well for you. Let your son know that this is not a "bad" thing, and he should not feel bad about himself. For me, I treat it like my daughters allergies. It is a medical condition. And my son is very comfortable with that information. He is not afraid and very "matter of fact" when one occurs. Take care.  Love momtoo

[cpsmom]

My son was recently diagnosed with PCS.  He is 15 and began experiencing very marked problems last year.  He now takes Tegratol, but the continues to need increases following bloodwork of his meds.  The doctor explains that this is a process to get the meds to the appropriate levels. It is very difficult to know exactly when and where they are occurring.  He notices a improvement,but it is difficult for him to know and monitor himself during school hours. His normal straight A's have gone down severely and he seems frustrated and unable to keep up.  I am so distressed for him as he is becoming increasingly moody and irritated with all that is going on.  Any suggestions to us, his teachers and counselors?  Thank you