getting frusterated and nervous

[jaysmom]

jason has been seen by the pediatrician again as his tegretol just doesnt do the trick. we have upped his does a few times and even added in a 3rd dose a day but to no avail. he had 10 or 15 partials at school and home within a week and then a drop attack in PE class (grade 8). with this one, he took another blow to the head as he went down on the concrete in the gym doorway. i am getting frusterated and nervous. there was a head MRI and another EEG booked for 3 weeks from now. that is amazing living up north as it usually takes about 2 to 3 months to get the testing done here. he is labelled as URGENT which is nice as it is not as long as a wait but in the same breath, they think something is wrong .....
i dont understand why with all the reading i have done....which is a lot...it says everywhere that drop attacks you loose muscle tone and drop. not consciousness though. jason looses consciousness with every drop. he is out for at least 30 seconds. he does not convulse at all though. just out cold with eyes wide open as if he is dead. does anyone relate to this?
i could use some insight if you would.
getting nervous. after the result of this ( in december) we will be putting jason on topamax. i am not sure if it will be with the tegretol or just alone but nervous to put himon something else after 2 years of tegretol

 

[Rae1889]

Does he go stiff too? Because these might be Tonic (just stiff without the clonic/shaking phase)

Does he have a neurologist as well? or just a pediatrician? Has he been to the ER yet? or have you brought him in when he has all these seizures. I am sure you know about going status right?

Here is a link for you to request a referral to someone in your area.

http://www.neurobc.com/Neurologists/neurologists.htm

 

[Nakamova]

I agree with Rae -- they sound like tonic seizures rather than drop seizures. They're common with Lennox-Gasteaux epilepsy, but they can happen to anyone with other kinds of epilepsy too. They usually last anywhere from 20 to 60 seconds, and can involve part or all of the body, and some loss of consciousness.

If the Tegretol isn't working then it's a good idea to find something that does. Switching drugs can be stressful, but sometimes it takes a few tries to find the right drug and dosage. Many of the folks here have tried 4 or 5 different meds, and are on more than one med. Because epilepsy is so individualized, one of the most frustrating unknowns is not knowing which meds or combo of meds will work in any given case, at any given time.

Definitely ask your son's doctor about any potential side effects with a new med, how the tapering on and off process can be expected to go, how long it might take to get to an effective dose, etc..

 

[jaysmom]

thank you for your input.
jasons very first "drop" was a few years ago and he did it right in front of me. He was very straight like a board when he went down. i assume that he was stiff. he was unconsious for about 20 to 60 secs.
his second "drop" was a drop for sure. he went totally limp and was out cold for about 20 to 60 sec as well. he was all curled up this time. not stiff.
his third was alone in the middle of the night when he got up for a drink. he remembers all of a sudden not feeling well then woke up some time later on the other side of the kitchen? doesnt know how long he was out for.
this last one was at school in gym. he remembers breifly feeling like he was having a hard time to breath and then woke up as well on the floor. according to the kids in the class, he was leaning against a door way and slid down limp and crashed on his head. the usuall unconsciousness for 20 to 60 sec.
he only has a pediatrician in our small town. we have to travel for 4 hours to the nearest anything. that is where we go for the eeg's. our pediatrician has an older child with severe epilepsy and takes it very seriously. i trust him a lot.
we will see what the tests say in a few weeks then adjust meds acordingly. he would like to put him on topamax he said.

 

[jaysmom]

i forgot to add that he has multiple kinds of seizures....mostly partials and complex partials.....many many different ones. the drops we take him in to the doc right away.

 

[darcness]

Firstly let me say that I understand where you are coming from being anxious about all of this. My wife has E and I struggled for a long, long time with those feelings. I'm in a much better place now, but it takes patience and a lot of time.

Try to calm yourself down and take things day by day. The "what if's" and worry will take over if you let it. I know it's not easy, but it's the best advice I can give you.

As for your son, understand that E isn't somethnig that fits into a box. Often times medication can change the type of seizures some one has. This happened with my wife. She only had T-C's before getting on medication, and since being on medication she's had partials and I think absence as well. Sometimes it can be so confusing and you don't know if something is a seizure or not.

When it comes to AED's what works for one person might not work for another. I'm sure that's why they are looking to make a change for your son. My wife just got off Depakote herself. It was controlling the seizures but the side effects were simply too much for her to tolerate. She's now on Keppra and overall it seems to be better for her. It's only been a few weeks so I suppose time will tell how it works. Unfortunately with medication it can often be a bit of trial and error until something is found that works.

If you have any other questions feel free to ask, or PM me if you'd like. I know how hard that helpless feeling can be when E hits your loved ones. It's hard, but in time things get easier.

 

[Meetz1064]

Does the

pediatrician have access to an EEG machine, and does he know how to read the EEGs or do you have to go on your 4 hour trips for those? I'm truly concerned that your son has a more complicated form of E than just the drop seizures, and the partials/complex partials.

Have you seriously considered changing his diet, and looking into neurofeedback? These two things might be something that would be truly helpful to you. If I read your location correctly, you're in the same area as Epileric, one of the supermods here. You may want to PM him....he may have some good hints as to where to find some of these things....

Take care,

Meetz
:rock:

 

[jaysmom]

yes, meetz, the ped does have access to READ the EEG but not to do it. we travel 4 hours to a main hospital for EEG and MRI and CT's... there is no neurologists for kids around. that is a 12 to 14 hour drive to the childrens hospital in Vancouver.
everything has gone digital around here so what ever the tests show in the howpital that we have to go to, my doc can see in his office. it is real cool actually.
when i asked my ped why jason loses consiousness with these seizures....his last words were that he is worried that something bigger is going on. yup, can you say nervous? he is usually very careful how he speaks as not to get a parent worried but i think that one kinda slipped out.
we have pondered about checking into dietary ideas and such but he is 13.5 and it is hard to follow him around and watch and put rules on him and such. if it boiled down to having to for sure, we would make it work though, i am sure.

thanks for your reply

 

[Rae1889]

Hi jaysmom. Is there any possibility of moving? maybe even just to be able to get him better and faster care. Maybe you can get a transfer to another place for your job, or start scouting one out on workopolis.ca They can do interviews over skype, or even just over the phone.
IF you have family in other parts of canada, maybe give them a phone call to see if you can stay with them for a while, (say 2 or 3 months) so he can have a full round of test, results and other tests once they get a hint of what is happening. If you didnt take your mat leave from your job yet, some places allow for that to be take not just for pregnancy, but to care for a sick child too. Look into that.

 

[jaysmom]

moving

there is no option for moving. if we need to travel for any reasons~we just do it. it has not been requested that we have to go to the childrens hospital yet so we will wait. these new tests coming up may reveal the same thing as the other 2 in which case we just have to start playing around with different meds or it may show something way different or horrible and then we have to take a whole new approach and hit the childrens hospital.
i work about 200 feet next door to his high school and one block from my daughters elementary school so i am right in the middle.
we dont have to wait long this time for tests and results (compared to the usual) so i will just try and not worry too much and wait......
thank you

i had no idea that you could take a medical leave???
maternity leave may not go over well, my kids are 9 and 13...hahaha
if it boils down to it,i will for sure look into the medical leave.

 

[driven]

The benefit that Rae is talking about is for caregivers and part of the (cdn.) gov't.'s efforts to recognize the sacrifice that caregivers make. However, like a lot of these policies, they sound great in theory but have very little to really offer when it comes to substance. You can read more about the caregivers' EI eligibility at the Service Canada website http://www.servicecanada.gc.ca/eng/lifeevents/caregiver.shtml

 

[Crystal11]

I could consider talking to a cardiologist to rule out syncope. This is fainting but can look just like many types of seizures. Normallly syncope causes the flow of blood to the brain and heart to slow down or stop enough to cause falling down. If he is dropping and has LOC/loss of consiousness then I would ask your family doctor about it. Some people are dx/diagnosed with Epilepsy even though its a mild heart condition. I am not sure of the treatment for Syncope but its worth a try to look into.

I've been having drop attacks myself and it started probably 10 years ago- but didn't happen but 1-2 times a year. I would forget about them and never told my neurologist. But when I stopped Tegretol XR on my own (bad idea) it only made them worse and now I have them more often. I go to the neurologist next month and will talk to him about these attacks. They are under a second, I don't have LOC but I am confused and try to get back to what I was doing very soon for some reason- it scares me bad and last time we were walking and Rachel caught me. I go down half way and one time all the way down but got up quickly. Its very startling.

Anyways- I wish you both the best of luck. Take care

Crystal