Frustrated

[sdhcbecker]

Hi there- our son (9 yrs old) was diagnosed with partial complex seizures in late July. He would have spells of staring and non responsive. He would also sometimes have rolling of his eyes, along with eye fluttering and a lot of rubbing of his eyes. Sometimes he has confused speech and just odd behavior. He was put on Keppra starting low and ending at 625 mg twice a day. He seemed to be doing well until late October when he started having episodes again. Mainly at school. He would tell his teacher he felt hazy or lost. At times they would notice, but others they wouldn't. He'd always get extremely tired after, sleeping 2-4 hours. His dr increased his meds but things just got worse. He was at 750 mg 2xday. His dr decided to to a 24 hour EEG which they said was "normal" although it did have "slow" brainwave activity (the first EEG in Aug showed the same with no actual seizure). The dr has now decided they are unsure that this is seizure and have weaned him off his meds. I know there is something wrong!!! This is not my son, and I just don't know what to do. Even his primary Dr agrees with me, however the neurologist wants to see how he does off the meds. He complains that it is too loud sometimes. He also complains his stomach doesn't feel good during or around these episodes. I've read posts from others and really see similar things in my son. I just don't know what to do.

 

[Fedup]

sdhcbecker

Just because the EEG comes back normal does not mean anything, it just means they do not know where the seizure is originating. Keep a watch of your son, write everything down and tel you neurologist if he pays not attention I would try looking for a new one. You are the one who knows your son best so push it.

 

[Cint]

:agree: with Fedup. You're the parent and you know your child better than anyone. Trust your instinct, not what the neurologist says. Half the time the neuro's wait too long before making the correct diagnosis in the first place. Search for a new pediatric neurologist. Good luck. Ask the primary care dr. for a new referral.

 

[jyearta]

Hi, I sorry you and your son are going through this.

I have partial complex seizures.

I stop talking or whatever I'm doing and stare straight head. I can head what people are saying, I know where I'm at. I will have lobster claw like movement with my hands. I will swallow hard and for several times,
I can not respond to anyone.

I am on Dilantin and Clonazepam


These do make my stomach feel sick like, my husband will get me a wet cloth and put to my head.


I too agree with FEdup, See mother Neur. if this one does not listen to you.

 

[donnajane]

Welcome. My little man turns 2 in a few days. He has had different types of events since just over 7 1/2 months old. He also has quite a few what look like absence events. It took till his last EEG. No 5 fo them to find anything. They found a slight slowing on the back right of his brain. On most of his EEG's the person running the EEG's commented on his eye's rolling up every now and then with the flashing lights but nothing showed on his EEG. Thankfully his Nureologist ordered an MRI when he was 18months old it showed he has a lesion on his Putamen which is deep in his brain which is why it did not show on his EEG's as they are unable to detect deep into the brain. So as others have said a clear EEG does not mean he isn't having seziures. My little man is on Tegretol which has helped him a lot he is now able to interact normally, most days, with others and his development has pretty much caught up with others his age. He still has issues and his Nureologist said he is not sure if the lesion is the cause of whats happening but our son is having his second MRI this Friday, 6 months after the first, to see if the lesion in his brain has altered and to see if they are able to get a better picture of what it is.
If you feel something is not right keep looking as parents know their children not Dr's. I would rather be called " one of those over reactive mums" then sitting there going "if only I had got help earlier for my son....."
Take Care.
Donna

 

[momto2]

I'm new here and just feeling my way around. Just wanted to say I'm sorry you're dealing with this and I hope you find answers and solutions for your son soon.

 

[momofthree]

Could your son be having an ill response to the Keppra, it can have some nasty side effects, including being drowsy, maybe that is why he was sleeping? Just a thought. I hope it all works out, make sure you have a good doctor, I tend to believe that the best doctors work at teaching hospitals. We are in NY so we are blessed to be able to go to NYU.

 

[sdhcbecker]

Thanks for all your great suggestions and support!! We have continued to do as suggested by the doctors and he is now 1 week with no Keppra. He has had 3-4 seizures this week but they have not had the terrible side effects he's had before. I really think you are on to something momofthree and he was not handling the Keppra very well. We are noticing changes at school as well. They feel he is more engaged and he seems to not be struggling as much. He is continuing to have seizures, in fact his teacher made the comment that since he's off the meds she can see the change in his personality, facial expressions, and behavior before, during, and after an episode. We are keeping track and having the school write down everything and ill call the doctors next week. I don't want him back on meds and I'm not sure what I want. I don't want him not on meds because I know the seizures are not good for his little body and brain, but I don't want the side effects to be worse. Also if this doctor continues to try to tell me that they may not be seizures I'm going to go crazy!!!

 

[donnajane]

We have been told the same thing re my sons event's they say they look like epileptics event's but may not be. His Nureologist said he is really not sure what is going on and has discussed my sons case with many other Paed nureologists who say the same thing. They say without being able to see it on an EEG can make it harder to diagnose yet the video's are great as it shows them an event is definetly happening.
I know for my little man I am scared of what he may be like if they take him off his meds. He is not perfect on them but compared to what he was he is amazing.
Donna

 

[Nakamova]

I don't want him not on meds because I know the seizures are not good for his little body and brain, but I don't want the side effects to be worse.

I hope you can find a better medication to help. You might want to look into neurofeedback as well, if there's a practitioner near you.

 

[sdhcbecker]

Thank you all for your support!! I can't express how much it means. I feel like I get more info and support from y'all then I do the neurologists. He has been fully off his meds for almost 2 weeks and is doing well. He's only had a couple episodes and is is such better spirits. His energy is back and he's had an easier time focusing at school. I think the meds were part of the problem, but I don't want him to use no meds and have a large episodes.