Hi there. My daughter was diagnosed with a seizure disorder at 3 years old. She is now 5.5. After entering preschool we noticed an increase in behavior issues that prompted us to switch from Keppra to Lamictal in December though the switch has taken a few months. After being 2 years seizure free she's now had 4 in the last few months during the medication switch.
Today, for the second time, her teacher reported that she seemed "confused at times, forgetting to take off her shoes before her pants getting ready for swim class" and later in the afternoon "loosing her way around the classroom." I am extremely concerned but at a loss for answers. The last time I spoke with her neurologist about a similar incident he said since we weren't there to witness there's no telling exactly what's happening.
I'm worried about the increase in seizures (mostly staring spells followed by drowsiness) as well as these reports including one that she seems to have lost previously learned skills, though I'm not witnessing any regression at home.
At my wits end I called her regular pediatrician who is out of the office until Monday. I know the neuro will not have any definitive answers, so I'm left wondering if I should get another opinion?
Thank you for any help you can offer! I've never posted but have read comment regularly that have helped me along the way since she was diagnosed.
At one point we saw some similar issues - neuro thought they were complex partials - (my DD was middle school at the time) She would get lost between classes and just be out of it - then need to sleep before returning to normal - haven't seen it in an number of years.
I do wonder if it's tied to the medication. The teacher reported that today was worse, she seemed to be confused about where she put materials directly after getting them. They even pulled her from swim class because of concerns. I'm just at such a loss.
I spoke with the regular pediatrician to ask about what steps to take next. He referred me to a neuropsychcologist but warned it may be 6 months to 1 year for an appointment! He also referred us back to the psychologist who tested her for counseling and maybe family counseling. I'm up for anything that increases her chances of success, bu the bottom line is that I need to know what's happening with the loss of skills and apparent confusion in class. We've kept her behind and kindergarten starts in the fall, and I worry so much about struggles only getting worse.
My daughter Josie is 7 and was diagnosed at age 3.5 with Complex Partial Epilepsy. She will have episodes similar to what you have described and we believe that they are complex partial seizures. Most of the time we don't realize they are seizures until we see a pattern occurring over a period of time and then increase her meds. After the increase, these behaviors disappear which has lead our neuro to believe that they are seizures. It is a challenge because we do not want to label an episode as a seizure if it is not and we do not want to miss a seizure either. The best advise I can give you is to keep note of different behaviors and then present it to your neuro. I do find it more challenging because Josie is in school now so I am relying on others observations. I have the person who witnessed the episode email me the details and then I copy and paste that information into my log. Since I did not see the episode I can only go on what I receive. If you ever want you talk just let me know. It's challenging when seizures do not appear to have a specific start/stop.
I would definitely get a second opinion. My daughter is 17. We started with one neuro then decided to get two other opinions. It could be a long road ahead so you want to be able to find someone you trust. Even after 14 years with the same doctor I don't know if he is being proactive anymore. I'm considering changing again. As to keeping your daughter back, my neuro said how long are you going to keep her back for? Seizures come and go. I would contact the child study team to see what they can do for you to help. It's probably the lamictal. Not all medicines work. We are on our 6th now. We haven't found one yet that is 100% controllable.
Thanks so much for your advice. I really appreciate it!
After many years of many side effects, the first thing any of my daughter's doctors does when we see something different going on is have my daughter have her blood levels done. Just recently, after having some new issues pop up, we found my daughter's Lamictal level was at 11.2 and we know from the past that between 11 and 12 is when she has side effects. We are now backing down on the Lamictal and increasing the depakote (which caused the lamictal to spike) and already, after just a few days, my daughter no longer has a lot of the side effects. One of the side effects my daughter has had is a feeling of confusion-not necessarily acting confused but a feeling of confusion.
Is your daughter seeing an epileptologist? If not, I would highly recommend that you see one as their knowledge of epilepsy is so specialized. We just got a second opinion and swtiched epileptologists within the same practice which is awkward when we see her old doctor in the halls. But, he was not being proactive enough and now she is seeing Dr. Devinsky, one of the best in the nation. By going to a Comprenhenisve Epilepsy Center, we get regular 72 hours EEG's and sometimes video EEG's which will show if what we are seeing is a side effect or a seizure. There are times we swore she has having a new seizure and it ended up being a side effect. The only way we could tell is by having her admitted for a video EEG and checking her levels.
Recently, my daughter has lost a word and not been able to pick it back up again. The doctor feels that it is a sub clinical seizure breaking through. My daughter has a very active EEG but is not currently super active in seizures that we can see. She has absence seizures that are staring spells but never any drowsiness afterwards.
Second opinions are necessary sometimes-if you have a gut feeling that your daughter is not getting the best care then go for it. I wish I had been more proactive in changing doctors for my daughter in the 15 years she has been in treatment. Before going to the Comprehensive Epilepsy Center, she had only 2 EEG's in about 8 years. Now that we have access to more long term EEG's, we are getting all the information we need to make informed decisions on her medications and their positive or negative effects.
If I were in your place I would get a 2nd opinion and see an Epileptologist at an Epilepsy Center. I've had epilepsy for 40 yrs. and take my word only 1 neuro helped me yrs. ago and the rest of them were just pushing drugs left and right then when I saw an Epileptologist life changed for the better. I could be wrong but it sounds like your daughter may be having complex partial and absence sz. I have both of these types of sz. and I found the best thing for me was taking vitamin B12 once a day and using the ketogenic diet.
Take my word the sz. med can make your daughter confused, as well as moody. I saw a neuropsych. yrs. ago and they had to do special tests on me before hey could do brain surgery. I found out a lot from this Dr. he was able to tell what part of my brain I was using for memory, what caused my sz., as well as what area of my brain I was using for speech. He also found out that I was cell phone sensitive and photosensitive. This means when I'm around a few people using their cell phone at the same time it will trigger sz. just like certain colors would trigger sz. for me until I had my brain surgery.
Start keeping track of your daughters sz. if you haven't already. Write down what time she has any sz. and describe the sz. If you put all of this on a calendar your daughter Dr. may be able to see a pattern in her sz. I always have sz. between the 2nd and the 5th of each month and they happen in the morning or later afternoon. Also take note of what the weather is like if there's a low pressure in the weather that can sometimes trigger sz. for some people.
I'm sure stress at school and possibly to much noise could also be causing sz. for your daughter. My best advice is to make sure she gets a lot of rest, cut back on the carbs and starch foods, and start giving her vitamin B12 once a day. This will help calm her nerves and hopefully reduce the sz. I wish your daughter and you only the best of luck and May God Bless You Both!
It sounds like Lamictal isn't doing much good. I'd ask if she could try a different medication. Lamictal I think (not sure) may be one of those newer meds they like "experiment" with. It seems to make me have to take a nap daily. Not sure if it's helping me any. But I know a recently added medication that is an older medication is helping ALOT.
Also I"m not surprised of the behavior issues with Keppra. Keppra mad me furious 24/7. I'd constantly "snap" at anything my mom said. I found things to get my anger out, but it was still there. Since Keppra wasn't helping anyways my neurologist took me off of it. As some call it "Kepprage".
Please keep that log. And also if the doctor will not take the observations of the teacher's and others. Then I definately would get a second opinion. Because in my opinion. You have given good instructions, that the teacher is giving you good observations, so the doctor isn't wanting to listen to them.
I have a 21 year old now. That when I switched doctor's the first time it was just to get a VNS, but we were supposedly keeping the local doctor too. He had other ideas, and refused to see Derrick. But the new doctor refused to see the need for the VNS, two years later one of her co-workers ordered the VNS
and we switched. But even though we had some help, no seizure control. But at the age of I believe
18 we switched to another local doctor. And we were still on 3 meds, had been for years.
And this new local doctor believed in seeing his patient when seizures were out of control and checking
blood level's a lot. So we happened to get control. It was just a difference in doctors.
But the big difference was the change in one medicine.
Thanks to all of your advice we got a 2nd opinion and are not in the processing of switching doctors and moving toward an epilepsy center with more comprehensive treatment. Thank you!!