Seizure free for 6 years now.....

[D L and K's Mom]

My DS who is now 16 has been seizure free for 6years. David had a grand mal while we were in WDW this July. It was a pretty big one and lasted 12 minutes. He has had 4 since then and they are getting longer and more severe. We have been to the ER and been to the neurologist (a new one that I really do not care for but we have only seen her once, I will give her one more try ). So far they have "up-ed" his Tegratol XR from 100mg 2times a day to 400mg 2 times a day. This was a gradual increase ( a little each time he had another seizure) We had a new MRI and EEG done last week (I insisted) We get the results back on November 30 as it is the next Neuro appt. I am being told by the neuro that Davids age is probably the reason these new seizures are happening. The hormones. I just am a little doubtful of this. As far as I can tell he went through his puberity a few years ago (i am guessing by body changes) (David is at an 18 month level, he had a stroke at 6 months of age, He cannot talk or communicate ) I spoke to his Ped and he thinks maybe a change in the meds would be a good thing to try but wants us to do this with Neuro. I am geting very frustrated with the Neuro dept at our hospital. There are only 4 peds neuros in the area. We have had one we loved and then he "moved" The lady we see now seems rushed and seems to just up the meds and I really am doubting this as a "cure" to control the seizures. We had another on Tues and it lasted 19 minutes. He had to be taken off the school bus by ambulance and rushed to ER.Anyone have any great insights? I am just getting frustrated. I was told by another parent at David's school that this is normal, that it takes quite a long time to control the seizure activity. I guess we were lucky the first time. The first med worked and worked for 6 years......now what. As I have said I will talk to this lady on NOv 30 and see if I think she is any better. She just seems to not have time to answer any questions. I am thinking that maybe we should just seek out a really good adult neuro since David is 16 but he doesnt act like a 16 year old so I am not sure if that is a good decision on my part. My Ped, said he could make some calls to see if the ones he knows will take a 16 year old but he thinks we should wait until after the next appt. Thanks for letting me vent. Anyone with some advice??? Anyone on a great med that seems to work miracles My Dr said there are some great new extended release meds for seizures out there.........anyone on any of them?

 

[ducklite]

The best advice I can offer is that if you are uncomfortable with the new nuero, listen to your gut. Good luck to you!

Anne

 

[Michigan]

I understand your frustration my daughter was seizure free for 4 years and then in april wam a grand mal out of no where.

Isn't Spencerport near Rochester? I looked at Golisano Children's Hospital and they have several pediatric neurologist.

 

[don8life]

We went 2 yrs then BOOM! Now it's been 9 months and i keep wondering when is the next one coming. UGH!

Anyway, how about seeing a nuero at a Children's hospital. Any docotr my daughter see's (specialist) is always at Children's. I don't mess around with the local yocals, they don't know as much. Also Childrens' works as a team so you have the experience of 6 doctors.

I still find even at Children's that I am not happy with the answers or suggestions. I think it is just becasue so much is not klnown about the brain and they follow procedure and procedure does not work for everyone.

Good Luck

 

[D L and K's Mom]

Yes! That is where we go to Strong (Golisano) but since David was seizure free for so long we were "placed" with a new Neuro in the dept. There are 6 in the Dept. Only 5 "see" patients. Most are not taking "new" cases I am going to go on the 30th with and open mind and here what the Dr. has to say about the MRI and the EEG and blood work . I will give her another try. Maybe with some tests in front of her she can better explain why she feels just "uping" the meds is the answer.

 

[SueM in MN]

My DD has never been seizure free and she had a very bad reaction to the first medication she was on (Depakote) and went into liver failure. So, we are kind of limited in what she can use. Some people have seizures that are more difficult to control than others and there are people who (for many reasons) had control and then lost it. Puberty/changing hormone levels is a big one and it could be that the neurologist just looked at the age and figured "ahh, a logical explanation".
I'd go to the next appointment with an open mind and, as you said, with some further tests in front of her, maybe she can give a better explanation. It's possible that for the type of seizures your DS has that the Tegratol is the best medication choice according to the literature. As don mentioned, so much about the brain is unknown. Doctors basically follow what studies say and medical/prescribing practice is based on probability - a study might say that a particular drug works in 80% of cases. That's great if you are one of the people in the 80%, but not so good, if you are in the 20%.

 

[D L and K's Mom]

You always have such great and informative things to say! Thank you. I probably sounded like a very mean mother. But this new neuro has not been very helpful. After the "Biggie" breakthrough seizure she never even came to see DS even though we called the office and ped. called the office to let her know DS was in the hospital (it is the one she works out of). The same thing happened when we were in the ER (that I can understand she may have been busy as we were only there for 6 hours). When she did meet DS she called him "He" the whole time...he has a name. She asked me stupid questions "Did he say he was tired"....ummm he does not speak. Oh Im sorry was her response. Later in the same conversation she told me I need to tell him he needs to keep track of what he is doing before the seizures....ummmm he is not doing much of anything.....he is at an 18 month level, he does not speak let alone keep track of what he is doing. I finally asked her if she had read any of DS's records. She said she had. The things that really made me mad was DS was in the room!!! He is clearly not able to do any of these things. She has "up-ed" the meds without doing more tests....so....that is why I am not crazy about her. I will go and see what she has to say but I am not thrilled with her. My Dr suggested asking about ..

Keppia
Lyrica
Dilantin XR

So I am going to ask.....

 

[lovespoohbear]

i am on dilantin. had first seizure in disney world in front of cindys castle. been seizure free 9 yrs. i am woth everyone else. if you dont like the dr. give one more try then switch.

 

[BeccaGrace]

I would definitely seek out another neuro. And at age 16 I think even a non-pediatric epileptologist working in conjunction with his pediatrician would be better than what you are dealing with now.
Both my dd-2 and dh have seizure disorders...dh has been on Tegretol for 15 years and his doseage was initially low and increased with every seizure since. He was seizure free for 5 years at a 1200mg dosage and then had a breakthrough grand mal--he was upped to 1400 mg, which is about as high as you can get on Tegretol...a year later he had a partial and Keppra was added. As the others have said--when meds stop working it can be hit or miss to find something that works and it can be a very long process. One thing that HAS to be involved though is a caring and informed physician--and it doens't seem like your son has that right now I hope you can find another neuro who treats him like a person and is aware of his abilities. Good Luck!

Oh...another board that has been SO helpful for me is the Parents Helping Parents board on the Epilepsy Foundation's website...here is a link:

http://www.epilepsyfoundation.org/efforums/forum/categories.cfm?catid=2

Hope this helps!

 

[JenJen]

I have been seizure free for almost 2 years and I take topomax. Most doctors do not RX topomax for seizures unless other things don't work. I had some vision loss in one of my eyes and they thought it was the topomax and took me off but then they found out it was not the topomax because my vision never came back. SO I am back on and no problems! I like it better then other seizure meds because it does not cause wieght gain.
((((((((((((hugs))))))))))))
Jen

 

[BeccaGrace]

I have been seizure free for almost 2 years and I take topomax. Most doctors do not RX topomax for seizures unless other things don't work. I had some vision loss in one of my eyes and they thought it was the topomax and took me off but then they found out it was not the topomax because my vision never came back. SO I am back on and no problems! I like it better then other seizure meds because it does not cause wieght gain.
((((((((((((hugs))))))))))))
Jen

My dd-2 is on Topamax...she has been seizure free since she started taking it March Another bad side effect is that it keeps your body from sweating...it is very easy to overheat and you need to stay very well hydrated. Another reason for drinking a lot is that it can cause kidney stones. The side effects have definitely been less traumatic than the seizures and I am so thankful it has worked for her so far.

 

[JenJen]

Thank you for letting me know that. I have always had heat sensitivity even BEFORE being on this medication so I am always careful but it is good to know. I only drink water and a lot of it. If I am at Disneyland I might have one soda but that is once a month or so. I am really good about not drinking anything but water.
When I worked at Disneyland I only worked inside attractions my last few years there because I passed out in the heat all the time for some reason and no one likes a passing out attractions hostess LOL. That was before I was on Topamax but I was on other medications at the time.
(((((((((hugs))))))))
Jen

 

[JohnnySharp2]

My son is 9 and is on Sodium Valporate (orlept) liquid solution, 2 5ml doses a day - we have had no problems for just over 2 years now.

 

[joanchris]

Go with your gut here, I have a seizure disorder, and went through 3 neuros before I found one I liked, who wanted to work with me and find something that worked. I went through 2 before I found a 3rd I liked for my daughter.
Her neuro wanted to keep upping the meds when her seizures got worse, and that just drugged her more, and she kept having the seizures. In the last 12 years or so there have been a TON of newer meds on the market for seizures, many without the side effects of the "old line" drugs, and, at least for me and my dauthter, much more effective. Doctors tend to start with the old line drugs, as many of the newer drugs are not technically approved for "monotherapy", or to be used alone. The old drugs are Sodium valproate or depakote, Dilantin, tegretol, phenobarbitol.
Not everyone can get full seizure control, but I managed it with my newest neuro, he made me have hope, as I started with him before any of the new drugs were approved, and when one of the first ones was FDA approved I had a script for it before the pharmacy could get it, within one month I was seizure free, and have been ever since (sept, 1993). My daughter, with her newest neuro, was switched from Depakote (a very high dose for a 3 yr old!) to Lamictal, and was seizure free for about 4 years, and now only has minor seizures occasionally. The doctors we've found take the time to talk and listen to us and are concerned about quality of life issues. I drive almost an hour to see my daughter's neuro, but he's well worth it! There are several closer by, but they were not interested in helping her, just drugging her with more depakote, when it was obvious it wasnt' working.

Sorry to ramble, I hope you find something that helps!

 

[D L and K's Mom]

You were not rambling!! Thank you for a ray of hope. I am going to see this Neuro on Nov 30...I will see if she spends time with us. DD is having seizures and he is shaking his head like he is saying "NO". This is a new thing. We are trying to see if it is a new behavior or a seizure. He also only seems to have them in the morning. Hmmmm sugar??? Problems with sleep?? I would like a sugar test and a sleep test done if possible. We had the EEG and the MRI. Thanks to everyone for all the info. I have a list of things to ask her...anyone have any questions I should ask but might not think of??

 

[D L and K's Mom]

We went for the appt. I liked the nurse/assistant that came in to take history etc. Very nice, took time, asked questions etc......HATED THE DR!!!!! ok so she comes in and she looks at chart and asks...
When last seizure activity took place....
ummm isnt it listed in the chart??!!! NOPE!
Ok it was last week when we were ambulanced into the ER because DS had a grand Mal on the school bus (19-22 minutes long)......
Which hospital??
ummmm this one...the one you are affiliated with...the one that your intern came down to see us in.
Ok, date of last blood test?
That was a month ago.
How come test was a month ago and not the date he was in the ER so we can see levels...??
Ummm becausee your intern decided against taking blood even though the wonderful nurse had numbed up DS's arm.
Ok, we are going to up the meds and you can call if there is a problem.
No, Wait... I have more questions. What about EEG??? Was it normal.
No, it showed seizure activity.
Ok what do we do about it.
We up the meds.
Should we consider a diaretic as the assistant suggested?
Nope.
What about a new med since he has been on the same one for 7 years and been seizure free and now this...lots of grand mal and small ones in between?
Nope, Tegratol XR is good. We will think about adding another when he has the next breakthrough seizure.
WHAT?? When he HAS not if he has??
He will probalbay have others.
Can't we prevent them
No unfortunatly not. (now she has started putting on her coat and picking up her bag)
I have other questions on my list.
Ok. (she sits back down)
He has started tightening up his arms and shaking his head for a minute or so....15 -20 times an hour.
That is probably a learned behavior?
His school thinks it is seizures. I also think it is as he has never done anything like this before and it is strange.
It well may be.
What can we do.
Nothing, the increase in meds may help.
He only has seizures in the a.m. could it be blood sugar or sleep problems
Could be.
Can we check?
Ask your ped to request blood work for sugar.
He only has seizures in the a.m. should we increase nighttime dose of meds?
No give it later.
We give it to him at 6am and 6pm
Give it to him at 6am and 8:30 pm.
But wont that mess up the level in his system?
No
He likes to sleep in on the weekends. Should we give him his meds anyway (wake him to give him meds)
No when he wakes up he can take them.
But that is sometime 11:30 am
Thats ok.
Do we need to make an appt to be seen in a few weeks? Months?
No call when he has another seizure.
I called the night he had the 22 minute one, after we returned home from the ER he was shaking. I got the service and was told someone would call....nope I called back again no callI called the Ped and he talked to me.
Oh, I am sorry that happened. We try to get back to everyone.
Try?
Yes sometime we are on call.
(I looked puzzled but didnt say a thing)
What about this "Wafer" I heard about to put under his tongue to shorten the siezures?
Oh yes he can have that (writes perscription).
Can we give him a small Unisom or other sleep aide as he sometime wakes up at 1:00 and won"t go back to sleep.
Melatonin will work 6 mg a night.
Could the fact that he is now waking up at night and he has started the seizures go hand in hand. Could he be having seizures at night and they wake him up but we are unaware of the,.
Yes, it is possible. Give him the med later.(Opening door)
I then said, I am alittle disappointed that you are not being pro-active about these seizures.
I ma sorry you feel that way. David is going to probably have many more seizures as the EEG showed lots of activity. We will have to figure out what to do about them as they occur.

I leave and I am so sad. I am going to change Dr's FAST. We have a freind who is a Neuro but not a Ped Neuro. He said he would be glad to see DS. He really wanted the tests to be ordered by the Peds dept for some reason maybe anestesia or time of day? I never really asked why.
Well that is it.....I am changing and hoping for a little bit more action. I know that he is prone to seizures but I think more could be tried....
Thanks for all the advice and kind words....

 

[JenJen]

I am so sorry that that doctor was so ignorant and seemed not to care. It seems that neuro's are that way though. They are kind of boring and unpersonable in my own personable experience. I have had better experience with my own family doctor. Have you thought of testing his Blood sugar levels at home?
Not having control of seizures is so scary and I can't believe they took it so lightly when you have had complete control for so long. I am so sorry you had such a bad experience and I hope that your DS gets the proper care.

 

[D L and K's Mom]

Thank you so much for the kind words. I have not done any sugar testing myself. I think the DR would do some sort of fasting test.

 

[SueM in MN]

Thanks the report. Sorry to hear it wasn't more helpful.

My experience is that many neurologists are sort of like that, sort of abrupt. My DD's neurologist actually argued with me It sounds like you have a plan though.
I wonder if there is something in the EEG that she is not explaining. The comment about the EEG:

What about EEG??? Was it normal.
No, it showed seizure activity.

David is going to probably have many more seizures as the EEG showed lots of activity.

sounds like the EEG probably showed a lot of abnormal electrical activity and some seizure activity. I don't know what you were seeing at the time. If you weren't seeing any visible evidence of seizures, it he may be having seizures you are/were not aware of.

Things to ask your new doctor might be what the EEG actually shows, what the activity means and what it means for seizure control (Basically the things it sounds like you were trying to ask her).

Another thought for the timing of the medication would be to ask your Pharmacist. People don't usually think of talking to the Pharmacist, but they have a lot of education regarding drug actions/etc. and could probably be more helpful than that doctor was.

 

[JenJen]

My experience is that many neurologists are sort of like that, sort of abrupt.
Those Neuro's and engineers LOL. I told my best friend once there are two types of people I would never Marry, a Neuro or and engineer. My son has the personality of a engineer and her cracks me up with his dry sense of humor. They are so serious!