Hello all, I am hoping you wonderful ladies can read my story and maybe give me some advice. I dont agree with the Neurologist on what type of seizures my 4 year old is having, does it even matter though? is it worth persuing and arguing with them?
I also dont agree with the DX, I think it is a scape goat kind of dx so that they dont have to look anymore.
I will give you a little bit of back story to start with, sorry if this get long.
My youngest son was born at 30 weeks via C-section due to transverse presentation and fetal distress. Apgars were 4 and 7. NICU stay was farly short, 7 weeks, slow feeder lots of set backs, and tons of apnea and bradacardia. that was the biggest hold up in comming home was the bradacardia issues. He went home on an apnea monitor and used that for almost 6 months, but could have stopped after about 2.
Over the next 2 year he was behind for almost every developmental milestone even given the corrected age. He was 3 before he would talk at all. He has always been very small also, he has just in the last few month even made in onto the growth chart. He is 4 now, 30 lbs.
On April 25 he had been sleeping for about 20 minutes and I walked through my room (he sleeps with me becasue he likes to get up first and get into things) and notices both of his arms were shaking. I got closer and pulled his blanket off and realized his legs were stiff. His eyelids were fluttering. His arm went from shaking while held close to his body and pulled in, to clenched in tight fist.
I had a brother with CP and he had seizures quite frequently, so I recognized it as a seizure immediatly.
After a few minutes without it stopping I decided we needed to go to the ER, convinced of coarse that he had suffered some severe head injury or menengitis or something of the like.
It last a little over 25 minutes stopping right as we pulled into the ER parking lot. As it came to an end he vomiited.
For about the next hour he had no use of his left arm, and his left leg was tight still so he couldnt stand. The left side of his face was drawn so he couldnt talk. I thought it was a stroke honestly, I was terrified.
The ER did blood work and a CAT scan. All was normal. HE was refered to a Ped Neurologist for a sleep deprived EEG.
Over the next few weeks I did tons of research on seizures. I discovered something called absence seizures that I had never heard of before, but was sure he had been having since he was about 6 month old. I remembered watching him stare wide eyed at the wall, no blinking no responding to his name. My little brother who was 10 at the time would see him doing it and joke that he wanted to have a staring contest, and would stand in front of him doing the same. It would usually last 20-30 seconds. I ask his Ped about it as I thought it was maybe a vision problem. They checked his eyes and said he was fine.
So finally the time came for his neuro visit and we made the 300 mile trip to the Neurologist.
His EEG was abnormal and the Dr agreed that the starting spells were most likely seizures. So he was put on Trileptal. The paperwork I got from the Dr called the seizure a complex partial seizure evolving into general seizure. I didnt really understand how she could know that since I didnt watch the seizure start, so how do we know it wasnt a general onset?
Yesterday afternoon I just got the results from the Neuro on an MRI, they say he had periventricular Luekomelatia. I got a copy of the report from the redialogist, it says multiple dilated pervascular spaces is the perventriclar white matter.
I ask what the dx was going to be, if they were going to call it epilepcy, and she said that the dx was inconclusive, and that I could call it epilepcy if I liked, but that it didnt really matter, that they dont dx like that.
Non of my reading suggest PLM having any correllation with VRS.
After I talked to the Neurologist yesterday I walked into the bedroom to find him having a seizure. It looked just like the last one, exept to begin with I thought he might still be contious because he was laying on his side, and looked like he was looking at me, he had what at the time looked like a scared expression on his face. It took me a few seconds to realize his eyes were just pointed that he wasnt actually looking, and the expression was just the muscules in his face.
I didnt see this one start either, his left hand was shaking when I found him, but the other was drawn in and fist clenched, legs stiff, so his whole body was involved not just left side.
My question I guess is what is making the Dr think it is Complex partial and not General, is that likely because the left side seems to be more involved? and Does it make a difference in the treatment to know how it starts?
His left side was limp again for a long time, he couldnt pick up his head and couldnt look to the right it seemed, like not only could he not turn his head, but his eyes wouldnt seem move either. His left leg was stiff again. He was vey upset that he couldnt make his arm move. He kept asking me to grab it and pick it up. After about 15 min he went to sleep. When he woke up 3 hours later he was fine.
Thanks for reading, sorry it was soo long. Any insight would be appreciated.
I am so sorry your ds is having such a difficult time with seizures. To answer your question about complex partial seizures, if the eeg was abnormal in the showing a particular pattern in the same area as the MRI, then it is a focal point in which the seizure likely originates. Absence seizures are generalized seizures, which effect the whole brain just like the tonic clonic that you saw. It would show on the eeg with a different pattern. A complex partial can look just like an absence seizure- my ds has them, too. They do not always progress to a generalized seizure- to my knowledge my ds has only had 2 generalized seizures, but countless partial complex.
Is he taking therapeutic levels of trileptal? Did you make sure he had all his doses or did you miss a pill? Make sure the neuro knows he had another seizure because medication should be controlling the seizures. If not you may need to switch to a more effective med.
I also meant to mention that the paralysis is called Todd's Paralysis (paresis).
The MRI showed the majority of the VRS in the Right side, and she said the EEG showed something in the Left, she said that the two didnt match, but wouldnt elaborate. They dont ever seem to want to give me much info, like they are afraid of scaring me or something.
He has only been on Trileptal a month now, it is 300mg per 5ml. He takes 2ml 2x per day. He has not missed any doses.
I have noticed alot of twitching while he sleeps since he started the meds. It doesnt last long maybe 10-30 sec, but seems very rythmantic, like a movement in left foot, then the same in right foot, then bigger movement in left foot, same in right, then whole left left jerks, then right. I dont really know what to make of it. Maybe I just never noticed it before? He has 3 siblings though, 2 older and 1 younger, and they dont do what he does while sleeping.
I have looked into Todds paralasis, so I know it happens but it is still scary. After the first seizure and being told by the neurologist that it will most likely keep happening, I thought I would be ok with it happening again and not be scared, I was wrong though. It still scared me. Not to the extend the first did, but I made him wear his heart rate monitor while he slept afterwards. I know I will eventually get used to it, but he's my baby :(
It is hard, but document every time you think there is an event or seizure- including odd twitching in sleep. Some medications take weeks to be fully therapeutic. Make a list of questions and comments that you want to share with the neuro, and ask them to go through it with you.
I agree that it is scary, and hate the hopeless feeling of not being able to do anything. I also hate having anxiety because my I am trying to anticipate when the next one might happen (usually related to going to bed or waking up in the morning). Look for a support group or other family to talk with in person because they can often relate better than the doctors to what you are going through.
Take Care, Melissa
I agree with documenting everything - including behaviors exhibited, length of time, etc. If you don't agree with the diagnosis, your instincts are telling you there is something else going on, please get another opinion.
Thank you all for the great advice. I talked to the Neurologist today after more seizures over the weekend and they clarified why they are calling them partial onset seizures. It has to do apparently with what they saw on the EEG. The lady I talked to today was very helpful and didnt give me the feeling that she thought I was wasting her time by calling.
We are in the same boat with the seizures. My DD had an anoxic brain injury at 4 months of age, with resulted in seizures. A lot of how seizures are diagnosed depends on the EEG looks, and the type of seizures a child has can change as they get older. We are currently in the stage of drug tweeking again. We went from no seizures, to occassional seizures, to daily seizures very quickly, we upped DD's meds, and got a trough level, but we are still having seizures. We just went up again, and have a 72 hour video EEG scheduled. We have been through this route before, we just keep a log off all her symptoms ad seizures and call the neuro with changes. We know we will eventually get them back under control.
On the topic of meds, do you have Diastat in your house? It is a rectal gel that is used to stop seizures that go on for too long. If you do not have it, you should ask for a prescription. If your DC seizes too long, it can affect their ability to breathe. The diastat will stop the seizing, so you can get to the hospital.