11 month old recently diagnosed
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UPDATED: Tue, 09/02/2008 - 6:52pm
yock6548
11 month old recently diagnosed
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My son began having seizures at about 5 months old and he currenly is 11 months old. They progressively got worse and more frequent. He has had all the basic testing (EEG,VEEG, CT, MRI, blood work) and the doctors can not determine the type of seizures he is having. They were not even convinced (until two weeks ago and after a very long battle) he was having seizures because all the tests can back normal. His seizures were unique because he would only have them after a few minutes of waking up and he would gaze, smile, and even laugh while having a seizure. There have been four occassions that he stopped breathing and turned blue while have grand mal type seizures. He had had over 50 seizures in his short life. He currently is on Keppra 150 mg x2 a day and the seizures are somewhat controlled. He has had break through seizures when he has had fevers and the meds have been adjusted.
My questions are: Is there anyone else that has experienced similar seizures? Its so hard to know what my son is experiencing since he can't communicate with me. Then as for Keppra, I believe that the Keppra is causing my son to be aggressive, angry and moody. He has "red faced" tatrums you would expect from a two year old and he can cry at the drop of a dime. Its hard to tell if it is a stage or the meds. I have heard about B6. Does this really work? Any advice or suggestions are welcomed. I am new to all of this and I want the best for my son. Thanks
By yock6548 at Tue, 09/02/2008 - 6:52pm | 49 views | 9 comments
Topic: Parent Group
Recent Comments on this Discussion
Your story sounds eerily similar to what I am going through with my 14 week old daughter. She too is having what our new neurologist believes are seizures. She has been through an EEG, 2 24-hour VEEG, CT scan, spinal tap, and numerous blood tests - everything has come back normal. We were completely dismissed by neurology at the hospital when my daughter had an ALTE (acute life threatening event) when she turned blue at three weeks old. It was determined that she has severe GERD that is causing obstructive apnea and apparently it can also cause seizure like activity. However, in the two months since she was diagnosed with the GERD and been treated on acid reflux meds, the seizure like activity has gotten more pronounced, lasting longer, and incorporating more of her body. Our new neurologist called the normal EEG's misleading in her case. He feels that her seizures are happening so deep in her brain instead of on the outside lobes that it is not picking up on the EEG. He started her on 100 mg of Keppra yesterday. We're hopeful that this is the answer that we're looking for. She will suddenly go into dream-like states with here eyes fixed, rolling back and up in her head, she smiles (full or only one sided), even laughs during hers also. Her hands, feet, chin, cheek, eyebrows, have all been involved at times. Her breathing becomes very rhymic (sp?) during the seizures also. It's interesting because when I read your story I got chills they sound so similar. I hope someone here has answers for us! Even though it's a crappy road to be on, I am so glad to hear that I am not alone in this!
Caroline
Hi,
I have a son who is nine months old and newly diagnosed with comlex partial seizures (see my recent forum).. His nuerologist initially started him on 300mgs. a day and he too was very agressive. Since he had no other seizures after being on that dose for a week, his nuerolgist said we could try 200 mg's a day. He is more his old self on this...very happy and calm.. Maybe this could be a possibility for your son? I would love to talk more with you...
Laura
It sound like we may have something in common. I too would love to talk more. My son was on 100mg x 2 daily and we recently had to increase to 150 x2 daily because of a break through seizure. I would love to lower his dose but I am afraid the seizures would come back. If you want to email directly please do at destiny5dawn@yahoo.com. It would be nice to talk to someone going through something similiar.
Hi,
I'm new here. I have a 21yr old very disabled daughter, that takes Keppra along with Trileptal.
We started Keppra about 3-4yrs ago. At the time we were told that Keppra was known to cause aggressive and/or tantruming type behaviors. Her then neuro said it was because, in part, due to Keppra depleting B-6. So we started 300mg of B-6 along with Keppra. We did not see any increase of bad behavior as a result of Keppra. Perhaps you might ask your doctor about adding B-6 daily. Obviously in much lower quantity due to your child's age.
a bit of background of my daughter:
My daughter has optic atrophy, hypoplasia, nystagmus, unilateral-open lipped schizencephaly. The result of all this is autism, legally blind, hypertonic muscles, behavior problems, mentally challenged, non-verbal and intractable seizures.
Thank you. I did call the neuro and we are putting him an B6. We had a hard time finding it in liquid form so I have ordered it. Hopefully it will get here soon! I appreciate the input and God Bless you and your daughter.
I hope the B6 helps.
In my daughter's case, due to her congenital brain abnormalities, she has challenging behavior to start. I was concerned about putting her on Keppra because of its reputation. Thankfully the B-6 seemed to combat increased bad behavior
Good luck
I am new to this. You mentioned reputation. What reputation is that? My son's neuro never discussed any other medications with us. I have read on my own to get more info and it seems that what I have read there was no strong negatives about keppra. The neuro even gave us a stat that only 10% of patients on keppra have side effects (I highly doubt this though). Can you explain more? I want to know as much as I can. Thanks.
My daughter's seizures are very tough to control. She's been on many types and combos. At one point we were ready to change from one type to another. The doc told me that we could try Zonegram (I think that's it) or Keppra. She told me that Zonegram could cause weight loss and Keppra could cause behavior issues. My daughter is autistic as a result of her brain abnormalities and has a lot behavior issues. So, while my daughter is underweight, we still opted for the Zonegram. She losted several pounds fairly quickly AND it didn't help with seizures very well. So then it was on to Keppra. I was quite nervous, but the doctor said that by adding B-6 to her drug regimen, we may be able to prevent any additional behavior issues. I do know that doc tend to downplay side effects because it may scare off people's compliance. My daughter's doctor (we've since moved and have a new neuro) had her own special need's son so she was always very cognizant of parents fears etc. She always talked about some of the scary stuff with meds. Even so, unfortunately, my daughter at 21 is nonverbal. I don't know what kind of internal side effects she must be having. I can only see outward signs. So when a doc asks if she is having any side effects, I honestly have to answer--I don't know. I can tell what I see, but not what she feels. I know that since being on meds--13yrs old. She takes less interest in things around her. Ya know she doesn't really want to do much. She still likes to swing, but can't think of much else, besides eating, that she likes.
Understand that my kiddo is on a lot of meds-- seizure meds alone--trileptal 900mg 2x a day and Keppra 1500mg 2x a day. You gotta know that has to be causing some lethargy etc.
I appreciate the info. Although your daughter is much older then my son, I completely understand not knowing what's going on internally. My son is too young to express himself but I do know that he is not my sweet, mellow child he once was. Something has to be bothering him to change his personality so drastically. Ironically, the only thing that can usually settle my son down is swinging too. (We just bought a swing set last week!). I really hope that the B6 comes in soon and works. Its so hard deciding what meds to put your child on and weighing the pro and cons. Thanks again.