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stressed out mommu
Tue, 07/22/2014 - 00:07Topic: Parents & Caregivers
Posted in the wrong category the first time and I don't know how to change it. . . My 3.5 year old son was just diagnosed with epilepsy.
He had his first tonic clonic seizure back in March, but at the time we thought he had fallen and hit his head. They did an eeg and he had some abnormalities while he was sleeping but that was it and none of the doctors were concerned.
Then on June 22 he had another tonic clonic seizure while he was on a trip with my parents. They rushed him to a rural hospital where they kept him for tests and to put him on oxygen (he also has asthma and his oxygen level wouldn't stabilize).
Things were going good and we were being referred to a neurologist, but before we could get an appointment he seized again on July 3. We took him to the hospital in our city and he was seen by a neurologist. They prescribed Valproic acid for him and sent us home.
The next day when I left for work at 12 he had another seizure while he was home with my husband. He fell and landed on his face. He busted his lip and bruised his chin. When I got home it had stopped and he was sleeping. ( I work 2 min from home) We took him back to the hospital and after being there for 1 hour he went status epilepticus.
I have never been so terrified in my life. His stats started dropping and they were talking about having to intubate him if the seizures didn't stop. I thought I was going to lose my baby. . . The med finally kicked in and they took him for a ct scan. It was clear. They started him on his meds and kept him for 24hr to watch him. He has generalized juvenile epilepsy.
Last night he had his first seizure since he's been on the meds and I flipped. Called 911 because I was terrified he was going to go into medical distress again. He was ok.
Aside from the seizures he now goes into these almost manic episodes. I think it's from the meds, but it could be the epilepsy too. He gets very aggressive, hitting, biting, pinching, and won't listen to anyone. He thinks it's funny. He is normally a very mellow, gentle boy.
I just wanted to post on here to get it all out. I am so tired, haven't slept well in weeks. I want to cry, and yell, and honestly I want to go back in time before this happened. I am a big control freak normally and feel at a loss right now. I have great support systems, but don't really feel there is anyone one I can really talk to about this. My husband is amazing, but I want so bad to be strong for him and both our children. (we also have a 5 year old daughter)
Comments
Cassandran I had to leave and
Submitted by just_joe on Tue, 2014-07-22 - 18:33
Cassandran I had to leave and came back to post a comment. I read your post. I also have seen that Merealoded and Amy Jo have given you answers to some of your questions. I will make a point that if you are happy with this neurologist then by all means keep a good relationship with him.The general tests the neurologists do are EEG.s and an MRI. The EEG is a brain wave test. All it does is show the electrical output from the brain and where the impulses are comming from. The MRI would be being able to look at the brain from any angle to see if there is any damage or abnormality of any kind. Could there have been a section where the brain grew different from regular brain growth. With me they found scared brain tissue in more then 1 lobe. That tissue was caused by a hemorage to the brain. A blow to the heat caused that. In other words I am one of the people that can say what caused my epilepsy. Now I would also suggest yo uget the My Epilepsy Diary. Set your mouse on the get help and look to the right it should be the second things down on the right. Click it and watch the video it tells you how to use it. There is a notpad in it so you can note anything that happens that day list his meds and his mood .In other words a lot of information can be put in. You can give his neurologist permission to bring it up and use it. By doing that he may conect thngs that many of us over look. If yo unote things you too can reread those notes and you might see conections This Thi And Thi hapened on days he had seizures. Those things could be triggers for your son. When the neurologist brings it up he can use it to help with different medications , dosages and procedures that can help control your sons seizures.
I have that and take it with
Submitted by just_joe on Wed, 2014-07-23 - 15:12
I have that and take it with me when ever I go out. At times I have a cluster of partial seizures. They can go inti status but haven't with me yet. I take mine after the second seizure because I don't know is I will have a cluster after teh first partial seizure. After the second I take it and the cluster stops. I saw that you are wanting more info on epilepsy moniters. I thionk they are still being tested. There are groups in most states that moniter drugs and things like the moniters. I will check to see the goc site on drug studies. The neurologist group Imy neurologist is associated with dose the drug studies I think the hospital is doing the monitering unit
MRIs are not often helpful
Submitted by Amy Jo on Tue, 2014-07-22 - 14:15
MRIs are not often helpful for generalized seizures so that is very in line with standard practice. Maybe DTI or other imaging will make it more useful in the not too distant future.Did you get a script for emergency meds? There is more out there than diastat.