New here have never "posted a thread" before hopefully im doing it right
 

Hello all. I found this site quite by accident but I'm hoping other people have ideas or been through what im going through with my 7 yr old. Weve been bounced back and forth between doctors saying its myoclonic jerks myoclonic seizures but to date i have no concrete answers and im getting quite frustrated, so i figured when i found this site hopefully someone would have at least seen something similar to what occurs when my son has his "bad episodes". Since this is only the newbie hello thread Ill try to find the appropriate place too post whats occuring since i fear it will more or less be a book when im done lol. If anyone can direct me to the appropriate place to post this please let me know because im clueless! Thanks !:)

Welcome to the NeuroTalk Support Groups! :Wave-Hello:

Without knowing more, I'll post a couple of links below where you could post in the hope of getting some answers.

http://neurotalk.psychcentral.com/forum11.html
Epilepsy Forum

http://neurotalk.psychcentral.com/thread1131.html
Types of Seizures - Information Thread at top of Epilepsy Forum

also

http://neurotalk.psychcentral.com/forum9.html
Children's Health

http://neurotalk.psychcentral.com/forum65.html
Movement Disorders

All the best...

Hello Pixa angel
 

Welcome to Neuro Talk, you posted just fine. I looked up what this disorder is, because my daughter had some kind of seizures the first three years of her life. In her case they never said what it was at all. She had some jerky motions, and then would just turn into a statue. What they are telling you is that your child has some form of epilepsy. I am surprised nobody has given you a direction in the medical field. My daughter went to Barns Chidlrens hospital in St. Louis and had a now professior, Dr. virginia weldon. I would recommend a childrens hosptial where your child can have a complete exam with a neruologist. My daughter was put on low dose of Phenobarbitol at the time, and she grew out of the seizures. Any time a child is hurt or sick it is very hard to cope with. I hope you have a good support team in your home and with your family. You can also find new friends right here to support you and help you find out some information. At the top of the page there is a search bar, just tap in Epilepsy, and this will bring you to the forum that has people who have this disorder, or families that do. I really wish you all the best for your child. I know how scarry it can be. Have hope that this can be resolved. I would however seek the very best in Neurology while you child is experiencing these episodes. Take care, and come back any time to talk to us. You are welcome to explore all the sites here. You will make a friend or two. ginnie

Thanks ginnie! I posted what i experience with him in the childrens health section its a more detailed account of what occurs with him. He does see a neurologist but his neurologist is honestly making me quit frustrated as well he bouncing back and forth between it is a seizure disorder it isnt a seizure disorder just mild myoclonous. However no one in the medical profession has caught the activity when its occuring. We're currently going through more tesing but I will definately be back. I love my family and for the most part they're great when it comes to support sys but I really need people who have or have gone through similar to identify and speak with. Thanks so much for responding to my post ~ pix

Thanks !
 

Thanks to both of you for a responce :) I thought i had replied but im still learning how this system works so i guess i did it wrong since nothing is showing. I have posted a more in depth account of what happens with my son in the childrens health forum (well hopefully it showed anyways lol) If you have time to look it over I would greatly appreciate any in put you have. Thanks so much! ~pix

Nice to meet you!!
 

pixa-angel,

:Wave-Hello:Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. There are great number and caring fellow members here, you will see we are supportive and relaxing place. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Hi Pixa
 

I will go to the childrens forum and read your post. I do care about you and your child. I know very well the worry that comes with a problem a child has. Please seek a childrens hospital, That is what I wound up doing, and I have to say, there care of my daughter Shannon was the very best. I had a two year old at home, and could not stay with her on several occassions where she was kept for a period of months. I just flew back and forth. I will be thinking of you. ginnie