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cummings
@cummings

Posts: 2
Joined: Nov 01, 2017

My son was just diagnosed

Posted by @cummings, Nov 8, 2017

My 11yr old son was just diagnosed with primary generalized epilepsy. He has been having episodes of falling into like a deep sleep at school for the past year. When he has these episodes he is very hard to wake up and sometimes he drools. It can take several minutes to get him up. We were sent to a neurologist last year and had a sleep deprived EEG which came back normal and then we were sent to a sleep specialist and had two sleep studies done. The first one came back abnormal and the second one normal. The sleep specialist put him on concerta to keep him awake in school. This made things worse, because he started having these episodes while walking. They decided to admit him to the hospital and they had a team of specialists working with him. They did another sleep deprived EEG and it came back abnormal and so they diagnosed him with primary generalized epilepsy. I guess he doesn’t have the normal symptoms of a seizure and they think it is brought on by him not getting quality sleep at night even though he sleeps through the night. They are not doing anything for the sleep and they put him on seizure medication. He has been home from the hospital and is still having these episodes during the day at school. I am confused and concerned if he is being treated correctly. I feel like we are so alone, because he doesn’t present normal symptoms. I am looking for help and a better understanding of all of this. Since this has all started he is not the same happy little boy he use to be. I want a better understanding of all of this, so I can help him.

REPLY

Hi @cummings I’m so glad you found Connect. How concerning this must be for you and to not know if your son’s diagnosis is the right one.

I’d like to introduce you to other parents who have children living with seizures. Please meet @clairesmom, @mmas, @ketomom, @hermsenk, @inkdfrog, @patrassi, @ndapanda @krd94 and @blath2000. You may also be interested in reading more about them in these discussions in the Epilepsy group.

– #AsktheMayoMom about Pediatric Epilepsy http://mayocl.in/2mzpuVY
– Ketogenic diet for children http://mayocl.in/2j4h7zQ

Cummings, You mention that he is still having the episodes at school. Does your son have a follow-up with the neurologist?

@colleenyoung

Hi @cummings I’m so glad you found Connect. How concerning this must be for you and to not know if your son’s diagnosis is the right one.

I’d like to introduce you to other parents who have children living with seizures. Please meet @clairesmom, @mmas, @ketomom, @hermsenk, @inkdfrog, @patrassi, @ndapanda @krd94 and @blath2000. You may also be interested in reading more about them in these discussions in the Epilepsy group.

– #AsktheMayoMom about Pediatric Epilepsy http://mayocl.in/2mzpuVY
– Ketogenic diet for children http://mayocl.in/2j4h7zQ

Cummings, You mention that he is still having the episodes at school. Does your son have a follow-up with the neurologist?

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Yes, he has an appointment with the neurologist on January 16th. They put him on topamax and he is up 100mgs a day. I got a call from the school today and they told me he had one episode, but the nurse had a difficult time waking him. She had to do a sternum rub a couple of times and he finally came out of it.

@colleenyoung

Hi @cummings I’m so glad you found Connect. How concerning this must be for you and to not know if your son’s diagnosis is the right one.

I’d like to introduce you to other parents who have children living with seizures. Please meet @clairesmom, @mmas, @ketomom, @hermsenk, @inkdfrog, @patrassi, @ndapanda @krd94 and @blath2000. You may also be interested in reading more about them in these discussions in the Epilepsy group.

– #AsktheMayoMom about Pediatric Epilepsy http://mayocl.in/2mzpuVY
– Ketogenic diet for children http://mayocl.in/2j4h7zQ

Cummings, You mention that he is still having the episodes at school. Does your son have a follow-up with the neurologist?

Jump to this post

Oh, Jan 16 must seem like light years away. Do you have any strategies to help you until you get to see the neurologist?
@patrassi do you have any ideas?

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