Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 Hi , Our son Finlay (9) has had an EEG 3 years ago which showed continuous epileptic activity with spikes at night. We were told to start him on Depakine, but we have not done so. Partially because we never got to speak to the neurologist direct. He had the team Paediatrician discuss this with us, and when we refused to medicate, they did not make a fuss. We thought that if they felt strongly that it was necessary to start the medication, they would not have let go so easily. Finlay has been doing well without it up to now. This summer we saw Dr Dobyns who was very surprised to hear we had not seen evidence of any seizures as yet. He said the EEG was so far off the charts, the seizures had to be around the corner. To be honest, that was the first time anyone told us how far off normal that EEG was. We have stuck to our decision. Finlay does not have seizure medication as yet. He has a very sensitive stomach and we fear that his tendency to vomit with any small ailment or stress will cause trouble when we start seizure medication. However we know that once he has had a clear seizure, we will have to review our stand on the medication. I agree with your point of wanting to discuss this with the neurologist before starting the medication, but be ready to be flexible should something more occur before your appointment. Best wishes Annelies Re: feeling horrible .. Hi Roxanne, My son also just experienced his first seizure a few weeks ago, so I can really relate. He is 8. Up until now, we felt so fortunate he had been so healthy. What lead up to your daughters seizure? Anything different? Our Dr has now prescribed anti seizure meds but we haven't started them. He had and EEG with many spikes.. I've been so sad and lost with this lately. I'm here if you ever need someone to talk to, don't hesitate! - in CA Sent from my iPad On Dec 1, 2010, at 1:06 AM, Roxanne Bartlett <roxanne_serinity@... <mailto:roxanne_serinity%40yahoo.com> > wrote: my daughter just had her first seizure in her sleep .. I also had to use her valium for the first time her seizure lasted 10 minutes gave her the valium at 5 min ...... I'm so sad ...... man it hurts so much to watch her go through that ..... can't stop tearing up : ( -Roxanne **serinity 4 yrs** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 thank you very much she is doing wonderfully now ... I am just soo nervous with her seizures being in her sleep and lasting soo long .. I am soo lucky to have soo many people caring and praying for her. -Roxanne ________________________________ To: polymicrogyria Sent: Wed, December 1, 2010 6:54:32 AM Subject: Re: feeling horrible .. May God be with your daughter, you, and your family and grant you all the peace you will need to care for one another while you seek answers as how to handle this situation. May God lead you to caring, interested, well educated professionals who are truly updated as to how to assist your daughter with this change in her condition. May God, the Creator and Great Physician over all, lead you in paths that will allow you to care for your daughter. May you have the continued ability to make the best choices for your daughter's care. May LOVE allow you the comfort to know that each and everything you do for your daughter is the best you have to offer her. And alwasy remember to take it to the Father first, as it was Jesus that said, " Let the little children come unto Him " . Amen I am soooo sorry for the sadness you are suffering today, I have been there and it is gut wrenching. May you and your daughter enjoy one another today! : ) Love through our Creator, Dakota and Madie's very BLESSED Grandma Subject: feeling horrible .. To: " polymicrogyria groups " <polymicrogyria > Date: Wednesday, December 1, 2010, 4:06 AM my daughter just had her first seizure in her sleep .. I also had to use her valium for the first time her seizure lasted 10 minutes gave her the valium at 5 min ...... I'm so sad ...... man it hurts so much to watch her go through that ..... can't stop tearing up : ( -Roxanne **serinity 4 yrs** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 , I think i worded it wrong .. It was her first seizure in her sleep she has had many seizures before . She is on medication.. I felt so horrible last night i wish i had someone to talk to.. Her seizure lasted to 5 minutes and I gave her the save med (valium) but it just did not want to quit she was having a grand mal seizure and it lasted for 10 minutes .. that is very overwhelming to me .. I was in panic mode .. ( i am normally very calm during her seizures) .. it is soo hard to deal with I feel like it is just me and her all alone .. ... her first seizure was when she was 2 years old .. she had a fever and they just thought it was a fever seizure until she had another one later that day and they said it was not normal to have 2 fever seizures in one day .. which is how we came to the diagnoses of PMG . seizures are so scary and hard to handle .. I feel soo helpless and don't know what i would do if anything ever happened to my little girl you to are welcome to contact me any time too!! -Roxanne ________________________________ To: " polymicrogyria " <polymicrogyria > Cc: polymicrogyria groups <polymicrogyria > Sent: Wed, December 1, 2010 7:21:31 PM Subject: Re: feeling horrible .. Hi Roxanne, My son also just experienced his first seizure a few weeks ago, so I can really relate. He is 8. Up until now, we felt so fortunate he had been so healthy. What lead up to your daughters seizure? Anything different? Our Dr has now prescribed anti seizure meds but we haven't started them. He had and EEG with many spikes.. I've been so sad and lost with this lately. I'm here if you ever need someone to talk to, don't hesitate! - in CA Sent from my iPad my daughter just had her first seizure in her sleep .. I also had to use her valium for the first time her seizure lasted 10 minutes gave her the valium at 5 min ...... I'm so sad ...... man it hurts so much to watch her go through that ..... can't stop tearing up : ( -Roxanne **serinity 4 yrs** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 I have a question about the seizures in there sleep .. now last night my mom was staying over and sleeping next to serinity and she happened to notice her having a seizure. Serinity sleeps in bed with me but Im wondering how do i know I will wake up if she is having one.?? Is there some kind of monitor or something I can ask for ?? or buy ?? I dont think I can handle being worried about her having one in her sleep and me not noticing -Roxanne ________________________________ To: polymicrogyria Sent: Wed, December 1, 2010 8:38:03 PM Subject: Re: feeling horrible .. Our son never had seizures until age 4 and has had them ever since. He is medicated for them..and they are controlled. It doesnt mean they are not healthy..because they can live a good life with seizure awareness and management. If you have spikes in your EEG and your doctor prescribed medication...I don't understand why you choose not to give it. But there is hope... Seizures are a part of life with many of these kids...don't be sad...try to be proactive, it is worse to see them having a complete grand mal seizure that won't stop... We've been living with this for 9 years now... is on Zonnegran....Keppra didnt work, Topomax didnt work, and other's I can't remember.. I hate to hear your saddness... because its going to be ok. Many of the families on this post can attest to that. Seizures are very serious....so make sure you take the medicine or research other options such as the Ketogenic diet. Roxanne... had his first big seizure in his sleeep too..that is when they have the highest tendency to seize. We always have to call 911 for Dan...he has respiratory problems... but he always has bounced back even from the worst seizure.. Best of luck to you... Hasselberger, The higher the hill, the harder the struggle, the greater the story of your testimony. Maybe it seems like your " climb " will never end, and the pain will never stop...but keep believing...keep trying... keep your faith focused.... Your story will be told...and your reward greater than gold. Hasselberger November 2010 ________________________________ To: " polymicrogyria " <polymicrogyria > Cc: polymicrogyria groups <polymicrogyria > Sent: Wed, December 1, 2010 8:21:31 PM Subject: Re: feeling horrible .. Hi Roxanne, My son also just experienced his first seizure a few weeks ago, so I can really relate. He is 8. Up until now, we felt so fortunate he had been so healthy. What lead up to your daughters seizure? Anything different? Our Dr has now prescribed anti seizure meds but we haven't started them. He had and EEG with many spikes.. I've been so sad and lost with this lately. I'm here if you ever need someone to talk to, don't hesitate! - in CA Sent from my iPad my daughter just had her first seizure in her sleep .. I also had to use her valium for the first time her seizure lasted 10 minutes gave her the valium at 5 min ...... I'm so sad ...... man it hurts so much to watch her go through that ..... can't stop tearing up : ( -Roxanne **serinity 4 yrs** Quote Link to comment Share on other sites More sharing options...
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