seizures

K - posted on 04/29/2009 ( 12 moms have responded )

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My daughter started having seizures 2-3 weeks ago. I'm looking for any support groups out there as we simply have to wait for EEG and the neuro consult. My paedeatritican doesn't seem to be of any help as he can't find anything physically wrong yet she has been having 'mini' seizures for 3 weeks. The emerg dep't just sends us home. Does anyone have any advice>? I'm at a loss as these little seizures or whatever they are last for about 2 seconds but come approx every 5 minutes to every hour.

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Zenaida - posted on 11/11/2013

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hello my name is zenaida i have 2yrs toddle she started having seizures when she was 1yrs and 6 months i took her to neuro consult they took her mri picture from her brain and eeg too dr said she was okay but she had one or two out the month it only for sec. never take from minute i do know what to do because dr. wants to take medication can someone help out please plus she doesnt speak she have spech ploblem....

Beth - posted on 05/01/2009

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I am so sorry to hear that, My daughter who now is 27 had a seizure when she was 2, so I know how hard it is. The test that was done on my daughter at first diagnosed her as being an epileptic, However, she is not. It was an inaccurate reading. Good luck with your child and my prayers will be with you.

Jade - posted on 04/30/2009

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I'm not aware of any support groups but my cousin started having seizures when he was a baby. The Doctors still have no idea what caused them but my Uncle and Aunt are almost certain it was a reaction to one of the shots he recieved as an infant.

Jaime - posted on 04/30/2009

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My oldest daughter had "febrail seziures" as well. They started when she was 3 months old. I have to constantly watch her for overheating. It can be something so simple as a hot day. Her body does not regulate the tempurature internal and externally.

She sleeps with her window open, a fan going and very light pj's. It cold be -30 degree's outside and she is pipping hot. Seziures are far and few, but it is always in the back of my mind. We had a EEG, EKG and everything turned out fine, other than having a higher pulse but that goes with her hypothyrodism. Good luck with your testing.

SueEllen - posted on 04/30/2009

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Hello. Not sure what type of seizures she is having, however my daughter suffered from "febrial" seizures till she was 6!! After the 1st one they said it would probably never happen again, she had the till she was 6!! I went through the EEG thing as well. They found nothing wrong with her otherwise. Said she would grow out of them and she did. It is a very scarry thing, but after awhile I stoped going to the ER, they would give her Motrin and send us home. After awhile I just called 911 to have EMS look at her and give her oxygen, and I would give her Motrin myslef, it became 2nd nature to us saddly. Hope all is well with your daughter, let me know if you have any questions, :)

Dana - posted on 04/30/2009

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I found a great support group through www.epilepsyfoundation.org . I am a member of the ecommunity there (online webboard/support group). I really recommend joining there for the information they are able to provide. Also there is a board called Coping with Epilepsy (http://www.coping-with-epilepsy.com) that is really a great support board. They have a forum with lots of friendly people there to talk to. I wish you luck in finding your daughter help and the correct treatment. My daughters' eeg's never show anything for a cause so I completely understand how you are feeling. Somethings are just undetectable but hopefully with meds it will all be easier for her and you soon! ((HUGS))

User - posted on 04/29/2009

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My boyfriend had what Jill was explaining when he was younger as well. They said it was due to the PPT shot that baby's get. His mom said that he stopped getting them as well, but when he was in his teens and under lots of stress they came back. He continued to have them through stress, and has tried to live as stress free as possible. He has been in and out of the Specialists office over and over and they still have no answer for why he gets them. Currently he hasn't had one in 3 years, but the less stress the better. Good luck.

Jill - posted on 04/29/2009

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WOW!! I can certainly relate to you story! My son started having seizures when he was about 6 months old. The first time it happened I didn't know what to do. I had taken all of the first aide classes but froze when it came to helping my own son! I just didn't know what to do. He face and neck tightened up, jaw clenched, and just stared at me with his big blue eyes. We rushed him into the hospital but they found nothing wrong, took him to his dr, again, nothing wrong. I finally insisted that he see a specialist and that's when he sent us to one. Then after a battery of tests they still could not find any thing wrong!!! I was seeing a change in his behavior, activites, moods but yet nothing was wrong?? I took hours of vids hoping that a dr would take the time to see what I saw!! I was so frustrated. Finally our dr sent us to U of M and it was only then when I found out that it was due to his baby shots! He had been getting his baby shots right on schedual but he was having an adverse and delayed reaction to them. It was the dtap shot that would send him into a tail spin! Then when his temp would go up it compounded and he would sieze. They were called Fiburial Seizures. We had to do one shot at a time for 2 1/2 years until he was finally caught up. Now my son is almost 4 and even though I still worry when he gets sick w/a temp, he has not had a seizure in almost 2 1/2 years. I certainly do wish you and your family the best of luck. PLease keep us posted!

Holly - posted on 04/29/2009

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im so sorry to hear that !my son is 19 1/2 months now and he started to cry and thean hold his breath and thean turn blue and pass out up to a min and start a sizure well come to find out what he has is called baby blue spell temper tantrum ,we see a nurolgest as well and there going to do and ekg and also a eeg ,they have donr a ton of blood work ...iwas so scard and im still to this day ..i was reading the papper at my moms the other day and it said that doctors warn about poisoning in childern given imported camphor products .well what that is if you dont know i emedilty called my doc and he said every thing will be ok ,but its camphor is in vicks rub on them a cold remedy pesticides and air fresheners.there products are made from wood of ever green camphor trees that are native to japan and china ,or from cynthetics .camphor has a strong order and is in moth balls .and camphor is also known as alcanfor in spanish poising symptoms can include stomach ach nausea ,vomiting and irritabilly ..well hope that i have helped some kep me in touch please !

Marti - posted on 04/29/2009

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Also, look on face book for Tammy Dickson, from Texas she knows more support groups.

Marti - posted on 04/29/2009

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the caring bridge group is awesome. I have a friend that is giong thru this.

Brandi - posted on 04/29/2009

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Don't know of any support groups, but my daughter is 11 and has been having seizures for about 4 or 5 years. Hers are Rolandic seizures. She is still aware of what's going on around her during the seizures. A couple of things that have been helpful to us is putting a baby monitor in her room so we can hear her when she has a seizure at night. She is also able to walk because it mainly affects her face & sometimes her arms so we put a bicycle horn on her floor and she steps on it to alert us of a seizure. Don't know who you saw for an EEG, but I would strongly recommend seeing a pediatric neurologist. I'm by no means a medical professional, just a mom of a little girl with seizures. Hope some of this is helpful to you. P.S. There is a lot of info on the web to help determine which type of seizures she's having

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