I need to find a Mom that also has a child with Epilepsy

Pat - posted on 06/14/2009 ( 12 moms have responded )

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My son is 25 and whilst in the UK last Sunday, he had a major seizure, blue in the face, BP low and rushed to hospital. Hes been weaned off medication since he was 18 and hasnt had a seizure since then..up until now. He is suffering back pain now. What could this be?

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Patricia - posted on 06/24/2009

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Most, but not all, people do not "grow out" of epilepsy. If the seizure is caused by a fever or illness, than that may be possible. If she truly has epilepsy, she probably won't grow out of it. There is no history of epilepsy in my family either...my son has had it for 27 years and always will be on medication for it. I would see if your neurologist can recommend a local support group...that was a huge help to us...especially as my son got older and realized he was "different."

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Claire - posted on 07/05/2009

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Hi Mandy, my daughter is 3 and was diagnosed with epilepsy earlier this year after having had 3 major seizures. She is now on meds 2x daily. We also had no cause or history and i agree it is very worrying but i try not to let it control us. The meds should help to control things now and talking on here has helped me a great deal. There's nothing we can do to change it only be there wen it happens. It will always be in the front of your mind as a mother but you don't need to show your worry, just enjoy day to day living with your daughter. Claire x

Mandy - posted on 07/01/2009

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my daughter is 4 and diagnosed with Epilepsy after several seizures and is now on medication 3 times daily.We had no history or cause and i worry daily about whats next xx

Jessie - posted on 06/30/2009

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Are grand mals the only type of seizure your son has experienced? Brooke (now 4) started having seizures when she was 2 1/2 and she had every seizure in the book and was having up to 100+ seizures a day for close to a year. She has been seizure free for almost 10 months but due to her recent behavioral/developmental regression the doc believes she is having absence seizures which are in the brain and cannot be physically seen...she will just have a spaced out look on her face. Maybe ask the doc about your son getting an EEG which will detect any seizures going on in his brain while he is awake/sleeping. Whenever you wean a child off medication you risk causing seizures. Maybe he needs to be put back on a low dosage of medication. And like some of the other posts stated...grand mals can cause a lot of stress/pain/exhaustion to your body...maybe even check for muscle knots or a pinched nerve in your sons back. But I would definitely recommend talking to your doctor about your son's brain activity to try to find out if these seizures are going to be a normal occurrence. Plus once they find out which quadrant(s) the seizures are firing from in his brain...they can target those areas to prevent any future seizures.

Laura - posted on 06/30/2009

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It could just be because of teh seizure, my dad had the same problem after he sufferd a seizure.

Heather - posted on 06/26/2009

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Glad to hear things are getting better. Hope he's back up and running soon!

Pat - posted on 06/26/2009

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I agree Heather, as the body muscles go into major spasms when having a fit and its now 3 weeks since he had it, and is on anti inflammatories which are helping:) Thankyou so much for your input...its so nice to hear there are so many people out there suffering this disease:) xxx

Patricia - posted on 06/24/2009

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The back pain can definitely be muscle pain from the extreme seizure. My son has gran mal seizures and, according to his doctor, a 3-minute seizure has the same effect on your body as running a 20 mile marathon. My son's muscles hurt for about 48 hours after a seizure.

Claire - posted on 06/18/2009

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My daughter is 3 and has recently been diagnosed with epilepsy. She's had 3 major fits and is now on medication for it. Is she likely to grow out of it cos it's not in my family n we don't have a cause for it??

Heather - posted on 06/15/2009

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Could be muscle pain from the seizure, it's a very violent experience for the body.

Erin - posted on 06/15/2009

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Did he have a spinal tap? My son was only 5 when he had a grand mal seizure and they had given him a spinal tap on him and he screamed and cried for 3-4 days about his head back and legs and it was from the spinal tap not healing itself fast enough.

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