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Name: jess
[ Original Post ]
hello my sons 4 since may we have been dealing with seizures sleepless nights.we have been hosp a couple times.its very scary and overwhelming
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Name: G.B | Date: Jun 28th, 2005 8:59 PM
This sounds quite upsetting. My daughter had epilepsy for a few years, before the seizures got really severe and she had surgery. All i can say is hang in there, lean on others all you can. 

Name: sylvia | Date: Jul 1st, 2005 4:45 AM
My son is 3 years old and has been sufering from seizueres since birth and i know the sleep-lees night he allso has autisim i know that right know it seems like your life will never be the same but soon the siezueres will slow down and eventually stop my son has not had a seizuer in almost a year i wish you all the luck and my prayers are with you son. 

Name: Jamie | Date: Jul 15th, 2005 2:53 PM
My daughter has a severe seizure disorder as a result of some wonder doctor taking medicine to making life-long decisions for others. She is almost 7 and was never expected to live past 10 months old. Therefore, anything is possible through prayer!!! 

Name: caroline kelbrick | Date: Oct 27th, 2005 11:21 PM
hi my son has epilepsy as a result of chickenpox as a baby,along with cp and oher disabilities,we have fast track letters for hospital,they are a godsend sometimes,the staff al know my son at our hospital.e has had loads of blue fits that result in him going on life suport ,the best thing to say is to keep calm and learn as much as you can about your child.good luck 

Name: [email protected] | Date: Jan 31st, 2006 2:36 AM
i have been haveseizures every since i was 5 year old know iam 51 year old female and also iam a pastor susie houston 

Name: pastor susie houston | Date: Feb 23rd, 2006 4:13 AM
hi iam a epilepsy and yes i have to take pills for the my life . i do hope that we all some day be heal from it praise god and we will if we fight it iam a full time pastor my name is susie houston 


Name: Tiff | Date: Feb 23rd, 2006 2:42 PM
Hi! I just wanted to say I kinda know what you are going through. I have seizures and as an epileptic myself it is very scary. I do know the worst thing for your son to see is if you get upset over him having a seizure. I know its hard for you but you have to remain strong and calm for him. I didn't start having seizures until I was almost 18 and my mom would get really upset and it made it that much worse on me. I kept having seizures until a doctor asked her if she was showing how upset she was and she said she cried everytime. When she finally understood that my seizures were every 2-3 months instead of every 2-3 days. Its the stress. As for diagnosis and meds, I have juvenile myoclonic epilepsy and I have to take meds twice a day for the rest of my life. I'm 24 now, married, and have 2 fantastic little boys, so your child can still have a very normal life as well. If you need a couple hours away don't be afraid to ask someone you know to watch him, because you need to live a normal life as well as he does. If you need someone to talk to I'll be back in here soon usually everyday. My heart and prayers go out to you and your son. GOODLUCK and remember the parents need a life to. 

Name: Tiff | Date: Feb 23rd, 2006 2:46 PM
Forgot to tell you that since they found the right meds for me I haven't had a seizure in 3yrs!!! Once they diagnose him with what type of epilepsy they can get the right and safe meds or combo meds for him 

Name: Tracy | Date: Mar 17th, 2006 5:32 AM
My daughter has had epilepsy since she was 3 months old. She is 4 now. She has been on multiple meds without any effect. She has been evaluated for surgery but has no focal lesion. The best advice: get a diagnosis of the type of seizure he has (meaning you need a 24 hour video telemetry) and a complete genetic and metabolic work up to look for the etiology (cause) of the seizures. Then try the appropriate medications for that seizure type. Make sure you are seeing an epileptologist (seizure doctor) not just a neurologist. I understasnd the sleepless nights..all the more reason to be on the appropriate anti-epileptic medications. Tracy 

Name: Carly Fulks | Date: Mar 31st, 2006 6:27 PM
Hi My name is Carly. I am an RSP teacher for an elementary school in Murrieta. I have had epilepsy since I was 3 years old. I suffer from grand mal seizures, although I never experienced the sleepless nights that you mentioned. However I have had seizures at school which caused me to be home schooled for approximately 3 months until it was brought under control. When your son enters school please be sure to notify all the people that are in contact with your son so they will be well prepared for signs of a seizure and how to handle it if one were to occur. Also it is important to know sometimes a medicine that is working for a young child may not be as appropriate as the child gets older and the body changes. It might be a good idea to set a doctor appointment and discuss the sleepless nights and ask if it is a side affect of the current medication. Please feel free to email me if you ever have any questions I have lots of personal experience and it is the reason I went into special education. [email protected] 

Name: MICHELLE | Date: Apr 5th, 2006 7:15 PM
HELLO JESS. HI MY NAME IS MICHELLE MY SON CLAYTON STARTED HAVING SEIZURES LAST MAY ALSO. HE HAS HAD 7 ALL TOGETHER AND I CAN ALSO SAY THAT THIS IS SO HARD AND HEART BREAKING TO WATCH YOUR CHILD GO THROUGH THIS. HIS FIRST ONE WAS THE SCAREST. THE SECOND WAS REAL BAD TOO IT LASTED AN HOUR I THOUGHT HE WAS GOING TO DIE ON ME. WHEN HE HAD THE FIRST ONE MY HUSBAND AND I THOUGHT HE HAD ALREADY PASTED AWAY BECAUSE HE WAS NO LONGER BREATHING AND HIS BODY WAS LIFELESS. THEY HAVE GOTTEN BETTER AND I PRAY ALL THE TIME THAT THEY WILL NEVER COME BACK AND THAT THEY FIND A CURE FOR THEM. I WILL PRAY FOR YOUR FAMILY GOD BLESS. WE SEND OUR LOVE MICHELLE AND FAMILY 

Name: ally | Date: Apr 20th, 2006 7:01 PM
i would like to here from you as i have a son with various problems including epilepsy cerabal palsy and fluid on the brain 

Name: Jude | Date: Apr 21st, 2006 5:05 AM
Hi my name is Jude I have epilepsy am well controlled on meds
I am from tassie 

Name: michelle | Date: Apr 28th, 2006 2:39 PM
I just want to say i know what your going through. My daughter is 7yrs old. Shes had seizures since she was born. She used to have over 100 seizures a day. some myclonic and some grandmal. Than they got her seizures under control with medication. She was seizure free for almost 2yrs now she started having myclonic seizures again. Where trying to get them under control but its extremly hard. theres a diet that they tryed but my daughter was to melnutrition to try. Ive heard very positive results.Its called the kedagenic diet.Just hang in there 

Name: jenalyn | Date: Jun 22nd, 2006 7:05 PM
Know what you are going through .My son also has a seizure disorder. Started when he was 10 months is now 13 months. After his last stay in the hospital he too had sleepless nights. Hang in there! This past month he's been sleeping 8 hours every night and about 6 hours of naps throughout the day. You will be in my thoughts and prayers. Is hard to see them go through everything. Kevin has never crawled or walked, but seems that otherwise his development is normal. Doctor says it's because of all the setbacks due to hospitalization and drugs. Sometimes I have this fear that he will be handicapped for life. Is encouraging to hear of other epileptics who live normal lives. 

Name: Jenalyn | Date: Jun 22nd, 2006 7:27 PM
HAs anyone ever heard of the ...first do no harm... movie? It's based on a true story about a little boy that was cured from his epilepsy by going on the ketogenic diet. Quite a heartwrenching movie to watch but has a very happy ending. I've done some research on the diet. Have read that it cures 1 out of 3 kids with epilepsy. Would love to try something different for my son - the side affects of these meds are not nice! From what I've read on the diet I don't think it would work too well for a 13-month-old. Especially for one that doesn't want to eat anything. The drugs take his appetite away. He throws up all the time when I'm trying to get him to eat. But the success of this diet has me very interested. My husband and I are Christians and are praying that something else (besides drugs) will work for our son. 

Name: kristin | Date: Jun 22nd, 2006 9:15 PM
Can someone share with me what epilepsy is? 

Name: Jenalyn | Date: Jun 23rd, 2006 7:44 PM
From my understanding, epilepsy is just chronic sezures. From what I've been told the definition of epilepsy is 2 or more seizures. A neurologist told me that seizures are caused by 'misfirings' in the brain. 

Name: Sherry | Date: Jul 11th, 2006 5:01 AM
My daughter was diagnosed with a seizure disorder about four years ago. They are now calling it intractable epilepsy. She is now eight and has been on four different anticonvulsants. Right now she is on Trileptal and Lamictal. Between the two, she is on 1380 mg a day. She was still having seizures daily and had 2 in June that were 4 and 1/2 and 5 hours long. June 21st she had surgery. They implanted a vagus nerve stimulator. It was turned up on July 5th and she had a seizure that night (which they expected) but hasn't had one since. After three months, they will start lowering her medication dosages. It is early on, but I am praying that this is the answer. 

Name: mevelt83 | Date: Jul 11th, 2006 9:02 PM
Hello, my son has LGS (lennox Gastaut) and he is hard to deal with. My son has been on the ketogenic diet since Jan 06, and it has gotten rid of 3 of his seizures. I know it is really scary. If you want to talk to me, we can talk. melissa 

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