Seizure Medicine

Christina - posted on 07/14/2009 ( 14 moms have responded )

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My baby is 2 1/2 years old. He is severly developmentally delayed and has really no diagnoses yet. He has now had 5 seizures in 7 months. Doctor wants to put him on Klonopin. I am worried about the side effects. My son's seizures are different than any I've read about. He just does not respond, NO hypertension, just limp, dazed. But won't come out of it by himself. Have to go to the Emergency room, give him 2 ml of Valium and he comes out of it. Or if they wait too long, he starts twitching on one side. After everything is over, he is back to his normal self. Do I need to do seizure meds? Is there anyone who is experiencing anything like me?

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Rhoda - posted on 07/16/2009

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Hi Christina,
I have a daughter that started having seizures at 3 months of age after her 2nd MMR vaccine. The doctors diagnosed her with hypsarhythmia. She was having a seizure called infantile spasms. She was put on Depakene syrup first with no luck and then Klonopin was added to which she was a zombie. She was developmentally delayed severely as well. The med that finally worked was acorticotropin shots in her thigh every other day. Her seizures finally stopped after 9 months. At her worst she was having 60 seizures a day. She is now 22, seizure free since Feb 2nd 1988 and works part time independently. Been there, done that. Please let me know what more I can do to help. Rhoda

Christy - posted on 07/16/2009

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I am a 35 year old. I had my first seizure at the age of 16. I just collapsed. I was rushed to the hospital and had all kinds of tests done. I am 35 now and still have these seizures to this day. I have had test after test after test done and have tried so many medications and nothing has helped my seizures. I always feel my seizures coming on. I start feeling real cold and my head starts spinning. From what I have been told, mine vary. Sometimes, I just lay there limp, unresponsive. Sometimes I jerk real bad and sometimes my hands and feet lock up. I have been told that my seizures usually last about 1 minutes - 5 minutes, sometimes less. My husband is a great partner in this area. I read in another post about different things triggering seizures. This is true, I must say. If I get too hot outside working in my yard, if I get too much sun, if I just overwork myself period, I know within a days time I am going to have a seizure. I use to get them real bad around time for my menstral cycle. I was a heavy bleeder and would be very weak. I no longer have a menstral cycle, so I can't blame it on that. We have never found what causes my seizures. One can only fork out so much money on dr.'s. I have just learned to live with it. I hope maybe one day that it will be found. I hope you are able to find what is wrong with your little one. I know it is frustrating. Good luck to you and your little one.

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User - posted on 11/14/2011

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My grand-daughter is 6 months old,. She is quote "prefectly normal", however she noticed her having what we thought was a seizure?! She went limb and stared off into space for about 30 second..My daughter and i started talking about this and my daughter said this is the 5 time she has done this. We took her to Childrens Medical Center and they found an abnormality in her brain on the MRI.. they started her on Trileptal... My daughter and I are so concerned that is medication is going to effect her brain devleopment?! Have anyone had they baby on this medication at such a young man .. Should be try and hold off on the medication until she is older?! We are so afraid of all the what ifs??

Amy - posted on 07/17/2009

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When in doubt go for that 2nd opinion. Make sure you are seeing a specialist and not just someone in general medicine. My prayers are with you

Nicola - posted on 07/17/2009

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Hi Christina I think the best thing that you can do is to get your baby to see a pediatric neurologist. Try to get a recommendation from someone who is already going through this

Karen - posted on 07/16/2009

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My best advice is go see a good pediatric neurologist and get your baby diagnosed with the correct type of seizure.There are many different types of seizures and knowing what kind of seizure your baby has you can get the right medication. Klonopin is the lowest grade of Seizure medication.My son is 2 1/2 years old and was diagnosed with Atonic Seizures and Autism(he was and still is developmentally delayed) when he was 18months old..His body would lose muscle tone so when he was walking his body would go limp and he would just fall.We received a referral to our neurologist from our pediatrician.Our neurologist ordered an all day EEG.It is the only way to diagnose the right type of seizure.My son started on Klonopin but it did not work.He was on three different seizure medications before we found the right one and it works great.We weaned him off the other two (with approval from our doctor)because were concerned about our son being on so many seizure medications.Be your child's advocate and if you don't like the side effects of the drugs then talk to your doctor and take your child off the drug.Research what other methods can help with eliminating seizures(such as diet, supplements etc.)Hope this helps. I know this can be hard.My thoughts and prayers our with you.

Rachael - posted on 07/16/2009

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i have been having seizures since age 13. am now 45. from your description it sound as tho your son has complex partial seizures. the mildest of these are known as absences. I have both and as far as i know medication is the only solution. however i am not a doctor and u should get advice. i am sorry as i know u didnt want to hear this. as far as side effects go i am afraid that there are no medications free from these. side efect from anti convulsants worsen with time. u may find your son grows out of the before any side efects are apparant. please talk to your doctor

Gail - posted on 07/16/2009

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My son started having seizures when he was 3 months old. At first they put him on a medicine that was called ACTH which was given by needle every day. That didn't seem to help, so they took him off of the needle and put him on an oral medicine called Valporic Acid (I think) and after he was on that for a little while the seizures stopped and he started doing so much better. My son has CP and he's Autistic. He will be 26 years old in September and he has not had a seizure since he was a baby thank GOD! I'm not sure if they still have this medicine around. I hope everything works out for you and your family!

Marguerite - posted on 07/15/2009

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My son has a seizure disorder and experiences a variety of seizures. There have been seizures that are similar to what you've described. On occasion he is limp, unresponsive, drooling excessively ,eyes staring off to the side and sometimes twitching on one side of his body. He is on medication , which works well to control them.I suggest requesting an EEG which determines if seizure activity is present. My son is Autistic and although it was difficult, we were able to conduct the exam. I hope you find some answers.

[deleted account]

My sister first started her siezures at about age one. She had a mix of them ranging from what your son has to severe ones with fits and she had been on many different Medications. She was not diagnosed until later with Cerebral Palsy. Back then it was really hard to tell. She is now 28 years old and has been seizure free for over 16 years. Yes she had been on different medications but they did reduce the amount of seziures she would have. I know that Klonopin is used in the mental health field. Sometimes with the siezure medications it is a trial and error because everyone reacts to things differently. I would turn to a neurologist that is specialized in pediatrics.



As a mother now I have been blessed to have found doctors that trust and value how I feel and let me make the decisions as I know my children the best. Sometimes trying it for a period of time works. I think that if it helps your son then you should give it a shot but if he doesn't respond then maybe you should try something else. The unknown is the hardest thing to face. I know you will make the right decsion.

User - posted on 07/15/2009

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my daughte is 10 and is severely developmentally delayed, she has a diagnosis. She started with seizures at around the same age as your son, although she was having a lot more (up to 100 in a day at times). Your son's seizures sound like absence seizures, where they just drift off for a short period - my daughter has had those. She has been on Epilim fo 8 years now, and has been fine (no fits now for 2 years!!). I would say yes to the medication, as he isn't coming out of them on his own. Trust the doctors, they do blood tests to make sure that he is having no ill effects. His quality of life will be better in the long term

Maria - posted on 07/15/2009

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If you live in Orlando and any where close to Lake Nona you must go see Dr. Frank Berzanskis. He is a chiropractor and is doing wonderful things for so many people. He aligns the spine to allow free flow of the nerves to all parts of the body. I could never write enough to do him justice. You just have to try for yourself. What will it hurt??

Dana - posted on 07/15/2009

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My daughter had seizures (albeit from a brain tumor so a totally different circumstance, but seizures nontheless). Her doctors kept putting her on anti-seizure meds, but they never worked. Kids metabolize things differently on a daily basis. She was always either too low on her level or too high and both would cause seizures. I finally took her off seizure medicine completely and she quit having them. I have not heard of Klonopin, Megan was on Dilatin, Depakote, and others. Valium seemed to work best as well. However, I just got the doctor to give me a prescription for valium. I never really had to use it, but it was nice to know I had it, plus she didn't have to be on those other medicines that required a daily dose and weekly level checks. I would ask your doctor if having valium on hand could be an option. 5 seizures in 7 months is not that frequent although I know it can seem that way. Once you've had a seizure, anything can trigger one. Low electrolites, too much excitement, too little sleep, lights that flash, any number of things. I just don't think an every day drug is the answer.

[deleted account]

I have been working with both adults and children with physical, mental, and emotional disabilities for 30 years.

With that being said, I have found that the general consencious among parents of disabled children is this: Find a doctor that you TRUST; totally trust..It is difficult when you have a baby who is disabled because you have to depend on so many and learn so much above typical parenting skills..My advice to parents has always been to learn everything that you can learn and do everything that you can do. If you truely trust your doctor, then you should follow his treatment reccomendations. Ask him the questions regarding side effects, and if you need more info, ask your pharmacist.

I think that if the Klonopin will reduce his seizures, it will improve his quality of life.

But, if the potential side effects out weigh the potential benefits.......



I wish you the best.

Lynne

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