Is there another child out there that has what my daughter has

Victoria - posted on 01/13/2010 ( 16 moms have responded )

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my daughter has had seizures since she was 5 months old, recently she had a pet scan that shows that she has brain malformations, she has 10 to 12 seizures a day and has 3 to 4 on a good day. I have yet to meet or talk to anyone that has a child that has similar problems. She has epileptic spasms a.k.a. infantile spasms and sudden drop seizures now...if there is anyone out there that has a child or knows someone that has a child with brain malformations please I need help or just someone to talk to

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Deiliana - posted on 01/25/2010

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My daughter now 12 was diagn. at 3days old with Infantile Spasms after numerous meds nothing worked and ACTH along with 2 yrs on the Ketogenic Diet. At the 3 she started having drop attacks along with absence seizures then diagn Lennox-Gastaut Syndrome. She has ADHD,OCD and PDD developmentally delayed. Along with extreme behavior problems. Last year in Sept. she had Epilepsy surgery on her Temporal Lobe. She still continues to have seizures. We recently added Banzel along with her Topamax and Trileptal. Shes been on that since 12/28/09 and still having seizures. it definetly helps having some other moms to talk to.

Teresa - posted on 01/22/2010

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Hi i am sorry to hear about your daughter. I can't imagine a child having that many a day. My oldest daughter has seizures but it is from scar tissue from a surgery after an accident. It is very hard to deal with. I take care of her and her two children and work 40 plus hours a week. One of the hard things to deal with is doctors. They don't listen to us, when she has to be taken in. You can talk with me anytime you want. I will sincerely pray for you and ask around and see if anyone I know knows of anyone that could help you. Hang in there.

Louise - posted on 01/22/2010

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hi my son was diagnosed with Cortical Dysplasia part of the brain was not formed during pregnancy
at he's worse he was having 30-40 seizures a day the seizures varied in type and lenght he has been on numurous meds some work for a while then he has break through seizures in some cases operation and removal of that part of the brain can stop seizures but it takes an operation in which they place eletrodes direct on the brain to see if that is possible unfortunately my son went through this to find that he would lose the right hand side of he body functions if we went ahead with removal but they suggested that would be he's best bet to live a seizure free life
since then he has undergone vagul nerve similation with has improved he seizures greatly he had the op last march he is now down to about 1-5 seizures a day with some reduction in he's meds he no longer needs he's emergency med as we can wipe a special magnet over he's chest which triggers the machine to send an added pulse which stops the seizure
vns is like a little pace maker but instead of for the heart is for the brain it sits under hes armpit with a wirethat goes upto the back of he's neck where the vagul nerve is and it sends pulses each month the pulse is turned up this throws him out for a few days and brings on a few more seizures but then he seems to settle again
this has greatly improved he's life and it will still be turned up for another year and a half till at full strenght if needed there are lots of options out there but u certainly are not on your own even though it can feel it at times the internet is a blessing as thats where u will find ur support
there is also a new drug still in trials which in lab trials has proven to work on these types of seizures and havent had break through seizures with it but although it hope for the future it wont be on the market for many years yet
so dontgive up hope
i hope this has helped and opened u up to a few more options
lou

Tanya - posted on 01/22/2010

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My daughter has all type of seizures and is now 15 years old. SHe was diagnosed with Tuberous Sclorosis at the age of 3. Before then she had been having seizures that i remember from 12 months old. Her CT scan shows over 30 clusters of "tubers" which also has given her Autism, behavioual and learning problems and she has different types of rashes etc on her body and skin marks that show up white . My daughter used to have more than 300 seizures a month but at age 5 was flown to brisbane and put on some good meds and now is on 3 different types 2 times a day to control(well almost control) her seizures.

Leasa - posted on 01/20/2010

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My youngest was diagnosed with benign seizures when he was 5or 6. they would happen about an hour after i would put him to bed. My oldest would wake everyone up screaming , because his brother was shaking. I thought i was in a nightmare. About a year later my oldest started having them , but he was diagnosed with Grand Maul seizures. They were attacking a different area of the brain and alot stronger then my younger sons. Now i knew that i was in a nightmare! I couldn't help but think , what did i do wrong as a mother that my children are suffering this. My oldest never had another seizure after that, the doctors said his levels were good and he prolly just grew out of it, so a year later he was weened from meds. Has had one seizure since then and his doctor thinks it was due to lack of sleep , since it was during his summer break and i would catch him staying up all night playing video games.
Now the younger one even though his were not very strong and would only last about 5 mins or so he had about 7-8 in a few years usually after he would fall asleep. He's suffered a speech impediment ,learning disabilities and communication skills. Hes 15 and should be a freshman this year and is in the 8th grade and most of his classes have to be modified with special ed teachers in the classroom with him. But he is doing great th teachers love the kids love him everyone is so understanding and helpful. He is now also weened from his meds hes been seizure free for over four years.
At this point my story has had a happy ending, but reading yours i truly truly sympathize with you. Seeing your child go through something like this has got to be the hardest thing for a mom to do. I can not fathom what you go through everyday. I can not imagine watching my child have 10-12 seizures in a day. I hope and pray that for you , your family , and your child that she will one day be seizure free also.

Victoria - posted on 01/20/2010

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well thanks for everyone responding i am finally in a good place with my daughter i finally put my foot down and told her neurologist i wanted to see if cutting her meds again would work and what do you know i was right, so far she is having only one to four seizures a day which is better than what she was and she is doing so wonderful right now she is more alert, active, and just being a toddler for once...I just want to say to everyone when i posted this I was so discouraged and lost and my HOPE cup was bone dry I know that these seizures may come back but I tell you what I am so thankful I went with my gut and told her neuro i wanted her off the vigabatrin (it used to work) so thankfully she is fully off the vigabatrin and for the past two weeks she have more than filled my HOPE cup I never thought i could look at her and just be happy i have been grieving for so long because it was going so bad for the past year i just wish i would have told them about my concerns with her meds when i first thought about it....Goes to show it is possible for MOMS to know just a bit more than these specialists

Brenda - posted on 01/17/2010

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oh i'm so sorry too here that i know how hard it is to have a sick childbi hope and pray everything getd better or you get answers

HELEN - posted on 01/16/2010

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Hello Voctoria, we are orginally from new york and my daughter had the best nerologist she could have at the time, but still having siezures. we moved to Reading Pennslyviana in 2000 and you could imagine what i went through to get her a nerologist here. Finally they said to take her to Hershey Medical Center, where they specailize in seizures. My daughter started having siezures at the age of 12 years old, head injury. she was getting many also as far as 10 to 15 and we have tryed every med that is in the market, doctors say that can't find her cause of siezures, meaning they don't why she started getting them. all they have done is treat it with different meds that gave her many side effects. so after so many years we discovered through a Nerologist of the best i believe for my daughter right now. There this thing that has been out since 1996 i believe, it's called VAGUS NERVE STIMULATION it was uses for patient that had server depression and they discovered that it is helpful to some patients with siezures. My daughter had it done just this past October of 2009. She is 28 years old and has had a life of so many disappointments with this awful illness that at times she had to learn how to read and write again. she went to school with nurses and some of them couldn't deal with it. she is 28 with the mentally of a 12 year old. But she is a sweetheart and loves many things in life. she is life and i would try anything that will help her at least even for a while. so take every thing into consideration and discuss with everyone you can. I feel your pain, worries,cries for help, hoping and praying that this works for her. Look it up in googles or wikki. it will explain some information about this new, not so new therapy for children and adults. there is a forum (EPILEPSY.COM)

there is all kinds of informaiton on this site, so please see it. good luck. feel free to write back to me.

Krystal - posted on 01/15/2010

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My son began having Infantile Spasms a couple days before his first birthday!!! It was my own personal nightmare! He is three and a half now and we've had the seizures under control for about a year and a half. He was diagnosed with Septo-Optic Dysplasia at birth, due to the disorder he is at a higher risk of seizures because his brain didn't develop completely or correctly during pregnancy. I took several different meds, and I personally loved his Neuro! We switched a few times giving each combo a few weeks trial, started off with Keppra and another that I can't remember for some reason, dropped the unknown named one and started ACTH injections (which were HELL on him, but they did lessen the number of seizures he was having each day) for the max period you can give it to a baby, while we weaned off the ACTH we added Depakote (which was controversial because it isn't recommended for kids under two) eventually dropped the Keppra and began Vigabatrin (which wasn't approved by the FDA, so we ordered it from Canada, YAY it was approved late last year!!!) and once the two were combined and dosages tweaked we stopped seeing seizures!!!!!!! I have also spoken with another family who uses Vigabatrin and Depakote and have their child’s grand mal seizures controlled! What meds have you tried? I was super discouraged almost all of the time! His Dr. told me that each time a med didn't work the likelihood of another working dropped dramatically, and I met with a nutritionist to talk about putting him on a Ketogenic diet (while we waited to see how the Vigabatrin was going to work) she told me that I should enjoy the time where he wasn't having seizures while it lasted because more likely than not they would come back.... BITCH! I was so freaked out... We never used the Keto diet but I am still considering trying if we ever try to go off meds! && He has had major illnesses and NO breakthrough seizures! Wohoo!

What meds have you tried?

Definitely stay positive, regardless of the discouraging things Drs etc tell you (it's partly their job to give you the worse case scenario, I just use that as fuel to prove everyone wrong!!!)... You have to know there is light at the end of this tunnel!! It is incredibly hard to hold it all together and put up a solid fight, and it probably feels like you're alone with her regardless of how many people are around! I still feel alone a lot of the time because it's like no one else has a clue! If you ever need, I am happy to be a someone who understands! Either on facebook or you can email me @ kryssolovely@yahoo.com

You aren't alone! Be strong!!!!

Kristy - posted on 01/15/2010

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my 3 yr old daughter was diagnosed at 10 months with infantile spasm disorder (after having an unrelated operation on her lung). she was having colonic spasms (30-40 at a time, about 15-20 times a day). kassidy was on ACTH, Vigabatrin, Tegratol, and she is now stabilized on Keppra. When we brought her home from the hospital a week before her 1st birthday, she was like a newborn baby. we had an application to get our minivan reno'd for the wheelchair they said she was going to need. Today, at 3 yrs old, she goes to preschool, rides a trike, and is only about 6 months behind her twin olivia in her fine motor skills. it really helped having an excellent neuro team and infant development team. try to keep a positive outlook.....ANYTHING can happen! my daughter is a miracle to me. if you need to talk i will be here. take care.

Heidi - posted on 01/14/2010

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My daughter started having infantile spasms at the age of 3 1/2-4 months old. The neurons in her brain didn't go where they were suppose to when forming while I was pregnant. I have felt like I was alone too. I hope things get better if you need to talk or vent just send me a message.

Danielle - posted on 01/14/2010

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My daughter started having infantile spasms when she was about 4 months old. Her brain didn't form right when I was pregnant...I know what it's like to feel all alone and that nobody else knows how you feel! I'm sorry you have to go through this. Let me know if you need anything, sometimes it helps just to vent!

Victoria - posted on 01/14/2010

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my daughter always does really well when they change her meds around but it never lasts really long like yesterday was the only day since she started having seizures that she didn't have any visable seizures and i am very grateful for that but still i just am feeling like these docs of hers are not to optimistic and its just hard to just hold on to the little hope that i have for somewhat control over these seizures

Heather - posted on 01/13/2010

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An ER doc and I just talked about this yesterday, but we haven't started the testing. He has about twenty a day unmedicated. Yesterday he had a seizure for an hour and 15 mins. Let me know what you find out we are just starting. i'm here to talk though

Victoria - posted on 01/13/2010

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well i guess i am just lost right now...i had her neurologist cut the one medicine out so i have been weening her off of it and she is doing wonderful then again she is always wonderful she is very calm and as much as i love her like this her personality is just shining through and in the past two days its been such a wonderful break for her not having as many seizures but i know its only a matter of time before they start up...i guess i want a crystal ball to just know what exactly i should be doing for her i feel like i am one mistake away of making her worse i know that sounds well crazy. I just would like to know and find someone that has something similar to what she has her neurologist said that what happened to her (the brain didn't form properly in utero) doesn't happen that often. thank you so much for replying i hope to talk more

Heather - posted on 01/13/2010

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My son has brain malformations. He's missing tissue inside his brain, and around the outside of his brain, and has a thinning corpus callosum. He started w occasional seizures around 6 mths old, but they were so short we didn't know that's what they were. They were officially diagnosed at 17mths when he had a 3 hr seizure. Not fun. What questions do you have? Feel free to vent to me! My son is 6 now, functions at about a 10 mth level. Jacob is the happiest sweetest kid going!

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