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I feel like im living a nightmare alone!
Wed, 01/26/2005 - 02:53Topic: Family & Friends
My son austin ,3yrs,started having siezures about 2 months ago, and we have been through heck!!!! My whole family. Austin dosent see his dad anymore b/c of his drinking. austin was on topamax and ativan, both made the siezures worse, so we had to put him into childrens hospital to make dramatic med changes. He is on Depakote, knlonipin, keppra, and a dietary supplament. We are getting him off keppra b/c its making them worse. how many meds do we have to go through? Austin also had to be admitted b/c the doctor almost overdosed him on depakote. Has this happen to anyone. I feel like im the only person w/ a child who has siezures. I think i'm going crazy sometimes. plz reply. amy
Comments
RE: I feel like im living a nightmare alone!
Submitted by Morgansmommy on Thu, 2004-05-06 - 01:02
Hey Amy...1st...you are definately not alone in this. I know sometimes we feel like we have noone to turn to but you have started in the right place. There is a lot of knowledge on this forum, and also a lot of opinions. My experience with my almost 5yr old daughter is that combating seizures is really trial and error. This has been my experience and from what you said, you have been experiencing this already! In the past 2 years since Morgan started having seizures she has been on 9 different meds, the ketogenic diet and had a vagal nerve stimulator implanted. She is currently on Felbamate along with the nerve stimulator. She has been seizure free for 9 weeks and then just this past weekend developed pneumonia which completely screwed up her system and she had several different types of seizures until the infection was under control. She has been seizure free since Mon.(the day she was released)I wanted to comment on the Ativan also. They gave Morgan a very small dose of that this past weekend to try to stop the cluster of seizures. Well, it stopped the clusters and it totally knocked her out for about 13 hours. They told me that it was like diastat(valium) which we only give her in severe cases of multiple seizures or prolonged ones.I am always willing to listen and brainstorm about this topic. Sounds like you could use a helpful ear:) You can e-mail me at cherifiggins@mailexcel.com. I feel for you and look forward to talking. Cheri
RE: I feel like im living a nightmare alone!
Submitted by mariacrawley on Thu, 2004-05-06 - 15:52
I am so sorry you are having such an awful time. I pray that all will be well with your little one.
RE: RE: I feel like im living a nightmare alone!
Submitted by imatruckingal on Wed, 2005-01-26 - 02:53
Hello,
i have a 20 months old little baby boy. I see that you have a lil gal 19 months old who suffers from seizures. ( I AM SORRY) it is not easy. my little one is on keppra 2.0 ml morning and 2.0 ml at night, I also have had the same problem where no one would listen to me the pediatrician said i was probably over reacting sure i was well of course i wasnt so my son went undiagnosed until age 1 i am a first time mom and i know it is terrible to watch our little ones go through the process of these seizures my son has epilepsy and tonic clonic with secondary generalization. In june of 2005 my lil boy was put on the keppra well in october he had flu shot, after being seizure free from june to october the seizures went out of control after getting the flu shot and still to this day he is just starting to get better since the flu shot so please if your lil one has not had the flu shot think long and hard about it . I was so mad at myself for getting him this flu shot however there is nothing i can do about it now, the neuro said this can happen sometimes and i guess my son was the sometime. my son has developmental delay are you dealing with the developmental delay also? can your daughter walk? my son doesnt walk yet i am trying to see if any one out there is in the same situation please if you could help. i will say thank you in advance and if you know or have any information you would like to share i would love to hear it from anyone.
again thanks in advance
imatruckingal@aol.com
Hello,
i have a 20 months old little baby boy. I see that you have a lil gal 19 months old who suffers from seizures. ( I AM SORRY) it is not easy. my little one is on keppra 2.0 ml morning and 2.0 ml at night, I also have had the same problem where no one would listen to me the pediatrician said i was probably over reacting sure i was well of course i wasnt so my son went undiagnosed until age 1 i am a first time mom and i know it is terrible to watch our little ones go through the process of these seizures my son has epilepsy and tonic clonic with secondary generalization. In june of 2005 my lil boy was put on the keppra well in october he had flu shot, after being seizure free from june to october the seizures went out of control after getting the flu shot and still to this day he is just starting to get better since the flu shot so please if your lil one has not had the flu shot think long and hard about it . I was so mad at myself for getting him this flu shot however there is nothing i can do about it now, the neuro said this can happen sometimes and i guess my son was the sometime. my son has developmental delay are you dealing with the developmental delay also? can your daughter walk? my son doesnt walk yet i am trying to see if any one out there is in the same situation please if you could help. i will say thank you in advance and if you know or have any information you would like to share i would love to hear it from anyone.
again thanks in advance
imatruckingal@aol.com