Wondering If There's Any Parents on Here with a Child or Love Who Has Epilepsy

My son was diagnosed when he was just 4yrs old. His first was wth my parents and I will never forget that phone call. He had what they call Grand Mal Seizures (excuse me if I misspelled that) which are the most intense you can have. We learned to time them and roll him on his side, but we never stopped holding our breathe waiting for the next one. We had a wonderful doctor in Fort Worth that ran so many test but the blessing was they found nothing. I always wanted it to "just" be epilepsy ~ that meant there where no tumors/blood clots/or other major issues causing the seizures. Several medications caused flutter seizures, which was almost worse because he was more aware of what was happening. It is a matter of keeping on the doctors is the medicine is not working and finding the one that does. It is different for everyone and once you find that it is a miracle. You continue to hold your breathe and wait for the next one... but it never comes! He just turned nine last week and I never thought we would see that day come. He has some residual effect of the seizures and struggles in school but ADD medication helps him stay focused. Stay strong as a family, make sure everyone knows of the condition, and most of all stay on top of those doctors!! When we moved to Austin he was still on him medication and was seeing Dr. Snow ###-###-####)at the children's medical center. He was taken off his medicine and has been seizure free for three years now! We celebrate everyday!

My daughter (now 15) was diagnosed with epilepsy two years ago after having two seizres six weeks apart. After her second seizure, she began taking Keppra and has been seizure free since. We use the neurologists with Specially for Children. We have been lucky with her meds - no side effects.

I live in New Braunfels but I have a nephew who was diagnosed at age 10 .They live in Johnson City. He has a great dr in SA. He has been on medication since 10. He has only had 2 "episodes" and he turned 17 on tuesday. He is the star pitcher for the varsity baseball team. If you did not know him you would not know he even has it. We do watch him and monitor him constantly. Of course he is old enough and has enough experience to tell us when he feels different. There is hope with the proper meds. Hang in there. God Bless!

K., I will try to get the name of the doctor treating my granddaughter if you like. Our granddaughter was just diagnosed on the 4th of March. She is doing well. Gramma B.

My son Hunter was disgnosed with epilepsy when he was in
pre-k at the Head Start here in Taylor , Tx. It runs in the family from my mothers side ! I lost my mother at the age of 6 and she was about 28 I think from having a seizure. It hit me really hard when I found out my son has them . We see Dr. Ghodsi at the Specially For Children in Austin . My son takes two types of meds. to help with his seizures. He takes Zorontin and Topamax. He also has to wear a medical bracelet.
He has three different types of seizures. He has the petite mal(staring/dazing type) ,malaconic(sleep jerk type)and the drop attack (ones where he just falls down for no reason) . My mother had the real bad ones and the doctor says my son can lead up to them but is hoping he don't . My son also has a developmental delay and a learning disability which we found out when we found out about the epilepsy. He takes speech,occupational, and physical therepy 3 days a week for 2 hours each time to help him with his needs . He also is in occupational therepy and special education at school and has to ride a special needs bus to school due to his epilepsy . I feel sorry for him since he has to go through so much for only being 5 years old .But he is a tough kid and I am proud of him for that . I hope everything works out for your family and if you need to talk to someone or need advice on something you can e-mail me at ____@____.com if you need to .God Bless you and your family !!

Hi K.,

I am in the Pflugerville area. I have a 16 yr old daughter that has ep. for 2 1/2 years. Have you been on WebMD?? I get on there and there is a great support group and I have learned so much from them. My daughter has Juvenille Myoclonic Epilepsy, she has tonic/clonic, absence, atonic, and myoclonic seizures. She also has Simple partials and simple partials with generalized and status seizures. She is currently on Lamictal and it's not helping her much. I am getting ready to move her to an epileptologist. Oh, and she has migraines too. Near a full house, poor thing, but she doesn't let it stop her, she still is the 'normal' teen. :) I've had to pull her out of school and have her finish online thru the UT High School and she's doing a bit better with her seizures. Not as many status seizures since January, which is great cause the ER and EMS people know us by name. :)

Treat your child as normal as possible, don't treat him/her any differently than your other child. Hopefully you have first aid for seizures down pat and are being calm during one. By the way, do you have a journal started up for your child? Write down everything, especially on days of seizures. What he ate or drank, how much sleep or stress, video games, tv, computer, activities. Record what happens prior to, during, and after a seizure, and how long each phase lasts. All this can help your childs neuro possibly pinpoint a trigger for seizures, what type they are, and what AED is best. Sometimes you have to switch meds and or neuros to get the best for your child. You are your childs best advocate. What you are looking for is no seizures and little or no side effects from the meds.

If you haven't already, educate the teachers at the school. They should know seizure first aid for your child. If your child has any problems completing work or test taking, talk to the teachers and even the principal to let them know the situation.

If you want to email me for anymore info
____@____.com
Just put mamasource in the subject line so I don't delete it.

Hang in there,
T.

Hi K.,

I am a sibiling of an Epileptic sister. I was a 9th grader and she was in the 6th grade when she had her first Grand Mall Seizure. We were home alone. Very scary to say the least. I am now a 43 year old EMT, helping others.

My parents were also scared to death. Thought that things they did to have a child may have caused her to have this problem. That some fall may have called it. That there MUST be something they can do to cure it. Just has to be something. In turn, She got all the attention. I got left out.

My reason for writing to you, as you may see in the previous paragraph is 2 things.

1. There is nothing you can do but educate yourself and the child as well as those around you. Protect him when he does have a seizure. IT CERTAINLY IS NOT YOUR FAULT. It is just something that occurs in the brain with the "electrical current" so to speak.(communication)

2. Make sure you do not show favortism. It truely affected me. It took me years to get over it. And now it was not until my sister and I were adults that I could enjoy being around her. But I lost her at an early age of 23.

It also caused many problems between my parents and myself. Must resentment that could have been avoided if handled diffently.

I am not saying it will be easy. Lord knows it is not. You will want to baby him for the rest of his life. But remember, He must grow, You must grow, others must grow and trust that God will be there to help.

God Bless and my Prayers are with you!

S. R.

K.,

I do not live in the Austin area, but thought I would tell you of my own experience. I have a lesser know form of seizures called simple/partial seizures. They can occur in many diffferent ways and are difficult to diagnose. I went almost 2 years without a proper diagnosis, and when I was finally diagnosed correctly I was having 40+ seizures a day. (I am conscious during my seizures.)

My advice is 1) to always go with your gut, if you are uncomfortable with a doctor, or feel thay aren't listening to you, then get another one, 2) be patient while your child's medications are changed to best to suit him.

I give a lot of credit to my doctor for saving my life. God Definitley blessed me in finding him. It took him from November 2000 to April 2001 to get my medications where they needed to be (through that time the seizures greatly decreased) and I have been seizure free ever since. Now whenever I am asked about a good neurologist I always refer people to him. I am sure that you caould call his office to get a reccommendation for a doctor in Austin. He is Dr. Todd Swick and the number is ###-###-#### or ###-###-####.

If you have any other question don't hesitate to ask. You and your family will be in my prayers.

God Bless!
S.