10 Year Old Daughter Diagnosed with Epilepsy (Absence Seizures)

Updated on January 21, 2011
M.H. asks from Glendora, CA
9 answers

Hi there - does anyone have a child or knows someone who has a child with absence seizures? We have Kaiser and they were very helpful and got us in for an EEG immediatly and the neurologist the next day! that ease the torture of waiting for results.

She started treatment last week. Its been h*** o* all of us. She is a trooper though and is actually doing better than her dad and I.

I have tons of questions and would like to hear others experiences and such.

Is it hereditary? Or is it a coincedance that her paternal aunt is epileptic? Hers stems from a head injury she sustained as a child. My daughter however has no known head injuries. We have an MRI scheduled for next week...which is scary to think about that too!

Please share your thoughts.

Thank you!

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J.D.

answers from Los Angeles on

Mz Pat,

Has your daugther had any shots recently, especially the Gardasil series. The vaccines have aluminum and a series of other ingredients that have caused hundreds of thousands of reactions, some of them being seizure. Other vaccines have aluminum as well and if you did any flu shots then you probably got a double dose of aluminum and mercury.

Please let me know if this was the case and then I can make some recommendations. I am so sorry that your daughter, and you, are going through this.

btw - the Menactra for meningococcal virus being advertised on this page is extremely dangerous to be given with the Gardasil at the same time even though it says in the package insert NOT to do it. The doctors are doing it around the country. Know your rights and that you can say no to vaccines until you do the research and understand what is in them, and if they are right for your child at that time. I am not saying no to all vaccines, just do the research.

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C.C.

answers from Los Angeles on

HI Mz Pat,
I had epilepsy as a child and was on some pretty strong meds. I had frequent petit mals, which are basically small seizures (I believe it is a form of an absence seizure) and had 3 grand mals, which are the big seizures. My seizures were a result of flashing lights (strobes, flickering lights in the trees, etc). The medication did control the seizures, and I had no more after being on the meds. However, I will tell you that all of the medications that I was on made me a bit of a depressed child. Different meds made the depression worse or more manageable. Typically with these types of meds the doctors will start at the lowest dose until they see that the seizures are gone.
Your daughter will have appointments with her neurologist approximately every 3-6 months to check to see if the meds are still working, as well as to have liver panels to see if the meds are negatively effecting her liver functioning.
The only limitations I had was that I was not allowed to swim, take a bath alone, or ride a bike without someone being with me. Additionally, I always had to leave the door unlocked in the bathroom while I was showering.
I was diagnosed as having outgrown the epilepsy when I was 20, and was weaned off my medicine at that time. I have not had a seizure since. From what I understand it is hereditary, but since mine did not show up until I was 10 we think it may have been related to my MMR booster. I do have one distant blood relative that has it, but no others in the family do.
Also, the MRI and EEG's are really nothing to worry about. The MRI is quite noisy and a little confining, but they most likely will give your child a sedative which will help her to relax while they do it. If the sedative works, the test will last approximately 20-30 minutes, depending on how much of the brain they need to scan. The MRI allows them to see if any brain damage has been done, and if so, which section of it is having the problem. It also checks for blood clots, tumors, etc. and will determine if this is the cause of the seizures.
I will say good for all of your for figuring out what this was before she had a grand mal. Those are quite terrifying to watch, as well as to have. Hopefully the medicine for epilepsy has gotten better since I was a child (I am now 40).
If you have further questions, do not hesitate to write back. Epilepsy can be scary for all involved, but once it is under control, things will return to normal.

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R.F.

answers from Los Angeles on

Hi there!
I was reading your title and when I saw (absence seizures) I continued to read on. My son, when he was 3 weeks old started to "shiver" when he fell asleep. I didn't think too much of it until my sister held him and told me he was having a seizure. I made an appointment and they did tons of tests. He used to burst out in tears at the oddest of moments. It turned out he did have seizures and they explained them as "absent seizures" and told me that he was having adult-like migraines as well. I felt horrible and slept with him in my arms for 2 years due to him also having the type of seizure where his body would suddenly go limp and he would have a blank stare. They told me I needed to sort of "wiggle him" out of those or he could be in them for hours. The actual diagnosis was inconclusive and his neurologist passed away so it was quite a long, confusing struggle. Anyway, he's 7 and fine now. He grew out of them and had all his immunizations at 4 years old. But...as one mom asked if you child had a series of shots at once. My son did and after that is when this all started. Praying that she grows out of them!! hang in there!!

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J.C.

answers from Los Angeles on

Hi Pat

My daughter is 10. She had a stroke when she was born and has Cerebral palsy. She does have seizures. They have changed over time to different types. She is on Trileptal to control them. She was seizure free for 3 years and then had one in April and one in May. They do throw her for a loop and she only has them when she is sleeping at home. She has never had them in the presence of anyone else. I think that is by the grace of God. It is scary but something you can control and work through. EDUCATE yourself and her peers so they are not scared or treat her differently, even if that means going to school and reading a story about it to her classmates. send me a private message if yo would like to chat further. My daughter also has yearly eeg's unless her seizures are more frequent.

good luck, stay strong!

Blessings
J.

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S.M.

answers from Los Angeles on

Hi,

I too have Epilepsy and I also have Kaiser so I know how wonderful they are!! From everything I have been told and read Epilepsy actually comes from your Mother's side. It can lay dormant for years and then pop up unexpectedly. I did not get my first seizure until I was 12. Mine personally were brought on by puberty. Epilepsy it a very complicated thing when it come to finding out when and where. There are so many variables. My son also has epilepsy so if are wrestling with guilt of maybe giving to her don't worry about that. It is not something that you can control. Good luck and I wish you all the best!!

S.

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M.S.

answers from San Diego on

Hi,

The Epilepsy Society is a great resource, as well as the Exceptional Family Resource Center.

Best Wishes,

M. S

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C.T.

answers from San Diego on

Hi, my daughter was diagnosed last year with the same thing and is doing well on medication. I was told if we could get them under control now she has a 60% chance of outgrowing them by the time she is 18. We tried kepra at first and now we are on lamictal. Always report if you see her have one so that they can adjust the medication. It really affects school learning so have your school nurse and teacher watch out for them because they are easily missed. No family members with it or relatives. Though I had my other children tested to make sure we were not missing anything. My daughter went untreated for about 2 years. We new something was wrong but couldn't put our finger on it.Hope this helps..

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A.W.

answers from San Diego on

My now 7 year old daughter was diagnosed with Absence Seizures nearly a year ago. As soon as she was diagnosed I went out to see what if any clinical trials were being done. There are two, if you Google clinical trials Absence Seizures you'll find them. One is being conducted at Yale University and the other at Mt. Sinai in New York. The one at Mt. Sinai is studying the genetics and there seems to be a genetic connection. My father-in-law had seizures as a child, my husband's brother had a daughter with absence seizures also, she has outgrown hers which is very common. Yale actually flew us out do to a functional MRI to see exactly where in the brain they occur and their findings to date show that they are localized not generalized seizures.

What treatment is she on? We have held off on our daughter with the anti-seizure drugs because of some other issues that we are trying to resolve, but I would like to know what treatment Kaiser gave you.

While it is scary, the more information you can find the better for all of you. There is a lot of info on the internet. We have also used chiropractic care with some success.

You and your daughter will be fine and hopefully she'll just outgrow them puberty seems to be a real blessing for a lot of kids with Absence seizures.

A.

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K.D.

answers from Pittsburgh on

I am so sorry you have had to go through this. It is the scariest thing ever. My son began having absence seizures (that we noticed) two years ago. After a lot of in and out at the ER, he finally had ongoing seizures for a week prior to his scheduled Neuro appointment. I always worried he wouldn't come back out of it. It has been a horrible ride, but he seems to be controlled on Keppra, although it does cause some irritability and fatigue that is h*** o* a kid his age. I blame vaccines. There is no epilepsy in our family, but both he and his cousin of the same age suffer from absence seizures. I am furious and at the same time relieved b/c I believe in my heart that had I had him fully vaccinated, he would have far worse neurological problems. I plan to log it on the NAERS website as soon as I get his vaccination schedule and track the details down. Prayers for you and your family. Now that you're getting some treatment, it will get better. My son has been on Keppra for one year now and seems to be seizure free (hard to tell b/c during his EEG, he was talking and normal, but spiking like crazy)... I pray that our kids and the other 1 in 100 who suffer from this outgrow it quickly. It's worth mentioning for the sake of anyone out there who sees this, that (1) antihistimines lower the seizure tolerance. If you think your kid is prone to seizures do NOT give them Benedryl. How I wish someone would have mentioned that sooner to me... (2) Absence seizures are frequently misdiagnosed as ADD or ADHD. The school was bucking to label my kid ADD, but it turns out, he was having seizures in Kindergarten, poor kid. Hang tough. Trust in God. All will be well.

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