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Old 01-14-2003, 04:14 PM   #1
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kasandrasdad HB User
Question IF ANYONE CAN HELP--- PLEASE!!!!!!

my daughter(who will be 2 next month) was diagnosed with epilepsy in April of last year. after two months of testing they told us she is having "complex, partial motor seizures." they put her on pheno-barb, but this did not react well with her, so they switched to Tegretol. My problem is that no matter how many doctors we talk to none can find a reason why she is having the seizures. There is no history of seizures on either side of family. we have changed doctors and hospitals, but still have no answers to any possible reasons/causes. Boo(my daughters nickname), has what we think are headaches/migranes. She will be playing and then out of no where start criing, grabbing her head saying ouch-ouch. She tries to rip her hair right out of her head at times, and has also started hitting her head because it hurts soo bad. This is very difficult for mom and me, because we dont know what to do. If anyone out there has had this happen to them or knows any information about what I have explained, PLEASE let me know. Also, the doctors said that there is a 85% chance that she will outgrow this, IF AND ONLY IF, they can control it with medicine. Unless she is hooked up to the EEG machine how are we or them(the docs) supposed to know whether this med is working? IF THERE IS ANYONE THAT CAN HELP PLEASE!!!???!!! THANK-YOU

 
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Old 01-14-2003, 06:11 PM   #2
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My prayers are with you and your family. I too have a two year old, and epilepsy is sort of in my family, I read where a child of somebody with epilepsy has a 90% chance of not having seizures, although somewhat reasuring, I still fear for my son, I watch him when he sleeps any movement that seems unnatural I freak and ask my husban if that's what I do when I have one. He say's that I don't do those things. But I still worry. Your story makes me cry, I can't imagine how she handles those migraines, that's to much.

Your Doctor is right in that some kids do grow out of it. Both my cousins who had seizures as children have not had one in over 10 years. Hopefully that gives you some hope. Good Luck and God Bless!
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Old 01-14-2003, 07:28 PM   #3
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So sorry to hear about your daughter. I also have been extremely frustrated at not knowing the cause of my daughter's seizures - age 8 temporal lobe partial seizures. The docs don't seem to care about the cause, just treating it. I feel if they'd ask more questions when patients are first diagnosed, then perhaps they'd find a common link. When did your daughter have her MMR vaccine? Seizures are listed as a side effect of this vaccine. However, I only knew about the falling down, jerking (grand mal) type. So, would never have associated what my daughter was doing (her seizures make her feel like she is going to vomit) with seizures. Her seizures started not long after her second MMR, but they told me she has a lesion/tumor. So, don't know if the vaccine could cause that. Believe me, I have agonized over everything. It's a devastating diagnosis. They have told me that with young children such as mine that sometimes there is a malformation of blood vessels which causes seizures. Genetics sometimes play a role. I personally have no one on either side with this. There is a very large comprehensive epilepsy center in NY - I believe it is called Columbia something. The good thing about this site is you will find a lot of older people who have lived with this condition all their life and have very normal lives. That brought me a lot of comfort. Not to mention they are loaded with info and compassion. My prayers are with your family. lazoo

 
Old 01-15-2003, 08:05 AM   #4
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[This message has been edited by satman (edited 02-16-2003).]

 
Old 01-15-2003, 11:19 AM   #5
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Hi Kassandras dad, As Satman stated, many who have seizures are never sure what caused it. My son is among those who have no real family history. (One great uncle but his was a birth injury and not considered hereditary). Sam was a twitchy baby, but not diagnosed with E until age 7. The tech for his first EEG questioned why we never saw anything, it was so abnormal. We did not because he was having mostly nocturnal seizures then. We only saw the after effects.

My heart goes out to you Dad. Hang in there. You can know if the med works by whether she keeps having seizures. Did you discuss the migraine headaches with doctors or Neuros? They could even be seizures, maybe a different type than the ones they know she has. My son, and others I talk to, can have them start as a violent pain in the stomach, a tooth, or the head. He will yell and grab the area...WHen it stops he acts very confused and post ictal, telling us what happened was a seizure. Hang in there, hope this has helped some.
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Old 01-15-2003, 03:40 PM   #6
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Thank You to all who have replied. Reading your stories has given me some comfort. I have discussed the headaches with the Doc's and Neuro's, and so far the only thing that has been done is they send us to check the Tegretol levels. They state that if she is getting either too much or too little this could be the cause. Unfortunately, the levels always come back within the required range. I state unfortunately, because if they were not within the range atleast there would be an answer to why she gets the headaches. Please excuse me as I cannot remember exactely what all of you wrote in your replies, so I will speak in general. BOO's MMR shot was in May, the month following her first series of seizures. The first hospital we went to said they were feberal seizures... the only problem being that she did not have a fever before, during, or after the seizure. So we ruled that out. When she had another seizure, I told the local hospital to immediately tranfer her to Children's Hospital of Buffalo. They did an EEG, Spinal Tap, MRI and several other tests that I cant remember the names(mostly blood work). Since then we have had several more EEG's, another MRI, and numerous, upon numerous blood work done. It wasn't until she was in for long time monitoring that they realized the seizures she was having. We have since changed Hospitals, to Strong Hopital in Rochester, and she is in the Epilepsy Clinic there, but the same as before, no CONCRETE answers. I did read something about the medicine(Tegretol) that headaches may be a side effect. If anyone else knows of different types of medicine that I could ask about your ideas would be helpful. Thank You once again to everyone that has helped. You, and your family are in our prayers, and we thank you for all your prayers. GOD Bless....

 
Old 01-16-2003, 04:17 PM   #7
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bruised HB User
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Kasnandrasdad.My brother started getting seizures at 16 yrs old.The only way he was diagnosed was that I,his sister,noticed that he would stare in lala land for about 10 seconds and not know what anyone said.It sarted getting worse and worse to the point of gran mal seizures and evetually totalling 7 vehicles including mine that were written off.He's now 23 and has been controlled,as far as I know for 3 months.

 
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