Dear everybody,
I've been reading for a while, but afraid of posting as this might make things more real and scarry. But they are real and scarry, so here I am.
I'm the mother of 17month old twin girls. They were born prematurely at 34 weeks. They were then healthy, stayed in the hospital for only 18 days to gain some more weight, keep there body temperature and learn to drink the bottle.
The smallest one, 1860g at birth, had at 13 month her fisrt seizures. During the night, while sleeping she was complaining, like something would hurt. At midnight I just woke up, looked at her and she seemed strange to me. I took het from her bed, put her on our big bed and she start seizing. I screemed for my husband, he took her, went to the leaving room, put some cold water on her face and in 2 minutes she was ok. She had fever so we start Paracetamol. We called the hospital, they accepted for us to come since it was the first seizure for her. My husband took her, the doctor checked, said it's probably an ear infection and it's simply a fever convulsion. This was bad, but we knew it could happen since my husband had fever convulsions as well, as a child. We gave another paracetamol after 6 hours (those were the rules, now we do it every 4 hours) when she also woke up. She still had fever, but looked good and wanted to play. I changed her and took her to play. Five minutes after, she just wanted to be hold, I took her in my arms and she start showing things in the house, but she would not look at me if I called. I screemed again for my husband, he took her, put her on the couch (this time we knew better, we've been reading all night long), undress her, put a wet towel on her forehead, start counting minutes. After 5 minutes I called the ambulance. She stoped seizing after 7 minutes in total. When the ambulance came, they said she is stable now and the familiy doctor should decide if she needs to be taken to the hospital. They called and made an imediate appointment, the family doctor called the pediatrician which admitted us to the hospital because she had 2 seizures in a time interval smaller than 12hours, we were told.
She stayed 2 days, they only did blood work and urine check-up, decided it's an otitis, put her on antibiotics, and we left home with the diagnostic of fever convulsions. We got Stesolid, for just in case.
Five weeks later, on a Monday morning, the same story: she wanted to be in our arms, she start pointing at things and not responding us when calling. We imediatly realized it's happening again, after 5 minutes Stesolid, waited for 2 more minutes, nothing, call ambulance. They came when she was seizing for 15 minutes already, gave oxygen, took her to ER. In there they gave another Stesolid, no reaction, Dormicum through IV, she stopped seizing after 45 minutes. Second time and status epilepticus. And no fever, so at the moment of seizure she had no fever. They checked for pneumonia, blood, urine, she had again an ear infection and some other viral infection. After 8 hours from the seizure she had high fever. Her sister had as well a viral infection, spots on the skin, etc.
Finally the neurologist was called to see if he considers she needs other tests. We told him our worries and he decided she needs EEG, MRI. In parallel they did ECG, metabolic deseases tests, and of course initial tests: glucose, electrolites, and others to find the trigger for the seizures. EEG, ECG, MRI came out ok. However, specialist said the seizure is more risky than medicine so he started her on valproic acid, 80mg a day. We were home after 5 days in the hospital and next weekend we were back again; no seizure, but high fever and because of the risks they kept her for the weekend. Otitis is again the cause of the fever, specialist says she needs an myringotomy; she got as well antibiotics. One week after myringotomy, again otitis, lots of licquids coming out, antibiotics again. No seizure. Another infection after 2 more weeks, fever, no seizure. Meet neurologist, tests the level of Depakine in blood, cames smaller than limit, however considers she's doing ok, she had other infections and fever withot seizure so he says we leave it as it is. Two more weeks, and she gets again fever. Start Paracetamol in the night, 22:00, actually withot fever because she was complaining while sleeping. At 1:00 she had fever so we gave another one, 5 again, 9 again, 10:30 she goes to sleep, wakes up after 1 hous caughing. She would usually sleep for 2 hours, so this was strange, but we said it's probably the caughing. In half an hour the same story, Stesolid, emergency, second Stesolid after half an hour in the ER, no response, IV with her daily dosage of Depakine and she stops seizing again after 45 minutes. Tests for viruses, bacterias, meningitis, pneumonia, nothing except RS virus. Her sister has is as well, caugh, running nose, but deals with it at home.
We find out that metabolic deases tests found a peak in an aminoacid, but nothing to woory,we're told, since it could be due to some medication. Since she's back in the hospital, the test are repeated, but result in begining of January. As well as results for tests on the status of her imune system.
One last thing to tell is that both times with status epilepticus there was some excitement previews 2 days (first time pool all day long, followed by visit at some friends next day, second time me coming back after a week of work related absence and lots of playing, at home this time).
Thank you for reading all that, I thought it's important to tell everything, so the story is properly understood.
I'm waiting for any info, advices, anything. It's been so hard for us, the parents, her as well in the hospital so many times with all those people in white coming to do something to her and her sister which was so sad without her. It's been hard as well when the doctor says "sensitivity towards epileptic seizures", what is that? I mean she's got twice status epilepticus. And what does it mean, why it's so severe, why it doesn't happen with all infections, but only some? And should we thing is less bad because eeg and mri were ok? We know it's maybe impossible to answer such questions, we've been reading a lot, but it's so hard to be on dark, is it going to happen again, can it worsen, will we find something to control her seizures, will it all go away as she grows up, will the medicine influence her, and so much more...
Thanks again for reading and I'm anxious on getting new friends here. Good luck to everybody, lots of health and no seizures!
I've been reading for a while, but afraid of posting as this might make things more real and scarry. But they are real and scarry, so here I am.
I'm the mother of 17month old twin girls. They were born prematurely at 34 weeks. They were then healthy, stayed in the hospital for only 18 days to gain some more weight, keep there body temperature and learn to drink the bottle.
The smallest one, 1860g at birth, had at 13 month her fisrt seizures. During the night, while sleeping she was complaining, like something would hurt. At midnight I just woke up, looked at her and she seemed strange to me. I took het from her bed, put her on our big bed and she start seizing. I screemed for my husband, he took her, went to the leaving room, put some cold water on her face and in 2 minutes she was ok. She had fever so we start Paracetamol. We called the hospital, they accepted for us to come since it was the first seizure for her. My husband took her, the doctor checked, said it's probably an ear infection and it's simply a fever convulsion. This was bad, but we knew it could happen since my husband had fever convulsions as well, as a child. We gave another paracetamol after 6 hours (those were the rules, now we do it every 4 hours) when she also woke up. She still had fever, but looked good and wanted to play. I changed her and took her to play. Five minutes after, she just wanted to be hold, I took her in my arms and she start showing things in the house, but she would not look at me if I called. I screemed again for my husband, he took her, put her on the couch (this time we knew better, we've been reading all night long), undress her, put a wet towel on her forehead, start counting minutes. After 5 minutes I called the ambulance. She stoped seizing after 7 minutes in total. When the ambulance came, they said she is stable now and the familiy doctor should decide if she needs to be taken to the hospital. They called and made an imediate appointment, the family doctor called the pediatrician which admitted us to the hospital because she had 2 seizures in a time interval smaller than 12hours, we were told.
She stayed 2 days, they only did blood work and urine check-up, decided it's an otitis, put her on antibiotics, and we left home with the diagnostic of fever convulsions. We got Stesolid, for just in case.
Five weeks later, on a Monday morning, the same story: she wanted to be in our arms, she start pointing at things and not responding us when calling. We imediatly realized it's happening again, after 5 minutes Stesolid, waited for 2 more minutes, nothing, call ambulance. They came when she was seizing for 15 minutes already, gave oxygen, took her to ER. In there they gave another Stesolid, no reaction, Dormicum through IV, she stopped seizing after 45 minutes. Second time and status epilepticus. And no fever, so at the moment of seizure she had no fever. They checked for pneumonia, blood, urine, she had again an ear infection and some other viral infection. After 8 hours from the seizure she had high fever. Her sister had as well a viral infection, spots on the skin, etc.
Finally the neurologist was called to see if he considers she needs other tests. We told him our worries and he decided she needs EEG, MRI. In parallel they did ECG, metabolic deseases tests, and of course initial tests: glucose, electrolites, and others to find the trigger for the seizures. EEG, ECG, MRI came out ok. However, specialist said the seizure is more risky than medicine so he started her on valproic acid, 80mg a day. We were home after 5 days in the hospital and next weekend we were back again; no seizure, but high fever and because of the risks they kept her for the weekend. Otitis is again the cause of the fever, specialist says she needs an myringotomy; she got as well antibiotics. One week after myringotomy, again otitis, lots of licquids coming out, antibiotics again. No seizure. Another infection after 2 more weeks, fever, no seizure. Meet neurologist, tests the level of Depakine in blood, cames smaller than limit, however considers she's doing ok, she had other infections and fever withot seizure so he says we leave it as it is. Two more weeks, and she gets again fever. Start Paracetamol in the night, 22:00, actually withot fever because she was complaining while sleeping. At 1:00 she had fever so we gave another one, 5 again, 9 again, 10:30 she goes to sleep, wakes up after 1 hous caughing. She would usually sleep for 2 hours, so this was strange, but we said it's probably the caughing. In half an hour the same story, Stesolid, emergency, second Stesolid after half an hour in the ER, no response, IV with her daily dosage of Depakine and she stops seizing again after 45 minutes. Tests for viruses, bacterias, meningitis, pneumonia, nothing except RS virus. Her sister has is as well, caugh, running nose, but deals with it at home.
We find out that metabolic deases tests found a peak in an aminoacid, but nothing to woory,we're told, since it could be due to some medication. Since she's back in the hospital, the test are repeated, but result in begining of January. As well as results for tests on the status of her imune system.
One last thing to tell is that both times with status epilepticus there was some excitement previews 2 days (first time pool all day long, followed by visit at some friends next day, second time me coming back after a week of work related absence and lots of playing, at home this time).
Thank you for reading all that, I thought it's important to tell everything, so the story is properly understood.
I'm waiting for any info, advices, anything. It's been so hard for us, the parents, her as well in the hospital so many times with all those people in white coming to do something to her and her sister which was so sad without her. It's been hard as well when the doctor says "sensitivity towards epileptic seizures", what is that? I mean she's got twice status epilepticus. And what does it mean, why it's so severe, why it doesn't happen with all infections, but only some? And should we thing is less bad because eeg and mri were ok? We know it's maybe impossible to answer such questions, we've been reading a lot, but it's so hard to be on dark, is it going to happen again, can it worsen, will we find something to control her seizures, will it all go away as she grows up, will the medicine influence her, and so much more...
Thanks again for reading and I'm anxious on getting new friends here. Good luck to everybody, lots of health and no seizures!
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