My baby recently had seizures - please come talk to me about this! - Mothering Forums

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#1 of 17 Old 02-22-2009, 06:33 PM - Thread Starter
 
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I posted in health and healing and also in toddlers, now I'm posting here. I don't know where will get the best response, but I am just looking for others who have the same/similar experience.

http://www.mothering.com/discussions....php?t=1045545

Doing my best every day with DH , DD (11) , and DS (4)

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#2 of 17 Old 02-22-2009, 06:43 PM
 
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Hi Granola -

First of all -

It is so scary to watch your LO experience a seizure and even more so when there are so many in a shorter period of time.

My son is 2.5. He started having seizures at 4 months old - he went through a battery of tests. EEG, VideoEEG, and MRI. His condition is genetic and effects more than just his brain and seizures.

I don't post here very much but I wanted to respond to your post - I don't have all the answers but I have a listening ear and understanding heart for what you are walking through.

~j
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#3 of 17 Old 02-22-2009, 06:53 PM
 
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so she had 15 *without* any fever reducing meds?
my dd has a seizure disorder and also has an extremely low febrile threshold, like 99 degrees. if i don't give tylenol, motrin... they just keep on coming. sorry you are going through this and hoping that it is just febrile seizures for your little guy.
when we started down this road at 4 months old (now 2.5) we waited a bit to start meds because i just didn't personally agree with medicating for febrile seizures, as they all wanted to do. the seizures were not affecting my dd negatively as far as all the drs could tell. just bolding because it would have been a very different decision otherwise and i know many disagree with this choice we are now dealing with epilepsy and are on Keppra. she is developmentally on track (she is a twin so it is an easy comparison for us) but this is not always the case for many with seizures.
viruses are the worst for us with their high, long-lasting fevers and we take some pretty extreme precautions in our home against getting sick
keep us posted on your test results.

adding: oh, and we have no diagnosis, no brain abnormalities, no genetic issues, all mri's clear...
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#4 of 17 Old 02-22-2009, 07:31 PM
 
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It's true that 15 seizures would be uncommon for febrile seizures. My sons seizures started coming frequently(daily) after an illness. Sometimes kids have febrile seizures and sometimes kids get sick and have seizures because of an underlying disorder and their body's get stressed and bring on symptoms like seizures.

I would agree with your neurologist about doing further testing.

Nicole, mom of 3. Mitochondrial Disease.: Epilepsy
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#5 of 17 Old 02-23-2009, 12:07 AM - Thread Starter
 
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Thanks for responses so far.

The pedi neuro thinks its not febrile, b/c he really didn't have much of a fever, and was barely acting sick, and then the seizures just kept on coming. And he's been sick and had fevers before, high even, but never seizures.

His EEG, catscan, and bloodwork were all normal. Pedi neuro wants to do his own EEG and an MRI.

I sure hope it turns out to be nothing, never happens again, and he doesn't have to be on anti-seizure meds. He was on them in the hospital, and it made him very loopy.

Doing my best every day with DH , DD (11) , and DS (4)

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#6 of 17 Old 02-23-2009, 11:57 AM
 
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Thanks for responses so far.

The pedi neuro thinks its not febrile, b/c he really didn't have much of a fever, and was barely acting sick, and then the seizures just kept on coming. And he's been sick and had fevers before, high even, but never seizures.

His EEG, catscan, and bloodwork were all normal. Pedi neuro wants to do his own EEG and an MRI.

I sure hope it turns out to be nothing, never happens again, and he doesn't have to be on anti-seizure meds. He was on them in the hospital, and it made him very loopy.
Did they do a tox screen? Is it possible he got into some medication somewhere?

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we're : with and : and
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#7 of 17 Old 02-23-2009, 06:07 PM - Thread Starter
 
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Did they do a tox screen? Is it possible he got into some medication somewhere?
I don't think so, and I don't think so.

Doing my best every day with DH , DD (11) , and DS (4)

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#8 of 17 Old 02-23-2009, 10:48 PM
 
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I don't think so, and I don't think so.
I hope they can find you some answers! Seizures are very, very frustrating. Especially when unexplained.

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we're : with and : and
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#9 of 17 Old 02-24-2009, 11:40 PM - Thread Starter
 
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OP here.

The pedi neurologist that we met with wants to do more tests on my ds. Part of me wants to pursue this, part of me wants to not put him through any more tests, and just let it go and hope this never happens again. The seizures were all short, and the pedi neuro suspects they were due to viral encephalocacus (sp?) although there's no way to know that now.

wwyd? would you get more tests, just to rule things out, or wait to see if another seizure occurs?

He has no other symptoms of anything and is, in all other ways, normal and healthy.

Doing my best every day with DH , DD (11) , and DS (4)

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#10 of 17 Old 02-25-2009, 12:12 AM
 
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OP here.

The pedi neurologist that we met with wants to do more tests on my ds. Part of me wants to pursue this, part of me wants to not put him through any more tests, and just let it go and hope this never happens again. The seizures were all short, and the pedi neuro suspects they were due to viral encephalocacus (sp?) although there's no way to know that now.

wwyd? would you get more tests, just to rule things out, or wait to see if another seizure occurs?

He has no other symptoms of anything and is, in all other ways, normal and healthy.
I would do the tests. If there is something you can or should be doing to prevent future seizures, you want to know now, before they happen. It's good to hear he is doing well and feeling healthy!
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#11 of 17 Old 02-25-2009, 12:41 AM
 
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My ds had seizures when he was young, he had one febrile seizure when he was one but the other seizures began around 19 months.

There were days when I would have thought that 15 would have been a blessing...because he would have many, many more than that in a day.

We did tests, the EEG, MRI, urine, blood, etc. but everything kept coming back normal, so we stopped there.

Eventually we did find (on our own) that it was related to digestion and food allergies.

We did all natural therapies and my son has been healthy & strong now for 7 years.

Listen to your instincts and do what feels best for your child and your family. I wish you all good health.
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#12 of 17 Old 02-25-2009, 05:38 AM
 
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Hi mama! First, hugs to you. Seizures are so scary.

My dd has epilepsy due to non enhancing brain lesions and I also work for a pediatric neurosurgeon. My advice to you would be to go ahead and do the testing, especially the MRI. There could be so many things going on it's just hard to even speculate. It's also just as possible (and most likely) that the seizures are idiopathic (without a known cause). But you really want to make sure there's nothing else going on in that little brain of his.

Take care!
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#13 of 17 Old 02-25-2009, 07:30 PM - Thread Starter
 
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Eventually we did find (on our own) that it was related to digestion and food allergies.
How?

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Hi mama! First, hugs to you. Seizures are so scary.

My dd has epilepsy due to non enhancing brain lesions and I also work for a pediatric neurosurgeon. My advice to you would be to go ahead and do the testing, especially the MRI. There could be so many things going on it's just hard to even speculate. It's also just as possible (and most likely) that the seizures are idiopathic (without a known cause). But you really want to make sure there's nothing else going on in that little brain of his.

Take care!
Yeah, I guess I'm leaning toward doing the tests, just to be safe. My understanding is that he will be anesthetized for this round, unlike in the hospital where I had to hold him down.

Where are you? Our pedi neuro at Cook's in Fort Worth, TX.

Doing my best every day with DH , DD (11) , and DS (4)

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#14 of 17 Old 02-25-2009, 09:56 PM
 
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ds2 has had seizures since being put on Reglan for GERD at first they thought they were just infantile because after d/c the Reglan the seizures gradually went away. then at 18mths, he had a grand mal. and continued to have them every 2-3wks accompanied by severe behavior changes. he had 3 EEG's including one 24hr monitoring that we did at home and an MRI. lots of blood work. everything was normal. finally, we found a neuro we liked who didn't dismiss everything as reflux flares or autism and they started him on meds (trileptal) and he's fine! he hasn't had a seizure since December 1 *knock on wood* and his behavior is normal. our hope is that since everything looks "normal" that he'll eventually be able to get off the med.
good luck to you and I hope the tests come out well!

anne, mama to Isaak (6.13.05) Joe (2.24.07) and Eli (8.17.09) wifey to J since 2002 petparent to our retired racer "Under Rated" aka Jango.  help put an end to dog racing! 
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#15 of 17 Old 02-25-2009, 11:25 PM - Thread Starter
 
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Boy, the more I hear about other people's experience with seizures, the more mysterious they become!

Doing my best every day with DH , DD (11) , and DS (4)

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#16 of 17 Old 02-26-2009, 12:21 AM
 
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How?
Are you wanting to know how we did it on our own?

They started to happen in what seemed like patterns, so I started to journal and keep track of EVERYTHING...what he ate, what I ate, what we did, where we went, clothes, people, places, etc. and I started to find patterns and I realized it was related to foods he was eating.

It was an incredible journey for sure and I learned a lot.
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#17 of 17 Old 03-01-2009, 01:48 PM
 
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I just wanted to offer some support and a
Our little miss cotton ball button has bad epilepsy, I still remember the first seizures we went trough, it's so scary. And we've had days with more seizures than that in a row, so I know how that feels.
I'd do the tests, and we're doing a seizing journal, we have been ever since the first one actually. Well, now we don't write down anything but the seizure, what kind it was, and the time, and if she needed meds. etc. and how long it lasted. But we've had long periods of time where we have written down everything like MsChatsAlot to see if we could find any patterns etc. Very useful to both us and the docs.

-pixie, my dear, and (A-88), N-98, Littlest-06/00-08/00, J-03 & Little Miss Cotton Ball Button-03 (SN), S-05, Hope-loss 09/09, Bean-loss 04/10, and littlePopcorn due feb. 8th -11.
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