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Old 08-25-2008, 06:21 PM - Thread Starter
 
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My youngest DC is 3.5. He had a febrile seizure May 30th. He had a second seizure June 29th while we were outside at a swim meet of his sister's. It was not terribly hot, but humid. We don't know what his temperature was at the time of the seizure. On August 11th he had his third seizure while laying next to me nursing down for his nap. His temp was normal. On the 14th he had an EEG ordered and we woke him up at 4 am to be sleep deprived. He had a small seizure at 5 am. He was able to complete his EEG and it was normal. On the 18th he had a seizure while driving away from his first day of pre-school. We had a MRI on the 21st and the preliminary finding is normal, the pediatric neurologist will go over it with us in detail at our appt, which isn't until the end of October unless there is a cancellation :. At this point both our ped and the neuro feel DS has a seizure disorder, brought on by having the febrile seizure as that lowered his seizure threshold. We started him on carbatrol xr Saturday night on the advice of both docs. It just doesn't feel right to me. I know I'm in denial to some degree, I just can't escape my fear of this drug. I read about side effects and feel sick inside. I understand the need to get a handle on things as the seizures have clearly increased. They are grand mal and last around 2 minutes. Afterwards DS sleeps for a couple of hours.
I would love to hear from anyone in a similar situation or with knowledge of this medication. To top it all off my father is going through chemo for bladder cancer. His bladder was removed in May and today they found a mass on his hip. He has been in so much pain they finally x-rayed his hip. If the cancer has gone into his bones he will likely stop treatment. He's 79 and for the most part we're all at peace with whatever he decides. The truly sad part in all this is that my DC will have very little memory of their grandfather despite living on the same property. He's been a workaholic his whole life and nothing has changed as all his energy is saved for his garden. Needless to say my stress level is rather high at the moment.
Thanks for reading,
Pamela
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Old 08-25-2008, 06:41 PM
 
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I saw this on the main page and thought I'd post. My dd had seizures from the age of 14 months till a bit after the age of 3. She remained medicated till she was almost 5.

I don't have any advice about the particular med that your ds is using, as it's unfamiliar to me, but just wanted to offer some hugs and an ear. When we were going through things a very sympathetic dr. told me that unfortunately there are icky side effects for every anti-seizure med. My best advice would be to find a ped. neuro that you feel VERY comfortable with and who will listen to you and let you be involved in your son's care. My dd was on 1 for a time that I knew in my gut was terrible for her (and involved a big risk of liver damage) and it wasn't controlling seizures. We kept complaining but weren't listened to till we found a different dr. He had her on a different med and controlled seizures inside of 3 months. I'll never forget him saying, "Wow...sounds like you've been talking but no one's been listening." Exactly!

You are right in that his seizures need to be controlled. Generally uncontrolled seizures are just going to lead to more, worse seizures, so control is very important. I certainly don't want to tell you *not* to read information, but just remember that a lot of the info out there is scary and might not even apply to your ds. Oh, and in case no one has told you, it's not unusual to have seizures and have a completely clear EEG and MRI.

My dd is 10 now, and has been seizure-free since she was 3. There is light at the end of the tunnel. Many children outgrow what they refer to as "childhood epilepsy." And even if it's not outgrown, a good neuro will work with you and your ds to find the right med or combo of meds for him. Best of luck, and I'll be thinking of you.

A happy woman
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Old 08-25-2008, 06:52 PM
 
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I wanted to offer my hugs to you as well. My dd was diagnosed with a seizure disorder at birth, also with normal EEGs and MRIs. She is expected to outgrow it, but I know it is so hard to watch our LOs have a seizure. We took her to a cranialsacral therapist. I'm not sure if it will help or not, but I am willing to try everything in hopes that she will outgrow them. It is a very good thing that your dc's mris and eegs have come back normal. We had considered not putting dd on meds because I hate starting her on medications, especially so early in life, but our neurologist explained to us that it is important to control them now in order to stop the neurons from firing incorrectly. Our dd is on phenabarb, though, which has been used for a long time so they know the most about it. There is a yahoo support group for those seeking alternative ways of dealing with it: epilepsy cured.

Your post also particularly struck me because my FIL was just diagnosed with bladder cancer. It is very hard to be dealing with both issues at the same time. Hugs to you and feel free to pm me if you ever want to chat.
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Old 08-25-2008, 10:09 PM
 
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Quote:
Originally Posted by vagabonder View Post
I wanted to offer my hugs to you as well. My dd was diagnosed with a seizure disorder at birth, also with normal EEGs and MRIs. She is expected to outgrow it, but I know it is so hard to watch our LOs have a seizure. We took her to a cranialsacral therapist. I'm not sure if it will help or not, but I am willing to try everything in hopes that she will outgrow them. It is a very good thing that your dc's mris and eegs have come back normal. We had considered not putting dd on meds because I hate starting her on medications, especially so early in life, but our neurologist explained to us that it is important to control them now in order to stop the neurons from firing incorrectly. Our dd is on phenabarb, though, which has been used for a long time so they know the most about it. There is a yahoo support group for those seeking alternative ways of dealing with it: epilepsy cured.

Your post also particularly struck me because my FIL was just diagnosed with bladder cancer. It is very hard to be dealing with both issues at the same time. Hugs to you and feel free to pm me if you ever want to chat.
Just a note to the wise about Phenobarb - if your dd doesn't outgrow the seizures and she's still on Phenobarbital when she's an adult having kids of her own. My mom was on Phenobarbital when she was pg with my sis and with me. We were both born addicted to it. My sister had to wean cold turkey and it ruined my mom's chance to breast feed her. I was in the NICU for 3 1/2 weeks (Respiratory Distress Syndrome, caused (I think) by the docs slicing through the placenta when they did the C Section) and got weaned off of it.
So IF she's taking it in the future when she gets pg, make SURE she tells her docs about it and make them wean the babies off.
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Old 08-26-2008, 12:35 AM
 
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My daughter has epilepsy with different types of seizures than your son and a different medication (Depakote). I also went through, and still do, denial and definite fear of the medication.

I realize there are long waits for neuro appts - but am surprised they didn't fit you in immediately considering your son is actively having seizures.
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Old 08-26-2008, 12:52 AM - Thread Starter
 
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Thanks everyone. Yeah, I can't believe the end of October is the best they can do either. I guess because he's consulting with our ped and they've put Will on the medicine they feel it's okay to be in a holding pattern. We picked up the cd of his MRI to send to neuro and we of course read the report. Our ped said it was "clear" which I now guess means free of any mass. There are a couple of sentences I'm worried about. I sometimes feel I know just enough to be dangerous to myself. I'm going to quit torturing myself because if he has epilepsy, he has it. The main thing is we are one week with no seizure and knock wood he does not seem to have any personality change with the meds yet. Of course we're only starting day 3.
Here's the thing, DS is very bright, verbal and aware. After the second seizure he faked one to get his sister upset. She screamed at me and I came running. I took one look at him and knew it wasn't for real. He saw me and started laughing. We told him it was not funny. Sunday afternoon he faked one again. He now knows he will have serious consequences if he does it again (Star Wars toys boxed up for 3 days). I just feel for him as this seems to be a way he can get control of a situation he otherwise does not have control of. He is able to fake them as he has observed DH and I describe them to the dr and others. He is really good at holding his mouth a certain way and somewhat unfocusing his eyes. He will also jerk his arms and legs a bit. As we have pointed out to DD, who has seen him have one seizure, he can't really fake it completely as he does not remember having the seizures. He's still nursing some as well and I've put my plans to wean on the back burner as I hope whatever little milk I have left might be beneficial to him.
Pamela
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Old 08-26-2008, 04:50 AM
 
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Oh, huge hugs to you!!! My dd also has epilepsy and takes Carbatrol (which has been a miracle medication for her; we just switched over from Tegretol) and I so understand your pain.

It is good news that the MRI came out clear. If you post what it says exactly I may be able to help you. (I work for a neurosurgeon).

I also struggled with the medicating. It took me about 2 years to accept the fact that my dd had this and NEEDED to be on medication. Over time, I've come to realize the medication has many benefits to her and it's not as scary as it seems. She's doing so much better now...

There is an epilepsy thread somewhere buried in this forum. If you do a search it should come up.
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Old 08-26-2008, 10:15 AM
 
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Ihave a seizure disorder, and I went through a long period of denial. But it is actually easier now for me to take my meds now that I've accepted it. It takes time and can be so scary. I know that my siezures have been significantly scxarier for my family than for me, because I have no memory of them, besides often being very sore afterwards. It is probably similar for your son since he has gran maul siezures too.

There is a book called "Treating Epilepsy Naturally" that has some great advice about children and things you can do to help them with the side effects of the meds and just different supplements that can help to replace some of the nutrients that some meds leach out of the body. It also has some good advice on how to make smaller amounts of medicine more affective.

 
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Old 08-26-2008, 05:30 PM - Thread Starter
 
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Thank-you so much ladies. I will get that book ASAP. As far as the MRI goes, it did say something about increased signal on T2 and incresed signal and intra-axial abnormality. The way it was worded was such that we couldn't really tell if that was what was there or was not. I have a call back in to the ped office as I don't want to wait until the end of Oct. to really know what this thing says. So far so good with the meds. I know it's only been a couple days, but I was just so sure it would change who my little guy is. I also found out I have a first cousin who had seizures from 18 months until he was 5 or so, then no more. I hope this means something good.
Thanks again,
Pamela
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Old 08-27-2008, 02:54 AM
 
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Do you have a copy of the MRI report? I would just call and ask for one, probably. That way you can at least go ask your PCP about it and not have to wait! I wouldn't want to be waiting that long either..
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Old 08-27-2008, 04:07 AM
 
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