The Epilepsy Thread - Mothering Forums

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Old 03-04-2008, 05:17 PM - Thread Starter
 
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Hi everyone! Haven't posted in a long time, but thought it would be nice to start a thread for all of us whose children are diagnosed with this. We can use each other as resources and support!

I will start - my dd was diagnosed last summer at 2.5 with partial complex and secondary generalized seizures. She had her first seizure at 15 months, that we know of. She now takes keppra 2.5 ml twice a day but has had 6 breakthrough seizures since January. Our ped is currently trying to hunt down the neurologist, who is on vacation, for a med re-do. I think she just needs the dosage adjusted since she's been on this one since August and has gained 5 pounds since then. We've done a few MRIs in that time showing multiple lesions on the right hemishpere of her brain, mainly in the temporal and frontal lobes.

We just started psychiatry at the children's hospital and they will do the referrals for whatever other services she needs, since she just graduated from EI. Mainly all she needs is behavioral intervention, :


So how is everyone else doing? What kind of medications are you using, have you tried? Is your child in any sort of therapy or do they have a dual diagnosis? Come and share.
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Old 03-04-2008, 05:23 PM
 
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Emeric is 18 months and diagnosed with Symptomatic Generalized Epilepsy. He's also diagnosed with a Metabolic Disorder NOS. He takes 2.5 ml of Keppra 2x a day as well as 100 mg of Lamictal daily. A few weeks ago he had 2 grand mal seizures which he hasn't ever had but since raising meds we haven't seen any seizures. We tend to see good stretches and then bad. The meds help for a while and then we see breakthrough seizures.

He receives PT and OT weekly as well as play therapy and will start receiving more speech here shortly.

Nicole, mom of 3. Mitochondrial Disease.: Epilepsy
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Old 03-04-2008, 05:27 PM - Thread Starter
 
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Glad to see you! I've been wondering about you guys.

Violet is the same with her seizures, she is fine for 1-2 months and then will seem to have a cluster of random seizures, assorted variety.
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Old 03-04-2008, 06:04 PM
 
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Lily has Infantile Spasms, Myoclonic seizures, and Absence seizures. She is currently on Topamax, 200mg a day. Her epilepsy is totally uncontrolled and has never actually been controlled. She has about 2 clusters of IS a week, anywhere from 40ish-over 100 Myoclonic seizures a day and about 24-50 Absence seizures a day. Her Myoclonic count keeps rising, last night she had about 20 in one hour. We've almost exhausted our med choices and she's not a candidate for surgery or a VNS implant. We're thinking of trying the Keto diet soon.

She receives PT, OT, SLP, VI, and soon MT.

Mom to Dakota (6), Coy, (4), Max, (4), Lily (4), and Auri (June 19th 2010)!
Visit Lily's site at www.caringbridge.org/visit/lilymathis1
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Old 03-04-2008, 07:14 PM
 
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My 5 yr old dd has ESES (electrical status epilepticus in sleep). Her brain misfires approx every 5 seconds while awake and in 90% of her sleep. She also has absence, atonic, complex partial and simple partial seizures. She has had one tonic-clonic - the first seizure that we saw - 2 1/2 years ago. She has failed Keppra, Zonegran, Trileptal and the modified Atkins diet. We also tried homeopathy, which helped with side effects but not the actual seizures. She is currently on Depakene (750mg/day), Lamictal (25mg/day), Carnitor, Zantac and Prednisone.

She was just put on the steroids (prednisone) two and a half weeks ago. We are seeing some improvements, although nothing miraculous. She has gained a big belly and a round face pretty quickly and is constantly hungry and exhausted. She has VEEGs every 3-4 months. She will have a one-hour EEG next week and an AEEG (her first) in a couple months.

As far as I've been told, she is not a surgical or VNS candidate, so if the steroids don't work, I'm not sure what our next step will be. She does not qualify for special ed services, but does have a 1:1 para at school.

I am also a mom who has Epilepsy. I have myoclonics and absence.
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Old 03-11-2008, 01:54 PM
 
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My daughter Aurora had her first seizure 15 hours after recieving her 2 month vaccinations... 3 weeks later she had an intercranial bleed... leaving a nasty scar. She was weaned off Phenobarbital at 6 months and didnt have another seizure for about 1 year. They didnt put her on meds because they wanted to see if she would have more.

I just gave birth to a baby boy 6 weeks ago and she had another seizure 4 days after I had him, and then again in a week. She has Partial Complex Seizures, however the last seizure she had became Generalized and went into Status, we had to rush her to the ER and they had to stop it.

So she is now on Keppra 1.75ML twice a day, and its been 3 weeks 2 days and she hasnt had a seizure.... she is twitching in her sleep, so we are bringing her in for an EEG in the next week to make sure those are not little seizures while she is sleeping.

I am not sure what will happen with her seizures, they have always been very irregular and she has always responded really good to meds, so I am praying she outgrows this!
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Old 03-12-2008, 01:56 AM
 
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I’ve posted some of this before; sorry for the redundancy…

Maggie has generalized/focal/absense seizures.

While she was still an infant, I noticed Maggie had tremors in her hands. She had normal speech development but between twelve and eighteen months, she began loosing her speech. She started speech therapy and her speech improved quickly although she continued until almost age three. She had tremors, strange behaviors, melt-downs and tended to ‘zone out’. I was constantly reassured, by our ped, that all was fine – mainly because she was developmentally on track. At age three I demanded an EEG which revealed focal epileptiform activity in the left partietal region. The neurologist wanted to medicate immediately but I requested a 24-hour EEG and a MRI. The Extended EEG revealed frequent clinical and electrical seizures. Her MRI was normal. Depakote Sprinkles started in July 2007 (125mg twice a day). The dose was increased in August (125mg A.M. and 250mg P.M.) and again this month (250mg twice a day). Her behavior has changed greatly since being on the Depakote. And though it would be considered an ‘improvement’, for a while after medicating I missed the old Maggie, the Maggie I knew. However I think she is less frustrated, less withdrawn and happier.

She has hypotonia and although her fine motor skills are great, her hands shake while performing tasks and she has reduced hand strength. She had many sensory issues that are still present but definitely improved.

We believe she has been having breakthrough seizures the past few months. However, her seizures are so subtle and she is so quirky I am not sure. I am hoping she will outgrow these seizures and I sometimes still question whether we should be medicating…
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Old 03-12-2008, 03:42 AM
 
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caleb is three and has been having seizures since he was 2.5 or so, we think. he was dx with new onset idiopathic generalized epilepsy. he has had absence,
atypical absence, myoclonic, atonic and clonic seizures. Mainly he either blanks out, goes limp or if he is standing, or sitting, he will drop, sometimes a part of his body will twitch, but never his whole body. His brain is having electrical discharges all over, so its not from one area. He used to have 6-7 a day, the EEG was 45 minutes long and it showed 4. He is on depakene 4.5mls and now has 2 or 3 every other day or so, and at night also.
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Old 03-13-2008, 01:41 AM
 
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dbSam:

My daughter wakes up from a nap or in the middle of the night and has tremors... this started when she was about 1 years old, and it was just in her hands, not at 2 1/2 years old its all throughout her body.... The Neuro said this was normal.... I am still concerned!

We know that she has been having seizures, but on an EEG it showed that the trembling is NOT a seizure...

Still makes me feel uneasy... the Neuro said she should grow out of it.

QUESTION:

Do you see your children twitch during there sleep? Since Aurora's last seizure she has started to really twitch in her sleep, her twitching can be pretty hard at times... however she is easily able to wake. She is going to be having an EEG on Wednesday so we will be able to rule out if its seizures... Just curious to know if you have witnessed this kind of twitching....
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Old 03-13-2008, 01:52 AM
 
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yes my son does, but he does not wake easily. He usually startles awake on his own or does not wake up at all. Hope the EEG goes smoothly for you.
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Old 03-13-2008, 02:11 AM - Thread Starter
 
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Yes, my dd twitches during her sleep quite a bit. Also she seems to have tremors when transitioning in and out of sleep. Sometimes she'll seem to be picking at the air, or picking at her face while she is sleeping. When she does that, they ARE partial seizures. I think the tremor things are kind of borderline. Maybe not true seizures but some sort of generalized electrical activity in the brain. Or something.
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Old 03-13-2008, 04:36 AM
 
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AurorasMommy,
I only saw the tremors while she was awake and only in her hands. They were always very slight. If I wasn't interacting closely I would never have seen them so I'm not sure how often they really occurred. Then one day her therapist noticed tremors in her foot too. (She was sitting on the other foot but we assume it was too.) I was told the tremors were probably going through her entire body but since her core is stable you only notice it in the hands and feet. For years, my ped said not to worry because for a tremor to be a problem it would only occur on one side of the body. Several neuros told us this is not true and they believe her tremors were seizures. She has never had tremors during an EEG.

I never noticed Maggie twitching or moving at all in her sleep until she started taking Depakote. She's always slept beautifully; actually eerily still. We used to joke that she looked spooky on her back with her hands on her chest. She rarely moved. However, her extended EEG showed she had many seizures early in the morning - between one and four. Since taking Depakote, she moves while sleeping even falling out of bed and she moans.
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Old 03-13-2008, 04:58 AM
 
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I was wondering if anyone’s child has had increased urination since taking anti-seizure medication.

Prior to taking Depakote Maggie was usually dry throughout the night. Now, I need to put her in a diaper. (Which upsets her because as she says “She is on the potty train and doesn’t wear diapers.” - finally!!) I also need to change her every night around 1:00am because the diaper is full – it is dry until then. Often the diaper is full or soaked through again in the morning. She doesn’t go to bed with water so she is not drinking once in bed. It’s been suggested by friends that I ‘cut-off’ fluids at a certain time every evening. I do not limit or restrict fluids at any time while they are awake. Partially because I want them to drink if they are thirsty, I’ve read she should drink plenty of water while on Depakote, and I do not mind changing her during the night. Some nights she drinks close to bed time other nights she doesn’t – but she always fills at least one diaper. Her brother drinks the same amount – probably more – and is dry all night. This started happening almost immediately after starting Depakote.

I guess my concern is; why is she urinating so much? I know Depakote can affect the kidneys and the pancreas and just want to make sure there is no problem. (Her blood work has always been fine.) I’ve mentioned it to one of the neuros who didn’t believe there was a connection between the nighttime peeing and the medication. (I don’t think I’ve mentioned it to our newest and favorite neuro; I probably should.) It also seems odd that the urination is occurring the same time she had most of her seizures pre-medication.

This also explains why I tend to get online around 1:00 since I walk by the study with the computer after changing her.
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Old 03-13-2008, 05:14 AM
 
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my son does this as well. he used to go dry though the night, when he slept... but since being on depakene syrup he is now in pull ups, and more than once, has gone through the pull up, on to the bed, and he is constantly hungry.
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Old 03-13-2008, 05:34 AM
 
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Quote:
Originally Posted by momwifenurse View Post
my son does this as well. he used to go dry though the night, when he slept... but since being on depakene syrup he is now in pull ups, and more than once, has gone through the pull up, on to the bed, and he is constantly hungry.

Pull-ups are useless for Maggie - She goes right through them onto the bed. She sleeps so soundly she would just sleep in a wet bed so I use diapers.

They told me that Maggie would have an increased appetite and excessive weight gain is a potential problem. But Maggie has always been a big eater and it seems as though she actually eats less since being on the medication - but that could be a natural change for a three-year-old she was never picky before. She is gaining weight, but I think it is at a normal rate.

I notice her hair is thinning. Is your son's?
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Old 03-13-2008, 11:08 AM
 
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My dd had increased urination when we first started Depakene. It tapered off after a while (although it is way back up now with the steroids). Her hair has thinned out considerably. She also has tremors, but they are from the meds.
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Old 03-13-2008, 12:56 PM
 
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I'm a little late with my intro.

I have two sons that have/had epilepsy. Ds1 and Ds2 were identical twins with Tuberous Sclerosis Complex, a genetic disorder that often causes epilepsy, cognitive delays or learning disabilities, and autism. In our case, the seizures/infantile spasms started within just a few months of them being born.

Ds1 is six, and his seizures (BIG KNOCK ON WOOD) have been pretty well controlled with his current medication Felbatol. Before that we tried at least five other meds, and none of them worked for more than a few months. He had infantile spasms as a baby, but Vigabatrin was very effective in stopping those (he also went through ACTH injection therapy). His biggest risk for seizures are when he's sick...some viruses he's fine with, others seem to be extremely neuro-toxic for him. Last March he was in the ICU because of a very long seizure--we could have lost him. He has pretty severe cognitive delays (functions at 12-18 months), is physically very able, and has autism. He's non-verbal, and we've been struggling with some of the increasing difficulties with his autism--the self-harm stimming, anger and frustration, etc. We've found that he's doing much better on a small dose of Risperdal.

Ds2 was five when he passed away. His seizures were always much more difficult to control. Like his brother, he had infantile spasms (also stopped with Vigabatrin), went through many different seizure meds, and finally a combination of Felbatol/Lamictal was what worked for him. He also had two brain surgeries to remove epileptigentic (sp?) areas of his brain...one at 2 years old, one at almost 4 years old. Both of them were wonderfully successful, and gave James a big boost in the quality of his life. Despite all his challenges, he was a really happy kiddo. He was also diagnosed with autism, was non-verbal (though he did say "mama" and "dada" for a while before his language regressed), and was very cognitively delayed. His seizures were under control for the last year of his life, but he caught a virus at school and something about that virus caused a severe seizure (he had never been prone to virus-related seizures before). The seizure caused his heart to get stuck in an arrhythmia, which caused a lack of oxygen to his brain.

It feels weird to list out their challenges/procedures like that, but I should say that despite all the medical stuff and scary experiences, my boys have been a joy. I love them both with all my heart.

RedOak ~ Momma to DS (8) , DS (4) , DD (3) , & DD 9/10 ~
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Old 03-13-2008, 06:17 PM
 
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welcome red oak momma to this thread.

I am going to be going back to using diapers at night time with Caleb... even though it pains me to do it, he needs it. He too will sleep all night in a wet bed, without alerting me, and it is not good for his skin to be in contact with wet urine. He always wakes up with big red splotches because of it.

He has gained 2lbs in 1 month because of the depakene, and is now 32 lbs. They told me as of right now, to not worry about the weight gain... however 2lbs in a month seems quite a lot. His hair is also thinning, but not much...

off to change wet toddler sheets......
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Old 03-13-2008, 07:07 PM
 
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Hey, mamas..we could use some prayers and positive thoughts tomorrow. DD is having a short EEG to see if the steroids are working. We've been through 2 1/2 yrs and many meds and diets to try and stop her ESES and so far nothing has worked. If the steroids aren't working, I have no idea what the next step will be.
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Old 03-13-2008, 08:11 PM
 
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many prayers your way...
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Old 03-14-2008, 12:45 AM - Thread Starter
 
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Red Oak Mama. I had no idea about your son. He is so beautiful and has the most amazing smile.

Prayers will be sent for tomorrow!!!

We see the neurologist tomorrow about dd's breakthrough seizures. I don't know if they'll end up upping the dose of Keppra or adding another med.
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Old 03-14-2008, 01:46 AM
 
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Thinking about you, MindfulBirth and 2 opihi. I hope tomorrow goes well for you and your kiddos.

RedOak ~ Momma to DS (8) , DS (4) , DD (3) , & DD 9/10 ~
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Old 03-14-2008, 02:06 AM
 
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MindfulBirth and 3_opihi,
I hope your appointments go well tomorrow.
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Old 03-14-2008, 05:26 AM - Thread Starter
 
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Thanks everyone. It is so nice to have people to talk to about this, who actually understand.
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Old 03-18-2008, 01:44 AM
 
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how many breakthrough seizures do your children have, while on medication?

Mine is now averaging 1 every few days, normal?
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Old 03-18-2008, 02:17 AM
 
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Excessive peeing could be carnitine deficiency from the meds. Initial carnitine studies were done for children taking depakote, IIRC. Carnitine often helps symptoms/issues that go along with seizure meds.

My intro: I have two boys (8 yo and almost 4 y o). Both have a seizure disorder NOS. First started having seizures at 13 months. Second had his first recognizeable seizure at 17 months. Both are thought to have a metabolic disorder. The youngest also has dystonic attacks. The oldest also possible has these.
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Old 03-18-2008, 03:31 AM - Thread Starter
 
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Quote:
Originally Posted by momwifenurse View Post
how many breakthrough seizures do your children have, while on medication?

Mine is now averaging 1 every few days, normal?
I don't know the answer to this question, really. I know the goal is to have no breakthroughs, but depending on the type and severity of the epilepsy that isn't always possible. And sometimes, they just happen no matter what - like if my daughter gets really hungry or thirsty or sick/febrile, then she will have a seizure no matter how much medication she's taking.

Am I correct in reading somewhere that your child just started meds recently? If they're still having seizures, I would definitely call the doc - you may need to try another med or adjust the dose. We definitely had to try a few before we found one that worked.

In other news, we saw the neuro on Friday and decided to up the dose of Keppra. We're weaning up on 3ml twice daily, then will slowly go up all the way to 4ml. Things are going well. It seems that the higher dose has actually mellowed her out rather than causing the behavioral problems that we usually get.

Anyway, hopefully this will work. If it doesn't, we'll have to figure out a way to transition over to Lamictal, but really want to save it as a last resort.
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Old 03-18-2008, 02:07 PM
 
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Originally Posted by mamaverdi View Post
Excessive peeing could be carnitine deficiency from the meds. Initial carnitine studies were done for children taking depakote, IIRC. Carnitine often helps symptoms/issues that go along with seizure meds.
Our neuro checks carnitine levels when she does the routine blood work. We supplemented with carnitine briefly but when we switched neuros she suggested we stop since my daughter's levels were always fine. I'm going to mention the excessive peeing again anyway and ask if we should supplement even though her numbers are testing fine.
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Old 03-18-2008, 05:05 PM
 
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Quote:
Originally Posted by momwifenurse View Post
how many breakthrough seizures do your children have, while on medication?

Mine is now averaging 1 every few days, normal?
It depends on the type of epilepsy, but most doctors would rather see breakthroughs be more rare. James' epilepsy was always difficult to treat, so if we got to a point where he was having a breakthrough once every month or two, they considered that good. With ds1, his epilepsy is more under control on his current med (felbatol)...so if he has a breakthrough we know he needs his meds upped.

I'd call you child's doctor...at more than a couple of seizures a week, her brain isn't getting much of a break. I'd talk about increasing meds or trying/adding a new med.

RedOak ~ Momma to DS (8) , DS (4) , DD (3) , & DD 9/10 ~
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Old 03-19-2008, 12:03 AM
 
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Red Oak Momma: I am sorry about your son! I am glad to hear your other son is doing well.

TREMORS: Ok, I have to say I AM LITERALLY shocked that you guys brought up the tremoring.... I have been VERY concerned about this for a year n half. My daughter tremors as well ONLY coming out of sleep. She started where you would only notice it in her hands, but sometimes you can see her WHOLE body trembeling... and the other day her hands were shaking so bad she dropped her cup. The thing is, is that she is fully concious at the time! Do you really think that they are seizures? I have video taped it, and the neuro said that she thought that it was something that she would eventually grow out of, but it has gotten worse, not any better. Have any of you had your childs EEG and caught the tremoring on it? I am hoping to get it on this EEG that we have tommorow! Its a 24 hour EEG so I am hoping that it turns out with good news!

BREAKTHROUGH SEIZURES: My daughter has been on the meds for a little over 4 weeks now, and no seizures. She wasnt on any meds before and she had 3 seizures within a year n half. She does have a REALLY bad cold right now, spiked a fever, and has a BAD ear infection.... and still no seizure, so I am assuming this is good!

QUESTION:

Did your childs seizures start off uncontrollable, or did it work its way to that? Meaning: did they have alot of seizures, or was it different and always changing? My daughters seizures have always been very irregular, and I am wondering if they will stay that way? I havent met with the Epilepsy Doctor yet, so I didnt know if a persons seizures stay about the same, or can they get worse? I do know that sometimes woman will have more increased seizures during periods, and puberty.... my daughters seizures are from scar tissue, and I do know her last EEG which she had about a little over a year ago showed some spikes in the area where her scar is, but there were no seizures.....
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