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Old 08-02-2002, 09:59 PM
AuntieKLE's Avatar
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Pinkie Winky Child with Seizures (Epilepsy)

Hi!

I was just wondering if anyone is the parent of a child with seizures. How do you cope with the seizures, meds, Doctors, etc?

My ds is 7 yrs old. He was diagnosed with a seizure disorder when he was almost 4. He is also Developmentally Delayed. He takes Depakote 250mg and Tegretol 100mg to control his seizures. He takes alot of meds for his size(55 lbs).

Depakote 250mg - 1 pill am, 1 pill noon, & 2 pills pm.
Tegretol 100mg - 2 pills am & 3 pills pm.

We started the yr out with a seizure each month for the first 3 months. Then his meds were increased again. The seizures are called "breakthrough" seizures and occur whenever his levels are low. There is no pattern. The seizures keep changing too. At first he was having Absence seizures( staring off into space). Then he started having Tonic clonic seizures( moving one arm and leg).

The Doctors don't know the cause of the seizures. But they do say that he may outgrow it. We hope and pray that he will.

We just take each day, one day at a time.

If anyone wants to talk, you can e-mail me at [email protected]

I hope everyone has a great day!;-)
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Old 08-03-2002, 01:31 PM
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chuckle seizures

Hi
My daughter had Hydrocephlus (water on the brain) was shunted at 6mos of age. We were told she was prone to seizures well she did have one at the age of 6 and tho and behold the drs tell me that it was not a seizures and since I am not a doctor that I had no right to tell them it was...Well I did everything I could when she did have it then I took her to another one to get a second opinion...She will be 8 this month and she is not on meds and has had no others seizures he(dr) second and nuro said it was probally a febile one....I am at wits end wonder if it could happen again.... So I take each day as it comes too
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Old 08-03-2002, 02:38 PM
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Pinkie Winky

Hi!

My ds started having fibrile seizures at the age of 2. About 6 months later another one. And one more at the age of 3. We never knew what it was called until the 3rd one.

The Dr said a Febrile seizure is caused by the temperature gauge in the body not mature enough to work right and shuts the body down. (It usually happens when the temp hits fast. It also doesn't matter how how the temp is either. It's just the speed it hits). Most kids out grow it around the age of 7 or so.

Each time we got him to the Emergency room, he would be coming out of it. And the Drs. would ask why he was there. We would then be released after labs were done and the results were back. (Usually about 5 or 6 hrs later).

The next time he had a seizure, it was different because he stopped breathing. So the Drs. say he now has a seizure disorder. That was when the meds were started. And every seizure since then his meds seem to be increased.

Sometimes, I wonder why he's even on the meds. Especially when he goes so long without seizures. But it seems that when ever I start to get that feeling he has another seizure.

I think the most frustrating is when the Drs don't know how to help, other than more meds.

My ds son has gotten so good at taking his pills. I wish I could swallow pills so easily!

Just taking it one day at a time.

Take care.;-)
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Old 08-03-2002, 10:15 PM
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seizures

Hi
Wow. You are right..Sometimes the dr's dont want they are doing When we took ours to emergency once I had already told them I knew it was not the shunt...That she just needed some med for her bad coughing spells...They had about 7 interns come in and look at her and ask 20 questions (never saw a patient that had a vp shunt) the other thing is they can look up on her charts for history but they dont they contantly have me fill things out. You know I had said the same thing sometimes I feel she didnt need the shunt because she is still on her 1st one and has had no revisions and we know lots who have had 1-5 revisions..But I dont want to know what would of happen if she had not the surgery....Just taken each day at it comes too Hang in there God Bless ya
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Old 08-05-2002, 01:35 PM
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To ALL...

You're not nuts, and this is survivable!

Brief history:

Dd, now 25 and eldest of five, was having seizures before she was born, but, as you already know, no one would believe me. I was, as you are or will be, the quintessential mother dragging her kid from doctor to doctor and dismissing them all as quacks. She was finally diagnosed at age 12 with Absence (petit mal, or staring) seizures plus a few other kinds of motor seizures. Her baseline rate was in excess of 20,000 a day. Part of the troule with diagnosis was the extraordinary frequency - she was flashing in and out so fast that nobody could see it. Except for her crazy mom, of course. We were told she would outgrow them, or they would get worse. Well-meaning friends all assured us she's outgrow it. At age 16, she began developing grand mal seizures. Breakthroughs now are hourly/daily for petit mal and several times a month for grand mal. They mutate from time to time in type, frequency, severity, and duration for no detectable reason. Not a candidate for surgery, vegas nerve stimulator implant, or ketogenic diet. She has a few more problems to deal with because she's also autistic and schizophrenic.

BUT, she lives a full life as she sees it, and is a happy, reasonably productive member of society.

I am not heroic, courageous, or in need of sympathy, nor will I bore you with 25 years of war stories. This is all merely to let you know that you're not alone and that you and your child will make it through ok.

Now: a few of my never-to-be-humble recommendations:

FACT #1 - YOU ARE THE !!EXPERT!! And, yes, I'm yellling this at the top of my lungs. Don't ever let any mere "professional" convince you that you don't know what you're talking about. They are nothing more than people with academic credentials and bizarre vocabularies. They don't know your kid. If you ever feel like you're beginning to forget FACT #1, email me and I'll pound it back into your head.

Advice #2 - If you can possibly get to a large children's hosital or university research hospital, do so. Their neuro clinics are generally far superior to anything else. Private general practice neurologists are practically worthless when it comes to pediatric epilepsy - they rarely if ever see it, can't possibly keep current with the literature and research and current therapies. Neurologists at children's research hospitals generally understand what's going on and are fairly current. Neurologists in university research hospitals are still in academia and usually on the cutting edge of current practices and drug therapies. If all else fails, see if your county medical board knows of any local "epileptologists, " neurologists specializing in epileptology, or the study of epilepsy. (And if you ever find a neurologist named Andrew Reeves who went to Mayo Med School, move heaven and earth to get in with him. The most remarkable physician - and human being - I've run into. Just wish I knew where he went when he left Ohio.)

Advice #3 - You're gonna have to do your own research. Sorry, there's no way around it. You know your child better than anybody else and you'll have to learn the vocabulary, symptomology, diagnostic criteria, disability law, education law, all sorts of things. You are your child's best (and, truth be told, only) advocate. Long before he or she starts school, learn all you can about special ed in your state if you feel it may be necessary. Even if not, an individualized educational plan may be necessary for the medical and physical management of seizures if and when they occur at school. If for no other reason than to stop them from calling the paramedics all the time. The public library is a great place for epilepsy research along with the internet and the Epilepsy Foundation. Your husband and family can be major supports, but the main responsibility for you child and your child's advocacy still rests with you.

Advice #4 - Try to avoid calling the squad for a grand mal convulsion. They are rarely trained for convulsions and often handle them wrong, and have been known to do more harm than good. If the kid has stopped breathing, it's because his diaphragm is locked up for the moment, maybe throat too. EMTs attempting to push a tube down a locked airway could create a real disaster. Don't panic - breathing will resume as soon as the muscles relax. Move things out of the way so she doesn't bang into things, time the seizure if you think of it, and wait patiently for it to be over.

Advice #5- find your local chapter of the Epilepsy Foundation. www.efa.org I think is the main site. They are a wonderful source of assistance, support, knowledge, research, summer camps, groups, family education and support, just anything and everything. Plus, they actually *believe* you!

Advice #6- Many states have county boards of health that have specialized department or bureau for handicapped children that pay or help to pay for medications. Private physicians often don't know about it, but children's hospitals usually do. Don't be afraid of the word "handicapped" - it will open doors for you.

Feel free to email me privately or on this board, yell at me, disagree, complain, ask any question, give advice. There are lots of other boards out there, many of which I've forgotten but would be happy to find for you. I may be able to hunt down resources for you as well, just let me know. At one time, my expertise was as a special ed parent advocate, but I'll try to stay off that soap box.

Hang in there, ladies. How? Baby steps. One breath at a time.

-Chris
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Old 08-05-2002, 06:52 PM
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seizures

Chris
Thanks I can breathe alittle better thanks for the facts
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Old 10-01-2002, 10:06 AM
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i know how you feel

hello i am a 21 year old single mom of a very special little boy, he is 18 months old and suffers from severe brain damage. I just thought there was a few things i should tell you after reading your story.First is this keep fighting untill you get an answer that you feel comfortable with, never give up, and when your child goes into a seizure go to a hospital even though doctors say seizures are usually not harmfull i do not want anyone to go through the same things i did. MY son was 15 months old, normal healthy smart and happy little boy, untill june 18/02 he went into a seizure, stopped breathing 4 times into hospital and was in the seizure for 2 and 1/2 hours, the doctors overdosed him on purpose and had to stop his breathing, he was intubated and was in a coma for 5 days, he know suffers severs brain damage has lost all use of his arms and legs, has no speech and little understanding, he eats through an ng tube in his nose but still has the sweetest smile. The doctors have no explanation for his seizures he has had small ones since. I was wondering if your doctors have ever tested him for MCAD defeciency ( medium-chain acly-coa dehydrogenase deficiency ) my son is going to be tested soon it is a genetic disorder that can cause seizures it is very rare i have been told so not many doctors test for it. I hope you get a answer soon:p feel free to email me at [email protected] and tell me if you find out any information maybe we could help eachother. thanks
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Old 11-05-2002, 12:17 PM
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Support

Thanks for all the advice, especially from Chris. My son was a very healthy child, normal 8yr old until this year. In Feb. he had a Grand Mal seizure and then again in April. He's been on med's since the last one and thank God he hasn't had another. It really confuses me how the brain works....at first I wanted a definite answer why this was happening to my child, but the specialtist we took him to gave us all this talk that got me even more confused. I don't like the idea of the med's for two years(if seizure free), only because I don't know what it's doing to him, but I don't like the idea of a seizure doing more damage. Debbie
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Old 11-06-2002, 02:44 PM
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Debbie -

What the meds are doing to him depends on what it/they are. Dilantin is commonly used for grand mal control - two years on that won't hurt him and doesn't impair consciousness or cognitive abilities as far as I know. Depakote/kene and tegregol are also pretty benign. Some of the newer stuff, gabapentin, neurontin, etc. are even better. Zarontin is also fine, but could make a zombie out of him at too high dosage.

If he's on phenobarbitol, get another doctor.

If you want to tell me what med(s) he's on, I'll find out what's up with them.

Grand mals are awful scary if you're not used to them. But if he's had only two, they've been controlled since then, and he's not having any petit mals (absence, or staring type of seizures) or any small motor partial seizures, his prognosis is probably excellent for complete recovery. Two years is pretty standard therapy, then they taper off and see what happens. If he's still fine after six months or a year or so, you should be home free.

Childhood seizures with this kind of treatment and outcome are not as uncommon as you might think. It's more of a developmental hiccup than a disease or degenerative issue. The meds support his brain chemistry while it backs up a little and re-routes the proper electrical pathways on its own, then it can take over from there. The doctors tend to say the same thing using much bigger words.

As you've read here, certainly not every case turns out as well as I hope yours will. But there are so many different forms of epilepsy and so many different outcomes, that it's a specialty all by itself.

- Chris
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Old 11-06-2002, 07:00 PM
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Seizures

Hi Chris. He's on a new med called Trileptal (I know I have the spelling wrong) He takes two pills in the morning and two in the evening, for a total of 600mg. It just bothers me because it's a hard enough age and I don't know if it's the med's or the age. His attitude has changed over this year and the dr. says it has nothing to do with the meds. As you can see I'm not too trusting with drs. Debbie
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