Seeking Moms Who Have Children on Medication from Having Seizures

I've had seizures since i was 15 yr old. I also hid my meds from my mom and pretended to take them when i didnt. It is very dangerous to do this. You and you daughter need to go check out www.epilepsy.org it is a wonderful site that can help you both in coping and dealing with the meds issue. She needs to understand she can not only do damage to her brain but her kidneys liver and other organs by not taking the medicine. As far as the ex go to a lawyer and see what can be done he is putting your daughter in danger. Hope it all works out!

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I had a husband who thought he knew more than any doctor.... my son's been to the hospital several times due to progressive pneumonia bc his dad refused to believe that he had allergies and asthma as diagnosed by a well-known pediatric allergist, refused to medicate him as directed, refused to stop smoking around him and refused to take him to the doctor when he had extended visitation because he thought he was either faking or it was a cold he would get over. YOU are obliged to your daughter to be her advocate, especially in regard to health issues, whether your husband agrees or not. Listen to the doctor. He went to medical school. Your husband probably didn't. The doctor has more knowledge, wisdom, experience, etc. Listen. Not to mention it's considered abusive to with hold necessary medication. Especially with something as serious as seizures (my sister has them so I'm aware of risks as well as temporary and permanent complications). If your child were injured due to seizing and you were found to be with holding medication, you could personally be held liable in a court of law.

btw I have a child who has been swallowing 500mg pills since he was 6. So your daughter CAN. If she is refusing to it is a matter of discipline that needs to be addressed by you, her mother.

Do what's best for your child. Don't let your husband's arrogance, financial pressures, or daughter's dislike of medication ruin her health.

Sorry so harsh, but it's something I feel strongly on....
Good luck!

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Unfortunately if there is an abnormal EEG then there is a definite need for the medication. An "abnormal" EEG means there are misfires going off in the brain, either in one spot or multiple. These misfires are seizures.

The types of seizures your daughter has could be more than one type, which makes it more difficult for the parents to monitor. Even though the ones you saw may have been rather noticable she could be having absence seizures which cause a child to just stare off in space anywhere from a few seconds to 30, averaging 10 seconds.

The point is, neurologists make it a rule to never start meds unless there are at least 2 seizures and/or the EEG is abnormal.

Your child needs to realize the importance of the medication in order for her to have a healthy life. That starts with the parents supporting the doctor's regimine. The seizure medication is vital to her brain's function right now and for the future. If left untreated they can cause permanent brain damage.

My daughter has seizure-induced Autism and major comprehension problems because it was difficult to find the right seizure medication that would work for her. The seizures began damaging her brain in different areas. A major part in the damage is the first neurologist would not adjust her meds correctly and she still had seizures. When we found another neuro things began looking up.

My point is this: If she had 2 seizures and the EEG was normal, then I could see why you may not want to medicate. But the EEG was not normal and EEG's don't lie. There IS a problem and it needs addressed. I know meds are the last thing you want and no one wants to accept the fact that their child has a seizure disorder. But lay aside your feelings and look at this from a medical perspective. For the safety of your child and her future follow the doctor's instructions. God Bless~

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When my 15 year old had a seizure at age 9, the information I read said that there is an increase of seizures at this age due to the childrens' body changes due to puberty. My son is still on a low dosage medication and just recently had his second seizure due to throwing up all night (a virus) and, thus, had no medicine in his body as well as his system tolerance being lowered. (I wondered a number of times about taking him off his medicine but now am glad that we did not). I read that the need to stop seizures is because each time there is a seizure, there is damage (to the brain). That is the main reason I have kept my son on his medicine. He is on a low dosage of a mild medication that has been stringently tested over the years. Also, I have a friend who had a daughter that had a seizure at the end of third grade. After two years of medication, her EEG looked good and they were able to take her off of the medicine. As far as not swallowing pills, I have used a "pill crusher" in the past when my children had trouble with swallowing pills....putting the crushed pill in a spoon with a little water is a good way to make sure it is taken. Best of luck to you. P.

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There is a chance that your daughter could be having a reaction to chemicals in her foods or environment. Check out www.feingold.org. Feingold is a 30yr old non-profit organization whose purpose is to inform the public about petroleum-based ingredients in our food supply. These harmful additives cause ADD, ADHD, OCD and many other behavioral and physical side effects. Feingold is a leading authority on nutrition and chemicals in our invironment and has helped thousands of familiesover the years. It is well worth the time. Best wishes.

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I was 8 years old when the doctor put me on phenobarbitol after two seizures. Many years later, I'm still on it. While I was growing up, the neurologist said I should stay on as long as my life was stressful (while in school, into college, etc.). Soon after my most recent EEG I was diagnosed with a chronic, potentially serious, illness so the doctor said I should stay on the phenobarbitol. And so it goes.

The medicine hasn't changed my life much. I've married, had children, finished grad school. When I was pregnant, the OB checked my pheno levels and raised my dosage slightly. It had no effect on my children. My biggest problem is that I'm generally groggy in the morning, and I sleep very, very soundly. And, because it's a controlled substance, I can get only a one-month supply at a time, which is a problem when I travel.

If this medicine (whether pheno or something else) is all that stands between your daughter and her seizures, she should go ahead and take it. If there are other options, pursue them. I can say, though, that for me the medicine has been merely a minor inconvenience. (I don't like the idea of being on it throughout my life, but it's better than seizures.)

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Seizures are serious. Is her father a physician? Because if he's not, he doesn't know what he's talking about. Going on and off seizure medications can be very dangerous. I suggest talking to the neurologist about the situation as soon as you can.

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My 5 yr. old, who has tuberous sclerosis, has been on seizure meds since he was 7 months old. He had 3 seizures in one night that we believe were prompted by a high fever. He had several staring seizures when he was 15 months and nothing since. His neurologist suggests keeping him on the meds for now and I agree with him. I can't answer as to whether your daughter needs meds but I would suggest either taking them as prescribed or discussing stopping them with her doctor. I don't know which prescription she is on but taking them sporadically can be dangerous. We are in the process of switching meds and we had to start the new one by slowly increasing the dosage until it was what he prescribed. We are now decreasing the old one a teaspoon per month. I would discuss this with her doctor.

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Hi,

I use to have seizures when I was about 15 years old. They started slowly, one seizure a year, then two. When I reached 21, or so, I was having 7 or 8 a day. They finally xrayed my head and found hydtocephalus. They think I got it as an infant, after meningitus, but really do not know.

I don't know what to tell you, except once I started taking the medication, my seizures stopped completely, but I felt like a turtle (everything in slow motion) and I hated taking it. I later had a shunt put in my head to relieve the pressure and I havn't had any seizures or medication since. I am now 51.

You may want to look into diet for controlling seizures. Low carb diets have been shown to stop seizures without medication. The child stays on the diet for two or three years. You can look it up on the internet. Low carb diet to control seizures, should pull it up.

If she has to go on medication, just let me say that it was a lot less embarrasing for me to take my medication, instead of having a seizure. Mine also progressed into grand mal seizures which were awful.

Good luck to your little girl.

K.

Your pediatrician should have sent you to a specialist after an abnormal EEG. I would get some information about what the 'abnormality' was and then ask the pediatrician for referral to a pediatric neurologist for a second opinion and treatment plan. Sorry, but I cannot think of any good advice about dealing with her father. I would just be seeing red if I were in your shoes......
Best wishes and I will be praying for her.
-R. Nettles

hello my son has cerbal palsy with seizure disorder and he is on 2 meds for it, without the meds he would have seizures . since she had 2 with abnormal eeg she needs the meds. seizures can do damage without meds. and who knows she might out grow the seizures. my sister didnt give to her son long enough and he now has anger issues.

You have gotten a lot of great advise from other moms on here, so I will be brief. I just want to stress that there are A LOT of seizure medications out there. If this medication your daughter is taking is interfearing with her life somehow, there are others she can try. Just like an anti-depressant, you have several options and can find what is right for her.

The other point I want to make is the danger of what a seizure can do if your daughter does NOT take her medication - or receive some sort of therapy to help with seizure control (there are alternative treatments out there as well). I don't want to scare you, I just want you to know that permanent damage can be done if she was to have a seizure that isn't controlled after a specific amount of time. Talk to her doctor - get informed - and tell your ex-husband that you're not willing to put your daughters life in HIS hands. Doctors don't know everything - but they know a heck of alot more that your husband.

Hi J.,

I know that I am a few days late. I am currently struggling with seizure issues for my 4 year old daughter and don't know that I can be much help except to say that my daughter is on topomax sprinkle caps (she can't swallow a pill yet)that I put in applesauce. It would be very hard for her to not take it if you gave it to her directly. Maybe her med comes in a sprinkle cap too. You would still have to have your husbands cooperation when she was with him. Even though my husband and I are generally in agreement over treating her seizures we still have conflict sometimes over the speed with which we should titrate the meds (the doctor has given us a range depending on side effects). I know too well how stressful this can be. Feel free to contact me directly if you want to hash things out. Best of luck!

Hi my name is S. I am a mom of a 10 year old boy and an 8 year old girl. When I was 10 I found out I had epilepsy I have been on medication for it every since. I have a normal life just like anyone else and 2 wonderful kids with no problems. I have a good job and would never stop my medication. When the medication is stopped I do have siezures. I have not had one in over 16 years. I think you should give her the med. so she can have the life she wants. When I was about 20 years old yhe Doctor took me off my Med. and I didnt have a siezure for 3 months. I had a siezure in bed that night luckly my Ex husband was there and the Dr put me back on the Med. I have taken them every since. The med. that I take is Depokote. You may want to take what ever the Dr has presribed since it is working. What I take you can get your DR to tell you the side effects I never had any problems with it. It can cause liver damage but am 39 and never had that problem. I get blood work done every 6 months. I hope this will help you and your daughter.

I have had seizures most of my life; and when I was young was put on medication that I could not handle, what made me painless made me brainless it was never adjusted right I felt like a zombie in very slow motion. I was gradualy taken off the medicine and learned that our freestone water had no minerals in it; now I take 500 m a day of magniesum that pretty well takes care of me getting over tired (I am not aware that it has any side effects for me) but I do have another problem that I have to be very alert and cautious about, another cause for the seizures is when anyone pats me on the back I can fall to the floor and this does happen ocasionally; usually there is someone that can help me lay down in the floor where ever I am and it will wear off in a while. I have been to various doctors that say they have not heard of that problem before; I also went through Vanderbilt
I am sure there are more available medicines now that may not have side effects but I prefer to not experiment with them; I had far rather think clearly between seizures as to not have them and the effects of the medicine cause me to not be able to function properly all the time. I have learned to live with them. I certainly am expressing my own opinion and not advising anyone to choose the same route.

If you do not think there are bad side effects I would probably give the medicine to my child but I would really be observant as to what effect it would have on the child; I would also try to observe to see what causes the seizures.

Have any of you known of any cases like mine? I would appreciate hearing about it if you have.

E. H.

This is tricky, because a seizure disorder is nothing to take lightly(as I am sure you are not), but at the same time, the rush to medicate can sometimes be the doctors "playing it safe". What medication was she prescribed? My daughter is 2 and a half, and among some other problems she has a tendancy towards febrile seizures, but the docs think there is more to it than that. Her EEG came back normal, but she did have an abnormal MRI. The nuerologist wanted to put her on Keppra, even though her seizures came only every 3-6 months, always with fever, and never lasting longer than 4 minutes. We declined, after reading about the drug, and deciding(along with her pediatrician), that her condition was not severe enough at this time to warrant the risk of daily meds. Of course, we will keep a close eye on her, and stay in communication with the doctor about it.
I'd say either give the meds to her every day, or not at all. But either way, let the doctor know what you are doing. If she takes them only occasionally, they won't work as they are intended, and therefore you are getting the risks of the meds without the benefits.
After sending this, I read about the duplicity of your ex, and agree that you may need to take legal action. I assumed you both had hesitations about the meds, but it sounds like you are okay with it, and your ex is on dangerous ground by advising your daughter to pretend to take them, when in fact she is not.
Has your daughter been diagnosed with anything? I know how scary seizures are, so my heart is with you in this. Feel free to message me anytime.
-K.