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!

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.

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!

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~

Seizure activity is nothing to fool around with, as O2 is mommentarily not getting circulated during seizures. Therefore the danger is twofold:
1. immediate danger of physical injury during the seizure &
2. long term brain damage from repeated apneac periods during seizures.
While many times young children do out grow their need for seizure medications, and every seizure medication does also have side effects, the pros and cons of taking vs reducing or eliminating the meds, need to be weighed carefully. If you and your husband disagree with your daughters Drs advice, by all means seek a 2nd or even 3rd opinion, but do be aware of the possible consequences of either decision. At 10 yo, your daughter is old enough to be an active participant in this decision. As you have already discovered, if she is desiding she doesn't want to take the meds, she will find a way to not take them, in spite of your best efforts. If you start forcing her, esp. if dad is not in agreement, it could become a major issue between you that you should try to avoid, if at all possible.
My advise is to ask for a family consult, with either her doc, or a new one. Be sure the doc knows of her not taking her pills all the time, and of your husbands thoughts that the meds may not be needed. Involve the girl in the discussion. Be sure she knows and understands the consequences of not taking them, and the possible side effects of taking them. Although you are still responsible for her well being, at 10, if she is of average mentality, she is old enough to understand that her health is ultimately still your responsibility. She can understand that if she choses to take chances with her health and continue to not take her pills and gets hurt, you will have to pay the bills to make her better, when she is old enough to be fully responsible for her care, then and only then she can make the decisions.
On the other hand, showing her you respect her wishes by trying to work out a plan, with the Dr. for gradually weaning her from the meds or at least lowering the dose, will gain her and your husbands cooperation. Good luck!
BTW, I'm not trying to dx, or contradict your drs advise, but just so you know, there is a family run, herbal company, called Mountain Meadow Herbals that makes a formula that is not to be taken instead of seizure meds, but if the person gets an "aura" before the sz, they can take a dropperful of this herbal combination and will help ease the severity of the sz. Of course this only works if the person is aware that a sz is coming on and can take it quickly. It can be taken whether or not the person is on regular sz meds. Hope this helps.

Dear J.,

Please forgive me, but I'm going to be overly blunt. I encourage you to show this to your ex-husband:

Seizure disorders, diabetes, asthma, hemophilia, and a wide variety of other VERY REAL life-threatening medical concerns must be treated and respected exactly as the doctors ordered. The treatments can't be compromised. Ignoring or denying the existence of these illnesses can be deadly.
About three years ago, I attended the funeral of the previously vibrant 10 year/old son of a co-worker. Up until then, he had not had a seizure for a couple of years and was no longer being given his seizure medications.
The final and fatal seizure occurred in his sleep. I don't know if the actual cause of death was from bouncing his head against the wall next to his bed or if he died from aspirating food and/or saliva into his lungs. I believe that it was because of his positioning that his parents knew there had been a seizure when they found his body the next morning. It was one of the saddest (and largest) funerals that I ever attended

The aunt of an old friend of mine worked at a university library. Several years ago, she was walking around the library sidewalk catching some sun and exercise during her lunch break. The driver of a car coming slowly down the road had a seizure and rolled the car up onto the sidewalk killing my friend's aunt. I don't know if the driver had a known history of seizures or not.

You may be able to have a judge reword the visitation agreement to make it unlawful for your ex-husband to dissuade your daughter from taking her medications. I suggest letting your legal advisors manage this with him, though.
Good luck!

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.)

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.

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.

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.

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.

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.
-Rae Anne Nettles

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.

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.

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.

I have a friend who's child is having unexplained seizures. She is really watching her MSG intake. She was surprised to find how ubiquitous it is in food and beverage. It is something to consider as well as a food diary.
Good luck,

"My interest in ADD and ADHD arose from my studies on the process of
excitotoxicity. Excitotoxicity is a neurological phenomenon associated
with certain amino acids that produce a delayed degeneration of
particular neurons when exposure occurs outside the cell. This process
has been proposed as the central event in many neurological disorders,
including strokes, head injury, migraines, hypoglycemia,
ischemia/hypoxia as well as causing toxicity directly.
We know that several of these excitotoxins play a vital role in brain
development, primarily glutamate and aspartate. It must be appreciated
that glutamate is the most abundant neurotransmitter in the brain. But,
elaborate steps are taken to assure that extracellular concentrations of
this substance remain only for a very short time ( milliseconds) and in
very low concentrations.

During brain development, there are wide physiological fluctuation in
glutamate brain levels. This series of events plays a vital role in
brain development. Too much or too little glutamate can result in
abnormal development of the brain. For example, high concentration of
glutamate in utero can cause neuron death in special brain areas and
even abnormal formation of brain pathways. That is, the brain is mis-
wired. This can result in anything from mild learning difficulties to
severe neuroendocrine, behavioral and learning deficits. There is some
evidence, for example, that abnormally low concentrations of glutamate
at critical times can result in schizophrenia. Some neuroscientist are
suggesting that such conditions as ADD, ADHD and autism may be cause by
such glutamate abnormalities.

Clinically, we know that many such children will significantly improve
when taken off foods containing excitotoxins, such as MSG ( and its many
disguised forms) and aspartame. It appears that several
neurotransmitters are abnormally functioning in ADD, such as dopamine,
norepinephrine, serotonin, histamine, and acetylcholine.
Almost a decade ago, it was found that feeding pregnant animals MSG
produced a form of learning difficulty similar to ADD. The offspring had
normal simple learning but showed profound defects in complex learning.
In a followup study of these offspring, it was found that they had an
80% reduction in frontal lobe acetylcholine levels and a 50% reduction
in norepinephrine. The latter plays a vital role in attention and
ability to focus. We also know that dopamine plays a vital role in
performance and memory. Serotonin deficiency appears to play a vital
role in violent and antisocial behavior.

It is also of interest that a significant number of these children are
reactive hypoglycemics. We know that hypoglycemia not only precipitates
the release of glutamate in the brain, but that magnifies the toxic
effect of all excitotoxins. Unfortunately, many food have excitotoxins
added to them as taste enhancers.

The approach to this disorder requires first, the removal of all food
borne excitotoxins. This must be done as early as possible. The longer
and more intense the exposure the more likely permanent damage will
develop. Manipulating the various neurotransmitters by nutritional means
is the next step. This involves several avenues of approach. Each step
requires patience. Other methods, such as biofeedback, can be helpful
during this period. Remember, biofeedback can alter brain chemistry. We
still have much to learn about this disorder. You should also be aware
that every child is different.
Treatment has to be tailored to each individual case.
http://www.holisticmed.com/add/blaylock.html

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!

I have a 25 yr old son, who began having seizures at 3 1/2 yrs old. So he has been on a variety of medication over the years, but has been seizure free for over 12 years. You might ask your daughter how the medication makes her feel. Seizure medications have all sorts of side effects. Dilantin can cause early hair growth on their bodies. One of my son's medication, Tegretol, is very sensitive when he is ill. His level will increase when he has a mild virus with a fever. He appears drunk and unstable (so I skip a dose then resume his regular dosage). Does she recognize the seizure before it begins? I remember my son, who is physically and mentally disabled, stopping and bending over before it began. As my son got older his seizures changed, the first ones were grand mau and his last one (as a 13 yr old) was focal only. You should talk to the neurologist or his nurse about your child not swallowing the medication. The drug levels will not be accurate (low) and the doctor will adjust her medication according to those levels. You could explain the possibility of injury during a seizure. I have a friend who has broken his collar bone twice from falling during a seizure. He must take medication to drive now. It can be very dangerous to child or others.

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.

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.

my son has had seasures since infantsy he takes 300 mg of tegeratol twice a day.in order for the medication to work their body must keep a constant level or she could start having seasures again if my sons level gets to 6 he has breakthrew seasures.his nureologist said he is one that will always need medication.some people do outgrow seasures my daughter did she was on phenabarbatol and after two years of medication she was weaned off she has been seasure free for 18 years.dont wean her off without the dr doing it its to dangerious.good luck!