Support from Any Mom Who Has Experienced a Child with Recurrent Febrile Seizures

P.-- This just happend to my daughter last week. The dr. said that it can be normal with high feavers and that it was nothing to worry about that it can be normal for some kids. She said that on the onset of the feaver to give the dose of tylonol and motrin. And that if it continued to look inot it but it stoped both times when her feaver came down. I asked a friend of mine who is a P.A. who works at Detroit Childrens and she said the same thing. That most of the time as long as the child does not have any other health problems they grow out of them. This is just what I was told. I hope they are right! But if it keeps happending I would push for answers. Take Care, M.

I am a person who experienced febrile seizures as a child that later developed into full-blown epilepsy with no discernible cause (no birth defects, injurys, illnesses). I feel your pain and wish I had an answer for you. Contact the Michigan Epilepsy Foundation as they have many, many resources for famiies of those with seizure disorders, not just epilepsy. Best of luck to you and your family.

Sending you many many hugs, febrile seizures are so scary. My daughter has had about one a year - 4 total, had the same neurologic tests and is not epileptic either. Hers are grand mal, too and just unbelievably scary. Now that she's almost 4 it seems like she has a bit higher tolerance for fevers and has had some very high fevers with no seizures. So I'm praying that she's is close to outgrowing the problem. Her doctor was very upset when she had one in his office last year, and pressures me to give her the seizure meds, but I think it's premature because of the side effects and the fact that she hasn't had more than the 4. Her neurologist helps us keep calm about it. We just watch her carefully, cold and flu season is nervewracking! If I think her cheeks are flushed and she might be warm I give her the Motrin. We do the Motrin/Tylenol mix for fevers, too, it's the only way to get hers down.

Has your daughter ever been checked for urinary tract infections? That was the cause of most of my daughter's seizures, because there's no symptoms until it's a bad infection. After the first one had moved to her kidneys and caused two seizures in one month, I started having her urine tested every time she had a fever with no other symptoms. We caught two that way before they got bad. Once I got her potty trained she stopped having UTI's.

One thing a nurse told me in the ER after her first one and I think really works (my doctor scoffs), is as soon as I realize she has a fever, I strip her down and press her to my skin. It draws the heat out. It works fast, once I got so hot so suddenly that I threw up, but she cooled down and didn't have a seizure. I feel like it gives the Motrin time to work esp if we wake up in the night and she's feverish. We also do the lukewarm baths, which help. I'm a big supporter of probiotics, too. I think this has helped raise my kids immune systems.

Please email me if you want to talk, no one can understand how frightening it is to see your child have a seizure and living in fear of the next one!

My boys haven't had them but I had them as a child (3 in 3 months at 18 months) and was put on medication for them until I was 5. I never had another seizure, never developed epilepsy, and never had any effects from them or the drugs.

Just thought you'd like to hear that.

All four of my children had febrile seizures, but the oldest three were only a one time occurrence (don't know why, it just was). The youngest had her first seizure at less than a year old. The second one (what they used to call grand mal) lasted more than 12 minutes and was when she was almost two years old. She had two more after that. I wish I could tell you something concrete, but with seizures...I've learned there are no "concretes". She had her fifth seizure this past December, a month after she turned five. Unfortunately, this one was unprovoked, so we ended up at the ER, then at the Pediatric Neurologist. Now, they have diagnosed her with absence epilepsy. So, my situation sounds much differen than yours, but I wanted to let you know that I understand your frustration. My family Dr. never seemed to take me seriously. However, since her diagnosis, I've been reading a book the neuro gave me and it has helped me immensely. There's just so much they still don't know about seizure disorders and how the brain works, etc. She is currently on one anti-seizure medicine, but is still having breakthrough seizures. It's a whole new world out here in seizure land. You will find, though, that if you post in enough places having to do with it, someone will be in your same situation. If you ever need to ask questions, you can send me a note by clicking on my name. I am more than happy to try to help. I completely understand the uncertainty and fear you are talking about. Sorry I couldn't be more "specific" help.

My heart feels for you and your family in dealing with this issue. Try to find a reflexologist near you. I am one and live in Allegan. The reflexologist can show you the points on her thumbs and toes to possibly assist in calming the fever.

If you massage the pads of the thumbs or great toes (I'd only massage circling left for 7-10 circles and then right for 7-10 circles) every 10-15 minutes until the fever subsides. No guarantees but it could help and at the very least, be very soothing. Perhaps your Naturalpath can recommend someone.

Best of luck.

All of my children experienced febrile seizures when they were young. They were easy to anticipate because I could feel them start to get "ticky" as their fever spiked. With my first I was terrified and took him to the ER when we were out of town and his got sick. The ER doc sat down with me an very frankly asked me what my concerns were. When I told him I was afraid of the febrile seizures he told me there is no danger from a true febrile seizure and there truly is no danger from a fever in a child that is less than 105. He told me I could be causing the seizures by making the fever go down quickly. He told me the fever is the body's reaction to a viral or bacterial invasion. The bacteria especially can only live in a very specific temperature range and that the body kills the bacteria by making it's temperature inhospitable. When we give meds to bring a fever down we are actually prolonging the illness our child has by short circuiting the body's means of fighting the illness. Also, true febrile seizures don't occur because the temp is too high, they occur because it is changing more rapidly than the central nervous system can deal with. So when we rapidly bring a temp down with meds or other methods we might actually be causing the seizures. Since this discussion with the very cool ER doc I have had discussions about it with my childrens' pediatricians and family docs who are in agreement and say they only recommend treating temps because it's what people expect. They want to see an improvement immediately and think a Dr. isn't doing his job if he/she can't make a kid feel better right away. Also since them I've gone back to school and become a Registered Nurse, I've been working as a nurse for 10 years now and all the advice that ER doc gave me 13 years ago has been proven true to me in my schooling and in my experience with the next 2 children I had. Hope this is some consolation. It might be worth having a frank discussion with your doctor about the etiology of fevers: why we get them, how they work, and when it's truly necessary to treat them. Good luck.

P.,

I am sorry to hear that you are not satisfied with your current results with your current medical doctors. Have you considered looking into chiropractic to co-manage your daughter’s care.

Chiropractors are not neck and back pain doctors, we are nervous system doctors. Our bodies are self healing and self organizing. The central nervous system (our brain and spinal cord) and the peripheral nervous system (the nerves that branch out of the spinal cord and go to the cells, tissues, and organs in our bodies) control how our bodies heal and organize itself. If there is any interference in the communication of our nervous system with the body, then there will either be increased activity or decreased activity, either way the body is no longer functioning at it’s highest potential. Chiropractors call this interference a subluxation (sub-lux-a-tion). This interference/subluxation is caused by three major life stresses- Physical stress (trauma, repetitive motions, poor posture); Biochemical stress (preservatives in food, drugs- prescription, alcohol, smoking); and Mental or Emotional stress.

A fever is the body’s most powerful, natural, defense response against foreign agents or infections. When a fever is lowered, the body’s defense mechanism is interfered with and this allows the disease to linger longer and possibly develop complications. Antibiotics, other prescription drugs and vaccinations may actually elevate the body’s temperature. The fact that your daughter has a seizure is her body’s first sign of a fever. By allowing her nervous system to function without interference/subluxation, this allows the fever to do that in which it was intended to do more efficiently, there by shortening the frequency and duration of the episodes. Fevers weaken the offending agents so that the body’s white blood cells can come in, do their job, and render true immunity to the individual. Since there is a direct connection between the nervous system and the immune system, the single most valuable approach to boasting an individual’s ability to express normal physiology is to remove the neurological interference. Secondary support includes optimal nutrition and liquids, rest and relaxation, and a assessment and examination of the stressors that may have contributed to the weakening of the individual so as to prevent it from happening again. This will allow a higher state of human expression.

I am a Chiropractor at Khalil Family Chiropractic Wellness and Intervention in Eastpointe, MI. Please feel free to contact our office for more information. Our number is ###-###-####, our email is www.khalilwellness.com

Yours in finding new ways for a better tomorrow

Dr B.

My son experienced his first after his 1st birthday which meant to a lot of doctors and professionals that the likelihood of recurrence was slim... But I watch his temp like a hawk, even the dropping of it.
My husband was a recurrent febrile seizure child and when he was an infant there was nothing but Tylenol and he was living in Germany, which made it very difficult for my MIL. He is the son of a man who had recurrent febrile seizures, both of them suffered the way your daughter has. All that I can tell you is that neither were/are epileptic, they out grew them when they turned 5 and my MIL carried thermometers and Tylenol in her purse until they occurred no longer. Having gone through them with my son I can feel your pain, anxiety, fear and frustration. There isn't a whole lot of support nor knowledge even in the medical world.
I was told to monitor his temperature, but not from sickness, from overheating and being underwarm... This new Michigan weather for us (we're form WA) has made it all very scarey. Even on a cold night he sleeps almost naked. He runs at a higher temperature than the rest of my kids and I have to make sure he doesn't get hot under heater in the car or in the house. I have to moderate for him so that he doesn't spike. He has not had very many colds in his 21 months and he has many times where I have given him Tylenol/Motrin to keep his temp down. I hope this lends som support even if it doesn't help. Keep in touch.

Hi P. C,

I would love to see you have your DD checked by a pediatric chiropractor in conjuction with the ND. Many times from birth children can have a disruption in the nerve signals from their brain to their body. How was your labor? Did they have to use any special intervention such as forceps, vacume extraction or c- section? Even a "natural labor" can have a profound effect. Has your DD had any falls or trauma in the last 30 months? If so you may see a change in her bodys response to fever. For more information log on to www.mcpakids.org there are links to research and you can find a pediatric chiropractor in your area. I know how scary it can be to see a child in a seizure state and the fear of the next one. I wish you both all the best in your search for a solution.

I can't help you out with any information about this, but I would like to let you and your family know, my family is praying for all of you!

I am in the same exact situation. Although this article is from 2 years ago. My son is 22 months, he's had 5 febrile seizures in 10 month and 9 fevers. He had tubes put in his ears and had a year of constant medicine, mostly tylenol and motrin but also antibiotics. 8 weeks ago we started seeing a chiropractor, went completely organic and started re building his immune system along with discontinuing any medications. He was 7 weeks fever-free, the longest span in a year. However 2 days into the fever he did have a febrile seizure. We had our first visit to the neurologist, he did not see any concern for any neurological testing, and said he falls into the normal category of simple febrile seizures. I understand the seizures are a natural way of bringing the temp down, but like your daughter, my son rarely ever has a slow low grade fever. It's quick and always high. 103-104.8. Any advice? Experience? Did your daughter eventually grow out of this? It never gets easier. My husband and I make ourselves sick trying to figure out why our son has chronic fevers. It's been difficult to get someone in the medical field to help is figure this out. Everyone just hands out medicine to cover it up. Any info I'd even sharing experiences would help. We do not know of anyone who has gone thru this before.

My son had several febrile seizures when he was young. While not as many as your child, he did have several and they were whole body. The tylenol/motrin every 3 hours worked well for him (motrin, 3 hr later tylenol, 3 hrs later motrin - alternating, but must be careful) but again the trick was to catch the fever before it spiked. For years if he felt the slightest bit warm he got medicine (still hates to take it to this day!).
The good news is he did grow out of them (so there is light at the end of the tunnel), but it wasn't until he was 5 years old did we feel pretty in the clear with them. I made note on his enrollment forms in preschool and even kindergarten that he was prone to these seizures and should be given motrin or tylenol immediately. Their immune systems just need to 'grow up' is what I was told.
Cold compresses helped when we'd notice a fever with him (because it takes a few minutes for the medicine to help). Just suggestions I'm sure you've tried.
Good luck - they're very scary and if people have not experienced them with their own child it's hard for them to understand. Not a lot of advice - I'm sorry, but just someone who understands.