My 4 yr old son had his second seizure yesterday. His first was in April, and after a normal EEG, they thought it was isolated and he'd never have one again.
Yesterday, after swimming lessons, we were gathering our towels and I heard a thud behind me. He was on the ground seizing. I hadn't seen the first one (he was behind me in his car seat for that one) and it really freaked me out to see him like that.
I thought maybe he'd slipped on the wet concrete and hit his head, and that's why he was seizing. The lifeguards called 911 and helped me hold him until it was over.
I feel a little guilty for thinking this, but along with the worry about my son, I was worried about the bill. His last seizure, including ambulance and ER, was about $5000 and wiped out our health savings account.
He had a CT scan and it's normal, which is good, but they have no explanation for his seizures. The seizure was not caused by the fall, but the other way around. He seized, which caused him to fall. He has to have another EEG this week, and an appointment with a pediatric neurologist.
So here are my questions, because I likely won't get to the neurologist to ask these before next week:
1) Now that he's had two seizures, and I know what they look like, I don't think I have to take him to the ER if he has another one. Is that right?
2) This may sound petty, but it's my birthday this weekend and we desperately need to go out on a date. but I'm worried about leaving him. Not because I'm worried about him so much. I know that seizures in and of themselves aren't really that dangerous, but I hate to freak out a babysitter. How do I handle babysitters when he could possibly have a seizure? Am I ever going to go out on a date again?
Any other advice you have is also appreciated.
My son had another EEG, a more extensive one this time, and we met with a pediatric neurologist (there are more than just one in the valley, now). He says he has no explanation for the seizures, which is good news, because if he had an explanation, it would be bad news. They have ruled out epilepsy.
My son is quite a bit ahead developmentally, and always has been, so that simplifies things a lot. He passed his neurological exam for weakness, balance, and coordination with flying colors.
He said that after his first seizure, he only had a 28% chance of having another. But he did, so now he has a 54% chance of having a third. If he has that third one, his chances for more will jump to ~90%. He said I do not need to take him to the ER again because he has been checked out thoroughly, unless a seizure lasts longer than 5 minutes. We're just to wait out the seizure and put him to bed. I am, however, to take him back in to the neurologist if he has another one, and they will start him on anti-seizure meds (because of the 90% chance of having more).
He also said that teenage babysitters are fine, as long as I think they're mature enough. I have contacted the mothers of older teen girls and they think their daughters could handle it. Personally, I was a very mature, responsible teenager, and I would have been nervous, but okay if I knew what to expect and what to do. I am good in a crisis--I keep a cool head until it's over, then I fall apart. We will not be calling the girl we had been using again, though. Her mom says she freaks out in a crisis.
The neurologist also said to not let this change our lives in any way. He said to go out for my birthday. Well, that's easier said than done because the only babysitter available is the one who freaks out in a crisis, so we'll postpone until next weekend.
I'm surprised so many of you trust chiropractors with something like seizures. I've been to chiropractors and have found them all to be hokey snake-oil salesmen who are after my money. Unproven techniques and grand claims of curing cancer and "pushing nutrients into nerves" doesn't sit well with me, and neither does wanting me to sign up to come 3 times a week for the next 3 months at $40 a pop. I'm sure there are some legit chiros out there, but I haven't met one yet.
I would be on a mission to find out what is going on. Birthdays and dates would be the LAST thing on my mind. I would not want to leave my child unattended or with someone else until they can be controlled. Have a date at home....put the kids to bed and have a candle lit dinner.
Rule of thumb with grand mals and the er is over 5 minutes or if they turn blue. My son had one and we took him to the er they held off on meds because he might not have another. A week later he did. Stay as calm as possible we didnt realize he could hear and feel us until after the second one. Went to a nuero and they put him on keppra he then went on to have 26 grand mals in 30 days because of the meds. Finally his doc switched him after the eeg. My sons trigger seems to be waking up. He always has them in the mornings and now he has these small ones just where he calls out before and his face will contract and his head may drop. Those last for a hour or two in the mornings.
My husband gave me the best words of advice during that bad month. There is nothing you can do to stop one from happening if its going to happen its going to happen. Staying tense all the time will do you no go so relax when he isnt having one and if he does you know what to do so do it.
Somehow you guys really need to get to the bottom of these seizures so that you can treat them properly. There are medications that control them so you don't have to worry about it.
As far as having a babysitter, you might want to consider an adult rather than a teenager. Seizures, as you know, can be very scary and intimidating. I would fear that a teenager may not be able to handle it emotionally unless they have prior experience with seizures. It is also important because they can be very dangerous if you are not with him when he has one and he falls down the stairs or hits his head, etc. So they can be dangerous.
Good luck to you, it really comes down to diagnosing why he has them and treating the symptom so he doesn't have them.
My son started having tonic clinic seizures at
1. He was placed on Keppra after his third seizure
within a week. He's still on it, and has had two
seizures since starting the medication.
Our pedi neuro has also given us a medication
called diastat to use rectally for any seizure lasting
longer than 3 minutes. It has helped us stop a few of
his seizures in the past - it takes a few minutes
to take effect. We've also received oral
Valium as well for him. We've been told that
if he seizes for longer than 5 minutes to call 912 or get him
to the hospital. We are very cautious around
water (pools/baths) with our son as they can drown
quickly. Our son takes private swim lessons
and for us swimming is not as enjoyable as for
other families as we must keep watch even in
shallow water. We use a nanny and they are
well informed and have a very specific what -if sheet
in case they witness a seizure. I'm so sorry that
your son had a second seizure. It's good that they found
nothing on his EEG and ct, hopefully he won't
have anymore or will grow out of it with or without
seizure meds.
My son is 8yrs old now and at the age of 2 started having seizures out of no where. He actually was paralyzed his entire right side, then the next one his left side but he would come out of it. The scariest thing I have ever had to deal with and he went to the ER each time. Went saw a neurologist and they said that they could not say why they started or are there but they would probably go away when he was 5-6. They also said it could be hereditary. WHich looking into the past my husbands mom's side has experienced this until the age of 6. Then they just stopped. Did the doctor put him on meds? Did they refer you to a specialist? There are ways to monitor them. I know you said one was in a carseat behind you and other at the pool but try to think if there was something similar at each one that could of "set one off" and you can prevent those situations.
Answers
1.) Personally I take my son anytime he has one to the ER/doctor because I want it documented and looked into. Maybe that time they could not see something but the next they might.
2.) When it comes to the sitter be honest, have the phone close by for her so she can call 911. I tell EVERYONE that takes care of my son about them so they are prepared and know how to handle the situation. I tell them to call 911 1st then call me. Even the school and I live down the street. I would rather be safe then sorry.
Hope this helps.
What about finding a babysitter that is older? Maybe one who is in the nursing program at BSU or some other local university - that way the person would have medical training?
In regards to taking him to the ER every time, I would want to know from a neurologist that he is fine and coming out on his own and that they agree no ER trip is needed unless he meets specific criteria. Good luck, and my hopes that it is something that you can fix, easily treat or he grows out of!
There is no concern going on a date. This is a time you really need the stress reliever. You don't need to go to the ER. You do need to find out what's causing them, though. Is it times when he gets really mad? My son seizes when he gets mad. Add that too a really long list of other issues! (Think $2700 in a trip to the pharmacy kind of issues.) I have not had a problem with babysitters as long as I tell them how to tell it's coming on, what to expect, and what to do if he does actually seize.
If it's caused by anger, what works for us is, very calmly and quietly, take him in our arms and gently ask him to calm down. The trick is catching it early enough. I wrap my arms around his with his down, and give him a gently but firm hug while I do this. I just hold him then until he can breathe normally again. Works about 99% of the time. Funny thing, though, it only works for me. I ask babysitters to just lay him down while calming him down so he doesn't hurt himself. Two days ago, he had one on the stairs and I couldn't get to him in time. It was interesting, with his body so stiff, he just gently glided down the stairs. No pain or injury at all. His are considered grand mal, although they are not severe. Interestingly enough, in my research, I came across something that said some kids find a seizure very quieting and comforting, and will make themselves go into a seizure. Seems that's my kid. :)
Hang in there! It's going to get better! Let me know if you're ever just needing to "chat" for encouragement. I can't babysit from this far away, but I'd love to help out in any way I can. P.S. I fit happens again, you might want him to be someplace where it wouldn't be a problem if he wets his pants. My little guy is also 4, and he does that sometimes as he comes back out of it (maybe 10-25% of the time).
I want to be really clear that this can be a serious medical condition and you should not take chances until you understand the situation more thoroughly. I would not leave your son with a teen babysitter under any circumstances, I would rush to the ER for every seizure and you should go to the National Epilepsy Foundation website www.epilepsyfoundation.org to find a local group to contact for more info, including recommendations for the best drs. Getting in touch with other parents with similar situations in your local area can be really helpful. We will all hope for the best and that he'll never have another, but first you need to do all the medical follow-up necessary. Good luck.
The first thing I would ask you is if your son has had any recent vaccinations. Our oldest daughter experienced a series of seizures after her one and only vaccination at age 2. It was one of the scariest things I ever had to deal with. We did all the traditional stuff in trying to figure it out, but finally went to a holistic doctor whose treatment focused on detoxifying her body. We followed the treatment faithfully for a year and she never had another seizure. (She's now 11.)
If there have been no recent vaccinations, at least you can rule that out. As for your birthday, I would celebrate at a later date.
HI S.,
First of all, breathe!~ Worrying is not helping you or him. I had seizures when I was little and my oldest had seizures. They are frightening! My daughter now tells me she remembers them and knowing they were happening.
First, you need to determine what is causing them. Are they febrile seizures? (caused by fever) Seizures have been linked to Gatorade. Far reach maybe, but things you need to know. Seizures can be caused by neurological toxins like Lysol, Clorox, etc... Chlorine in the pool??? Think through where he was and where he had been before he seized both times. EVERYTHING.
Some kids outgrow them. Some need to be on meds. I kept meds onhand but only used them when I sensed one coming on....believe it or not when you are paranoid and watching, you can really feel them coming. I don't wish that for you but I will say as his Mom you do have a gut. Trust those feelings. We opted for a time tested drug (phenabarbitol) because it had not shown any long term issues. There are other seizure drugs on the market but they hadn't been around long enough to know if there would be any long term damage. It actually made my little girl maniacal and her behavior was so out of control, that's when we opted for dosing on gut....Any medical professional will tell you that's bunk..and probably dangerous but we did what we though was best for her. It worked out.
You have to think about money, especially when you don't have it. It's not your priority but don't feel guilty considering it. We opted not to go out when we felt something was coming but like I said, it was just gut. Usually we were right. Pay close attention and pray. That got us through a lot. Eventually her seizures stopped. We did several things that may or may not have helped. I can get into detail if you're interested.
God bless,
M.
PS. I agree with Jennifer P about chiropractic as well.
S., after these seizures did your son ever have an ECG/EKG? Your comment about the pool especially concerned me. A few years ago my brother started having seizures, one of which was actually IN the pool, and they couldn't figure out what was causing them. Thank goodness a cardiologist happened to hear what was going on (he had just gotten back from a seminar on a newfound heart defect). The ECG/EKG found that his heart had a prolonged QT, which had never really caused alarm before, but this was actually the CAUSE of these seizures. The defect is called Prolonged QT. He has been on medication ever since that wonderful doctor figured things out. What your son is going through sounds so similar to me; nothing on an EEG or CAT scan, yet continuing seizures. This is just one more possible reasons for the seizure, but I would look into it. I'm not suggesting you put your life on hold, but seizures are serious things, and more often than not it is the cause of the seizures that is more serious than the seizures themselves. If I can help you at all or if you have any questions I can answer, please just let me know and I would be happy to help in any way I can. All the best to you and your's.
J.
My daughter was a little over a year old when she had her first seizure. I was rocking her to sleep for the night she started jerking and that had never happed before and 5mins later it happened again so I toke her to ER. We waited for 4 hours before they seen us and by then the jerking had got worse the doctor we first seen said it was unusual. They did CT Scan , X-Ray and EEG all normal, so they sent us home. We live 45mins from closest hospital. We had just arrived home when she had a seizure. She was foaming at mouth, jerking violently for 4mins. She couldn't hardly breath .We called 911 and took her back to the hospital . They said we were imagining it lasting that long and if we were even sure she had an actual one and told us to see her primary doctor the next day and sent us home and told us there was no need to come back if she has another one. I was scared and angry especial this was my first and only child. We seen her primary doctor and she said she couldn't do anything unless my child had another seizure. Two weeks later she had three more. Then they finial sent us to a neurologist they did another EEG and it was normal then the doctor said that she was having fever seizures but she had no fever with them and sent us home again. She had three more. frustrated and scared we started watching everything she ate, used, ect and that when we discovered something she had started to eat raw apples, apple juice around the time first seizure and the others ...so we stopped feeding her anything with apples period.. she is now a little over 2. No seizures for 9mths now so far. Id would have never thought of all things apples. No one in my family has food allergies but her father's family has seafood allergies. I've discovered while talking to my local Health Department that they have had other cases of the same thing happening to other babies and young children and that its not the apple its self its the pesticides sprayed on the fruit and that I may want to watch giving her other fruits and even vegetables especially anything with a thin peeling.
I noticed you are in Idaho... (before you see the one here... depending on who you see... :o) ) We go to Salt Lake City for Neurology. It is well worth the drive, I know it is more expensive, but after 3 EEGs and no answers, we were sent to a genetecisit who then referred us to a neurologist ( my son has "developmental delays") we found out later he had been having petit mal/ or absent seizures for over a year... this was when he was 2 1/2 years old. Since then , going to SLC, this was 2 years ago, he has been put on anti seizure meds, and has also continued to have break through seizures, but they are controlled much better, and his delays have slowed significantly. This year he had 3 partial complex seizures. Which are scary. More than anything... PLEASE... get a second opinion. There is more than one opinion on Pediatric Neurology. I did not have a great experience with the Neuro here in ID, he told me to take my son off of his meds (i decided to go back and see him... since he is close) and within 1 month his worst seizure ever occurred. I hope you have a great experience. and get the answers you are looking for.
My best advice to you mom to mom, Go out for your birthday, have fun, make sure that your sitter is either an adult, OR extremely responsible and capable of calling 911. If his seizures have been that far apart, dont worry too much. Do NOT let him watch movies that night. DO look up the ketogenic diet.
Seizures are scary, but they dont have to rule your life. Make sure others around you know how your son needs to be handled after. Best wishes good luck <3
Also... You can depending on the brain have "normal" EEGs and still have a seizure disorder. It just means when they took that particular snapshot of your brain waves they did not capture one.
Your life will be normal again.
Frequently, chiropractic care helps get the pressure off the brainstem. My cousin, who is now almost 40 had seizures daily when he was 4. My grandmother was his guardian. She got him adjusted by a local chiropractor and she took him off red food dyes and he never had another seizure again.
http://icpa4kids.org/index.php?option=com_finder&view...
Sorry if this has been said elsewhere, I was just glancing through. You mention that he was consuming apple products, but this seems unlikely as a trigger because he eats apples daily. Unfortunately, it may still be the apples - or rather, what's on them - because apples are one of our most heavily treated food crops (since they're very susceptible to disease). So unless they are organic apples, the apple you have today may trigger an allergy or other reaction (eg seizures) where the apple you ate yesterday and the apple you eat tomorrow may not.
Regardless, good luck on the babysitting. When we can't get a sitter, my husband and I will sometimes hook up the kids with a computer game or a movie and go sit on the deck and chat. (A treat for them, a treat for us. - but nothing I haven't reviewed and feel ok with.) It's not a glamorous date, but it is time for just us, and it can be very pleasant.
Hi--
I agree with a bunch of people here that seizures can be caused by a whole host of chemicals and synthetics, heavy metal exposure, or even vaccinations. Chiropractic care is often associated with the relief of seizures. Removing toxins, including cleaning products, artificial colors, artificial flavors, dyes, lotions, sunscreens, etc. would likely help based on the fact that his EEG is normal. Finding a pediatric neurologist would be better than a general practice pediatrician.
As for your Birthday, I agree that creating a fun date at home would probably be the best solution for now--or go out as a family to a fun place and celebrate all together. Do some research on seizures and make sure you get as educated as possible--I would recommend looking at natural, alternative, and chiropractic medicine as it often has great results in the treatment of seizures, especially detoxifying. Look into ionic foot baths and herbal detox--use a naturpathic or chiropractic doctor--don't try it by yourself. After you have thoroughly educated yourself you will be able to confidently prep a babysitter. You'll feel more secure, the babysitter will feel more secure, and therefore your son will feel more secure. Emotional stability goes a long way in a situation like this!
Good luck!
J.
