I Am Scared to Be Alone with My Son

Allison, please, please get solid, real, reassuring medical information. You must talk to your son's doctors in great detail about what epilepsy is, and what to expect day to day, and how to cope. You must not sit home and worry -- please get out there and get informed, not via the internet with every crackpot crazy theory but through doctors who are experts. If your child's diagnosis is from the regular pediatrician only, you should see a specialist in epilepsy who can talk to you about living with it. Information is power. Your son deserves a childhood, and so does your other child; you know in your heart that you can't keep them home forever.

Also -- this is really crucial -- you need support not from Mamapedia moms but from parents of children with epilepsy, parents who have been where you are now! Please go to the web site www.epilepsyfoundation.org and connect with people who KNOW what this is all about. There may be family support groups that meet in your area, where you can learn from other families who have kids with epilepsy. This is a condition that CAN be lived with and controlled, but only if you start reaching out for help.

The same goes for the other tests he has had -- please don't let doctors just throw things at you; be aggressive and ask question after question and ensure they talk TO you, not AT you. Be sure your husband comes to every doctor meeting so he too is fully informed and can ask questions. You must not handle this alone.

I'm very sorry about your nephew's condition. But you do know, logically, that meningitis is a totally separate thing from epilepsy; seizures were involved in both cases but your son's seizure was utterly unrelated to your poor nephew's illness. THat doesn't make it less scary for you right now, but the way to fight the fear is to be very bold and assertive and get information from doctors and families.

Please let us know soon that you contacted the Epilepsy Foundation and got into a parent support group!!

I feel ya. I delay and delay and delay on checking on my son.

Because, as long as I don't check on him, he's alive. Whether he's been dead for 5 minutes or 5 hours, he's gone. So for that extra five minutes, that extra five hours... he's alive in my heart and my mind. And I'm unwilling to give that up.

I want to check on him every 10 minutes. I'm terrified of checking on him at all. Every single day I have to put on my game face. I'm terrified to sleep. I want to be awake the entire time he's asleep, just in case, but then I'm afraid to look at him.

No advice. Just empathy.

My house is a disaster, and has been for months (the post earlier about people with messy houses actually made me cry, but I simply don't have the energy to be a good mum and a good housekeeper and keep my sanity)... my marriage makes everything a thousand times harder... my friendships are suffering.

When your kid is sick, everything just gets placed into kind of a moving stasis. Like walking down the wrong way on an escalator. You're still moving fowards, you're not losing ground, but you're not getting anywhere, yet. At some point it seems like people get better at going down the up, and they get back onto solid ground. I'm not there yet.

So no advice... just empathy.

Sucking badly is part of life's job description. And it happens to the nicest people.

You can get through this by fighting fear with learning.

Get into what I think of as a "CHARGE!" mode (and I don't mean credit cards). Action can help beat the paralysis of fear. Don't wait for Wednesday to start acting - although the doctor wouldn't have you waiting for a few days if he/she thought your baby needed immediate, emergency treatment.

Call the nearest center for epilepsy NOW (I'm yelling so you'll hear me through the fears) and tell them you desperately need help learning what to expect and what to do. Talk to someone in person, face to face, if you can. You aren't the first mama to be dealing with this and you won't be the last. Ask about everything, including the heat outside.

Meanwhile, look at your baby, pick him up, tell him over and over that you love him! He NEEDS you. You are specially chosen to love and care for this baby. You do not cause epilepsy.

Love on your three-year-old, and tell him/her you WILL be there for them, because that's what you plan to do. You don't know what the future holds, but you do know you can love your children, no matter what the next five minutes brings.

Learn what the worst may be, stare it in the face, and then get going to make the best for your children.

The twists and turns of life are often terrifying, but somebody in your house has to act like the grown-up, and you're elected. You can do a really good job of it, too. Go get on the phone.

Allison, how very hard this must be for you. You are terrified, and under the circumstances, I think any of us would be feeling real fear and worry. You "know," of course, that no amount of worry in the world will do your son any good, other than it will keep you seeking whatever care he needs. But knowing that can't keep the worry away.

This has worked for me, although it's a bit like going through the eye of a needle: I immerse myself in the worry, don't try to fend it off or deny it, face fully the implications of the danger, and have a good cry. Or three. Somehow that brings me to the place where I can face the situation, accept it for what it is.

We are all mortal and temporary. We are all going to die. Whenever that happens, will be the exact right time for each of us, you and me, your child, your nephew. It's mostly out of our hands. And that's a huge, huge thing to live with. Those who are able to accept it are often those facing death sentences from cancer or other serous illness. Or even old age. And amazingly, they report a new freedom in that, and new, deeper meaning and pleasure in their lives. I have been in situations three times that have required me to get to that place.

i wish you that. I'm sorry for what you may have to pass through to get there, but I promise you, it will be worth it.

Allison,

Breathe!!! Take some deep breaths and count to ten. Boy, you are dealing with alot right now. The best thing you can do for yourself and your son is to get together with some people who love and support you. Do you have any family members or friends you could call that could come over and stay a bit??? I would start there. Then, remember that epilepsy does not mean the end of the world for your son. It just means life will be different than what you intendied it to be. Everything will be ok. Love on your baby boy and your 3 year old and take them to the park! If you live in fear, it will teach your kids to live in fear and never break out of their shell. Help yourself and in turn you are helping your kids long term as well. As for the seizures---write down on a 3x5 card what you will do in an emergency. Put it in a handy place-like your purse/pocket and recite it a few times a day. You will feel more prepared and in control. GL

m

Just try to breathe. You poor thing. I am so sorry. Really tough time. I agree, you need some facts. I, personally, would go see the Doctor today to get the facts. Surely, he would have had him in the hospital with those blood results had it been necessary but I would need answers as much as you do. Do you have a friend who could come help you right now, both for the sanity factor as well as someone who could help you should there be another seizure??

I am so sorry. Just breathe, pray and do something, get a friend over to help you, call the Dr. for an earlier appt., call an epilepsy group. Just don't sit there and agonize. Develop a plan.

Can you schedule to have girlfriends to come over? I'm hoping that you have good friends or additional family to be surrounded by right now.

I am praying for you, your son, and your nephew....

I had a class one time for Developmental Disabilities and we were discussing disabilities. We were told to pick one physical disability that we would choose to have if we "had" to have one. I choose epilepsy. Everyone in the class was astonished, they had mostly chosen blindness or deafness. I told them that most of the time epilepsy was treatable with the proper combination of medication, a person who has had it some time can usually tell when one is coming on and take precautions, like sitting down, pulling over, letting someone know they are going to seize, etc....it is the only one I would ever choose.

It is not the end of the world, they happen, they get up and go on. I don't think the state should allow them to ever have a drivers license and they can't in my state. My friend had one, that's right...1, on the operating table from some thing the doc did during a surgery and she cannot get a license. Another lady has epilepsy and takes daily meds and she drives all over the USA. She has not had a seizure in many many years due to caring for herself and taking her drugs every day.

Please just take it easy about this. He will get by, have friends, be able to date, play sports, have a good life, etc...working through all the meds that don't work for him until he finds that right cocktail is the hard part.

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I am so sorry you are going through this. You have a lot on your plate right now and all of it is scary.

Epilepsy is not the end of the world. The pp who said to write down what you do in case of a seizure on a card was brilliant. I wish someone had told me to do that for my son. It also took longer than a week for him to be diagnosed. Is he on any medications? The Keppra helped my son and he's been seizure free for nearly 18 months. so there is hope. Love on him. And as for the heat, keep him hydrated, and popsicles and chocolate milk popsicles count!

He can still swim and climb the play structure. You don't want to make an invalid of him. Not allowing him to play normally is being over protective and will cause him more difficulty than the actual seizures.

I know exactly how you feel... I went through the same thing with my baby when he was 6 weeks old. I will never forget his first one because it was while I was breastfeeding him. He had every test done that they could do and he was perfectly healthy with unexplained seizures. It took 3 weeks for his neurologist to get the right medication that worked for him. During those 3 weeks all I wanted to do was hold him... comfort for him, comfort for me and I didn't want to sleep through a seizure. Truth is you won't. Something within you alerts you and you just start watching him. I swear my 2 year old has a sixth sense, because out of nowhere he would start freaking out and a couple minutes later our baby had a seizure. It is so so so heartbreaking I know, but you are his mommy. You need to get over your fear(s), because your son needs you. Don't be afraid to feel what you feel, but you need to treat him as normal as possible. You must be strong and calm and loving because they know when you are not okay, and that upsets them. I will be honest and tell you that we didn't go out much because the panic from other people would have been too much for us and our baby. He went everywhere with me in the house when it was just me and him, whether it be in his bouncer in the bathroom or his bassinet by the kitchen. I watched him like a hawk!

Well, our baby is now 9 months and has been seizure free since January this year and is, for the most part, developing normally (a little behind on his gross motor skills). I am happy to announce that he has been successfully off of his medication since June this year. I still keep an eye on him, but I can breath better now. I wanted to share this with you and let you know that there is hope and that medicine has come a long way. I do suggest that you watch him every second you can spare and when he has a seizure try to video record it. It could help steer the doctors to the right diagnosis, as I know describing seizures is not any easy task.

What ever the outcome, prepare yourself to cry and then ask what do we do next. You just can't help but cry when it's your baby, but then you woman up and fight. You will always worry, but then you learn to not get worked up until you hear the results of tests. Ask all of the questions that are going on in your head, whether you think they are dumb or not and write them down if you need to. I asked about EVERYTHING and told them to break it down for me without the big words... I am not a doctor (general or specialized). Mentally prepare yourself and accept this as a part of his life for the next 5 years or possibly the rest of his life. Once you accept it, it gets easier to cope with it. My heart goes out to you and your family, and I'm sorry about your nephew. PLEASE feel free to message me if you have any questions or just need someone to talk to. Prayers and Hugs

If your son has been around your nephew that in a coma, tell the doctor's that. Its possible that he may have something similar.

All I wanted to tell you is to hang in there and take it O. minute, O. hour or O. day at a time. I hope that after your next appointment you have more factual information about what is happening. And knowledge is POWER! Once you know more, you'll feel more confident with his care. And remember--9-1-1 can be called at ANY time. Never hesitate!
Good luck and God bless.

Okay - first off - take a DEEEEEEEEPPPP BREATH...let it out slowly - okay - NOW another one...DEEEEEEPPPP inhale...let it out slowly...

You need to NOT panic...you need to know what to do and how to handle the situation...DO NOT panic...I know you might be rolling your eyes and saying "yeah right" but it's true...you MUST keep your head. I've attached some support groups below that you can contact and start to see that you ARE NOT ALONE...and WHAT to do...

I'm surprised the doctors did NOT tell you what to do and how to handle it...they are probably going to start him on a low dose of medication to keep the seizures at bay...they may not - they may wait to find out how often the seizures are happening....

http://www.epilepsyfoundation.org/local/efcst/groups.cfm
http://www.partnerstx.org/Resources/Epilepsy/Support.htm

You need to get a support system around you. You cannot stop living your life because your child has epilepsy nor can you keep him sequestered in your home because of it....MANY people have epilepsy and live VERY NORMAL lives....

Another thing - you need to STOP feeling sorry for yourself...you've had your pity pot, now you need to pull yourself up by your bootstraps and learn and press on...yeah - life isn't 'grand' right now - but God will NEVER give you anything you CANNOT HANDLE....God will lead you and guide you - but He can't do that when you are on a pity pot and not listening to him...take a few minutes out of your morning, each day and pray - asking for guidance and learning....God WILL help you...

God Bless!

I would also ask the dr if your sons seizure could be related to your nephews and have them run some different blood test.

The best thing that I have found to do w/a child that has been sick since the time she was 6 wks of age was to talk to people - talk to them via email, talk to them on msg boards, talk to them on the phone. Any way that you can, just keep urself busy talking to people so u don't drive urself crazy worry about it by urself. My oldest has had 3 major knee surgeries by the time she was 12, one at the age of 10 that almost claimed her life. It came to be very scary, but we have to pick ourselves up and keep going for the sake of our other children. We have a 7 yr old who also had a hard time coming into this world, but our main focus is that she has been fine since her stay in the NICU. It is frustrating when we don't have the answers we want, when we want them but all in time. Sometimes it is best for us to put more trust in the dr's then what we truly don't understand anyways. As long as you realize what the dr is telling you to do and u follow their instruction, which in turn helps ur son, then u r doing the best u can. There are going to be many scary moments in our lives when we feel helpless, but there are people who will be able to help us thru them. I wish u nothing but the best in getting thru this time.

I am not sure this question has been closed or you will come back but I just wanted to tell you that I will be praying for you and I totally understand your fears.
When I was younger I worked at a school where Epilepsy was pretty much the norm. I had only seen a few sezures before that. One when I was probably seven a little boy that was ten was being rushed into the doctor's office where I was waiting and in High School, a girl in my class had one.
I had always been one of those kids who did not like to be uncomfortable. And to put it bluntly seizures are pretty uncomfortable. Mainly because you feel so out of control.
At that school I learned as you mentioned the recovery position. I learned that jamming something in their mouths was ancient and how to be............. C-A-L-M!
One summer I was the counselor for nine 9 year old girls. All with some form of seizures. I had to give medication 4 times a day. It was a lot of responsibility but you know what? That was over 30 years ago... and not one of those girls had a seizure the entire week. I worked at that school for 3 years and never saw a sezure. Later after I had kids I worked as a teacher at a pre-school and one of our students had a feberal seizure (spelling?? just had brain lock!) I knew exactly what to do and made everyone else calm down.
I guess my point is... that now days they have come so much farther but even then they could regulate meds and make most of those kids seizure free.... they have support groups for everything... I am sure you will find comfort in finding one that understands every feeling you have.
I think I may have missed how old your son is? You say you have a three year old so I am assuming your son is younger??
You will go through different stages... you will learn to cope I promise. Obviously, you know the most important thing is to love your children without missing a beat or letting them know you are upset about this. Kids remember the craziest things and you don't want to make mistakes that can be avoided. I think even better than any doctor with bad bedside manners is a support group who can lead you to some compassionate doctors who will spend time with you in helping you through this!
God bless and remember... God will not give you anything bigger than you can handle... and believe me honey, I am old enough to tell you I have survived a lot! But the key word is survived and with God and support of others you will too!

When my grandson had seizures I used homeopathy to cure him. Start looking for a homeopath. I know you are within 50 miles of a big city. Many must be practicing there.
Acupuncture is known to cure epilepsy as well.