I just need some support

Melissa - posted on 06/03/2010 ( 26 moms have responded )

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I wanted to post something because I wanted to "talk" with other parents who have epileptic children.

This morning my daughter fell over and hit her head on our bookshelf while getting ready for school. She was rounded over and having a larger than usual seizure. She was drooling a lot and I was so so so scared. I held her in my arms because she was only mildly convulsing. I get so afraid. I wish I had never heard about John Travolta's son. I think about him losing Jett to seizure activity. I wish with all my heart I didn't know that. She woke up this morning and said, "I heard someone call my name!" She even went to the window to look outside. This sort of thing plays with my head. I keep it together in front of her. She was spacey, but was doing OK after about 5 minutes. I dropped her off at school and felt SICK! Just SICK! She said she was having trouble seeing. She's about to finish 2nd grade tomorrow and I didn't want her to miss out on the party today. I thought, "HOW STUPID!" I called my mom balling my eyes out...."Mom, I can't believe I just dropped her off at school after such a horrible seizure!" I felt like the worst mom in the world! She told me to go back and get her and bring her over to her house for the day. She lives 5 minutes away (THANK THE LORD!) and so that's what I did. Leahness was herself again, but I felt like she needed to be with people who really and truly loves her today. I have to work (I don't have a choice).

This isn't a real post I suppose, but I just needed to get my thoughts and worries 'out there' to some others who can understand and maybe sympathize. I can't stop crying. Luckily I have a private office at a small firm and I can be pretty much alone while I get out of this funk.

Thanks for listening...

Melissa

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Shawn - posted on 07/09/2010

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Hi Melissa,

I have a different perspective, I am a mom, I work and I have at times in my life been an uncontrolled epilepitic. My family did what you did. I have a seizure, recover and life goes on. I am controlled now and have only had one seizure this year. I am fortunate to have a husband and family that did not treat me different just because I had a seizure. It is difficult to see our children deal with disabilities. I have a autistic child that doesn't have seizures but he has other struggles. As a parent, I often feel I have burdened my family, husband and even children, with my seizures. It wasn't easy to explain and teach a four year old how to call 911 if I had a big seizure. But we did and she just accepted it. I had seizures through school and my parents (thank God) treated me as normal as possible. Sending your daughter to school as hard as it is, teaches her self-sufficent. I learned I could not use my seizures as an excuse and I wasn't a victim. That when I recovered I got up and kept going. It is easy when you have epilepsy to want to hide and not take the risk of going out in the world. My parents taught me and gave me the courage to go out there. I have gone on to university, had children and I am actually learning to drive this summer for the first time. These are things that people said I couldn't do. If my parents gave me the lessons of getting up and keep trying . I think you did the right thing as hard as it is. I have been very long winded but I wanted to give you the perspective of someone who has been in your child's shoes. I thank my parents for pushing me and believing in me despite my seizure.

Jennifer - posted on 06/12/2010

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I know Hon, it hurts so much. My little one is 9 years old but so much younger than her peers because she's spent so much time either having or recovering from seizures. I've been as strong as I can be for the last few years but it's starting to cost me. I'm finally starting to cry :-( While I don't wish this on you I'm relieved to hear that I'm not alone. My thoughts and best wishes are with you.

Emma - posted on 06/06/2010

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Life is hard enough when you are a working Mum, it's doubly hard when you gorgeous babe has epilepsy. I know how you feel my daughter has had epilepsy since she was six months old and her first seizure happened four weeks after I'd returned to work.
My instinct is always to want to nurse her after a seizure, but she has other ideas!! Even though she still can't speak and is autistic she ALWAYS wants to carry on as normal after a seizure. Many people find it strange that we just let her get up and get back on her trampoline/ bike or carrying on reading a story, pop in the car to the park etc. But you know what she loves to keep going. It's as if the minutes she had switched off in her seizure world need making up for! Life's too short to keep worrying and making too much of things. If their well enough to carry on with their normal life...let them! We've had many unhappy days in hospitals when things are really bad. I think you are totally right to take your daughter back to school. The hardest thing is going back to normal your self. I always let myself have a good five minutes feeling sad/ teary /depressed about things and then I make myself stop, think of all the positives, how much I love both my girls and how Maddy has shown me a new world where I now she loves every moment of her life.it helps that she absolutely loves her special school!!
Give yourself credit for thinking so much about what's right but praise yourself for doing the right thing for your child.x

Pinar - posted on 06/19/2010

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Melissa dont beat yourself up about taking her to school that day. Keeping a sense of normalcy in her life is only right if she is feeling OK after the seizure. Our nuero had once said, seizures are a part of the epileiptic person's life, they need to learn to live with it

Best, Pinar

Umeima - posted on 06/10/2010

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Melissa my heart goes out to you my dear= yes seizures are horrific especially when a parent sees this happening to their child and feel so helpless to control things ( as my father used to be when I used to fit). From my own experience just having someone in control and calm when your seizing helps and to reassure you that all will be Ok and to give you a hug when your comming round helps too.Often if I saw my parents panick and stressed when I fitted then it would be more upsetting to me to see them panick. I dont know whether you have taken her to get MRI's done to see what is the cause since mine was caused by blood clots which were removed by Gama knife- I was seizure free for 10 yrs but when I had my baby I feared that my child may also suffer from this- by the grace of God she didnt but soon after having had her my aura symptons returned and I went on my daughters 1st birthday to have a crainiotomy but I'm on the mend now so know the fear that epilepsy creates. However explore all the avenues to help with her seizures since simple medication can help. Having you sight affected maybe as a result of being dis orientated after having had a seizure and often headaches may follow in which case your daughter may just want to sleep. Yes love and care is reassurring to a small child but try not to wrap her up in cotton wool since she just may want to be treated like any other child and this is maybe why you wanted her to go to the party. Please dont worry about something aweful that may never happen and I and all moms hope it doesnt- BUT keep positive there is no need for negative energy- work with your doctors to give your beautiful child a rounded life not one hindered by this illness. Please dont waste anymore tears of sadness and stress and just enjoy your child- yes there will be things her illness will hinder but she maybe already feeling sad about her illness so just put your mummy hat on and do what you do best- ensure that she feels free to talk to you about her illness and not sweep it under the carpet, I don't know what else to say but your in many mothers hearts and we all pray for you and your daughters good health X x x .now smile you are loved and not alone.

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26 Comments

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Sara - posted on 07/19/2010

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Melissa, you'd be surprised at the strength moms have in them. Last weekend my daughter had a hearing and vision test, then a follow up with the neurologist for her developmental delay. She was admitted on the spot for a prolonged EEG to check for seizures and a spinal tap was scheduled, along with 2 days of blood work. We were there for 6 days altogether and it wasn't until the last day when they did the spinal tap that I finally shed some tears... and it was only because in the middle of the spinal tap the doctor apologized to me and said how difficult it must be for me to watch my daughter go thru this.
I don't know how we do it sometimes, but we all have our breaking point. Just know that you're never alone! Hang in there!
Sara

Theresa - posted on 07/17/2010

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Wow, I didn't even realize this area was here! I am very happy :) My son has epilepsy also. He had a clonic tonic seizure followed by petit seizures two weeks after his 5th birthday. Two weeks until he started kindergarten. That was the most horrible time. I felt so helpless. When I reached the daycare before the ambulance I wanted to cry. The EMT said it was because he had a fever, which he didn't. Long story short, we finally got the help we need in the hospital, but I had to standup for my son and say something still isn't right. You are your childs best advocate and you should always go by what you feel. If on that day you felt she need to be with family, do that. My son's seizures are contolled, with a few break-thru seizures now and then, but I thank God everyday. He's going to be 8 years old this month and when I look at him I can't help, but smile. If he can have seizures and wake up everyday and still want to go on with normal life, so can I! I will keep you in my prayers. Thanks for this post! Everyone needs to talk every once in a while :)

Melissa - posted on 07/15/2010

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OMG! I know exactly what you are feeling! The first time my son had a seizure he was 2. Everything I knew about CPR flew right out the window. I work with autistic kids and one of my clients had a seizure and never came back as his parents say. I saw a blank stare in my son's eyes and I lost it. I shook him and screamed over and over "come back, come back," luckily the EMT's were there within seconds of calling them. I will never ever ever forget that night. It was the longest 12 minutes of my life. It didn't help that my husband was losing as well. His neurologist reassures me every time that he's a typically developing 5 year old and no damage has been done. He used to only have seizures during the night, but recently he has had them early morning and during the day--med dose was too low for his rapid growth. However, at least if he was in his bed or ours (which happens a lot) he is safe, now I have to worry about him during the day. My phone is glued to my side. Good thing 3 teachers at his school have a seizure disorder themselves and 2 have kids with seizures so they all take special care of him throughout the day. It's tough. I'm glad I have this place now to vent as well. Best wishes!

Donna - posted on 07/15/2010

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all people react to seizures differently, we have an aunt who has the and she says hers just make her disoriented for a little while, kind of like a spinning out of control feeling, she says it is frightening for her. on the other hand my son also has seizures (no relation to our aunt) his is caused from brain damage from an infection when he was a baby. he doesnt talk or walk, but usually when he is having them if they are mild he thinks they are funny, have yet to figure that one out. bad ones he really dont react to during, its like he goes into his own little world. after he is usually sick, and sleepy. the next day its like he is waiting for another one to come. oh and when he has any kind of seizure, to date he has never quit breathing or done anything strange, which according to the drs we have seen is odd since most ppl who have the types of seizures he has do show some vital sign change. i have had others who have seizures tell me that it is more emotionally disturbing to the observers than to the one having the seizure. i can see that as being true because usually the person having the seizure dont really remember it. just a few thoughts

Jennifer - posted on 07/08/2010

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i totally understand my daughter was in special ed class but she had alot of seizures i couldn't stand to get the calls that she had a seizure and go up there and her crying because she wanted her mom and dad. i took her out and homeschooled with the help of my parents because i also worked

Melissa - posted on 06/24/2010

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Darlene,

Yes, she is on Keppra and she was recently put on Tegretol (sp?). The Keppra wasn't enough and she was having a lot of seizures, so that is when the Neuro put her on Tegretol. This has helped TREMENDOUSLY! She hasn't had a seizure since she was put on this. I am so thrilled to have found her "cocktail" that will help her live a normal life. Thank you for your prayers and thoughts!

DARLENE - posted on 06/23/2010

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is your doaughter on medicine ? mines is taking Kepprahers seems 2 get start when she's sick such as cutting teeth my daughter is a special needs child 10 yrs. old i pray as she gets older they will stop.

Mariette - posted on 06/18/2010

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hi melissa. i want to find out something by you. my son is in grade 3 now and since he had meningitis he start last year with a sort of fit. his eyes goes backwards and he's stiff when he eventually comes to than he can't remember a thing during that period or what he was doing before he started it. i had him by the doctor and his on medication now but the pills isn't working so now i must take him back. i'm so scared that his fits will get worse.

how did your daugthers fits start. i know the feeling. i think as a mom we feel helpless and wish we could take it away from them.

regards
mariette

Jennifer - posted on 06/12/2010

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After reading your post again it's clear to me that you're doing a loving job under hard circumstances. I'm so pleased that you have good back up from your mum. Keep up the good work, and give yourself some credit.

Tracy - posted on 06/10/2010

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You are not a horrible mom for dropping your daughter off to school after a seizure. My 16 yo daughter is 3 days in bed after a seizure, so you are lucky to have a daughter who bounces back so quickly. There is nothing as mom's that we can do for our kids except to hold them when they are convulsing. I fall to pieces every time my daughter has a seizure. I was trained while working with the Developmentally Disabled how to care for an epileptic so you would think that I could keep it together. We all need that extra ♥ once in awhile and our brains get us into trouble. My daughters neuro told us that the instances of death by a seizure is very rare, but that doesn't mean it does not happen.

Love your daughter and care for her as you always do. Whatever you cannot control, give to the Lord. He listens and answers.

God Bless.

Melissa - posted on 06/07/2010

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Her neurologist Dr. Tomasovic, put her on Tegretol twice a day with her Keppra since this last seizure happened. It has made her quite moody for about 2 hours after she takes it. I remember this when she was put on Keppra. I am hopeful this "cocktail" will keep seizures at bay. Now that she is on Summer break, I'm hoping the relaxation will help her adjust better. Thank you again for all of your support! I'm thrilled to have more mothers to share this journey with who understand fully what I'm going through. I will keep all of your children in my prayers as well. It is my sincere hope that we will be able to find a better way to rid the world of this horrific nightmare we all have to endure. BIG HUGS TO YOU ALL AND YOUR CHILDREN! :)



Melissa

Beverly - posted on 06/06/2010

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Hi melissa. Just for the record, it is never a "funk" when it comes to your children, it is emotion because you have so much of it. I won't share my whole story with you for I do not want to upset you more, but what I do know is you are not alone in this "mystery" they call seizures, for they are not ever sure what causes them. what I do know is, we as parents do our best to protect our children & can't help but love them & watch them like a hawk. If you are not sure why these are happening keep going to the doctors & don't take "we dont know" for an answer. God bless you & your family. I will Pray for you.. Best of luck.. Bev

Larissa - posted on 06/06/2010

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Hi Melissa, My hart goes out to you as my little girl as had seizure since she was one years old, I think that is has been my fault as she was born with a extra thumb and we got told to have it remove at the age of 1 so we did. Know she has got seizure the first lot was 8 in a row and then the last of the lot last 40min with them having to breath for her, She is now 3 years old and still as seizure she got them from the stress of being put under. As i can not put her in day care i have to take her with me to work. We all know what you are going through and we are all hear for you as you i needed some one to talk to and i post it on here and i got lot of support. Please don't ever think that it it not a real post because you need someone to talk we are hear for you at any time.
Big hugs from
Larissa and my little girl Nickayla

Connie - posted on 06/05/2010

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Melissa

I do not have an epeletic child but If it is any comfort to you I will be sure to pray for your daughter and that God would help her with her seizures and to even remove them from her. I could feel your pain and the only way I know how to deal with pain is to give it to God and to pray for those hurting ... so that is what I am doing for you and your daughter. May God give you strength sometimes God calms the storm but othertimes he calms the child and allows the storms to rage.

Kandy - posted on 06/05/2010

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hello melissa, my name is kandy and my child has serizure to and i know what you are going through she is 13years old and she is diong her best on what she is doing right now and it is hard to deal with but you just go one day at a time thats all you can do, she had to have brain surgey that didnt help her at all eather so i feel your pain the olny thing we can do is pray that thing get better for are children.

thanks kandy

Clroser - posted on 06/05/2010

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Hi Melissa....I know what you are going thru. My daughter started her seizures at age 11. She is now 31. Has never been controlled for any length of time and has been on most of the meds on the market as well as having a VNS implanted. For the first couple of years I drove myself crazy wondering why, why, why....and our neurologist finally told me I would be crazy if I kept it up. He was right. Sometimes it just is what it is and you have to figure out how to deal with it which isn't easy either. I'm sure there's at least one hysterical 911 call on tape for me and there were many mad rushes to the ER when the seizures wouldn't stop. She's now on SSI and lives independently tho always seems to have someone with her. You need to do what you can for your daughter but find something to do for you too. As a 20 year vet of this I can attest that you need something for yourself. A good book that takes you away, a date night with your hubby, anything to have an hour or two to yourself. Hopefully, this will be one of the case where your daughter outgrows her seizure activity? If there's anything I can help you with...just an ear to listen...give me a yell....my facebook user name is Cheryl Roser.

Cheryl

Melissa - posted on 06/04/2010

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Thank you for all your kind words. Yesterday was a really hard day because this huge seizure happened in the morning and I had to work both of my jobs and not see her at all! I talked to her about a billion times on the phone to make sure she knew I was there with her in spirit and was constantly thinking about her.

I'm sure all of you have thought this: I never thought something like this would happen to me or my kids. I think that all the time but am always suprised at how strong I can be in front of my daughter. I never lose it like I want to and only break down into a pile of goop when she isn't around. Yesterday morning I stayed soo strong to keep her calm and to make her feel safe. The minute I was away from her after dropping her off at my mom's house, I was a complete MESS! All day!

We called her Neuro and he is putting her on another med along with Keppra. I forgot the name, my husband actually did the leg work to get it done. I will keep you all posted.

Thanks again ladies. I appreciate your support more than you could possibly realize!



Melissa

Kristi - posted on 06/03/2010

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Melissa, know that you are not alone! There are days that I just want to cry all day because I know that there is always a chance that that day could be my son's last. Matt's first seizure happened when he was 13 months.....it lasted 40 mins (none of the rescue medications worked) and he ended up in respiratory failure. He was on a ventilator for 9 days in the PICU. Thank god for my family and friends support....if it wasn't for them I don't know how I would've gotten through it. He is 3 now and has been seizure free for 6 months, but I know that can change in the blink of an eye! If you ever need an ear or a shoulder, please do not hesitate to get in touch with me. It is such a big help to have someone who knows what your going through. You are a wonderful mom, doing your best for your daughter, know that and remember to take some time for yourself, (away from work), even if its just 5 mins. I'll keep both of you in my thoughts and prayers.

Kristi

Ashley - posted on 06/03/2010

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Melissa,
hello I just wanted to tell you I feel your pain and concern as well. I have a 3 year old and it all started when the dr crushed his head when he was being delivered... first i didnt know that he has seizures it always looked as if it was a tantrum and what not so i didnt pay to much of attention but one day it lasted a good 10 min and that so i called 911 and stayed in the hosp for 4 days running tests and that well the dr told me that he has been having seizures and that there were so many spots on his brain that had been fried due to not having medication and how long and bad they were but i thought it was a tanturm.. and the ped told me not to worry now that i look back it was so obvious if i would have just taken him to the er to begin with.. if you need to talk ever plz write me i feel your pain... just thought id give u an insight your NOT the only one who has felt like that.... hang in there girl..
ashley

Heather - posted on 06/03/2010

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Hi Melissa- This is a real post, and exactly why we're all here.

I know exactly what you mean about that fear. my son has life threatening seizures, and I've had to wonder on 3 terrifying occasions whether or not he'll make it through, and if he'll come out with deficits. Luckily, after a lot of medical intervention, he came out of them, and regained any skills he lost. That's not counting the 100's of other seizures he's had. I have dropped him off at school after a seizure. I gauge his mood, clarity, etc (my son is mentally and physically handicapped) and talk to the school nurse and his aide- they both are like mother hens to him. if he nds to come home, i trust them to make that assessment and let me know. My husband and I ended up having to work our schedule so that he works Ft and then some, and I work PT on his days off so one of us is always available for emergencies. We hardly see each other, but it works for the kids. My son's 6 and daughter's 2.

Now, what are you doing for you?

Susan - posted on 06/03/2010

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Hello Melissa,
My heart goes out to you! I think you did the right thing in going back and picking up your daughter from school. Not only is it scarry for you, it has to be equally or greater scarry for her as well to have these siezures and no control over your own body. My son is in a wheelchair and can not talk but is somewhat aware of his surroundings when he has his seizures. He lets out a cry of like he's terrified and he doesn't calm down until I'm there holding his hand and talking him through it. That is when he starts to relax & come out of the siezure. If find he's always scared until i'm there holding his hand. My heart breaks every time he has one. I wish i could do more for him or make them magically disapear.
Don't ever feel stupid. you are a working mom and it's not always easy knowing what the right thing to do is. I'm glad your mom was there and able to help you out.
I wish you all the best and if you ever want to talk just let me know. My facebook user name is: susan roberts fidek
take care & Hugs
Susan

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