I am scared and don't know how much more I can take....
By babyangie27
@babyangie27 (5176)
United States
October 1, 2009 10:25am CST
This will be long so i am sorry and if you don't wish to read this I understand. But I have to have this be heard. My daughter (as some of you know) has epilepsy,cerebral palsy,developmental delay and one kidney. Well she came home from school yesterday and was really hyper. Because of my severe anxiety and the fact I haven't had my meds in so long I can't remember,her behavior set me into panic mode as hyper-ness is usually her sign for a seizure. My husband said it was probably because he was home early from work and she was excited about that. I pretended to go with that while my mind went in thousands of directions. You see she had a seizure in April where she stopped breathing and I had to give her CPR,which I had only learned the day before. Since that seizure I have barely slept and all I think about is...well this is hard for me to write.. but I fear for her death. To get back to this....
The rest of the day went OK until a friend of hers came over for a while,we were kind of babysitting in a way. She started getting hyper again and after dinner and towards bedtime i started to really panic from her behavior. She has her seizure while she sleeps,usually in the first 30 minutes so I watch her closely during that time. Bedtime came and it seemed my anxiety might have played tricks on me,until 25 minutes into her sleep.
Her seizures usually start with the left side of her mouth twitching and then if it goes on a while her arm or leg will become involved.
Not this time. I was on the floor watching her feeling a little relieved because 30 minutes was almost here. Then all of a sudden she gasped,her whole body tensed up and her eyes were fixed to the left,and she was convulsing all over. I screamed for my husband because he was in the bathroom,I had never seen one like this before. I grabbed her Clonopin(a kind of sedative to stop the seizure) dialed 911 and placed the medication in her mouth. I asked if she was OK while I touched her belly to see if I could tell if she was breathing,she turned gray. By the time the 911 operator answered the seizure was over.
EMS came and proceeded to check her out like they always do. All her stats were perfectly normal and she was somewhat alert of course with the sedative she was ready for bed again. I had begun to shake and rock myself. My heart was racing so fast and my mind even faster. I knew I was having a panic attack or anxiety attack,I had have some before.
We didn't take her to ER because the doctors always tell us the same thing after 4 hours."Well she is OK now,you are increasing her meds every two weeks per instructed so there is nothing else we can do" I know some of you may not understand that but I am not going to make her sit up there for 4 hours just for that.
She fell back asleep before the EMS even left,I had to go outside to get some air because I felt like I couldn't control myself anymore. I managed to at least be able to take some good breaths and calm down enough to breathe. But while I watched her for the next 30 minutes, I continued to shake and rock,I was fighting back tears and a complete mess.
For the next 2 hours I couldn't stop shaking and rocking. I didn't know what was going on with me. My husband tried holding me and he asked if I wanted to go since the EMS guys were finishing up paperwork outside our home. I said no because I was afraid. I am still afraid.
I got some sleep maybe an hour here and there,kept her home from school today and I am still sitting here kind of shaking again. I am trying not to cry because I don't want her to see me like this. I just don't know what to do. I have tried to go see my doctor and they can't see me,I don't know any other places to go. It is like my mind is jello or something.
Why am I still like this? I am usually so calm during and after a seizure,sure I cry a bit or even am very nervous but not this time. My friends always tell me that I am so strong but I don't feel that way. I am upset,shaking,nervous and angry today.
Does anyone know what this is? Is this anxiety at it's worst? Is this common? I am so confused and so lost and I don't even understand what is going on. Thank you for anyone who read this,I know it was very long. I just don't know how much more i can take,these seizures not only affect her,they affect me.
7 people like this
29 responses
@Thoroughrob (11742)
• United States
1 Oct 09
It really sounds like a good case of panic attack. It sounds as if a good nerve pill would do you good. I am so sorry that you have to go through this every day. Although like you, I would not give my son up for anything and would do everything and anything I could for him. You have to get a break for you!! You are not super woman. I would call the doctor again and make an appointment for the first time they can get you in. I wish I was closer, I would come and sit with you. Is there anyone you can call to come over. It really sounds like you are having a meltdown. Do you have a support group or case manager that you can call? If you need to talk, PM me and I can call you. You have to know that you are not totally alone in this journey.
3 people like this
@Thoroughrob (11742)
• United States
1 Oct 09
I am glad the doctor is going to get you in. Do you get any help with her? Do you qualify for any waivers through the state? If you don't please check into it, it can really helpto give you a little break.
2 people like this
@babyangie27 (5176)
• United States
1 Oct 09
I don't know what a waiver thingy is. I have her on SSI and that is it. I can;t work because of my own anxiety and I needed a lot of help even getting her signed up on SSI then I had to get a lawyer because they denied her,I don't understand things well and I get nervous doing things alone.
@babyangie27 (5176)
• United States
1 Oct 09
Thank you Thoroughrob having met you all those years ago on here showed me I am not alone when it comes to having a child with special needs. I know you deal with so much and like you I wouldn't change having my daughter or being with her,but I wish and pray to God for these seizures to stop.
I got kind of a small break when my friend loaned me her car earlier to go run some errands and she stayed here with my little one.
I called the doctors and first they couldn't get me in until the 8th but called me back just not too long ago and I have an appointment for 9:45 am tomorrow,now I just have to find a ride to go.
I am starting to slowly calm down after last night's episode but I am still very much on edge. I think I a having a meltdown no doubt but there is nothing I can really do right now.
@bitoffun (203)
• United States
1 Oct 09
Hey babe, I know we just talked on the phone for awhile. But I meant what I said. I know support groups are not for you because of your social anxiety, but I am going to serach the internet and find you an online support group. I knw you do a lot of work online but you have to make time for a support group once we find one. Your gonna be ok, but you really need to find a way to get back on your meds. They really will help you.........................love you babe........mom
@babyangie27 (5176)
• United States
1 Oct 09
You have been the best internet friend and now internet mom a person could have.
I am doing my best to calm down and try to relax but the shaking is still there now just not as bad. I already spoke to you and told you about my appointment tomorrow. But I love you and thank you for being there for me. 
1 person likes this
@dawnald (85130)
• Shingle Springs, California
1 Oct 09
I've had something like this where I just say inside my head over and over again, "I'm not all right, I'm not all right." And it's OK to not be all right when your child is going through something awful like that where you're completely helpless to stop it. I'm sure it was anxiety, and given the situation, completely understandable.
I hope hope hope the docs are right and that gradually increasing her meds will help. But if the situation doesn't improve, do what it takes to make those doctors listen to you.
Sending lots and lots of hugs.
2 people like this
@babyangie27 (5176)
• United States
1 Oct 09
thanks Dawn it mean a lot to me right now to have friends that care and listen.
This is the third seizure medication she is currently taken,each one has slowly been upped to their max. I don't know what more they can do or what more we can do.
I am really starting to be paranoid and think maybe it's my trailer that is causing it.
The seizures came back after 3 years of no activity one month after we moved in here. So I need to find someplace that does Mold testing. Maybe I am crazy but I have to try all angles and options.
2 people like this
@OpinionatedLady (5966)
• United States
1 Oct 09
It's called being a Mom. There are times in our lives that the stress of being a parent can just suck all we have out of us. In these times it is important to stop and take a little time for yourself. I know this is very hard to do, especially with a child who needs you so very much in so many ways. Seizures can be dramatic even if they are small ones and they can, not to be funny, be the straw that breaks the camels back so to say. Take a day off go to a spa or if like so many the extra money is too much just go take a walk. Go once a day for an hour and you will be amazed how much you can just think out and since walking increases some of the "happy" hormones you will feel better. I know it sounds silly but it really does work. My cousin is mentally disabled from a vaccine given to her in the 60's. For the last 40 years my aunt has had to take care of her every need be it mental, emotional, or medical, according to her she would have been incarcerated if it wasn't for her morning walks.
@babyangie27 (5176)
• United States
1 Oct 09
That's the thing,there is no time off. My family can't or won't help me,my friends have their own children to worry about. My husbands hours are never set so sometimes he doesn't even get home til after midnight.
Even when she is in school I am a mess. The stress of everyday life,not just what my daughter is living with but bills,money,worrying over her. I can not run from my mind nor can I run for what my mind says and what it leads me to believe.
1 person likes this
@OpinionatedLady (5966)
• United States
5 Oct 09
No you cannot run from life. But taking some time for yourself away from your daughter away from the bills and phones and noise can give you the time to think things out and fix your soul from the inside out. Sometimes time to just work it out in you head be it walking, quilting, laying in a field what ever can give you the mental break or internal evaluation time to work things through.
1 person likes this
@purplealabaster (22094)
• United States
1 Oct 09
First, I am sending you a huge hug! Second, yes it is anxiety. Third, it may feel like you are going crazy, but it will pass eventually. Fourth, you should definitely start taking your medication again. It should help with the anxiety. If it doesn't, then talk with your doctor and see if you can get a prescription that will. It is perfectly normal and natural to feel like this when your child has a serious medical condition. You are not alone.
I am sorry that I am being so short here. Please forgive me, but I have to take my mom to the doctor. I wanted to get a brief response in here first, but I am making us late and they are yelling at me. I will be back soon.
2 people like this
@babyangie27 (5176)
• United States
1 Oct 09
thank you purple for taking the time to write this while you had other things to do. I stopped taking the meds only due to losing my insurance. I spoke with the doctor and sent you a PM explaining it all.
usually that feeling does pass but I am still feeling it today and it seems to be getting worse instead of better.
2 people like this
@babyangie27 (5176)
• United States
1 Oct 09
I know I know,I hear that all the time. But purple sometimes there is no money,and I don't mean money for something else I mean BROKE no money. We have had lots of those times lately.
1 person likes this
@purplealabaster (22094)
• United States
1 Oct 09
Hey, we are friends, and I try to be there for my friends. Besides, I know how it can feel, and it is important for you to know that there are other people out there that understand and feel the same way.
I understand not having money and not being able to get medications due to not having insurance, too. Sometimes, though, you just have to do whatever you need to do to be able to afford the medicine, because your health and welfare is very important. I know that you put your daughter first, but you need to take care of yourself, too, because otherwise you can't take care of your daughter.
2 people like this
@good2go2001 (915)
• United States
1 Oct 09
I dont have any magic answers. All i can say is it does help to vent and talk. I havnt experienced the exact same things you have but i have 3 speical needs children. Two of them have seizures, and autism and it is very difficult to deal with. My family couldnt be a good support for me because they had not traveled the road i was on, they tried to be there for me but i needed more.... i needed to have support from another mom that could relate to what i was going threw. I found support groups for parents of children with autism to be helpful to me and helped me to stay calm and focused on what was best for not just me but for my childrne. I will keep your family close in my prayers and hope you find some peace in knowing you are a very good mother.
3 people like this
@babyangie27 (5176)
• United States
1 Oct 09
Thank you for the prayers and the complement. I don't know what it is like to have a child with Autism but I know it is not an easy road.
My husband and my family and friends try to be there for me too but I feel alone in my own mind.
I wish I could find the courage to go to a support group but my anxiety is so gripping I find it hard to even shop sometimes. I feel guilty that I can not stop her seizures and I can't know for sure when they are going to happen.
Thank you and you are right it does help to vent it out.
2 people like this
@Ithink (9980)
• United States
2 Oct 09
I wish I had some kind of magic potion that would help you. It is stress and anxiety that is going on with you. I know that it cant be easy to worry about your child this way. I honestly dont know what I would do if it was one of my children.
Have you looked up different herbs you can take for anxiety? I used to have attacks and I took St. Johns Worts and it did help. At least it would be something and it isnt really expensive until you can get money to get to your doctor and get a prescription. I understand all to well money woes. We dont have insurance for us (husband and I), kids are covered thou. He has health problems since he had a van fall on him 2 years ago. He has seizures in his sleep too.
I wish I could help, I wanted to reply to let you know that there will be and are people thinking of you and your family.
1 person likes this
@babyangie27 (5176)
• United States
2 Oct 09
Thank you for posting a response,it does mean alot to know I am not so alone and no one cares. I know my husband is doing the best he can but even he doesn't understand my mental issues. I am sorry to hear about your husband and I am glad he is still alive. I pray for you and him.
I haven't looked into herbs but if I find out from the regular doctor tomorrow I have to wait a long time before i can see psych I will look into them.
@miamilady (4910)
• United States
1 Oct 09
wow. I am so sorry for what you are going though!
You have a lot to deal with. Of course you are going to have moments when you become overwhelmed!
I'm not an experct AT ALL, but my son has experienced SOME issue with anxiety, so I can somewhat relate...
Why haven't you taken your medication? I'm not pushing meds on you at all. I chose not to put my son on meds for his anxiety, but I'm wondering if they were helping you while you were taking them and why did you stop taking them?
You asked if your reaction is "normal" or "common". I don't think your circumstances are "common" so it's impossible to know if your reaction is common or not.
But I do think that considering what you are dealing with, it's not a complete suprise.
It sounds like you need to find some "time off" for yourself.
I'm guessing that's hard for you to arrange with your situation, but you might want to consider that possiblity.
Look into some things that can help you calm down. I've never really tried it myself, but maybe some form of meditation could help you to calm yourself.
I hope you find the answers your seeking.
2 people like this
@babyangie27 (5176)
• United States
1 Oct 09
The medication I was taking worked really well at the time,of course her seizures have changed since then. I only stopped taking them because we lost our insurance at the time due to my husband losing his carpentry job. And we couldn't get Medicaid threw the state.
I just got off the phone with the doctor and so far they can't get me in until the 8th but she said she would keep an eye out for one sooner. I try to get free time but that only happens when she is at school and eve then I am still a mess with worry.
1 person likes this
@leenie50 (3992)
• United States
1 Oct 09
Sweet Angie,
How long have you been without your medication? It sounds like withdrawals to me. Honey you need your meds. Honey, you need to go to the ER. They will prescribe your medication. Why won't your Doctor see you? Angie, you have to see a doctor. It's probably your shattered nerves. Without something to calm those nerves, it won't go away. I wish I could help you sweetie. I don't even know what else to say. A big hug.
Leenie
1 person likes this
@babyangie27 (5176)
• United States
2 Oct 09
Hi leenie hun I hope you are doing ok,I don't see you much since BB stopped.
I haven't had my meds on a regular basis since 2008 when I lost my insurance. The doctors are seeing me in the morning but that is a regular doctor so i am not sure when I can see psych. I can't go to the ER because my hubby is at work and my little ones bedtime is coming soon. I am starting to get nervous again because i am home alone but there isn't much I can do about it.
@babyangie27 (5176)
• United States
2 Oct 09
I am starting to see how many here are caring and do care and understand it is kind of odd when the offline people ion my life seem to not even care or notice.
I will try that next time and see if it helps.
@leenie50 (3992)
• United States
2 Oct 09
Honey,
Way back when I started with an anxiety attack, I would lay down and start praying. Anything to take my mind off of what was happening to me. God helped me a lot. After reading all your responses, I understand when you say that the family doesn't understand and that they don't want to be a part of it. Almost as if they ignore it, it will go away. We here understand and are here for you.
Leenie
1 person likes this
@lynnemg (4529)
• United States
2 Oct 09
What you are experiencing is definately anxiety. You are obviosly scared right now, and this is your body's way of trying to cope. Until you can get back on your medicine, can I suggest making time to at least take a hot bath to try to relax a little? I know it can be extremely hard to even find that much time for yourself, but it really can help.
AS for your daughter, let me say that I completely understand why you did not take her to the ER. As you said, once the seizure is over and 4 hours has passed without another one, there is nothing that can be done. Now, if she has one that lasts more than 5 minutes or has multiple seizures, then, they should be able to do something. I am a bit surprised that the doctors would tell you to give her medicine while she is having a seizure though. Let me explain, when a person it seizing, they have noc ontrol over themselves and as a result, whe you place something in the mouth, they can actually bite a finger off and choke on it. Yes, their jaws are that strong.
I am glad that you know that when her behavior changes, it is a signal that she may have a seizure soon, I am also glad to know that you are well aware of when they normally happen. I wonder if you could take the fact that you know those things and actually prevent the seizure by giving her the medication before she goes to bed? Having worked with people who had seizures, I have learned a few things, one, I learned that the person's vital signs often change a bit shortly before a seizure, for example, their temperature is slightly elevated. I also learned that the amount of lfuid and sodium that a person takes in each day can effect their seizure activity too. One person in particular that I cared for was on a restricted fluid intake of no more that 1000cc each day and was not allowed to use salt. This really did help slow the seizure activity to the point where this lady rarely had any inless she slipped on her diet.
I know that your doctor is probably taking very good care of your daughter, but I also know that these are things that sometimes doctors neglect to say. It might help to check into it.
In the meantime, please try to get back on your medication so even though you still have things to deal with, maybe you can feel better and not so nervous and anxious all the time. I doubt that any medication can take the worry that you have away, but maybe it can help you think a little more clearly.
You should be very proud of yourself. You have a lot to deal with on a daily basis with your daughter's health alone, and you do it. You may feel lost right now, but, in my opinion, you are doing a wonderful job, and deserve to feel great about all that you do.
I really hope that you find something in this response that is helpful to you. I will be sure to say many prayers for you and your family.
1 person likes this
@babyangie27 (5176)
• United States
2 Oct 09
Thank you and I did find it helpful. She has bit me once or twice while giving her the meds but these are the first step to the one shot that you give them in their booty that can cause them to stop breathing. If I have to get my fingers bit I would rather do that then give her this shot and have her stop breathing on me again.
She has complex partial seizures,so they doctor told me unless she has a seizure for 20 minutes straight not to call 911 but I know my kid,and when I see something I find odd I call 911. Her longest seizure was 16 minutes and she has that one exactly two weeks ago last night. She was having them ever 4-6 days or so.
I am hoping to get on some medication tomorrow but since I have to have a referral from a regular doctor first who knows when I can get back on my depression and anxiety medication. Also when I took these pills before her seizures had never changed,now they change a lot sometimes on the left sometimes on the right and some like last night I guess. SO I am not even sure these meds will work for me anymore.
Right now I am home alone with her and it is bedtime. She said she was dizzy and said her forehead was talking to her(I swear she said that) she plays around alot as she is 6 but mentally she is not. So I am nerved up all over again.
@babyangie27 (5176)
• United States
2 Oct 09
Thanks lynn and you are right,it does help to have people to talk to even if they aren't here with me physically I can feel people's caring,that might sound weird I know.
I always worry I am not doing the right thing,but I think for once getting me help might be the right thing for us all.
@lynnemg (4529)
• United States
2 Oct 09
I can understand why you would rather give her the pills then a shot. I would feel the same. No, you taking medicine is not likely to make her seizures any better, but maybe taking it can help you cope easier.
I think that you are right in target with how you are handling everything. You are doing what the doctor says as well as following your instincts which is a great thing. Never doubt your instincts when it comes to your own child, they are almost always right on target.
I really hope that you can find some comfort in knowing that you have friends here that you can talk to. I know that it isn't quite the same as having someone right there beside you to help you get through it all, but at least you do have a place to turn.
1 person likes this
@debrakcarey (19887)
• United States
1 Oct 09
Sweetheart...what you are experiencing is normal for anyone facing what you are facing.
I am praying for you and your little girl. I have found in moments of anxiety when I am fearful and panic begins to set in...if I talk to God and tell him exactly how I feel...it helps me to calm down. You are not alone, sweetie. And you go ahead and post all you want about it. I know it helps to know that someone is listening...and caring. And I do care. hugs
2 people like this
@babyangie27 (5176)
• United States
1 Oct 09
Debra you always have something to help em don't you? Yes writing this out helped even though it made me start shaking all over again. That has subsided a bit and I have an appointment in the morning. I will update when I can,and I try to talk to God but when my mind goes like that it is like I can't think or concentrate or anything.
1 person likes this
@indybaty (368)
• Panama
2 Oct 09
Hello baby. I apologize first hand if this is too long.
I dont know where to begin right now exactly. Im at work and my mind is well, playing tricks on me to say the least, but what I do hope for you, is that your situation improves.
What you are feeling, is in fact, anxiety, and Im sure if my 11 month old baby would go threw something like that, I would have that too. I suffer from depression, ansiety and bipolar supposedly... like you, there are days I feel like I just cant do it. I cant take care of everything at the same time, everything is overwhelming and it comes to the point where I just try to keep it strong and hold the tears in, because I know if I do, I would crumble.
But see, thats the thing dear... things in life, whatever it may be, yours is your daughter, mine is the line of work that I do, pushes us to feel in a way that we feel that we cant control. My dear, my heart is with you, and believe me, from here, even though Im far away from you, I give you my support, my heart, my strength and prayers for you to be better. And dont worry too much, this will pass...
My dear, even though we try to remain strong for our family, we are not rocks. Its ok, to let go slowly and evenly how you feel, the despair, the anguish... you cant expect to be fine all the time, the body accumulates this stress indirectly and if you dont let it out, it can blow up one day without you being able to keep tabs on it. I read about your medication and that you cant have it for now because of yoru situation... so what I do, is close my eyes, shut everything out mentally and breath... breath very deeply and then I think of a melody or a song that can help me breath, slowly cool down, and then open my eyes. If you could, hopefully with a support group, say how you feel...
Even now, righthere, threw these written words, no matter how hectic it gets, no matter how tight everything in schedule is.. give a bit of time to yourself.. just a few minutes at least and stop.
I dont know if this helps... but coming from someone as well that feels that way like you do... its helped me a great deal. I pray for your girl and I pray for you and your husband.
Thank you for reading me..
@babyangie27 (5176)
• United States
2 Oct 09
o need to worry about the length of your response,I find alot of comfort in reading what people think. Because i always feel alone and that no one understands,I see I am wrong and many people do understand and some have even lived like I do.
Life is not easy and that is so true. I hope now that I have my meds again as of today I will start to get well again.
I hate to cry always have that is why i would self injure instead of dealing with tears. Also I have some major nerve damage from bad teeth and crying aggravates them as well. But I will have to learn to cry and let go and I know I am no robot.
@indybaty (368)
• Panama
2 Oct 09
I dont think anybody likes to cry. I dont like it much either dear. But when we dont, even our bodies react with different behaviours and "hints" part of your anxiety is related to that as well. Its not like you have to cry, but when the times come for it... you have to let it go. It cant stay in forever because your body will tell you it wants that out.
Dont feel discouraged my friend. I have faith in you and your family.
1 person likes this
@Louc74 (620)
•
2 Oct 09
Hi Babyangie. My friends little girl has cerebral palsy, developmental delay, and suffers seizures as well, and I can hardly imagine the fear you must feel when your little girl is suffering. Obviously you are strong, but we all have a saturation point, and it sounds like maybe you're reaching yours.
I had a little look online, and I've found links to locate some support groups, and forums - I thought maybe it would help to speak to people who are going through the same thing as you are. Maybe they've found coping mechanisms that you would benefit from.
www.resource4cerebralpalsy.com/topics/supportgroups.html this should help you find a support group in your area (kind of counts as some me time as well because in a support group you usually get a little cuppa, and nobody judges you for venting!)
http://www.childrenshospital.org/dream/dream_fall07/epilepsy this site has some links to different epilepsy information sites, and online groups.
http://www.thesite.org this site has all sorts of health information, including dealing with anxiety.
I hope you manage to find some time for yourself as well, even if it's only a couple of hours having coffee at a friends house, it can be really therapeutic.
Good luck, and God bless
1 person likes this
@babyangie27 (5176)
• United States
2 Oct 09
Thanks Louc74,this is great stuff. I don't deal well with people I don't know in the offline sense but feel very comfortable online,so these support groups online might be good for me. I know searching online for information can be a pain so it means the world to me for you to be kind enough to take time to do this without even knowing me. I will copy the links now and since it is almost midnight I will check them out after my doctor's appointment tomorrow.
@malamar (779)
• Canada
1 Oct 09
Babyangie, your post brought tears to my eyes. You are such a strong young lady, and I salute you for that.
Tomorrow when you see your Doctor, explain all of this to him. Or, just print out a copy of this post. It explains a great deal of what you are going through, and he needs to have all of the information in order to be able to help you.
Sometimes the stress of a situation and manifest itself in other ways. For that reason, it is best not to take any self prescribed medication or supplements without your Doctor knowing about it.
Seizures are difficult to deal with because there are so many variations of them. One of the primary things to do (as I am sure you already know) it that when you notice your daughter beginning to get hyper, find ways to calm her down, and remove whatever stimulus is exciting her. That can be many things, friends, anticipating a fun event, certain games/movies/tv, anything with swirling activities, bright lights, etc.
Most importantly, you need to take care of you! She needs her mommy, honey, and you need to find the strength to be there for her. You cannot do that if you don't take care of yourself first.
I am praying that things will get better for you, and for your baby girl.
2 people like this
@babyangie27 (5176)
• United States
1 Oct 09
Thank you malamar and I am sorry it made you cry.
I always try my best to keep her calm but she is 6 and ever since birth has been a very strong willed child. She wasn't breathing when she was born and the doctors told me she wouldn't last three days. Well like I said she is 6 now and doing more then they ever said she would.
It is so hard to think of a child living with this,and it scares me ever seen she stopped breathing during on in April to think I may lose her to this disease.
1 person likes this
@vivasuzi (4127)
• United States
2 Oct 09
I'm so sorry you have to go through all of this! I can't even imagine what it must feel like to not be able to prevent these from happening. You are obviously overwhelmed with worry and concern because it is hard to just go through every day knowing this could happen all of a sudden.
I would think you have very bad anxiety and possibly even some signs of depression. The worry could be causing you to not think straight. Perhaps you should talk to someone who can help you get to the bottom of it and provide some guidance with how you can deal with this situation. It will be hard, but with professional help you might be able to handle the seizures a little bit better and not feel so horrible during and after.
1 person likes this
@babyangie27 (5176)
• United States
2 Oct 09
yes I have an appointment to speak to a psychiatrist in the next few weeks. I hope talking to someone will help even though I have never liked doing that before.
The stress of never know each day is killing me,but this is what life can be like with a child who suffers from seizures.
@pyewacket (43903)
• United States
2 Oct 09
OMG--you have so much on your plate it's not funny. I didn't realize you had anxiety problems...I've dealt with that myself, not only anxiety disorder but agoraphobia in which at one time in my life I was completely housebound. I did find a great therapist (that made house calls) and within a little while I was no longer housebound. He did NOT believe in medications for anxiety but was using the cognitive behavioral method...that is exposure therapy. I would rate my anxiety level as just generalized anxiety, but nothing extreme..believe it or not even during my worse year (2006) when I had one stressful issue after another like a snowball effect, I was at my most calm when in reality I should have gone off the deep end and completely mental. But I didn't
Anxiety can be a myriad of things..it's NOT just having a panic attack, the racing heart, feeling like one is going to die, one can actually think they are going crazy...NO YOU"RE NOT--One program I HIGHLY recommend and what I had used is the Lucinda Bassett "Attacking Anxiety" program...there's even a forum there one can join to talk to fellow folks with the same problem.
The website is at: http://www.stresscenter.com
The program (now in CDs isn't exactly cheap but one can pay in installments and the great thing is you can listen to it over and over again...there's even a relaxation session involved.
Okay question: about your daughter's siezures and your indication she gets "hyper"--I take it you're careful about her diet, right? Do you eliminate anything sugary---that in itself can make a child bounce off the walls--do you give her vitamins? Did you know many children's vitamins have aspartame as a sugar substitute and has a myriad of health issues ...and if I'm not wrong, to sensitive children/people aspartame can trigger seizures. I'm just trying to hit all bases here. What medications total is she taking? She might even having a reaction to them
Anyway take a look at that Stress Center website...it just may help.
1 person likes this
@babyangie27 (5176)
• United States
2 Oct 09
I feel crazy all the time and even joke about it,but last night scared me not only my daughter's seizure but my reaction to it. A few months back I had snow ball effect type things going on in my life and I was OK,I was very strong in my faith in God and I managed to get threw it all. But I don't know lately I seem to be on edge about everything,even minor things.
About AJ my daughter I cut down her sugar intake a while back thinking maybe that was causing her seizure increase. She eats 4 Oreo cookies a few times a week and only early in the afternoon not anywhere near bed time. Hyperness is not the only sign,also being overly upset,emotional stuff like that. heck she has even had "perfect" days where she had a great day at school and at home and BOOM seizure that night. She had them when she was born then they stopped when she was 5 months old. We moved into this place I am at now and within a month they started back up again. It could just be my anxiety but I think it could be this trailer. I want to have testing done for black mold but I can;t find a free place that will do it. I don't have her on vitamins as she is already taking 3 different kinds of seizure medication and I probably couldn't get her to take anything else even if I bribed her.
Her meds are Trileptal 6.5 MLs 2 x daily, Keppra 6 MLs 2 x daily,Lamitcal 62.5 Mgs 2x daily. the last meds are the ones we are increasing as of late. her seizures have become shorter and more milder except for last night as although that was a short one it was quite harsh. I might have spelled them wrong as i do not have them sitting in front of me.
I bookmarked the site and will be looking into it tomorrow after my doctors appointment with the regular doctor,I only hope I can see psych sometime soon.
@pyewacket (43903)
• United States
2 Oct 09
PS that link might not work right: http://www.stresscenter.com/mwc/
1 person likes this
@Hatley (163781)
• Garden Grove, California
1 Oct 09
hi baby angie I think you are completly stressed out and
probably worn out too. having a child like that and worrying
'constantly and all that you have been through has got to
have a bad effect on you. It sounds to me like you need some
help at home to care for your child and for yourself. If
you let yourself get really worn down and ill you will not
be helping your seizure prone child at all. YesI am sure you
are strong, but evenest the strongest of people have their
'breaking point. perhaps you are in panic mode, but to me'you]\
sound more like you are totally exhausted. get some help from
friends, or relatives, or a visiting nurse, you cannot handle all'this just by yourself. good luck God bless
@babyangie27 (5176)
• United States
1 Oct 09
I don't anyone who can help. I wish I did.
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@Hatley (163781)
• Garden Grove, California
2 Oct 09
hi again babyangie well you sure have my best wishes and my prayers too if that will help,also you can look to ourheavenly father for a bit of uplifting too. I think you are a very
'strong person and do so hope things will get better for you
soon. Maybe just telling us here on mylot may relieve a little
of your stress. take care now. hatley here.
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@bunnybon7 (50973)
• Holiday, Florida
2 Oct 09
i think you should try taking your meds right after she is ok and sleeping peacefully. i would bet thats why you are not taking them for fear you will not be there for her. i know my son takes them because of a childhood trauma and he takes them when hes ready to go to bed because they make him groggy. but you NEED to take them or you will have a breakdown and then what?
My dad used to tell me i needed to keep well, so i could keep my kids well. 
also, i've found that a good cry will relieve pressure. why did you not cry once she was asleep? sometimes crying is the only thing that brings me out of it. then the next day im ready to face things anew.
My dad used to tell me i needed to keep well, so i could keep my kids well. also, i've found that a good cry will relieve pressure. why did you not cry once she was asleep? sometimes crying is the only thing that brings me out of it. then the next day im ready to face things anew.1 person likes this
@babyangie27 (5176)
• United States
2 Oct 09
I hate to cry,it aggravates my already sore teeth and I hate emotional feelings of pain,like crying. I am a recovery self injurer and i used to cut,burn,punch things like this to avoid crying. I have to relearn many things.
You are right I don't think to take meds at night that will hinder me from being able to hear her,but the main reason i didn't have my medication was because i lost my insurance.
@_sketch_ (5742)
• United States
2 Oct 09
I am really sorry about your daughter, but I am glad that she is okay and that's really cool that you pay that close attention to predict that she was going to have a seizure. I think that you shaking, irritability, etc. is completely normal. It is a very reasonable reaction to something this serious and stressful.
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@babyangie27 (5176)
• United States
2 Oct 09
Yea I guess looking back on it now it wasn't all that crazy,but at the time i couldn't understand it.
@jterrock (276)
• United States
2 Oct 09
Hugs to you! I am sorry that you have to go through this. I am sure it is very hard to see your child have to go through that. It is amazing how strong children can be! And even a seizure probably doesn't stop her from being an active kid! And, yes, that is anxiety. I have really bad anxiety at times too. I use to be on medication and had to stop taking it because I have no health insurance and can't afford the pills right now. Venting is also good, that is what we are here for, to listen and give advice when needed. I am a very genuine person and I love children and animals! I just don't understand why the doctor can't do more to help your child be more comfortable. I feel for you and it must be difficult like I said earlier to see your child go through its. All you want to do, I am sure, is help her and not HAVE to go through it. Keep your head up and be strong! One of my favorite sayings is this, "God never gives you more than you can handle." Just remember that. -Hugs!-
1 person likes this
@babyangie27 (5176)
• United States
2 Oct 09
Yes I have heard that before,I just think what He thinks I can handle and what I think I can handle often end u being TWO VERY different things 
My medication situation is simular to yours,but today I went and got back on my meds. I plan on taking them soon.
My medication situation is simular to yours,but today I went and got back on my meds. I plan on taking them soon.