Hi. My name is Sandra, husband is Derek. We just found out yesterday after 2 years of hell that our daughter has epilepsy. She started taking tegretol today and we are watching her every move. She seems sleepy, more than normal. I guess as long as she doesn't have any more...right. She is 4, will be 5 in December. I have so many questions!! We have no support. My husband is in the USAF and we are stationed in Alaska. They are moving us though, since they don't have the physicians nor the medical facilities here to help her. We have flown to Washington and Anchorage for her to see Neurologists and finally we got some answers. Do many of you have more than one type of seizer?? My daughter has Focal and Partial Focal seizers along with(I can't remember the name)seizers that look like tremors. She will be totally awake during these, just that one side with one side will shake(leg and arm). She won't be tired but, we have noticed when they increase is before she has a larger seizer. She had "drop down" like seizers 2 and a half years ago but, her Dr at the time didn't think anything of them. I couldn't wake her up and she would wet or vomit or BM or all afterwards or during. Right now she has ones that look like a temper tantrum....she'll be on the floor kicking and moaning, turning her head from side to side. Afterwards, she will have no memory of it or about an hour prior and sleep for 16-18 hours. Others, she stares off and becomes tired, she won't always sleep though. And, then the convusion(sp?) ones....my husband and I think of these as the worst ones only because they look terrible. She will vomit after and become irritable(sp?). They usually happen at night, is that also common? We love her so much and want to help her as much as we can. At least we finally have something to call it and we can look info up on internet but, it's not the same as talking to people who are going through it. Any info you all have would be so helpful!! And, info on her medication would be nice too. Try not to scare us though...okay. Thank you for your time! Love and Blessings.
Sandra & Derek

{{{{Sandra and Derek}}}} (hugs to you)

YOu have come to the right place. There are several of us on here that don't have "E" ourselves, but our children do. I KNOW exactly how you feel. We went for 3 years before we knew what was wrong with our daughter. "E" was not even brought up until I actually SAW her eyes roll back when she was 4.

Does your child have any developmental delays? My daughter had trouble with speech, and we have been doing speech therapy. Now she is in school, she is 7 now, and we are noticing some definate learning disabilities. I think they are seizure related. She loses her short term memory, so unless it is drilled into her head and into her long term memory she loses it. If we teach her 1+1 today, and she has a seizure tonight...poof, all that work is gone. It has been tough.

Believe me, I have been where you are. It must be hard to be in Alaska with all this going on. My sis lived there for 4 years, and her daughter needed some neurological attention. She had to see an adult neuro until they could get out of there. But that is better than nothing!

My daughter started on Neurontin, but it isn't a common one to start with and she didn't last long on it. We are now on Tegretol and she seems to be doing fine with it. You will notice that over the years, with growing spurts especially...that you think you have the seizures under control, only to have them start again from the body changes. That has been my biggest frustration! So we go back, get a blood test, and most times she has to start taking more of her meds. But all in all, we are dealing with it, living with it and doing fine! She plays soccer, swims, chases the boys (ugh) and has a great time in school!

Take care and I hope this helps a little!!
welcome to the "E" group!!

Lindy

Lindy, thank you so much for replying! It does really help. You asked about developmental delays in my daughter.......she was always ahead at everything as a baby. She sat on her own at 4 months old, said her first word at almost 5 months...she was very bright and smart/quick whitted. But, around 18 months, she seemed to decline a bit. I taught her to count in 5 languages...she was like a sponge...but, now......she has a hard time with short term memory and her speech has gone down. They say she doesn't need theropy though but, she slurs a bit. Poeple come up to me saying she's a little smartie and she talks so good. She says a lot of big words but, she doesn't pronounce things correctly for her age. After a seizer she won't be able to speak very well, not all of them but, some. We have taught her numerous times to spell and write her name....to do the alphabet but, she forgets everything! It does get very frustrating at times. She remembers her address..that's about it. But, she can tell you things about 2+ years ago and even what people were wearing. She'll say things like"when I was 3, you were wearing a yellow and blue shirt and we went to the park and played games". Songs she hears on the radio, she will recall what movie she heard that song in.....and she is right! But, these other things, she can't get!!! My husband is more patient than I am at repeating over and over again....it just want to cry. Does your daughter do the same? I had to call the Dr on call tonight because my daughter was having some effects that concerned me. She's sleepy and dizzy....that is mentioned in the instructions but, she started to halucenate(sp?), batting her hands in front of her face. She thought there were bugs in her face. It concerned me a lot because we were in public and what if she was in school?? She is only 4, will be 5 in Dec. not in school yet but, you know. How is your daughter on tegretol? Did it take her a while to adjust to the med? She has to see her Dr tomorrow before we can give her the morning dose. Does anyone else have this in your family? We have no idea where this came from, no one that we know in our family has had this or anykind of seizer for that matter. And, the Dr's don't really give you too much info...they expect you to deal with and research it yourself. Which is why I am so happy I found this site. Thank you for the welcome Lindy, we really appreciate it! Please feel free to email me with any info you have and to let me know how your little one is doing. Take care!
Sandra & Derek

Sandra and Derek:i understand completely what u are saying.....my daughter also has focal seizures..and the tremor seizures...with her focal seizures it causes her to drewl alot....my daughter currently takes valporic acid and tegretol...but nothing so far is helping the focal seizures..my daughter is also 4yr old and she was diagnosed with "E"2yrs ago.....i hope everything goes well with your child......take care cause we all care and understand.....

Hi,
I am so sorry for the pain you have been through. Now that you know what is going on it should make things a little better.

My seizures begin as focal (twitching hand), which go to partial (entire right side), then sometimes end in grand mals (unconscious and whole-body convulsing.) I have a pretty good warning period, so I can get myself to a safe place when I know a seizure is on the way. I am 49 years old, and began having seizures two years ago. I have a lesion on my brain that my Doctor has recently discovered is the result of a blood clot. I take Carbatrol and Lamictal. I absolutely hate having "E", but I keep reminding myself that there are much worse things I could be suffering from.

This is a wonderful place to come and get support, find information and share your hopes and fears. Most of us have "been there", either as spouses, parents, friends or family of "E" patients, or because we have the disease. I hope you will find the answers and support you seek. Meanwhile, please know that you now have lots of positive thoughts being sent your way by a huge group of caring people that frequent this board. Be well, Kathy

Mommy4 & Kathy,
Thanks for the encouragement......your daughter is also 4, it's so sad to be so darn young. Does she understand what she has or know?? Mine only knows about the tremors that Kathy mentioned only because she is awake during them. She is ashamed of them and it breaks my heart. She will hide her arm from us and we will notice her leg shaking. It used to always be just her left side but, the past 2 months, we have seen her right side do this as well. You are all right, you all are really great and make us feel so much better. It is so stressful....aside form dealing with a family member with this, to have it must be tough. You all are amazing!! We also have a 10 month old girl (Tiara) and one due Feb. 17th (boy)!! We try to make things as normal as possible at home but, since Aley won't take her med on her own, she gets lots of "treats" that we sprinkle her med on. We have to make sure she doesn't share these "treats" with other and her siblings. That would not be good! Well, thanks again for helping us out. It is really an emotional booster to have you all to confide in and to ask questions.
Love, Sandra & Derek

Hi,
WOW...a baby boy...how exciting! I wonder if he'll be a Valentines baby. Anyhow...I'm sure that your little one will get over being embarrassed as she matures and also as she understands what's going on with her body. I have to tell you that it is very frightening to have seizures. I am terrified during mine! I'm not telling you this to upset you. I just think it would help you understand what your sweetie goes through. When she hides her little arm I think she may be trying to make it go away. As an old lady (at the ripe old age of 49) I find it difficult...I can't imagine being a small child. Hugs definitely help me!!!! http://www.healthboards.com/ubb/smile.gif

Back to the baby subject.....my first grandchild is due January 14th. I CAN'T WAIT!!!!! Maybe we can swap baby stories. Have you picked a name? Ours will be Alex if it's a boy, and Acadia if it's a girl. Either way I can't wait to hold that little one in my arms.I guess I should get my big butt off to bed. Hope all is well, Kathy

Hi Sandra and Derrick, welcome to the board, hate that you found us this way...

My name is Lisa. I have 2 E kids. My daughter 14 and my youngest son Jake 22 mths. I also have a 17 yr old who's only issues are his age http://www.healthboards.com/ubb/wink.gif

They both have Temperal Lobe Epilepsy with a left focal. However, their seizures are very, VERY different. I've learned that E is as individual as... well the individual.

I hate to hear when another family has to start this journey. But, from the sounds of things Aley's seizures may not have started until recently since she's such a good little talker.

DO expect (or at least don't be surprised) some set backs developmentally, and please be aware of learning disabilities. It may not show until she starts "big kid" school. Jenny was only recently diagnosed, Sept 8 of this year. However, I think that she's been seizing since she was tiny. Just not in a way that we would have recognized as a real seizure, I put it down to ADD which she is being treated for as well. Jenna's only had one seizure that's generalized. However, she did have some LD's and speech issues when she was younger. She spent 2 years in speech therapy. And in the 6th grade we had her tested for related language disorders. She wasn't reading right. She would read every other line and skip every 3rd or 4th word. So you can imagine as she got older and had to read directions for herself that she was really missing a lot of information. She spent a year and a half learning to read correctly. Jenny is on 200 mg Tegratol twice a day and doing very well with it. It made her VERY tired for the first 4 or 5 weeks. She has never been a napper and after she started taking it I would come home from work to find her sound asleep in the middle of homework. So, far she's not had a "spell" since starting her meds.

Jake has been seizing for a year this weekend. He was 10 mths when his started. There was no doubt that his were seizures. The second one he had generalized to a grand mal (also called a Tonic/Clonic or TC). His have came in wave after wave after wave. For awhile he averaged 30 a month. ***ssshhh... but he's not had a seizure now for 32 days... ssshhh***. Jake was behind a little developmentally, not sitting up on his own, not crawling or pulling to stand when he started having them... and boy, let me tell you - they wipe a little guy right out. He lost all his words, and was pretty muchly a rug weight for a long time this year.

He is now walking everywhere and doing most of the things a little boy should be doing. He is still very far behind, but he's blown through about 6 mths worth of therapy goals in 2 weeks. So... we are keeping our fingers crossed. He is currently taking 80 mg. Lamictal and 12 ccs of Trileptol. At one point he was on that, plus Dilantin and Tegratol. So he was a very messed up little fellow for several months. We have him on a waiting list for the Ketoganic Diet, if he's still seizing we will start it in March 04.

You are doing the right thing by coming to the boards and learning as much about szs as you can. Ask questions, doen't be shy at all... everyone here has been wonderful about giving my lil guy a voice. I had spent several months on childrens E sites, but found that the Mothers couldn't really tell me any more about seizures then he could. I wanted to talk to people who could tell me what was happening to him and they have.

A few pointers for new E parents...

* keep everything in a journal - at least for a little while. What she's eating, her sleep patterns, seizures, how she was acting before she had one, how she acted following... this will help the dr rule out food allergies, etc.

* get several on video if at all possibe, especially with living so far from the neuro. A picture is worth a thousand words. This will also allow you to share with anyone she may stay with, what one looks like, how she reacts and how you and your husband react.

* order the book "Seizures and Childhood Epilepsy, a Parents Guide" by Dr. J. Freeman of Johns Hopkins. It will answer so many questions, give you advice on how best to communicate with Dr.s etc. I may have to edit the name in... I'm at the office and don't have it right in front of me. BUT it's been a huge comfort to have a "users" guide so to speak.

** ASK questions, there really is no dumb questions. Sometimes the Drs are so use to the terms that they forget that the rest of us have not had the education that they have. Keep a note book (we use the journal) to write down things as you think of them. I've even sent the list ahead to the neuro so he has time to look at it before we get there.

*** TAKE CARE OF YOURSELF!!! Sandra, it's a hard road to travel. Don't waist your energy in blaming yourself or feeling pitty, that energy is better served learning about E or in your case growing Aley's little brother! Congratulations!! http://www.healthboards.com/ubb/smile.gif

I need to scoot. Feel free to ask any questions you need. I'm not normally on the site on the weekend and this week has been a total loss at work, so I'm so far behind on keeping up with everyone. But, I will check in and hope to find a moment or two.

you will be in my thoughts and prayers...

Love and light

Lisa and Kids

I can only add that tegretol makes me sleepy, I always try to get the neuro to schedule my doses close to a time when I can nap afterward. Epilepsy is bad enough for adults let alone these little children. I feel for them. Thank goodness they have strong parents to take care of them. My nephew has E really bad and my sister is a strong wonderful parent. Take care.

------------------
Cathy

Lisa & Mommy-****isa, I feel for you so much having 2 little ones with this. I thought it was hard with 1. Does it run in your family? Either of you? No one in mine does, which makes it confusing for us. Do I have to be nervous about my 10 month old daughter and my soon-to-be baby boy? Your son was on a lot of meds....poor little guy!! Can they out grow these?? I've heard that some types go away after puberty(sp?) or can start around then. It makes me sad to think that Aley feels scared or ashamed. I notice she gets loud and hyper sometimes before some of her seizures. The food allergy thing really hit a spot because that is something both my husband and me thought at first. She has exzema(sp?) and it seems to get worse if she drinks too much milk. We asked about that diet but, every Dr we have mentioned that too has pretty much told us to forget it and that it is so hard to keep up. They don't understand we are willing to do almost anything!!! Most parents are! Keep me posted on how your son is doing and how the diet is working for him. Thank you both for the reply. I am still in shock of how loving and informative you all are and so willing to help me out with questions. You are better than Dr's are and anyone I can talk to. I am so greatful to the net!!!! And, to you all!!
Love, Sandra & Derek

OMGosh Sandra, you are living my life. My daughter sounds so much like yours!! She can remember things from a long time ago too! She can tell you things you wouldn't think she could ever remember!! But like I said...the everyday things are just not sticking! And Tiffani was meeting ALL the milestones on time until she was 18 MONTHS OLD!! Seriously! Then she suddenly quit talking. Completly. It came back first in just sounds. Then she started saying words again, but only the first part. She couldn't finish the word.

Who told you she doesn't need speech therapy? I am no doctor but let me tell you what a good friend of mine told me ( a speech therapist) OK: here goes....she told me that even if a child seems like they are talking well....if she doesn't start making the right sounds by the time she starts learning to read...she will have a hard time learning it. Because we learn to read by first learning the SOUND that a letter makes. Then putting those sounds all together. If they are not making the right sounds, they are not going to get the right word out. Does that make sense to you? I had my daughter tested by the school district. Most of them have an early intervention program that can help you and have her evaluated.

Anyway, my daughter is taking Tegretol, and we like it. I haven't seen any side affects and she actually went 3 months this summer with no seizures. They have started back up recently, and they seem harder this time..but she has a 24 hour EEG next month. Hopefully some more answers!!

I just thought of something....Tiffani flaps her arms up and down also. Isn't that strange? They really are a lot alike! We thought when she was little that it was just her personality! It never occured to anyone that those were seizures!!

No one else in my family has "E" or any type of seizure activity. But that is ok, my daughter will become a stronger person because of this!!
I have 2 other children. My son michael is 14, and my son Jeremy is 11. They are so great with her! At first it was scary for them, but now they even remind me at times to get her meds!! lol lol

talk to you soon!
Lindy

[This message has been edited by momof3mjt (edited 10-24-2003).]

hello sandra.yes my daughter knows about her "E"....she gets very frustrated with the tremors and the unsteadyness on her feet...but she doesn';t let it get in her way learning or doing new things....like cutting paper and so forth is challenging but like i said she doesn't let it stop her...she doesn't get embarassed or nothing...her friends in preschool are wonderful in helping her if needed and the teachers to of course....i have 4 children ranging in age of my oldest being four and my youngest 8months.....3have been diagnosed with "E"and my 3yr old is now showing signs of seizure activity...none of them let the "E" get in their way...take care and talk to you again.*

Hi Sandra and Derek, I was diagnosed with 'E' about 7 years ago, but am sure I had it longer, I get seizures at night (nocturnal) from what my parents say and my Girlfriend, they are G/mals which last about 2-4 mins. I never know about them when they happen, but feel tired and have headache in the morning. In your very first post, you said that you tried to 'wake' her when she was convulsing, take care, as this can in some cases prolong the seizure! I am now 30, and on Epilim(valproate), and as I enjoyed science at school, I want to know as much as possible about my condition, that may sound weird, but i like to know what my body is doing (books,web and others who have seen me when bad). Sorryabout the ramblings, but hope any info can help put you all at ease. Adam http://www.healthboards.com/ubb/round.gif

Hi again, having just read momof3`s post, I thought that it was just me who had a really bad memory for things that should stick in head, I remember unusual things too! I can remember all the Auto-number plates that my family have had since i was 5, all the mobile numbers I`ve had in last 5 years, and Chemical formula from class at high school. This seems to prove that 'E' does affect our memories. I am now taking Omega 3 supplements (Oily Fish) they are supposed to be good to boost brain performance, ( and are good for heart too) Hope this helps, Adam (still exploring the Garden!!) http://www.healthboards.com/ubb/wave.gif

Hi Sandra
I just wanted to put my two cents in. I've had E since I was 4 years old, but only recently was diagnosed. Like your daughter, I have varied seizures and vomit terribly afterwards. From what I understand, I had no developmental delays. However, my seizures "cycle". I'm fine for periods of time and then I have a lot of seizures. During the times I have a lot, thinking is difficult. When I was in school, I had a difficult time during these periods. I have memory problems like those discussed by the others. At work, they kid me and call me the "Rain Man". I remember the strangest things and don't remember the easy things! You have a lucky little girl - to have such a great mom! Love can't make your daughters epilepsy go away, but it sure can make it easier to deal with. Take care. Jaclyn

Lindy,
I want to meet you soooooooooooo bad!!! I can't believe how similar they are to eachother. I wish our daughters could meet one another, seriously! Or even talk on the phone. The shaking hand thing, my parents said I did when I was younger, I am finding out a lot of things I didn't know about my childhood. My Dad thinks I was having seizures when I was a child. I used to throw what looked like a bad temper tantrum, kicking and hitting things.....my parents would punish me until they took me into the Dr and they were told I had a blood sugar problem(hypogylcemia- with a slow pancreas(sp?))and I had ulcers on my kidneys. My daughter does the same and when I took her to the Dr about the tantrums......which she would have no memory of and would sleep for like 16 hours afterwards...the Dr said she was having temporal lobe seizures. Does your daughter have those also? And, the hand flapping, she will also have a burst of energy sometimes and run around. We would tell her to stop but, it's like she doesn't hear us. Well, I should get going, I have lots of replies to do. Take care and give your little one hugs!! If we could get the kids to talk sometime...let me know. Talk to you later!! Love, Sandra & Derek

Mommy4,
Goodness, you have your hands full! Possible 4 with seizures? How does that happen? Can it be that hereditary? So, do I have to worry about my other children as well? This is so hard with just Aley having it, I couldn't imagine more. It's so stressful for us right now, so many changes going on in a short period of time. Hope your weekend is going good...
Love, Sandra & Derek

Adam,
Hey.....you have yours at night also?? That is when Aley has most of hers also. I bet the memory thing can be frustrating......it's crazy though that she can remember things from when she was 2 just like it was yesterday but, we have had to really work hard on a daily basis just to help her with her alphabet. She forgets letters and mispronounces them really bad. She was like a sponge before this and I taught her to count in different languages(5) and she took it all in and would repeat them all the time. Then around 18 months, she wasn't grasping things anymore and her attention span became so short. The things she remembers are not t he important things we want her to remember and the things that are so important, she can't recall. It's almost like childhood alzheimer''s. I don't know how she is going to do in school, I am nervous about it. So, you know what she is going through also with this. It's so frustrating for me though and I have my husband reteach her alphabet and things like that because my patients get short.....I feel bad but, she used to know these things that we have to go over ALL the time. It breaks my heart. What types of seizures do you have? Do you also have a variety of them? Aley has shown 4 different types. She has had 4 EEG's and 1 MRI but, they all came back normal. Talk about frustrating!! We had no answers or meds for her....she wasn't doing them on those but, I told the Dr to come stay at my house at night(when she would have them) and see her seizures. Right now I think my daughter had one, she can't talk well and is very irriatable!! Man I wish this would just go away!!! I wish I could take her place!!! She gets so irratable(sp?) and crabby afterwards.......what do we do? Sometimes we feel like spanking her because it gets out of hand and we are so stressed the way it is....what is it that we need to do? Sorry....I am just lost right now and feel for her. Poor baby! Did and do you have a lot of support through all of this? This site is amazing....I don't know what I would do without you guys!! We are so lucky! Take care and hope everything is going good your way.
Love, Sandra & Derek

Jaclyn,
You do the same!!??!! Why did her Dr tell me what I was saying wasn't due to seizures?? Man, you all need to talk to this guy!! JK My daughter would've had help a long time ago if this Dr knew what he needed to know. Thanks for the encouragement, I really love the support and it has help me and my husband greatly. Hope we all can stay close and support eachother. I feel bad because I don't yet know much to share, so I am no help to new people asking questions. But, I do have love for anyone going through this. Take care!!
Love, Sandra & Derek

Lisa,
Hey, thanks to your great idea, I made a diary for Aley and am putting in the info you mentioned to. We will take it with us to appointments and study it ourself. We won't rule out the food issue because that is something we thought at first anyways....so when you mentioned it, it made me want to track that more.... Take care Lisa and let me know how things are going for you as well. Things are going smoother with her med but, she isn't "herself" yet.
Love, Sandra & Derek

Hi Sandra,

Aley will get back to her self soon enough. It took Jenny about 4 weeks to adjust to Tegratol. The only thing she is really aware of that's new or different is word recall.

She says that it's that feeling like it's right at the tip of your tounge and can't get it out. It's worse for about an hour after she takes her meds.

Have they done a full metabolic study on Aley? If not it's something you want to push for.

I was going to tell you about another book I've picked up this year and kind of followed. It's "Super Immunity for Kids". It deals with diet and how different foods can cause different systems to dysfunction. It also just gives good sold advice on keeping kids healthy. Being sick can trigger seizures in children if they have a lowered seizure level.

Something else I wanted to share is a bit on the Mom and Dad relationship level. My husband and I have worked very hard at keeping communications open between us. It's not always easy, but you need to share your feeling with each other. And you both need to understand that you have a common goal - Aley! You may not see eye to eye on her treatment all the time. That's OK. But, you need to talk about it.

Ralphy (my husband) isn't really sold on the Keto Diet and he's really hoping that we don't have to go on it. It took us months for this little bit of information to come to the surface. I was kind of shocked. I just thought he felt the same way about it that I did. It's something we need to try! Period!! Let's do it NOW!!!

By talking about it, we've been able to meet on middle ground. He was the one who placed the call to put him on the waiting list. That really meant a lot to me.

I guess what I'm trying to get at is that it's a team effort. I waited for Ralphy to come to terms with the fact that we did view this differently. It took several weeks. But, by not forcing the issue he is more at ease with the dicission and feels a part of it.

... And remember to take care of yourself... OK, now I feel like you mother so I'll stop http://www.healthboards.com/ubb/wink.gif

I wish we could get everyone here together... Kids, grown ups, everyone... It's good that you found Lindy and Tiff. She's a great Momma!

Talk soon, Love and light!

Lisa and kids

{{{{{LISA}}}}} I am not the only great mom here! (you)

Sandra, you said she has had 4 eeg's and an MRI...have they tried a 24 hour EEG? Where Aley would wear the wires for a full 24 hours, go home with you, and do her normal routine all day? Something might show up with that.

Tiffani is having one on Nov. 19 & 20. I am getting a little nervous about it, but hope it will help us in helping her.

Take care!! and Yes, I wish there was a way we could all meet!! Somehow!

Bye now!
Lindy

Lisa & Lindy,
Hey! Lisa, yes we looked into the metabolic issue for the past year. She had some abnormal blood results.....they thought at first that she had a metabolic disorder...where her body wasn't digesting red meat protien properly. But, after MANY more tests, they ruled it out. Now, after 2 years and 4 Neurologists, 4 EEG's and an MRI......they said she has simple partial seizures. My parents are in denial and I don't know what to do about it. They keep telling me that the Dr's don't know what they are talking about and that she will grow out of this....in some ways they bring my hopes up when they say that, you know. I wish that were the case. Do you guys and your kids get the flu shot?? Aley's Dr said to get hers done but, she REALLY freaks out during a blood draw, let alone a shot. She has put herself into a seizure. She just had blood drawn....I wish that they would have done it then instead of putting her thru that again..... It is so hard. The Dr has also mentioned the 24 hour EEG but, we are in Alaska and I don't think they have the technology yet to do it at home. They said that they don't have a facility to do it in the hospital. We do want her to have one though....given the fact that they always want to do them in the morning when she normally has them at night before bed or when she is sleeping. Did your children test positive on the other ones too?? Or just the 24 hour one?? My husband and I have been so stressed out that the "D" word has come up. We love eachother very much but, we are under a lot of stress not having the Dr's we need here for our daughter and having to fly everywhere. We have not really been able to think about this pregnancy, it has gone by fast. And, it seems the more stressed we are, the more often it seems Aley has a seizure. I know she feels our frustration. We have no one here to talk to about Aley........but her Dr. No support and with my parents denial of this, we really feel alone. But, you guys are the only one that help us learn and to heal and deal with her condition. I blame myself, thinking if only I wasn't so stressed during my pregnancy with her, she would be okay. I was a single parent her 1st 2 years before I married my husband. He considers himself her real dad though.... but, I don't know what happend to her, why she got this when NO ONE has it!!!!!!!! Now, if she has children, they could get it. It's like it started with her.... Although my Dad thinks I had something like this when I was younger. Sorry for rambling on.......I'd better go before I start crying! But, I will look into her getting a 24 hour EEG, I do think that would be important. Take care you guys and hope to hear from you.
Love, Sandra & Derek

Oh sandra, I do wish we could chat more often then on this message board. You said the military is looking into moving you back to the lower 48, to get the medical help you need. Is there any chance of that happening soon? Maybe your hubby can talk to his commander about how dire your situation is. One other thing might be, if they can tell you where you will be going, perhaps you and Aley could go sooner? And your hubby can meet you there?

PLEASE DO NOT BEAT YOURSELF UP OVER THIS. There is nothing you can do about it, there is NOTHING that you did to cause this. I carried my daughter to full term, the best and healthiest pregnancy out of all 3 of mine...we have NO family history of anything like this. She is the first. It just happens sometimes.
I know it can be hard on a marriage...you just have to know you are not alone in this. Vent to us, not to him, I know it is hard but don't stress too much over this. I used to worry about it all the time, but that was just making all of us miserable. You can't change it, and worrying is just going to make you sick too.
Have you visited the Epilepsy Foundation Site yet? I wrote to them, and they sent me a huge packet of stuff about epilepsy in children. Tell them your situation,and they will find things to help you through this.

We are here for you!! Keep in touch with us and like I said before, vent to us and love on your hubby!!!

take care {{{{hugs}}}}}

Lindy

Lindy,
Hey hun. You made me feel better. I do feel guilty, I guess that is a process we all go thru. Yes, the military is trying to get us out of Alaska. I don't know where we are going. I wanted to be close to my family in ND but, I don't think that will happen. We will probably be stationed somewhere in Washington (McChord AFB), they also mentioned North or South Carolina......or Texas. It's all up in the air right now. They said it could be 2 weeks to 3 months before we have orders but, they can also deny us. Aley's pediatrician(military) wrote the paper requesting to be stationed elsewhere because there is NO ONE here for her. She started on her increased dose today.....I felt like taking her off it today......she slept almost the WHOLE day!!!! That is not my daughter!! She had 100mg at 8am...100mg at 2pm and then i had to force her to wake up for her 8pm dose. Next week she will be taking 150mg 3 times/day. Isn't that a bit too much?? She is going to be a zombie!! Why does it do that to her. Is your daughter thirsty ALL the time too??? Aley drinks constantly!!! It's good for her but, man...... it's crazy!! I am so tired......it is so much easier to go outside the house to work and come home to take care of the family than doing daycare. It is a lot of work!!! I am cleaning ALL day and you can't even tell!! I have a new respect for daycare providers. And, the parents come here to pick up their child and they complain about how tired they are.....i just stand there and nod!!! I worked for medicare before.....that was stressful but, only my brain was tired!! Doing daycare, my whole body is tired!! I was going to work at the hospital but, with Aley and even my baby...I don't trust people very much. Especially with Aley. Well, I had better hear off to bed. Long day tomorrow! Take care and thanks for being there for me. you don't know how much it means to me. Oh, I did ask for a packet from the Epilepsy Foundation..I should be recieving it soon. Talk to you later!
Love, Sandra & Derek