how did u deal with the diagnosis, find your strength?

Maureen - posted on 11/21/2009

hi my name is maureen jennings i have a 25 yr old daughter with epileptic she was 11 yrs old when her seizures started , bullyies at school banged her head of the cement at grade school she was 10 then, a yr later when 11 yrs the sezureis stated i didnt know what they were at the time.i was very scard about it because i was alone with her and i also have 2 more kids who r normal. i didnt understand what epilepsy was .at the time but i know so much about it now. my daughter has very sevre seizure which r not under contal . i have tryed different pills to try and stop it but no go she also had the vns inplanted in her for 8 yrs and still the one didnt work so now at 25yrs she is wearin adult diapers and has to use a wheel chair and bath seat too. now when i met my boyfriend he didnt understand why shannon had sezures and was very hard to see her like that why. what we do to get by is understandin what seizures r and r emotioons people r differnt when it comes to sezures but talkin to each other. there is so much to say about dealing with children but u will get through this and it gets easyer as time goes on. i hope r baby will out grow it . if u need any more info i would be glad to here from u.soon thank u maureen hang in there.

Marlene - posted on 11/21/2009

Know that ITS NOT YOUR FAULT!!! Nothing you did caused this. Its not easy to handle at first, but you will come to terms with it. Please try accept this, it does make it easier to cope with and move forward. By doing this you can focus on doing what's best for your child. Harping what could have been doesn't help. As for your partner... men like to be in control of a situation, this one is out of his control and then they withdraw. We cry, men withdraw.

My son is 10 now and its been a long road up to now. He has multiple disabilities.

Once I accepted it all I could better focus on him, rather than me. It took his father 2 years to come roung, but now they are very close.

Hang in there. Prayers are with you.

Tracey - posted on 11/20/2009

Quoting Toni:

oh my gosh Libby, Yvonne and Danielle, Thanks soo much for your stories and support. They do give me ideas and hope. We were officailly diagnosed yesterday with infantile spasms, after his latest EEG showed the hypsihythmia pattern. Like you guys, ive known for ahwile something just wasnt right with our son, bc being with him everyday, Ive seen how hes interacted since born, and He started to have the seizures, I started to research. and since they gave us a few probable diagnosis, ive been doing lots of research on the things he could have. This prepared me quite well I think, in my mind knowledge is power, and thats how i cope. I think my boyfriend avioded the situation until it struck him in the face- that was yesterday. Hes quite crushed. Ive tried talking to him, but he is just in shock and absorbing it all, so i will give him time. Ive grown up with a brother with Mild CP, so ive known what its like to raise or be in the family of a child with special needs. My brother is an absolute delight, as are his friends. This is what I hope my son will be like. He is my lil angel no matter what, and Im thankful everyday for his being here. Im also glad that growing up with my brother ive learnt alot of patience that will help me out here. My dad is also a pediatric critical care nurse, so I have his support and knowlegde as well. were at the point right now of building his support team of specialists, and were starting on Sabril ( vigabatrin) so adjustment to that will take awhile. Again thank you soo much for your stories and support. Im sure we will all get thruogh the rough times and get to enjoy good moments with our lil and not so lil ones! all the best... Toni*

Hi Toni,

I noticed you mentioned the specialists are starting your son on Vigabatrin.  It is certainly not my intention to alarm you but I was wondering if you were aware of the possible side effects from this drug.  As all anti - seizure medication has some side effects, Vigabatrin is known to be toxic to the eye and can cause the loss of peripheral vision. 

I know this is a trying time for you and your boyfriend and I truly wish you all the best in the future.

Sincerely,

Tracey Alderson, Administrator, Epilepsy Awareness 2009

Toni - posted on 11/20/2009

oh my gosh Libby, Yvonne and Danielle, Thanks soo much for your stories and support. They do give me ideas and hope. We were officailly diagnosed yesterday with infantile spasms, after his latest EEG showed the hypsihythmia pattern. Like you guys, ive known for ahwile something just wasnt right with our son, bc being with him everyday, Ive seen how hes interacted since born, and He started to have the seizures, I started to research. and since they gave us a few probable diagnosis, ive been doing lots of research on the things he could have. This prepared me quite well I think, in my mind knowledge is power, and thats how i cope. I think my boyfriend avioded the situation until it struck him in the face- that was yesterday. Hes quite crushed. Ive tried talking to him, but he is just in shock and absorbing it all, so i will give him time. Ive grown up with a brother with Mild CP, so ive known what its like to raise or be in the family of a child with special needs. My brother is an absolute delight, as are his friends. This is what I hope my son will be like. He is my lil angel no matter what, and Im thankful everyday for his being here. Im also glad that growing up with my brother ive learnt alot of patience that will help me out here. My dad is also a pediatric critical care nurse, so I have his support and knowlegde as well. were at the point right now of building his support team of specialists, and were starting on Sabril ( vigabatrin) so adjustment to that will take awhile. Again thank you soo much for your stories and support. Im sure we will all get thruogh the rough times and get to enjoy good moments with our lil and not so lil ones! all the best... Toni*

Danielle - posted on 11/19/2009

My daughter started having infantile spasms when she was about 4 months old. Her diagnosis is called 'pachygyria' but other than giving us a name and a little info on the disorder, the doctors can't really tell us much. She's two now and can't even hold her own head up. She doesn't use her hands, doesn't talk, and VERY rarely smiles. We're not sure how well she can see so that's just another thing she's struggling with. When I was pregnant with her I had a feeling that something just wasn't right. When she was born healthy and strong everyone told me I was just a paranoid first-time mother. I took her to the doctor for every little thing- looking back I think I did that because deep down I still knew something was wrong and I was just waiting for the doctor to figure it out. But how do you tell a doctor that you just know something is wrong when everything looks perfectly fine? Eventually it was a weird thing she started doing with her eyes that gave us our jumping-off point to a diagnosis. We went from the pediatrician's office, to an eye dr, who ordered a CT scan, when the results of that were abnormal the pediatrician sent us for an MRI and then to meet her neurologist. When he gave us the news I took it better than my husband. For me, since I had had a feeling that something was wrong, it was more like hearing that she had blue eyes or blond hair-I'd already accepted that something wasn't 'normal' whereas my husband was just being hit with it. It wasn't until about a month after her official diagnosis that I let myself feel any sort of sadness over it. She's my angel regardless so I felt like being sad was a waste of time. But, when I did finally let myself feel hurt and recognize that there were some dreams we were losing to her disorder, I felt a little better. No diagnosis or bleak prognosis could ever change my love for her but just allowing myself to hurt for a little while helped me fully accept what may be a lifetime of care-taking and medications. Not to mention doctors appointments, therapy appointments, and the seizures themselves.
My husband and I are very very different in how we deal with things. I feel like he was a little negative about it at first. I think he expected the very worst possible scenario while I liked to keep my thoughts positive about her overcoming it. Even now, after a year and a half, we're very different. He loves her more than anything, I can see that, but he doesn't do any therapy with her when he comes home from work and he's a little more harsh about making her eat something that she may not like (she can't chew so it's a struggle anyway even if she does like the taste of something). A lot of times I feel like I'm the only one whose trying to help her develop and get strong. Something like this really does put a strain on your marriage but even with all our differences and all our arguments about it, the bottom line is that he's a good dad and he loves her- he just deals with things differently. I try not to push him to talk about things with me because that's just not what he wants to do...but there have been a few times that I've had to just say to him, "Look, I need to talk about it. I'm not asking you to fix the problem for me right now because I know that's not a possibility but I just need to talk." Then he's usually pretty good about listening to me and giving me some comfort that he may otherwise not give. He's not one to show emotion so even just a hug and a "it's ok, we'll get through whatever this disorder throws at us" can help a lot. We just both have to realize that once in a while, we've got to deal with it the way the other one deals with it- that way we don't completely lose the common ground.
I couldn't agree with Libby more!- Your child isn't just yours, but yours and your boyfriend's! My husband works full time so it's pretty rare that he is able to come with me to a doctor appointment or even be home when one of the therapists comes over. Sometimes I feel so much resentment toward him because he's able to go to work everyday while I'm the one whose at home dealing with things 24-7. But then I have to think of things from his point-of-view...Maybe he really hates leaving us in the morning. Maybe it tears him apart knowing that any day, any time, something could go wrong and our daughter could end up in the hospital. There have been times that I've just wanted to call it quits on my marriage-not because I don't still love my husband but sometimes I feel like there's just so much tension and resentment between us that it would be easier to just be divorced anyway. But through it all, we've stuck together and I think we're both better for it. Don't let this come between you and your boyfriend- it will be very hard and there may be times that you feel like giving up on each other but remember what it was like before you became so stressed. The love you have for each other will still be there, you'll just have to take a step back to see it sometimes. My husband has opened up a lot more since our daughter was fist diagnosed...but it took a while and it was frustrating. Keep your thoughts positive and don't let the stress of things become greater than your love for each other and for your child. Let him help as much and as often as he can! Keep us posted on how your child is doing, too! Good luck with everything and remember- no matter how hard it may get, you're the best mother for your child! Nobody can ever take your place in their life!

Yvonne - posted on 11/18/2009

I can't agree more with Libby...the key to any successful relationship is to communicate! Having a child with a diagnosis like infantile spasms is heart wrenching! You go through a grieving process, only there is no closure. On a different note, my son was diagnosed with Infanitile Spasms at 8 months and we were given a horrible prognosis, the he would not talk or walk or do anything for himself....well, he's 20 now and he doesn't walk, he runs, skips, hops everywhere he goes! He is delayed, but he is leading a wonderful life with friends and activities. He has a girlfriend and loves life! A diagnosis is just that....a diagnosis. Only God knows what's in store for your child. As the saying goes....work as though everything depened on you, and pray as though everything depends on the Lord. Ask lots of questions to the medical professionals, find out about Children Resource Centers, read, take notes, ask your boyfriend if he would like to research something. get him involved. You will be the best advocate your little guy has! It is a tough job to be a mom....even tougher when there are medical needs, but you can do it! God won't give you anything you can't handle, and he will be there to hold you and your son along the way!

Libby - posted on 11/16/2009

You know, Toni, I wish I could give you a really great solution! I am 25, so young (I like to think!) like you. My husband and I have been married for three years, and our son is just over 2. He (my son) started having seizures around 9 months and we still don't have a diagnosis--well, other than "epilepsy". We're still at the hospital a lot because he has a lot of other symptoms that aren't typical of a seizure disorder, so we are trying to find out if there's something else causing the seizures, that is also causing these other "mysterious" symptoms. Anyway, I'm just giving you a little background so you know where I'm coming from. We don't have a diagnosis, and some days I feel like if we just HAD one, things would be so much easier. And in some ways, yes, I do think that's true. But in other ways, over time, I've come to realize that most of my trouble is just in the fact that there's something wrong with my child--something wrong with him that I CAN'T FIX, CAN'T CONTROL, and can't even ANTICIPATE. I don't know when he'll have seizures; I don't know when he'll have a bad day or bad week or bad month until it's staring me in the face.



I worked for years (and years!) with children with special needs. I loved it, and I could never understand why parents struggled so much with their children. From my perspective then, I just saw a child who had capabilities, who was amazing, and just needed more love and time--but what a great opportunity! Now that I have my own child with "special needs," I find that I can COMPLETELY understand what those other parents were going through. It's not that they don't love their children or don't want to work with them, but it's emotionally exhausting to know that you desire to care for your child and feel like you're HELPLESS to do it.



These might not be feelings that you're feeling, but I know for me, it's been a real struggle. I think time is something that has helped me, but also just redirecting my thoughts/way of thinking. When I focus not only what I can't do, but on what my son CAN do, I am much less overwhelmed. And when I think of what a BLESSING he is and how thankful I am to have him, I am much less overwhelmed. This is the child God gave me. And he is wonderful just the way he is. Now I focus on all of the things he does that amaze me and make me smile.



As for the relationship thing, that's also tough. My husband and I have certainly grown through this past year + of my son's condition, but it has been hard. Like your boyfriend, my husband keeps a lot of it inside while I'm more of a talker. Sometimes I feel like he doesn't recognize how hard it is to constantly be caring for my son and going to the hospital since he doesn't do those things. BUT, I saw my mom and dad get divorced when I was in high school and I know for sure that much of their conflict first stemmed from their inability to communicate to each other when it came to my youngest brother--who has down syndrome. My mom was always going to the dr. (and I would often go along) and my dad was always working. My mom was the advocate, my dad was barely involved. Don't let your relationship with your boyfriend fall apart because of this. This child is YOURS. Both of yours. And where you are struggling, you need to communicate. And when you need your boyfriend by your side, you need to tell him. I'm learning that myself, with my husband. I don't want the same thing to happen with us that happened to my parents. If I start out by trying to find that common ground, like you said, he and I are going to be much better poised for the future. There's no exact way to get there, I don't think, but you just need to communicate, in whatever way--so that he knows where you're at and you know where he's at. It's crucial.



Okay, I'm done babbling now! I hope that maybe even just a little of this helped. And maybe you'll get some more answers from other moms who have been there. :)