i need some support & advice on dealing w/ my sons seizures

Wendy - posted on 11/20/2009 ( 13 moms have responded )

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my oldest son is 15 now & has had seizures since he was 2 yrs old. they started off very mild, ( think the docs called them febrike seizures)- he would stare of into space 4 what seemed like an eternity but it was only a couple of mins. if u didnt know what 2 look 4 you'd never know he was having them. now hes older & having alot of growth spurts, & w/in the last 2 mnths hes had 2 seizures that wineded him up in the hospital on life support & the seizures r getting worse now , w jerking & trying 2 turn his head around completely backwards, & the docs just keep uping his meds . im scared b/c hes going 2 unc- chapelhill 4 this & they really dont understand the type of seizures hes had ( that came from the docs mouth)- anyway he has alot of contributing factors that may help in all his chaos w/ the seizures-- he had adhd, hydrocephulus w/ a vp shunt in his brain, a lil delayed in areas, but on the briteside, he has the biggest heart, & hes 1 of the most caring pple towards other pple, aninmals, & everything. hes very smart ( even w/ delays). im just kinda freaking out & paronoid i guess that if we cant get his seizures under control & he keeps having them like he is he cant keep going thru it & be ok. i have 3 other children who r "ok", no probs like michael & sometimes i feel guilty like b/c im sooo scared over something happening 2 him & im not "there" 4 them enough. if anyone can give me some advice about what 2 do, it would so be greatfully & most heartwarmingly appreciated. thnx (4got 2 mention he has a few slight autistic tendancies)

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Ashlie - posted on 01/06/2010

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As moms its hard enough to make sure all of your children get enough attention. I have a hard time and I only have two:) The other kids will understand if you explain it to them. My three year old understands and all I did was sit down with her and tell her about her brother being sick (that was the only way I could think to explain it to a 3 yr old). I also try and take her to his check ups then on the car ride home the three of us talk about what is happening and why. I honestly think that helps. My husband and I also try to make time for each child seperately whenever we get the chance. My son has had a couple of seizures due to cerebral palsy and getting medical help is very difficult when it comes to seizures. In my area there is only one Pediatric Neurologist so I can understand your difficulty in finding excellent medical care for your son. I have been considering going out of state myself for a second opinion. I think if you have the resources you should try to get another opinion. At least maybe a different doctor could provide more information to you. I've found that the more information I have about my sons condition the better I feel about dealing with it. Being informed is the key, but seirzures are very unfortunately something there isnt a lot of information on. I hope your family can get through this and your son can overcome this difficulty in his life. Good luck!

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I also forgot to add that our daughter is currently being carefully & gradually weaned off her seizure meds. She should be off them by the end of this month - we hope and pray. As another person posted, stress can lower the seizure threshold level. We discovered that with our daughter, as does puberty and the hormonal changes of the teens. We found we had to make adjustment with each of these challenges (including the ADHD) as they came up or were discovered. As we helped learn how to deal with the stress in our lives & to help our daughter learn how to manage her own stress level, the seizures began to lessen. I wish you the best as you search for a good, qualified neurologist.

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Wow. You really do have some challenges. I feel for you. My 19 year old daughter started having seizures when she was 4 - grand mal, petit mal, partial, you name it. We have been dealing with this all these years. She does not have the additional challenges Michael has, but she does have severe ADHD. I agree with others who have advised you to get 2nd and even 3rd medical opinions. You can't just accept that Docs "really don't understand the type of seizure he has". Keep looking until you find someone who does! As another person said, you are Michael's mouthpiece - and his advocate. No one else will fight for him like you will. I know it can get wearying and discouraging, but you can't afford to give up. You were blessed with this wonderful (if challenging) young man. God entrusted him to you because he must have felt you would love him like no other and you would fight tirelessly to help him. As for the other kids & the guilt you feel about not being there for them enough, that's natural. If you can get someone to help with Michael at times to free you up to spend time with the other kids, that would be cool. These kids were also entrusted to your loving care and also need mommy time. Work out regular scheduled times with each of them individually and also together when you can do 'normal' fun stuff. Life gets so tedious when it's all about the 'sick' child. Too much worry and no fun will wear them down too - not just you. When our infant son was in hospital with heart issues & surgery, I had to learn that we needed normal, fun times even then or we'd all go crazy. It wasn't easy to have fun when we had such a sick child, but our friends really helped. Enlist the aid of your friends. If they really love you, they will be willing to do whatever it is you need. I hope & pray things work out for you, for Michael and your family. God bless you all!

Gretchen - posted on 12/27/2009

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Hi Wendy! I feel your pain like it was yesterday. I fought to get help for my son Caleb and we now have it but they still have no diagnose for him. Part of his brain never fully grew and he has severe delays. I do almost everything for him and it sounds like you need some extra opinions. I am in SLC, UT and my son has just about seen every neuro well at least they know him. Caleb also has a twin Isabel and she is fine but it is a daily struggle trying to make sure I do the right thing by both of them. She doesn't really understand just yet so she is jealous and other times very sweet and helpful. I don't think that guilty feeling every completely goes away but they know how much we love them and they also love their brother too. I hope to hear from you soon. Oh ya Caleb also has many different types of seizures with a slight case of hydrocephulus. What meds do they have him on if you don't mind?

Cheryl - posted on 12/20/2009

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I understand the fear but you must continue to treat him as normal as possible that is 4most the most important thing, take a deep breath and continue on. sounds to me you have raised him with lots of love and that is all good...take another deep breath he will be fine the hardest thing I ever had to do is let my son go to Chicago by himself hes 18 yrs old. There are alot people around that do know what to do but It is always good to inform them directly before walking out the the door. He'll love you even more for letting him be a boy without being overprotected. Take another deep breath you will be fine...good luck

Shelia - posted on 11/27/2009

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I forgot to tell you one thing, It is possible that he will outgrow them, my uncle did, so keep the faith.

Shelia - posted on 11/27/2009

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your son sounds exactly like mine, his seizures started out the same way, and the bad part about it was i thought he was just ignoreing me, and had punished him for it, i felt like garbage when i found out it was seizures. when he got a little older they stopped. Then one nite i heard all this noise and he was having a grand male, after 6yrs they were back and worse. At first they were only at night or when he was sleeping which was scary because sometimes i didn't hear him. He was on all kinds of med's the doctors would increase and change them all the time. I hope i won't offend you by saying this but, the first thing i would like to tell you to do is to pray. I found out that the more i worried and tried to keep him close to me at all times i was driving myself and him crazy. Like you i was just afraid that something would happen and i wouldn't be there. My son also had adhd and i went through a lot of behavioral problems with him also. Then we found out he was also bipolor. Like your son he started to have multiple seizures, i was also in the er with him, then he started to have them in the day when he wasn't sleeping, and after he had one while taking a shower i really got scared. They were talking about surgery, but my son didn't want them cutting on his head, his words to me and others were "If they have to cut my head i would rather go and be with God". You must try to remember one thing it's not your fault and you need to give yourself a break. We as moms are going to feel that way even if we keep them with us 24/7, it never seems enough, but that's because we love them so much and that's what moms do, we try to do any and everything to help and protect our children. Believe me when you have to watch your child shake and jerk, see their eyes roll up, hand and toes curl up, and bite their tongues it's heartbreaking. But you have to try and it won't be easy to take a deep breath, say a prayer, because i know from experience prayer changes things. Be careful because kids can feel our tension and you don't want him worried about you. I found out stress can cause seizures also, so let go and let God. Remember, protect him but don't over protect him, just continue to love him like i know you do, and let God take control

Tracey - posted on 11/25/2009

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Hi Wendy,



Unfortunately your son is at a typical age when seizure disorders will often take on a new form. As you mentioned, your son is going through a lot of growth spurts which will affect the hormones in the body. It sounds as if he is experiencing tonic clonic seizures (grand mals) but you need to have your son see a qualified neurologist or epitologist who can assess him properly. Everything from exactly what kind of sounds or actions take place prior to convulsions, to the direction his eyes lock on when in these seizures, to whether it's his entire body or one side that jerks, how long they last, these are all things that will give a qualified specialist some answers to work with. And they will likely perform an up-to-date EEG and MRI as well. All of this information will aid the specialist when making a decision on which anti convulsant medication he/she will prescribe. Also, your son will require steady monitoring by his specialist until his medication is regulated and working well.



Approximately 1/3 of people with seizure disorders never gain control- or total control- of their seizures. So all you can do is take your son to a specialist who truly knows this disorder. And hopefully you will be successful in gaining seizure control A.S.A.P.



Best of luck and take care,



Sincerely,

Tracey Alderson, Administrator, Epilepsy Awareness 2009

LANA - posted on 11/23/2009

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Dear Wendy, I am so sorry to hear about your son. My youngest son had same seizures. It started when he was 18 months old, with his stares he was falling down (without shaking or jerking), the doctors were saying that its mild. Now he is 4, taking Carbatrol 400mg every day. Thanks, God, we didn't have any episodes for almost a year, right now its under control, but for how long ?! Every day, at the end of the day, I am so Thankfull that the day went without seizures.
We have to stay strong, I know it is hard, and sometimes you loose in it. But we have too. Not for us, not for anyone else, but for our children. I am hoping that everything going to be ok with your baby (even he is 15, he still your baby) . if you need to talk to someone, please email me. I know, most of the time you don't know who can you talk to, who can understand, its hard.
And remember, its not how much time you spend with your kids, its how you spend that time :)

Lisa - posted on 11/23/2009

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i went through alot of the same with my son who is now 10 ... 4 different docs a fight to get hom into uab child nero dept ... none helped .. after years i moved across country to get him in a different program and it has been wonderful.... there are alot of things out there and alot of good doctors who will help you just really have to do some research and find them ... my son for no reason that could be found had stare seizures starting at 2 and slowly progressed to atonic and patial complex seizure ... no matter how many combos of drugs he was put on he still had break through seizures and is delayed in many ways ... thanks to a really really good friend who worked in the medical field i was pushed into the right directions ...dont stop until you get your answers ..

Maureen - posted on 11/21/2009

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hi wendy im a mother of a 25 yr old daughter who has epilepsy they r not under control i have been there. it very hard to deal with it because i go through this very day with grand mals and small ones. i also have 2 other kids that r ok to and i understand what u are goin throw. my daughter shannon has a sevre epileptsy we have done every pil in the book 10 times other a peiod of 11 yrs to 25 yrs she also has had one the vns inplanted in 2000 untill 2008 because it didnt stop the serzuies and it hasnt stoped since she wears adult diapers and is usin wheel chair because the seruzers wont stop and because of this she will die if not controled she has all the seizures combind into one bullies did this to her by bangin r head off the cement and grade school and now there is now cure for her we done all there is to do to contral them but i do under stand what u r goin through. i have so much to say aabout it but it would take me 1 hour to get it done lol well u take care hope to here from u soon and just hang in there ok time will tell i do understand that they r not under contral because my daughter is the same way thank u maureen jennings

FARHANA - posted on 11/21/2009

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Hi Wendy, so sorry to read abt your sons pblems. I would probably go for a 2nd, 3rd,...opinion til a neuro tells me wats going on. Carry on demanding for answers bcos right now , you are his mouthpiece. Trust your gut. I know wat you mean, wen u say, u end up neglecting the other kids. I spend so much time on my son (10yrs) dat I do end up pushing my 4 yr old daughter. Its really hard wen one child needs your attention. But wat I do is, ask hubby to take him away, even if its in the next room and I spend some time with lttle one, even it if its just to cuddle & watch a movie. I wish you all the best, hope you find the answers from drs asap, (pls insist on dat). Take care, Regards, Farhana

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