What's Wrong With My Son? - Epilepsy Message Board

lilluckystar · 06-13-2004, 04:40 PM

My son, Desi, is 16 months old. Last night he started sreaming in his crib about 12am. I instantly though something was wrong, because I had never heard him scream and cry like this. I got to his room and checked to seee if he was hurt, but found nothing. Then I realized he wasn't accknowledging me. I rubbed his back, but still nothing. His eyes were open, but staring and glazy. I took him back to the bedroom to my husband. We layed him down on the bed and he stopped crying and started twitching. He was still staring off into space and not accknowledging us. We tried talking to him tickling him, everything. He just layed there twitching. He would stop and then just a few seconds later he start twitching again. My husband thinks he was just doing something like sleep walking. That he looked awake, but really wasn't. I don't think so. I am taking him to the pedetrician tomorrow. MY family has a history of epliepsy. I talked to my father and he said that's what it sounds like. He used to take care of my aunt and she was like this. SHe got progressively worse and know she rarely kows what's going on around here. I don't want my son to be like that. I'm so scared. If anyone has any advise or has been through this please let me know. Thank you. I'll let you know what happens at the doctors tomorrow.

gagcas · 06-13-2004, 05:00 PM

first of all you did the right thing by getting him into the dr. office as soon as possible. so sad that he is this young. and im sure it was so terrifing. your pediatrician will be able to direct you in the right palce. maybe order some tests especially with a family history of epilepsy. and MRI, EEG, etc. good luck to you and please let us know what is going on. my sone has "E" and i know it was scary for me......oh and welcome to the board.

LisaGuthrie · 06-14-2004, 07:41 AM

Hi LuckyStar,

Sounds like a seizure to me. And the fact that you are posting leads me to believe you feel so as well. A Momma's gut feeling often tells her more then any medical test.

How long did this go on? And could you tell if his eyes were directed in a certain direction? Is your son progressing in his developmental milestones, ie: sitting on his own, pulling to stand, walking, starting to talk etc?

If this happens again, by-pass go and go directly to the ER - with or without your husband. This would get the ball rolling faster then waiting on appts with neuros etc. One would be called in and the process would start right then.

BTW, my name is Lisa and I have 2 E kids, Jenny (15) and Jake (2.5). Jake has been seizing since he was 10 mths and is considered Globally Developmentally Delayed. But, he is making great progress and we are very hopeful that as time goes by he will catch his peers. Jenny dealt with several Learning Disabilites and was treated for ADD/HD for years before she had what she refers to as a Hollywood Seizure (grand mal). The onset of "womanhood" helped hers to progress. Now she is doing very well with meds and is looking forward to her 2nd year in HS. She wants to go to college and study law. She looks at E as a means of a scollarship when that time comes. LOL, leave it to her!

So please don't paint your little ones future all gloom and doom. Many people in the world have E and live very productive and happy lives.

Best of luck! And please come back and let us know what your pede has to say!

Love and light,

Lisa and kids

lilluckystar · 06-15-2004, 07:37 AM

My son has a doctors appt. at the end of July with a ped. neurologist. That seems so far away to me. Couldn't they get him an appt sooner? I thought they would run some test right away, but they didn't. His pediatrician says it deffinently sounds like seizures, but don't worry. How am I suppossed to not worry about my baby? They just sent me home with nothing more than "if it happens again take him to the ER". My husband still thinks it was nothing more than a night terror. I haven't seen him do something like this before, but he used to stare off into space and then his chin would quiver like he was cold, then cry. I talked to the doctor about this beofre I even brought him home after he was born. They just told me he was cold and every kid does it. It kept going on, but every doc I talked to just blew it off as no big deal. Now they are saying there could be a connection. And I'm not suppossed to be upset, too late I am. How could they jsut tell me it was no big deal, when it could have been a HUGE deal? They made me feel like a paranoid mother, when there was quite possibly some reason to be worried. Did you go through this? Every doctor I've ever gone to(except his current pediatrician) treats me like a stupid paranoid mother. At least they are tryign to find out what's wrong with him, I just wish they would hurry it up. Thanks for taking time to reply to me.

LisaGuthrie · 06-15-2004, 09:25 AM

Hi LuckyStar...

(((HUGS))) (((HUGS))) (((HUGS))) Take a deep breath..

Yes, I went through this! ME! Not the Drs. Sad to say

My husband is a stay at home daddy, and I have 2 teenage kids, when at 6 mths. Jake didn't have good head control and wasn't trying to sit up on his own I was very concerned and brought it up. I was told he is VERY loved, but put him down, don't carry him around so much and MORE belly time and he'll out grow it. Jake selfweaned at 7 mths and about that same time started to wake me up at night (we co-slept) with what I thought was kicking... Looking back I feel that he self weaned because when he was in a nursing position it triggered something in him. He would arch his back and look off to the right like he was trying to see something behind him. I'm sure that this action and the kicking at night were both types of seizure activity. At his 9 mth check up I showed the pede that Jake had no startal reflex and that his muscle tone had not improved!

She gave me a business card and said to take him to see the pede neuro. The following day I made the appt., then I cancelled it, then I made it again, then I cancelled... Thinking I was over reacting... I kept the business card in my purse but put the whole thing down to so many people wanting to hold and love the little guy.

When Jake had his first seizure there was no twitching or jerking, he just fussed and fussed, cried really hard and turned blue. I thought he was just having a fit because I wasn't getting his meal quick enough and remember telling him "you better not be one of those kids who holds their breath, it wont work on me kiddo" and let it go. The following weekend, he had his first grand mal (Tonic/Clonic) I knew as soon as he started to come out of it what was going on, he was smacking his lips... I had seen that with a friend in HS who had E.

And there our Journey began! I know that you feel they are not meeting the needs of YOUR son. But remember GOOD drs have lots of patients and it takes a bit to get in to see them. As you were told if it happens again go to the hospital *WITH OR WITH OUT* your husband. This will start the ball rolling much faster.

In the mean time... things you can do to feel more proactive...

Start a journal of any funky activity. Start with the first one you saw the other night.

Get medical records from his pede. The neuro will request them and ask you fill out a release form. You can hand deliver at the first apt.

Get your family seizure history sorted out, history on your aunt and father.

Go ahead and set a 3 ring binder to keep track of all tests, billing info and research.

Right down your questions to the dr as they come to you. It's easy to feel rushed and if you are like me you may forget half of what you wanted to ask.

List out all developmental milestones. They will want to know when he rolled over, sat, reached for things etc.

That's all I can think of for now! Jennifer may have some more if she responds.

Come back whenever and we will answer questions to the best of our knowledge.

And please do not waist your energy feeling that you could have done something sooner. It will drag you down and that's not going to help your little one! If you pray... great! If not, now is a good time to start! I'm not an overly churchy person, haven't been in 10 years, but I've found over the past 2 years that pray is good for me. It helps me sort out off the crud and sluge that I'm feeling inside!

One last thing... I would not allow a Dr to place my child on Dilantin! It's hard on children, it can interrupt learning and cognitive development! Been there - done that! If I could change one thing from what we did for Jake it would be to refuse this drug and start with something else.

Love and light,

Lisa and kids