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Ok, NOW I'm scared!

amajaneamajane member
in Special Needs

Marley had her 1st real seizure last night. It was a complex partial involving the right side of her body, lasted over an hour and it was horrible. Fortunately, she kept breathing and didn't lose?consciousness. But it was my worst fear come true.

I feel so absolutely hopeless. They didn't discharge her with any anti-seizure meds because she has to have at least one more seizure to qualify for that. I appreciate ?the neuro not wanting to medicate her unless absolutely necessary but I know she'll have another seizure...it's only a matter of time. We did get 2 doses of Diastat to take home and give her if she seizes for more than 5 minutes. $650 we paid. I am in shock.

I think the seizure is because she hasn't been sleeping well since she started teething 3 days ago (her 2 front teeth are just breaking through her gums). The stress of being sleep deprived just pushed her body to it's limit.?

So help me seizure moms. How am I gonna handle this? How do you handle the unknown? I feel so on edge. So helpless. So emotionally drained. I feel like I've been kicked in the chest and had my heart ripped out.

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Re: Ok, NOW I'm scared!

  • AB&TBAB&TB

    Well my baby has different types of seizures, usually about 10-20 a day.  Fortunately, none of them typically last longer than 5 minutes.  All I do is hold and comfort him while he is seizing, and sometimes he cries, which of course makes me cry. 

    I just wanted to tell you that I am very familiar with the heart-being-ripped-out-of-the-chest feeling.  We had Linc's seizures under control for about 2 months, and then they came roaring back, and despite the meds, they are worse now than ever before.  All I can say is that I just hope and pray everyday that we will eventually find the right combo of drugs or some other therapy that will help him.

    Hugs!  I hope that you guys will get the help you need soon.

    imageimageimageimageimage 9/07 m/c baby boy @ 18wks, 4/09 m/c @ 4.5wks
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  • J+RJ+R

    I used to work with a little girl who had really bad seizures... She had the petit mal and the grand mal... They were very scary.  I dont know what age this medication is for, but have you tried Keppra? I've seen amazing results with this med!

     

    Good luck to you. 

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  • akimboakimbo
    Oh honey - I can't even begin to imagine how scared you were and still are. No words of wisdom, but wanted to say I'm continually impressed with what a great and attentive Mommy you are to Marley.
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  • lazysusanlazysusan member
    It gets better each day without them, and then comes roaring back when it happens again.  Live in the moment.  I pray for DS often about the seizures in particular and it helps.  It feels like it gives me some control back and that I'm doing something to help if that makes sense.  (hugs)
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  • kchoikchoi
    poor baby! ?hang in there mama!!
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  • SaucySarieSaucySarie member

    Well, like AB&TB said, my babies have a different type of seizure, but it is still horrible.  I am so sorry that Marley has to go through this.

    Our neuro said that teething CAN cause them to have more seizures (in a child who already has been having them).  She recommended we buy clove oil (from like a health foods store) and rub it on their gums twice a day.  It makes the gums softer and easier for the teeth to come through.  I'm not sure why teething makes their seizures worse, but it does.  HTH and I hope she won't have anymore, ever.

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  • RamseyRamsey

    Oh sweetie, I'm so sorry that you are going through this. My sister is severely multiply handicapped and used to have seizures - they are horrible to watch.

    I hope that Marley does get on the meds that can help to prevent them. I just am so sorry that you're dealing with seizures. I'm sending you lots of hugs and keeping you and Marley in my prayers.

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  • Beantown11Beantown11
    I don't post very often, but I'm a "seizure mom" too and I know exactly what you are feeling. The day my son was diagnosed (he had Infantile Spasms that later developed into partial atonic seizures where his body goes limp), he too had a very long tonic clonic seizure and it was awful. It's been over a year since that day, and every day I still wonder if he's going to have a seizure. I don't know if that wonder or dread ever goes away. He was seizure free since June (on Keppra), then had a seizure this weekend which was fever induced. I think you just learn to live with the unknown, even though it's hard. My son has only been with a non-grandparent babysitter once, and that was only for a few hours while he was sleeping. He does go to child care, but it's in my office park and I can get to him in minutes if necessary. I won't go to the grocery store without carrying the Diastat with me and every night that I put him to bed, I wonder if tonight will be the night we end up at the hospital. I'm already worried about when he becomes old enough for sleepovers at a friend's house. Will I let him go? HOWEVER, like the previous poster said, it does get easier with each passing day. It's going to feel raw for a long time, maybe months, maybe longer. Like you said yesterday, as SN parents we're always waiting for the other shoe to drop and with seizures that's more true. I hope you feel better. I hope Marley feels better and is not impacted much by these seizures she is having. Hang in there.
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