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Discussion Starter · #1 ·
We have been struggling for 2 1/2 years to get control over my daughter's ESES (electrical status epilepticus of sleep) epilepsy. We've tried many meds and diets. Her neuro put her on steroids a month ago. Today we had a short EEG to see if the steroids are working.. THEY ARE!!<br><br>
I almost cried during the procedure. I certainly cannot read an EEG, but after looking at seven computer screens of lots of very scratchy/spikey EEGs over the past 2 years, it was amazing to see some lovely, easy-flowing waves of a NORMAL EEG! Now..the only problem is that the tech did not wait until she fell asleep. He stopped recording just as she dropped off. I was going to ask him if he could let it run another 10 minutes, but he reached over and pulled all the wires off in one fell swoop before I had the chance.<br><br>
I'm very excited about what this means (hence all the caps and exclamation points). However, there are still lots of questions, including why are we not seeing an improvement in her expressive and receptive language? Why has her teacher mentioned a regression in academic performance?<br><br><br>
Thank you all for your positive thoughts, prayers and support. I should get the official report and next steps from the neuro on Wednesday.
 

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That is <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/jumpers.gif" style="border:0px solid;" title="jumpers">: <span><span style="font-size:medium;">FABULOUS</span></span> <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/jumpers.gif" style="border:0px solid;" title="jumpers">: news!!!<br><br>
Could the regression/language issues be due to the treatment? Steriods can be pretty tough for a body to handle...I wonder if you'll see those improvements as her body gets more used to the treatment and once the treatment is over? I know the ACTH treatment isn't the same, and my kiddos were at a different age when they received it, but it was rough on them. They really didn't have much interest or enthusiasm while they were on it (in fact, they were generally cranky and tired), and I could see how that would translate to reduced academic interest or reduced interest in expanding new skills. I hope it's a temporary thing for your daughter--perhaps she just needs to get used to the regimen.<br><br>
Our ACTH treatment was only 4 or 6 weeks...I can't remember now. I noticed they were back to their usual selves very quickly after we stopped the steroid injections (and even toward the end of their injections, they seemed to be handling it better).<br><br>
There is nothing like the high of finding a treatment that actually helps your child. I am so, so, so, so, so happy for you. After all the advocating you've done, you deserve a thousand happinesses and TWO thousand pats on the back. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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That is great news! How wonderful to feel like something is working. I hope you get some answers soon to your other questions.
 

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What terrific news! I'm very happy for you both!!!
 

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Discussion Starter · #8 ·
Thank you all for your support. I'll keep you posted when I hear from the neuro next week.<br><br>
Today was a little disheartening in that she seems completely out of it and in her own little world. I just have to keep reminding myself that she is on a boatload of very heavy meds right now and that the important thing is the clear EEG.<br><br>
Thanks again!
 

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That is wonderful. I hope she is able to handle the treatment. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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<div>Originally Posted by <strong>MindfulBirth</strong> <a href="/community/forum/post/10773215"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Today was a little disheartening in that she seems completely out of it and in her own little world. I just have to keep reminding myself that she is on a boatload of very heavy meds right now and that the important thing is the clear EEG.<br></div>
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Yes. <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2"> The hardest part of treating our boys with steroids was what they were like when they were on the meds. Just trust in the treatment, and know that your little one is using everything she has to get well and stay well. For me seeing our boys so affected was a little like watching my mom go through cancer treatments....the treatments were terrifyingly hard on her, but necessary. And when it was over, it was OVER. Life could begin again...but this time, with so much more hope and happiness. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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Discussion Starter · #12 ·
<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> Thanks - I needed that.
 
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