Epilepsy Foundation

Lori Miotke
  • Female
  • South Saint Paul, MN
  • United States
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Lori Miotke's Discussions

Sleep and Epilepsy

Started this discussion. Last reply by Lori Miotke Mar 26, 2013. 5 Replies

My 6 yr old daughter, Leah, is heading to Mayo today for more testing.  She has been diagnosed with Atonic Seizures about 3 years ago and has responded well to meds.  About 2 months ago she started…Continue


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At 11:25am on October 27, 2011, Becky Sabin said…
Thanks Lori, that was very helpful. I'm glad to hear your daughter is doing better. :) thanks again! -Becky
At 2:40pm on July 6, 2011, Lonya Gardner said…
I so understand. What if they (Jacob and she)  are just being a pain in the but, how can we (MOMS) tell the differnce. they cant just get away with it but what if it is seizure related then what? Lonya mom to Jacob
At 12:50pm on December 17, 2010, Melissa said…

Thank you, I hope she is ding well.  We live in Buffalo and go to MINCEP and now (as of yesterday) the UofM to.

At 11:36pm on December 2, 2010, cholesmom said…
my daughters first signs of epi was watery eyes and a feeling she described as an icy feeling in her sinuses.
At 7:52pm on October 22, 2010, Heather said…
Oh Lori thanks so much
& glad she's doing better. They are MUCH stronger than us!!! My 9 yo old who is super smart get a cold & i' m Like "suck it up!!!" Not fair but oh well. Wish we lived closer too to hang/camp--if things are in control w/both our kids, it would be cool to meet somewhere camping next summer in b/w our homes!! I worry sooo much about him but do know he's strong--the Dr is great & sees a good ending so have to cling to that!!! Keep in touch!!
At 7:01pm on October 22, 2010, Heather said…

Thought I'd fill you in...we went for ANOTHER EEG yesterday where shecame to the conclusion that Sean has Doose syndrome or Myclonic Astatic Epilepsy--based on the fact that he has hard to control atonic's & myclonics. It's rare but she says w/either meds or keto diet he can have a normal life! Afraid of the worst - thinking about postin on here but afraid of negatives. How's your baby? They put Sean on high doses of Dilantin the last 2 days & he's IRRITABLE to say the least! I hope hers have since vansihed & that his will too!!!
At 6:27pm on October 10, 2010, Heather said…
Sean also has them in his sleep--I only know b/c I think he'ssleeping sounds vut if he wakes to pee, he'll have 2-3 drops!! He talks in his sleep & breathing changes. No one mentioned a "sleep Dr" but I'm going to get a 2nd opinion about everything from a eipilepaoligist (or whatever!! lol). It takes 4 mo though. We actually carved pumpkins 2-night--only b/c i gave an ativan!! Terrible stuff! Where are you guys living? I thikn you saidb/4 but MY mind is ShOT lately! We camp too & it stinks cuz our best buds arecamping @ "our place" thisweekend (we planned 2-gether) but we didn't go b/c of sz's!!! We slept in the camper last night b/c Sean asked to.
At 4:44pm on October 10, 2010, Heather said…
I'm always here--LITERALLY!!! Since the sz;s have increased, we don't do much!! He also has them @ night (mostly myclonic jerks) & an occassional tonic-clonic--I hope they're controlled SOON! We used to do so many things--camping, boating, friends etc & he was always so durable---not we treat the poor kid like he'll break!! He's so tired too from all the meds & I think this sometimes backfires & cause more sz's!!!
At 4:41pm on October 10, 2010, Heather said…
She'sadorable!! BTW, we actually had Sean testd for celiac & I feed him rice pasta etc althought he test was negative. Ever since the seizure meds he's had increased stomach issues--gassy, etc & would complain of "hot tummy". He was dx w/GERD as aninfant & took meds but I think it's resurfacing!!
At 9:52pm on August 18, 2010, JILL said…
great to have a friend that has two things in common, epilepsy and celiac.

Makes the battle a little less lonely

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