Epilepsy Foundation

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

  • Casey Kiehne
  • Maria G
  • Lonya Gardner
  • Ed Novak
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  • Denise Renee Abbott
  • Heather
  • JILL
  • Becky Shuck
  • Margo Bauer
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  • Donna Johnson
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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


Lori Miotke's Page

Latest Activity

Lori Miotke replied to Nicole Heideman's discussion Possible Seizure in the group Parents Talking w/Parents
"A couple things came to mind as I read this.  1st, I have a student that does get slight twitches with his epilepsy that will last a few minutes and they are hard to detect.  He is conscious and aware that it is happening.  He has a…"
Nov 22, 2014
Amy replied to Lori Miotke's discussion Shaking but not cold in the group Parents Talking w/Parents
"Another consideration is medication related... has her blood been checked lately (sodium, metabolites, anything of use)?  Any new/recent drugs/food lately that interact poorly with trileptal? "
Sep 4, 2014
Lori Miotke added a discussion to the group Parents Talking w/Parents

Shaking but not cold

My 8 year old daughter has atonic seizures and they have been controlled for about a year with Trileptal.  Last night she came down to my room about an hour after bedtime and she was complaining that she was shaking but she wasn't cold.  She did not have a temp but her pulse was fast.  I put her back to bed and checked on her an hour later.  She said she was shaking again and she said that her insides felt like they were shivering.  She finally fell asleep around 11.  She was happy when she…See More
Sep 3, 2014
Lori Miotke replied to Nicole Heideman's discussion Sleep in the group Parents Talking w/Parents
"My daughter (8) has low iron and has been trying for years to get the numbers up.  It takes a long time to build up the iron stores.  She has also been diagnosed with periodic limb movement (like restless legs but all over the body) and…"
May 1, 2014
Kira Gartner replied to Lori Miotke's discussion New Dx of Ventibular Migraines in the group Parents Talking w/Parents
"My youngest daughter (who does not have epilepsy) had a period of time about 3 years ago at age 10 when she had periods of extreme dizziness/vertigo that lasted about 1-2 hours. She was having these episodes several times a week, and they would come…"
Feb 12, 2014
Lori Miotke added a discussion to the group Parents Talking w/Parents

New Dx of Ventibular Migraines

Leah (7) has Atonic Seizures and for the last few months she has been complaining a lot about being dizzy and having blurry vision.  We just got back from Mayo today with a new diagnosis of Ventibular Migraines. Just wondering if anyone else has problems with migraines and how do you handle the school side of it.  I am going to be setting up another meeting with the 504 administrator at school.  Any insight will be helpful.Thanks, LoriSee More
Feb 11, 2014
Lori Miotke replied to Mallory Bradley's discussion Trileptal in the group Parents Talking w/Parents
"We did not have any issues switching to Trileptal (Keppra was the meds that made my daughter throw tantrums). However, anytime we up meds we know that we are going to be dealing with some kind of reaction until her body gets used to the new…"
Jan 23, 2014
Lori Miotke replied to Jamie Jackitis's discussion SOOOO frustrated and I could spit nails!! in the group Parents Talking w/Parents
"I am so sorry you have to go through this.  Our children are so important to us and we carry so much of the pain when something is wrong.  Do you have a local epilepsy foundation to call for recommendations for a 2nd opinion?  We go…"
Oct 16, 2013
Lori Miotke replied to Linda Lloyd's discussion Allergy and cold medications in the group Parents Talking w/Parents
"This is interesting, my daughter has to take benadryl if she has a reaction to a food allergy.  I will have to double check with the neuro on a safer alternative. "
Oct 13, 2013
Lori Miotke replied to rosa canmara's discussion New to the group in the group Parents Talking w/Parents
"My daughter has atonic seizures. She started with Keppra on a low dosage and would only have mood issues if we upped the meds but she would even out her personality once the meds leveled out.  The last and final time we upped the meds she had…"
Oct 10, 2013
Lori Miotke replied to Rachel C.'s discussion E and other Nervous System Disorders in the group Parents Talking w/Parents
"I have not heard of a correlation between E and neurological disorders.  My daughter has other health issues but none of them are associated to E.  I feel so bad for these kiddos with so much on their plates.  Hope you and your…"
Oct 6, 2013
Lori Miotke replied to Laurie K's discussion Autoimmune epilepsy? in the group Parents Talking w/Parents
"My daughter has celiac disease, epilepsy, sleep disorders, anemia, colitis, food allergies (including OAS) ... We have received the best care from Mayo Clinic in Rochester, MN.  They not only have their separate departments but they work great…"
Sep 15, 2013
Lori Miotke replied to Christina Steckley's discussion sleep jerking in the group Parents Talking w/Parents
"My daughter does this as well.  We have done the sleep study twice now.  She has periodic limb movement disorder. (kinda like Restless Leg Syndrome but all over the body).  She takes ropinorole at night before bed to calm her…"
Aug 25, 2013
Lori Miotke replied to MartiW's discussion Talking to other kids about epilepsy - help for daughter in the group Parents Talking w/Parents
"I work at a school, I also have a 7 year old daughter with Atonic Seizures.  Last year at the school I work at the local epilepsy foundation came in and talked to one of my classrooms about seizures.  It was age appropriate and it really…"
Aug 22, 2013
Lori Miotke replied to Avia Santana's discussion My son and twitching at night in the group Parents Talking w/Parents
"I would recommend getting a referral to see a Sleep Medicine doctor. My daughter has always slept poorly with twitching and grinding hee teeth. We now know she has a form of restless leg syndrome that affects her whole body. She is on medication to…"
Jul 24, 2013
Lori Miotke replied to Carrie Lanier's discussion Epilepsy and Obesity in the group Parents Talking w/Parents
"My daughter has multiple dx but her weight gain over the last year was a lot. She gained 22 lbs and only 2 inches. I am having a hard time with doctors to take me serious. I have been told it is not her meds, she is on trileptal. Lori"
Jul 9, 2013

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Comment Wall (11 comments)

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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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