"Leah's sleep study went well. She woke up again in stage 3 but this time she did not try to climb out of bed. when she woke up she just stared at ceiling. The sleep doctor did not see any seizure activity and therefore has diagnosed her with…"
-
Lori Miotke
- Female
- South Saint Paul, MN
- United States
- Blog Posts
- Discussions (65)
- Events
- Groups (3)
- Photos
- Photo Albums
- Videos
Lori Miotke's Groups
Lori Miotke's Discussions
Sleep and Epilepsy
Started this discussion. Last reply by Lori Miotke Mar 26. 5 Replies 0 Likes
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
donald burger replied to Lori Miotke's discussion Sleep and Epilepsy"Leah sounds a lot like my daughter's sleep disorder. Sometimes my daughter would start shaking and flailing in her sleep they only caught it once on veeg and it looked close to a hypermotor sz but was not a sz my neurologist sent it to 8 other…"
susan walter replied to Lori Miotke's discussion Sleep and Epilepsy"Lori,
My ds (15) is going to Mayo for a sleep study this week, too. We need to rule out some things (obstructions like tonsils or stopped breathing, apnea, etc) , but I've learned that chronic fatigue in and of itself leads to poor sz control.…"
Lori Miotke replied to Lori Miotke's discussion Sleep and Epilepsy"Thanks for the response. Leah was diagnosed with a sleep disorder at the same time she was diagnosed with epilepsy. She has partial limb movement (kinda like restless legs but all over her body) and she takes Ropinorole to help get her…"
donald burger replied to Lori Miotke's discussion Sleep and Epilepsy"my dd has sleep problems as well as epilepsy we thought she was having breakthrough sz and when we sent back to a veeg we saw that she was walking in her sleep, was not having drop sz but was narcoleptic and has trouble going in to stage 4 of…"
Lori Miotke replied to marivel perez's discussion sleep study? in the group Parents Talking w/Parents"We are heading there tonight too. This will be my daughters (she is almost 7) 2nd sleep study. The process is painless and actually my daughter is looking forward to it. Me, not so much, the bed I get to sleep on is…"
Lori Miotke posted a discussionSleep and Epilepsy
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 sleep walking almost every night. This was enough for her sleep doctor to want to do a sleep study and her neurologist to place her in the Epilepsy monitoring unit for a few days. Does anyone else have any problems with excessive sleep walking and epilepsy? The sleep doctor thinks this is epilepsy…See More
Lori Miotke replied to Michelle's discussion Bath safety tips for toddler with atonic seizures? in the group Parents Talking w/Parents"My daughter has been dx with Atonic Sz since she has been 3 and living with atonic sz for yrs before dx. She is now 6 going 7. I still have moments of panic, I had one today. I think that is our life. However, making a child…"
Lori Miotke replied to Kristene Peterson's discussion Celiacs, Gluten and Seizures in the group Parents Talking w/Parents"My daughter has celiac disease and atonic seizures. She was dx with celiacs at 16 months old and we had already noticed falling issues at that point. We thought that they were because she was so malnourished. She continued falling as she…"
Lori Miotke replied to randy's discussion Best Dr or hospital for epilepsy in the group Parents Talking w/Parents"My daughter is seen at Mayo and he have only had positive experiences there. My friend has also started going there for adult epilepsy and has answers for the 1st time in years. I would highly recommend Mayo clinic. My daughter has…"
Lori Miotke replied to Tammieka's discussion How do you get peace of mind when you have to work? in the group Parents Talking w/Parents"Find a provider that you trust. Start by contacting the county that you live in, they should have a listing of all the licensed providers. Let them know what you expect and tell them that you want to know everything. I am fortunate…"
Lori Miotke replied to masonsmom's discussion Can you help me? in the group Parents Talking w/Parents"We have not experienced this. It is hard to see our children go through this. Stay strong, you will be in my thoughts.
Lori"
Lori Miotke replied to Jamie K.'s discussion NEW AT THIS....ANY ADVICE in the group Parents Talking w/Parents"My heart goes out to you and your family. To answer the normal question, I have heard that sometimes the seizures are so deep in the brain that it doesn't show on the tests. This is just a beginning of a journey for you. Most…"
Chirag Lakhani replied to Lori Miotke's discussion Vomiting? in the group Parents Talking w/Parents"For us we have seen a different parttern. My daughter would vomit first and then her seizures will start. Our Neuro says that when she vomits her medication level in her body reduces & hence it causes her seizures."
Amy Schlenker replied to Lori Miotke's discussion Vomiting? in the group Parents Talking w/Parents"My daughter has never done it in her sleep, but she has started vomiting during her seizures during the day. Also her seizures have been changing over the last few months."
Profile Information
Comment Wall (11 comments)
- 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…
- Hello~
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
Terms of Service Update 6/4/2012
We have updated our Terms of Service for eCommunities Groups.
© 2013 Created by EF Admin.
Badges | Report an Issue | Privacy Policy | Terms of Service
