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
"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…"
"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…"
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.…"
"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…"
"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…"
"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…"
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
"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…"
"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…"
"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…"
"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…"
"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…"
"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."
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
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!!
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!!!
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.
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!!!
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!!