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
"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…"
"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…"
"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…"
"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…"
"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…"
"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…"
"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…"
"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.
"My daughter just spent a few nights at mayo clinic for similar things. She was waking up and sometimes sleep walking other times she would roll around a lot. After a sleep study and a 24 hr eeg they diagnosed her with parasomnia. They did not see…"
"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…"
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!!