"I also am afraid to say it out loud when my son has had a run of days w/o a seizure as I'm afraid I'll jinx it and ironically, he sometimes will suffer a seizure right after I've said it out loud, but I beleive that's really…"
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Mary Lou Connolly
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AliceF commented on Mary Lou Connolly's blog post Not Saying Out Loud"Hi Marylou,
I have a 17 year old son who took his first seizure about a year and half ago it just came out of no where talk about scared, well then he didn't have any for about 3 months and then all of a sudden at least 1 a week and always on…"
Teresa commented on Mary Lou Connolly's blog post Not Saying Out Loud"Ok, thanks for clarifying. He's lucky to have such a great mom! Take care of yourself and your amazing son!"
Mary Lou Connolly commented on Mary Lou Connolly's blog post Not Saying Out Loud"Thanks Bryan. Teresa, we tried the diet over 10 yrs ago. Worked a while ( with meds as well) but stopped being effective in any way after a year. It has the same failure rate as drugs. Yes, Michael's on a lot of drugs and the goal is to get him…"
Teresa commented on Mary Lou Connolly's blog post Not Saying Out Loud"I am new to this, but not new to epilepsy. In our family, thankfully, seizures come only every few years. But if my child had this many seizures, we would try the ketogenic diet. I'm a little perplexed why there is not more information or…"
bryan farley commented on Mary Lou Connolly's blog post Not Saying Out Loud"great to hear from you and about your family. my mother just visited last weekend. It is difficult to deal with the uncertainty (as well as the struggle between being grateful and frustrated.)
I made it through college finally and now have my…"
Mary Lou Connolly posted a blog postNot Saying Out Loud
I’m not particularly superstitious, but I always hesitate to say how long it’s been since Michael’s last extended tonic seizure because I’m afraid I’ll put the jinx on things and somehow by just saying it out loud this current peaceful spell will be broken. So…shhhhhhh. It’s been over three months!! Wow. I think this is the longest stretch in several years.Mind you, epilepsy still hasn’t taken a back seat in this household. Michael still experiences frequent, milder tonic seizures during sleep…See More
Mary Lou Connolly's blog post was featuredPurple Day and a Plea for Prayers
Today a member of our special sorority, Moms of children with epilepsy, shared on her Facebook page that she and her daughter were in the emergency room and that she feared she was losing her precious child. She asked for prayers. Because I am such a pitiful prayer-person, I shared her request on my page in the hope that those friends of mine who believe, really believe in the power of prayer would respond to her plea. For my part, I am putting my faith in the medical team that I know will do…See More
Mary Lou Connolly posted a blog postPurple Day and a Plea for Prayers
Today a member of our special sorority, Moms of children with epilepsy, shared on her Facebook page that she and her daughter were in the emergency room and that she feared she was losing her precious child. She asked for prayers. Because I am such a pitiful prayer-person, I shared her request on my page in the hope that those friends of mine who believe, really believe in the power of prayer would respond to her plea. For my part, I am putting my faith in the medical team that I know will do…See More
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Not Saying Out Loud
Posted on May 17, 2012 at 5:03pm 6 Comments 4 Likes
I’m not particularly superstitious, but I always hesitate to say how long it’s been since Michael’s last extended tonic seizure because I’m afraid I’ll put the jinx on things and somehow by just saying it out loud this current peaceful spell will be broken. So…shhhhhhh. It’s been over three months!! Wow. I think this is the longest stretch in several years.
Mind you, epilepsy still hasn’t taken a back seat in this household. Michael still experiences frequent, milder tonic…
Continue Purple Day and a Plea for Prayers
Posted on March 28, 2012 at 12:33pm 0 Comments 1 Like
Today a member of our special sorority, Moms of children with epilepsy, shared on her Facebook page that she and her daughter were in the emergency room and that she feared she was losing her precious child. She asked for prayers. Because I am such a pitiful prayer-person, I shared her request on my page in the hope that those friends of mine who believe, really believe in the power of prayer would respond to her plea.
For my part, I am putting my faith in the medical team…
Super Sunday
Posted on February 5, 2012 at 2:11pm 7 Comments 0 Likes
Dear Michael,
It wasn’t really necessary that on this most over-hyped week-end, you took it upon yourself to have several super-sized seizures. Dark humor aside, of course you didn’t take it upon yourself--- nothing about this fickle, callous condition is a result of anything you did, do or don’t do. But this morning after the third seizure in 24 hours, all of us in this household are feeling just a little bit broken.
After you slept restlessly for a couple of hours you gamely came…
Another Semester and Other Thoughts
Posted on January 26, 2012 at 4:15pm 2 Comments 2 Likes
I just dropped off Michael for his second day of the semester at California State University San Marcos. As is the case with each time he leaves the car with faithful Katie by his side, headed toward concrete stairs that join CSUSM’s buildings, I feel the familiar fluttering of butterflies in my stomach. By the time I reach the turn that takes me off campus, the uneasy feeling is gone. It’s taken many years and lots of self-talk plus inspiration from other parents and finally, the…
Continue Hit a Home Run for Epilepsy
Posted on December 9, 2011 at 10:30am 3 Comments 0 Likes
Last week, December 1, 2011 to be exact, the Epilepsy Foundation of San Diego County’s annual fundraising gala took place. It is always a magical night, but I found this one to be especially so. It was held at the gorgeous Grand Del Mar Hotel. Fifteen of San Diego’s super chefs prepared small bites for the crowd of 350; and gingerbread artists went all out to create structures themed around the concept of home. The structures were breathtaking. Words cannot do them…
ContinueComment Wall (46 comments)
- At 1:23am on July 26, 2011, Jolaine Orlin said…
Hello Mary Lou, and thank you for writing back. Your name looks familiar to me. Where did you go to college? Just wondering, cause i knew a Mary Lou from Boston College.
Anyway, my son, Jeremy is not doing well. He has had absence seizure since the age of 9. Depakote is the only med that lessens them but he has NEVER been seizure free. Drugs tried (in conjunction with Depakote): lamictal, zarontin, topomaz, rufinamide, and there are others. He either has very adverse reactions to the meds or they don't work. He can't drive and he is getting angrier. On top of this, he has Crohn's disease, which although under control, keeps him weak and feeling more "abnormal". He is 17 and we have started looking at colleges, but I wonder how he'll do if we can't get these seizures under control. HE has about 10 short ones a day, but it's enough to effect his socializing and interests. We are in Chicago and now going to our 4th specialist. Not been happy with some of the doctors. Any suggestions or drug trials we should be looking at?
- At 2:14pm on April 15, 2011, Marcia stumpf said…
- Hello Mary Lou, I wanted to ask you, we spoke on the phone right? well, if we did Im pretty sure your the one I spoke to about motival speaking. Tuesday this week Im going to observe for the first time in my life other motivational speakers, the person I spoke to said this would be a wonderful club for me to join for self esteem, confidance, and posibitites for the future dreams I have. Marcia Stumpf
- At 2:09pm on April 15, 2011, Marcia stumpf said…
- Hello Mary Lou, Im located in Temecula California. My address is 29405 Rancho California Rd #264 Temecula, CA. 92591 My phone # is 1-951-693-0689 Marcia Stumpf
- At 7:03pm on April 10, 2011,
Rebecca R Alley said… - Hello Mary Lou. I hope you have read my comments to your blogs. My daughter Abbey has had seizures for over 16 years. She is hoping to have seizure surgery after graduation. We have done our research. Abbey even did her senior paper on seizure surgeries. We hope to have it done at WFU Baptist Hospital in Winston-Salem, NC. Did Michael ever have surgery? Our fears are that she will not be a candidate or if she is, that the surgery won't work. This would be hard to handle. I don't want to get her hopes up and then traumatize her with more failure.
- At 6:54pm on March 22, 2011,
BreAnn Cherise said… - Well, here's hoping.
- At 6:52pm on November 12, 2010,
EpilepsyLawyer said… - Hi, Mary Lou. This is Sandy, and you know my specialty is advocating for people with epilepsy. I missed you this past weekend at the San Diego Zoo, thought I might see you when we were in town. Kathy put on a nice event for the national Board, we were petting anteaters and such....
- At 10:19am on August 27, 2010,
Kyle'sMom said… - Thank you so much for your post. You have a pretty handsome son there yourself! Wishing you much seizure control as well! I will keep you posted on how all are events do!
Rose
- At 10:13pm on July 11, 2010, BreAnn Cherise said…
- Ah ok! My neurologist has been practicing epilepsy for about 40+ years now but his title is a neurologist. Kinda threw me off. lol Thank you! :)
- At 2:34pm on December 9, 2009,
AKS said… - hmmm. I still don't have anything in my inbox. Perhaps you could just email me your response? My email is asullivan@epilepsy-setn.org. Thanks!
- At 7:59pm on December 2, 2009, Linda Pampena said…
- A great 9 months!!!!! I would take it. Thanks for your encouraging words.
My daughter just had a seizure @ the diner table. You just never get use to it. Shes fine, we caught her, and praise God, she did not get hurt.
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