"This link may be of interest to you, starting on page 16: http://www.epilepsyfoundation.org/resources/epilepsyusa/loader.cfm?csModule=security/getfile&pageid=40340 Best wishes, Mary Ann Epilepsy Foundation Epilepsy Resource Center Please check…"
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Rebecca Dyment
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- Vernon Rockville, CT
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Rebecca Dyment's Discussions
Modified Atkins Diet, so far not helping
Started this discussion. Last reply by I&R Group Nov 2, 2010. 3 Replies 0 Likes
gelastic seizures
Started this discussion. Last reply by I&R Group Sep 27, 2011. 13 Replies 0 Likes
Rebecca Dyment's Page
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emily shepard replied to Rebecca Dyment's discussion gelastic seizures"Some seizures are caused by tumors which they see on an MRI. They usually treat the tumors wth surgery or radiation. You can ask your neuro about getting an MRI but if your neuro didnt mention it he's probally not at a very high…"
Paula E replied to Rebecca Dyment's discussion gelastic seizures"Really? A big red flag? Why? What does it mean? My son is 7 and was just diagnosed with absence seizures in July so we are very new to this. I had no idea. He used to giggle in his sleep often. He might…"
Nicole replied to Rebecca Dyment's discussion gelastic seizures"prior to my son being diagnosed, he would giggle in his sleep, I thought it was the cutest thing ever, thinking he was having great dreams. I just found out this was a BIG RED FLAG!!! something I should have talked to the doctor about."
"Irishmum mentioned the Ketogenic Diet and I think you'll find the following link very interesting: The Charlie Foundation to Cure Pediatric Epilepsy - http://www.charliefoundation.org/
Carolyn Johnson, Senior Information Specialist
Epilepsy…"
Irishmum replied to Rebecca Dyment's discussion Modified Atkins Diet, so far not helping"If he is tube fed you should consider the ketogenic diet. It is easier to administer for children who are tube fed as you can do ketocal formula. What are the five meds he is on? Sometimes too many meds can interfere with the effectiveness of the…"
Ann R. replied to Rebecca Dyment's discussion Modified Atkins Diet, so far not helping"Dear Rebecca, I don't have any experience with the diet but just wanted to send you some good thoughts. I'm sorry you haven't seen improvement yet. It sounds like your little guy has had a terribly tough time and you are doing all you…"
Rebecca Dyment replied to Haysmommy's discussion Where do you being with MAD for treatment?"Thanks for the positive story. My son 3 year old just started the mad diet. He gets most of it thourhg the gtube.l
so far we have seen little success and I am getting so frustrated and anxious. He continues to have multiple seizures per day and is…"
Rebecca Dyment posted a discussionModified Atkins Diet, so far not helping
My son is three and has Migrating Partial Epilespy of Infancy. He is on five meds and has several seizures a day. Developmentally he is about 5 months old,. We started the Modified Atkins Diet about two weeks ago, a month after deciding it was tiime for feeding tube due to feeding difficulties. So far no success and i am so frustrated and discourged. Justin continues to have seizures along with vomiting. I am hoping that this diet works and he just needs some more time. Feeling hopeless.See More
Rebecca Dyment replied to michelle's discussion For those who have had experience with Make A Wish"My almost three year old son has a rare diagnosis of migrating partial epilepsy of infancy. He is about 6 mos old developmentally. He is on three seizure meds three times a day to control his seizures which in the past have been up to 30 times per…"
Grimins replied to Rebecca Dyment's discussion harder as he gets older"Welcome to the forum Becky. You'll fidn lot sof great support here: D My prayers for you and your son!"
babs replied to Rebecca Dyment's discussion harder as he gets older"(((Becky)))
Rachel, 13yrs, is physically handicapped as well, and is not able to talk. If you want to vent anytime, send me a pm. I have my days too - LOL!
Take care.........."
Jessesmom-Holly replied to Rebecca Dyment's discussion harder as he gets older"You can vent here to us any time, we've all had those down days! I'm sorry that times are tough right now and I hope that you get a pick me up some time soon. It seems like whenever I'm extra down, Jesse will do something that gives…"
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My husban, daughter Kailyn, son Justin and myself all live in CT. Justin is my nineteen month old son, diagnosed with a rare form of epilepsy, called Migrating Partial Epilepsy of Infancy. His seizures started at four months of age, the night of his immunizations. He spent 24 hours in the pediatric intensive care unit at Connecticut Childrens Medical Center. He has since had several hospitilations. He was just at Boston Children's Hospital for a 48 hour video eeg study. Justin is diagnosed as cortically blind and his hearing is questionable. He recevies pt, ot, speech and visual therapy and around a 4-5 month level. He is a busy guy with all these services and LOVED so much. His big sister Kailyn, is his biggest fan.
My husban, daughter Kailyn, son Justin and myself all live in CT. Justin is my nineteen month old son, diagnosed with a rare form of epilepsy, called Migrating Partial Epilepsy of Infancy. His seizures started at four months of age, the night of his immunizations. He spent 24 hours in the pediatric intensive care unit at Connecticut Childrens Medical Center. He has since had several hospitilations. He was just at Boston Children's Hospital for a 48 hour video eeg study. Justin is diagnosed as cortically blind and his hearing is questionable. He recevies pt, ot, speech and visual therapy and around a 4-5 month level. He is a busy guy with all these services and LOVED so much. His big sister Kailyn, is his biggest fan.
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Comment Wall (5 comments)
- At 11:43am on September 2, 2009,
Adamsmom said… - (((((Becky))))) sending some hugs and hoping all is well your way today!
Hugs,
Donna
- At 8:07am on April 12, 2009,
Allison-Sam's Mom said… - You did inspire me, I worked on Sam's page last night! What do the spasms look like? When Sam was 5 months, his arms would quickly fly inward like a "startle" but they were myoclonic seizures. He has always had myoclonic seizures and fortunately those are the only type that he has ever had. Sam has had between 20-30 myoclonic seizures every day all day long since he was 5 months old. JUST recently, we added our 8th med which is Keppra. It is the first time in 2 years that he has gone a day without the seizures. We have tried the keto diet, phenobarb, zonegran, topomax, lamictal. Like I said before, he is now on a combo of Klonopin, Clobazam and Keppra. Keeping my fingers crossed!!!
Sam saw a neuro in Guilford first. Then we went to Yale and we saw Dr. Ment and Dr. Novotny. We still see Dr. Ment at Yale for overall care but we mainly go to Boston now. We also saw a geneticist at Yale and also at Childrens. Has your son had a muscle biopsy or a spinal tap? I think that I read somewhere he had the bloodwork for the SCN1A mutation. Sam is 2.5 years and he is not talking at all or walking on his own but he is doing very well and I know that he will get there one day.
- At 1:01pm on April 11, 2009, babs said…
- He's so cute!!!! What a wonderful family you have here. Nice to meet you. Mom of Rachey, 12yrs, GTPCH def. which causes her developmental disabilites.
- At 11:05am on April 11, 2009, Allison-Sam's Mom said…
- Hi Rebecca, I love your pictures. You inspire me to get going on Sam's page! Sam is a new big brother to a baby sister. We had a daughter in Jan so it has been a bit busy! I was reading your post on spasms. I am not too fimiliar with spasms. My son has had myoclonic seizures since he was 5 months old. I think that he has absence as well but it has never been confirmed on an EEG. Who do you see in Boston? We were just there on Monday. We see Dr. Bourgeois. I really like the dr's there. We tried the keto diet for 7 months and we saw Dr Bergin. My son is also globally delayed. We started Keppra about 2 months ago. It is our 8th med. I am typing this cautiously b/c......we have not have a myoclonic seizure in 7 days.....it is the first time in two years that Sam has gone a single day without them. I am very cautiously optimistic.
We live in Madison. It is so great to "meet" you!
- At 11:23am on April 9, 2009,
MrsLinkgetter said… - SO glad to have you here Rebecca! Welcome to Ecommunities!
Ginny Miller
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