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Other Parents Coping W/DCS

Shelle Message
12 Mar 2009, 04:50 AM

Would love to start a support group for parents, grandparents, anyone who copes with a DCS family member on a daily basis.
Shelia Message
6 Apr 2009, 02:35 PM

Hello Shelle, I think a support group would be wonderful. My daughter was diagnosed at 14yrs old, she is now 18yrs old.
Shelle Message
6 Apr 2009, 04:36 PM

Oh wow!! HI Shelia and welcome to our little group!! We have all recently found each other and it has been such a blessing. My daughter is 10, she was diagnosed at age 7 with DCS. She was also diagnosed with Complex Partial Seizure disorder and I have an appt in June to have her tested for Asperger's Syndrome as well. I know I speak for all of us when I say that we can't wait to get to know you and your family. Please let us know if there is EVER anything you need or if you ever need a place to vent, feel free. Look forward to hearing back from you.
nana Message
6 Apr 2009, 11:36 PM

hi,everyone Morgan is my granddaughter and shelle is my daughter.It has really been wonderful that you all have found each other,regretfully under the circumstances but wonderful never the less.I have really been interested in all that shell shares with me and amazed at all the same things that each has to say. Thank you all for joining . NANA,
Monika Message
18 May 2009, 12:58 PM

It has been very difficult to find other people dealing with this condition. I would like to get more information on all the other members’ experiences. My daughter has been on a very treacherous journey and I with her. She has changed so many medications, but nothing seems to help, in the last year things have been getting worse, not only her behaviour, her epilepsy but also it feels as if we can no longer do anything together. Please contact me. My email address is:
Monika Message
18 May 2009, 01:08 PM

I would like to get in touch with: Giuly020277. Vorrei mettermi in contatto con Giuly020277, sono Italiana, e stavo pensando di portare mia figlia in Italia. Come trovi gli specialisti/dottori? Please email me:
lorigiglotti Message
15 Nov 2009, 03:59 PM

My daughter is 7.5 months and was just diagnosed with this after a MRI. I took her to a neuro. after having global developmental delay and weakness. I am scared and worried and just wanted to know when your child developed seizures and why it seem to start suddenly.
Monika Message
16 Nov 2009, 11:32 AM

Good to meet you :-) my daughter is now 9 years old. I first notice epileptic activity when she was 4years old. I really had noticed nothing unusual before that.
lorigiglotti Message
16 Nov 2009, 12:57 PM

How is your daughter? Are her seizures controlled? Is she leading a somewhat normal life? Does she have learning or behavioral problems? I have so many questions and fears and I am really sad for my daughters future.
Monika Message
16 Nov 2009, 01:28 PM

You have no idea how much I understand you... how much all the people on this forum understand how you are feeling, all the worry, the fears about our childrens and their future. You will see, by reading about all the members's stories, we are all going through the same. e-mail me on I will forward all the emails that I have been receiving from the others on this group. So you can keep in touch with all of us. In regards to my daughter. things are not easy, her epilepsy is still not under control, she has learning and behavioral problems, but she is doing ok. she is really coming out of her shell now. She has friends, she able to go to school and she has the most beautiful smile! Things will get better.. I know that because we are finally starting to get the help we need. Send me an email we will be able to talk better, I really want to know about you and your child. I will be able to email you this evening. Take care.
marysella Message
28 Feb 2010, 10:04 PM

hi child has same problem and i wanted to share it with email is
kw123 Message
18 Mar 2010, 11:13 PM

Hi all, my daughter is 16, she was diagnosed with cerebal palsy at 7 months after developing infantile spasms and later(age11/12) with DCS,the spasms were treated and she responded very well and they stopped straight away.All progressed well, she learn't to talk,walk and was fully potty trained with some delay but not too much.Things started going badly again when she turned 8, her epilepsy returned with a vengence and has never left her. We have seen a lot of regression in the last 8 years to the point where she has lost skills she once had,has anyone else experienced this.Her epilepsy has been truly awful and has ruled our lives. After trying various meds with some awful side effects we are hoping to try the ketogenc diet,we have heard it is very diffficult to implement and she can be very stubborn,but we have also heard it can sometimes work well with children who have difficult to control epilepsy who haven't responded very well to AED's, has anyone else tried this or have any tips.
Katrina Message
21 Mar 2010, 08:27 PM

Hello All, My daughter (almost 6) started having seizures about 9 mos ago. They are only in the morning and not full tonic-clonic type. She has twitching/jerking in upper body especially eyes/neck/and arms----myoclonic seizures. Our neurologist put her on Lamictal (100mg in am and 100mg in pm). We have had no change in her seizure activity. Just curious if anyone else has had experience with this type of seizure and what meds have worked/or not worked. Thanks! Katrina
Katrina Message
21 Mar 2010, 08:31 PM

Also----Shelia I noticed you are from Missouri, USA--as are we. Just curious who your pediatric neurologist was and if you were happy with him/her? You can post or email me at Thanks! Katrina
marysella Message
21 Mar 2010, 08:36 PM

hi katrina.i noticed your child has same age.i am interested to get in contacy with parents with children has over 6 age as my child because so far i hear about children very small where the syndrome doesnt affect them so strong.This was my main concern what happened with our children once they grow.:((
kw123 Message
24 Mar 2010, 08:40 AM

Hi Katrina,I'm Kathy,my daughter also has myoclonic jerks, always in the mornings and also sometimes on and off through the day.We found that a combination of sodium valproate(epilim) and Lamictal had limited effect. I've also been told that Topomax can work well for jerks but when our daughter tried this the side effects were too severe to continue with it. I'm afraid we have found these seizures most diificult(along with Atypical absences). We're gonna try the ketogenic diet have you heard of this over in the states
Katrina Message
27 Mar 2010, 02:10 AM

Thanks for the info Kathy. Just curious, how old is your daughter? We are trying the Lamictal now with no luck, but maybe if we add the other med it may help. I have definitely heard of the ketogenic diet---from what I've read it has had some great results. We have considered it---but it is a definite life change and a big endeavor to take on. Let me know how it goes if you try it and best of luck. Have a great week! Katrina
Ericavmcmahon Message
23 Jun 2010, 08:00 PM

I'm really happy to have found all of this. My 6 month old son was diagnosed with DCS a little under a month ago. I feel like we're not positive he has DCS exactly, but a variation of it. It seems like in most cases males with the condition are much worse of than females and it often results in death within months of birth. My son seems okay. He's growing alright. He's a little behind on developmental milestones like rolling over and sitting up (low muscle tone) but he's got great reflexes. He also has been registered legally blind. Does anyone have any more information about this syndrome that you think would help me? Honestly I have almost none at all. This is very scary and we have so many questions that we can't seem to get answers to because it's such a rare condition. Thanks so much for all being here.
tali Message
11 Jul 2010, 07:51 PM

Wow im so happy to have found this forum. a friend told me about it and im so happy ive been trying to find other children with dcs for the last 4 years im shocked to read about so many other kids having the same problems like my daughter she was diagnosed at the age of 4 by mri she had developmental problems that i noticed when she was 6 months old everyone thought i was crazy until her mri the morning seizures began when she was five we have been on all the medications none helped she is now on the ketagonic diet which helped for a few weeks then it was bad again now a little better. im so happy to have found you all and hope we could help each other with the information we have waiting to hear from you.
NWalton Message
28 Jul 2010, 08:41 PM

My granddaughter age 7 was diagnosed with DCS about 2 yrs. ago. She had her first seizure at age 2 and was misdiagnosed more than once. The Cook Childrens Clinic in Ft. Worth, TX finally did an MRI and discovered DCS. They told us her conditions had been diagnosed in fewer than 100 children worldwide, so they could not really tell us what to expect. Her name in Phoebe and she is a beautiful child (a real PaPa's girl). Phoebe has lagged behind in all of her development - crawling, walking, talking, potty training, etc. She now can do all of the above. She is scared of loud noises and anything new takes a lot of time and repetition. We see her about every 2 weeks and see progress each time. She can recognize all her colors, many letters and most numbers. She can not write but she loves to "draw" and color. She will use her left hand just as much as her right hand. He parents have been told not to expect her to be able to live alone, but we are hoping she can develop some independence. Her older brother is very good with her and pushes her to achieve all she can. She is a real joy and a gift from God. I have been involved in corresponding with several individual by e-mail, belong to a DCS group on Facebook and now this site. One thing concerns me. I have yet to hear from anyone with a child/relative older than 19 yrs. old. Can someone please let me know of a case of an older adult and how they are doing.
Katrina Message
29 Jul 2010, 03:22 AM

Hi All, Kathy--my daughter is now on Topomax for her seizures--it has reduced them by maybe 60%. I was wondering what bad side effects your daughter experienced -- so I know what to look for. Also, N Walton---my daughter is 6--still not potty - trained--just curious what finally worked for your granddaughter and at what age? Thanks! Katrina
NWalton Message
29 Jul 2010, 02:32 PM

Katrina: My granddaughter was potty trained at about age 5. Just a lot of rewards and hand clapping for a job well done. My daughter kept a supply of her favorite treat in the bathroom and Phoebe received one each time she took care of business. Phoebe also enjoys pleasing us so each time she went to the bathroom we would make a big deal about how good she was. She still would not be dry overnight until nearly age 7. Now she is totally potty trained with the few accidents on occasion.
MandyR Message
20 Feb 2011, 09:10 PM

Hi, my name is Mandy and my 7 year old daughter was diagnosed with DCS at the age of 4 yrs old following an MRI scan after seizures began at the age of 3 and a half years. To date she has not had a seizure in 2 years so now the focus is on her education as she is not learning like we'd hope. She has a SEN in a mainstream school but needs more help. I'm new to this website and would appreciate any advice re similar situations. Many thanks.
Monika Message
21 Feb 2011, 11:39 PM

the yahoo group: ' 'might be of help. the creator of the group has a daughter who is in around 40 years old.. i think. That group is fantastic!
kw123 Message
28 Feb 2011, 10:58 PM

Hi Katrina, sorry for delay replying.When Genna was taking Topomax she lost a lot of weight, about a stone,about a seventh of her body weight, she completely lost interest in food and hardly ate a thing, she ended up taking nutritional milkshakes to try and stop her losing any more but struggled with those as well. She also began dribbling and leaning very markedly to the right.Her seizures changed in nature and seemed to gradually get worse and started to strongly affect the oxygen levels in her blood, another effect was for her to become like a walking zombie with little interest and interaction.It took a whole year to attain a working dose maintain it for a reasonable time and then decrease it again and it was a very difficult year for all of us. She is now back on epilim and lamotrigine which suit her a lot better and things have improved a lot, i think mostly due to her moving out of puberty (and changing meds back) , i'm glad to say all the side effects she suffered have gone or reversed and we have our daughter back with us x
mflynn Message
28 Apr 2013, 03:43 PM

I see this is an old thread, but here goes. My name is Morgen and my 11 y.o. daughter was just diagnosed with DCS. Doctors act like it's no big deal and aren't forthcoming when I ask how many of these cases they see. I KNOW this is very rare and I want them to consult with other neuros to be sure we're doing all we should be. Their exaggerated familiarity with this condition is making me a little nervous. Has anyone else experienced this? Can anyone recommend a specialist in or around Virginia? My email is Thanks so much! ~Morgen