Cephalic Disorders

[livingwith]

Our beautiful daughter, now 6 years old was born apparently normal. Following delay in developmental milestones, speech delay etc she was said to have a learning disability and global delay. Motor issues were also identified.
At 3 1/2 years following the onset of seizures and an MRI Scan she was diagnosed with double cortex syndrome - apparently a very rare syndrome. We can only find medical information. We would love to talk to some other parents in our position.
She is a fantastic little gir...Read the full article

[epianw]

Just this last week we discovered our beautiful 6 yr old granddaughter has Double Cortex Syndrome with Band Heterotopia. We are not sure where to turn. You mentioned special educational help. How did you get this help? Are you aware of any programs designed to assist us help our little girl achieve all that she can?
She had her first seizure at age 2 and really didn't have any noticable problems again for a couple of years. We did notice slow development in walking, speech, etc. but only in the last 1 1/2 yrs. did the slow development really show. She also started having more seizures. Her doctors missed the problem until we took her to a specialist in Ft. Worth, TX and he seems to have found the problem.
My granddaughter and her parents live in a small Texas Panhandle community without many resourses.
Any help or information you could provide would be most beneficial. From what we have been told the future look rather bleak.

[galmoy]

Hi Epianw!!

So sorry for not replying sooner - we got distracted with another website where we got some replies - and have only checked this site today.

I realise it is a set of unfortunate circumstances that brings us together but you may be pleased to know that you are not the only family experiencing this rare syndrome. Since we posted our story about our daughter on this site - neurology channel forum and Epilepsy.com, some other parents have been in touch - one case from UK (4 yrs old), one from Italy (7 months) and two from USA, 10yrs from Arkansas and most recent contact, 18 years from Missouri (I think). We are from Dublin Ireland. We set up a g.mail account called: [moderator note: e-mail address has been removed], and one of the group set up a sort of parents support network on rareshare.org. ALl of this has only happened in the last month or so, so you haven't missed much! IF you contact us at [moderator note: e-mail address has been removed], we can put you in contact with the rest of the group.

Regarding help for you daughter - if you read our story on the epilepsy.com website- just google doublecortexsyndrome and a longer version of the story will come up - route through all the medical stuff first!!!. Its really a minefield - i suppose we were lucky in some respects that we knew something was wrong when she was 2 and took steps from that point, the diagnosis of DCS didn't really come until later - it was the last piece of the jigsaw to be put in place really. What we have learnt so far from other parents is that all the girls with DCS are different - none seem to have the exactly the same level of disabilities... so finding an answer to your granddaughters issues will probably start with a fully psychological evaluation - to determine any learning/cognitive disability if any, assess for language development - what level does she talk at or even if she as any verbal ability and also to determine any balance/co-ordination issues such as dyspraxia (which is what our daughter has). Once a fully psychological assessment has been completed then the psychologist can recommend some sort of programme - even if it is one to assist the parents in home-tutoring or providing home therapy. We have some speech and language programmes and some occupational therapy programmes in paper format here and would be delighted to share them with you by posting them to you - so do, please get in contact with the Gmail account and we will help in any way we can.

We have done a lot of home therapy sessions with these programmes, backed up by a therapist, but your daughter may find some of them helpful..

Talk soon,

Niamh