Epilepsy Foundation

Has anyone had cluster seizures at infancy and still experienced normal development for a child? Or cases when child was delayed at a time and caught up after the seizures got controlled? At age of 12 months I noticed that my dd was developmentally delayed - we got EI on board and they said she was about 3-4 months behind her peers (cognitive/language). At 16m she had her first seizure and then had them in clusters for 2 months. She is now on phenobarbital and haven't had any since. They haven't find the underlying cause of her epilepsy but Im very worried about her development - she is still about 16-18m level and her attention span is so short. The doctors don't seem to worry as overall she is a happy giggly girl progressing every day but my guts are telling me that she has a long way to go. Has anyone witnessed a success in this area?

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My daughter had a stroke around birth leaving her with some degree of left side paralysis and spacticity. She dev abnormal frequent epileptiform discharges between age one to two years. She started have prolonged seizures at age two. So she had delays in several areas of functioning. At one point she had EI every day up to three times a day. Meds did not help much with the epilepsy related activity. What helped my daughter was epilepsy dietary therapy. She has been on LGIT a modified ketogenic diet for six years now. Her seizures have decreased to the point of seldom and epileptiform activity decreased quite a bit. Her development has improved to the point that her paralysis is barely noticeable if you met her in public. She is at age level in her achademics.
She does have a short attn span but she has been able to work through it. We have been using Montessori which is a very physiological /sensory rich method of teaching.

Another thing that has helped my daughter through all of this is something called the mito cocktail which is a prescription cocktail of very specific supplements.
Epilepsy is one symptom of underlying mitochondrial disorder.

Jen

Thank you Jen for your response! Its great to hear your daughter is doing well! I agree that epilepsy almost always has an underlying condition. That brings up another question I have - my daughter has several genetic tests done but it all has come back neg which her neuro says is a good thing b/c she then has greater possibility outgrowing it . . . can anyone relate to that. Epilepsy is a secondary symptom to more serious underlying issue - why its good to not know the reason? Has anyone gone through this? I am new to this but based on what I have read, its really hard for me to believe that cluster seizures in infancy can be just one pump in someones life and then the person just catches up with development and outgrows the seizures.

Have you considered that its the medication not the seizures that are affecting her? We found phenobarbital to extremely deplete my daughters cognitive functions. (Not that it worked for her anyway...) 

I think the pheno can affect her everyday life but since she was delayed before she had seizures, Im not sure if this is the case. This med seems to work for her though, but its of course hard to know yet what the future will look like. I keep hoping for the best : ) Also, for how long would you keep going with genetic testings? They don't want to test her for disorders they think she won't have and Im wondering if I should keep pushing for more testing or just wait and see her grow? I kind of want to do the first just to be prepared for the future - ughhh Has anyone had a child w/developmental delays and w/cluster seizures that started around 16months of age and the doctor's were unable to find the underlying cause? How did you go about the development issues, did you witness any success, etc. Or maybe you can point me to forums/groups that can better answer this. Thank you so much for your responses though!

When it comes to genetic testing and or mitochondrial disorders it is not as simple as having some testing done and it be ruled out. There are families who have done years of testing before they got positive results. We have decided not to do too much miro testing.
In our case we have enough in our family history and my daughter has other health issues that it is ok to assume.
A family history of things like fatitgue migraines stomach problems etc might be suggestive of mito issues. If I were you I would take a family history of other conditions and then just ask other parents if anything rings a bell. Any family history of migraines, celiac disease, chronic fatigue pain syndromes?

Re dev issues. That sometimes depends on cause. If the cause is seizures or frequent subclinical spiking the first step is to try and stop or descrease activity. If meds fail the keto diet is very effective. Beside seizure control many have seen improvement in development.
If seizures are controlled and there are still dev issues .... you can look into things like food sensitivities celiac disease etc. These conditions can cause dev issues.
To get my daughter caught up once she became healthier, we use a Montessori /ABA type aaproach. Both when done properly can help to improve or correct many dev issues, motor, cognitive etc

Where are you located? Sometimes a good neuropshychologist can help steer you in the right direction re dev issues. But you really have to look around for a good one. One who understands epilepsy and so forth.

.

anna j. said:

Thank you Jen for your response! Its great to hear your daughter is doing well! I agree that epilepsy almost always has an underlying condition. That brings up another question I have - my daughter has several genetic tests done but it all has come back neg which her neuro says is a good thing b/c she then has greater possibility outgrowing it . . . can anyone relate to that. Epilepsy is a secondary symptom to more serious underlying issue - why its good to not know the reason? Has anyone gone through this? I am new to this but based on what I have read, its really hard for me to believe that cluster seizures in infancy can be just one pump in someones life and then the person just catches up with development and outgrows the seizures.

We are at CA - let me know if you happen to know any good ones here : )  - thank you for the response!

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