Maurice World

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K

katrinastewart4631

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Hi
I am a grandmother of a 3 year old who was diagnosed with acute epilepsy at 10 months old. He at one point has had 380 petite mal, grand mal, and absent seizures a week. They were controlled at one point through medications but now they are creeping back up to a high number of seizures again daily. :( My daughter and I are looking for support groups , and other parents who have similar stories like ours. Many tears have flowed and a lot of stress has come and gone , but at the end of the day it doesn't help our little man. He is so full of life , hugs and likes to kiss our cheeks. Since the seizures have come back it seems like we are loosing him again to his own little world of confusion and frustration. He doesn't talk yet so that is a hurtle we are battling with also. Maurice turned 3 on December 24 and we love him so much :) Is there light at the end of the tunnel?? Thanks for reading

Kat
 
Thank you for sharing, but I think your story could be better placed within this forum - to attract the attention it deserves. I would just like to add that yes, where there is hope there is light. Very best wishes to you, Maurice and family :) I will see if a Moderator can place your story to a more suitable forum/subforum :)
 
Thank You

Much appreciated :) I am still trying to figure out where to post things I am a great grandmother but not great at this computer stuff :/

kat
 
Hi Kat --

:hugs:

I moved your thread to The Foyer, so folks could check out your post and welcome you. Welcome!

Is your grandson seeing a pediatric neurologist who specializes in epilepsy? The neuro may be able to provide insight on the kinds of seizures he is having, and whether they are part of a particular syndrome or genetic form. That information may shed light on what the next steps would be to reduce or control his seizures. There are many anti-seizure medications out there, so perhaps there's another one to try. In addition, dietary approach called the ketogenic diet has shown success with some kinds of seizures. Worth discussing with the neuro if you haven't already.

Best wishes and good luck to you and your family. I hope Maurice's health gets on track soon.
 
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