My Little Gradson Nichoas

Hello my name is Carolyn and I live in Pa.  We all thought that my 2 year old grandson was AUSTIC he doesnt talk walk make eye contact doesnt respond to his name wont even stand . These pasttwo weeks were hell he is in the hosiptal in Delaware he was having head drops about 50 in .less then 5 minutes Th drs. at dupont didnt know the reason he had a EEG spinal tap thy finally came to the fact that he had (LGS) . None of the family never heard of this. None of the medications are working he is getting steroids now and if  that doesn' work he ha to be on the keggin diet . We ar all scaed to death wednt know what is going to happen and wll h eer be a normal little boy  that is my story and if any body evre been through it pleas le me know thank for letting me gt this off my mind                       Carolyn Alloway from Glenolden Pennsylvania    

nicksgrandmom nicksgrandmom
51-55, F
3 Responses Feb 26, 2010

taking a shower, and then have a seizure (sometimes one that doesn't seem very bad even) and will lose the entire skill. Then there are other things like language skills which she is great at, where other kids can't even speak. The difficulties can be a heavy toll on the family, but seeing the good moments in the middle of it all are amazing - the little things most people don't ever notice in their kids. I will post more about her on my profile "KellysCouz", and if you have any questions I will be more than happy to speak with you (I see it's been some time since your blog, but that's ok). I don't always have internet access, but will reply as I am able.

Your doctor will be able to read brainwaves and tell you what kind of seizures your grandson has, but the only thing that can often be done is to care for his physical needs, give him his medications (or what ever treatments your family chooses), and keep him comfortable during his episodes. When my cousin has a seizure onset, it can be mild, almost unnoticeable, or severe to the point of considering a 911 phone call. Every person and every child is different. Some people lead relatively normal lives with nearly no mental issues, where others, like my cousin Kelly, are mentally retarded. Mental retardation can be mild like Forrest Gump, but Kelly has a mind between about 2 years old to 4 years old, because some things she can handle better than others. Sometimes she will learn how to do something, such as...

Nick's Grandmom,<br />
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My older cousin also has lennox gastaut syndrom. She appeared normal when she was born, but around two years old, the family started to notice that something clearly wasn't right. She couldn't walk like she should, potty train, or communicate the way a two year old normally can. And she began to have seizures. She was taken to neurologists and many doctors and specialists, and none of them seemed to know what to do. Medication does not curb it, and I am very sorry to say that steroids will probably jurt more than they will help. There is a special diet that some people use to help the seizures, but it has its own dangers. Medications can help, but you must be very careful and watch, watch, watch because it's easy for them to become too much - it's the kind of condition where you will come to know more than your doctor.