Hey yall

[Purpleblackdawg8]

My lil girl had them from infancy till about 6 years old she was taking Keppra and seeing a Neurologist and When they would tell me maybe she would out grow them..It left me feeling lost and helpless.She had an episode once and fell down a few stairs and we had to move..I was getting No sleep @ night for 2 years straight when it was at its worse ..Eventually she started learning how to alert us or attempt to..I cried yall and I was FELT so alone..I wish I had found you guys then...Happy to say now tho its been nearly 3 years and she has been seizure free..So I want you guys to hang in there and Im with yall all the way if anyone ever needs a friend or an ear. Peace,love,light,patience and strenght to everyone of yall..Hang in there

[p-mcnally]

It's so hard my grandson who is nearly 4 has had seizures since Nov and has been diagnosed with dose epilepsy .On 4 medicines now and I just want to take it away to see him with all different seizures is unbearable it breaks my heart.The medicine makes him twitch and drops without warning hope it goes away for our Alfie praying for this : ( xx

[Purpleblackdawg8 in reply to p-mcnally]

My D.had different kinds everytime.Does Your GS. Have different ones? Tonic / Gran Mal? Also it helped her if I held her hand and talked to her, sometimes she would be able to keep her eyes focused on us

[p-mcnally in reply to Purpleblackdawg8]

Yes different types wears has hat but still bangs his face and mouth going to nursery for two hours as trying to keep him having a routine doctors are trying to reduce his keppra and have put him on another medicine to now .His mood has changed also and tired constantly .Hospital feel he may have autism too but I will slays be there for hI'm .My daughter is a star but do worry about her .Thank you purple black xxx

[Jules1711 in reply to p-mcnally]

Hi my daughter also has doose shes now 5 and has had it since being 15 months old. she is on 3 meds and the ketogenic diet. She is almost seizure free, her seizures have reduced to virtually nothing now max 5 a day on a really bad day. It is a brutal disease but hang in there i would strongly recommend the ketogenic diet it has been a game changer for us and has been proven to be the most effective way to control doose syndrome. Good luck x

[p-mcnally in reply to Jules1711]

Thank u so much you have made feel better xxxxx