doctors appt and new diagnosis

[tjsmom]

tj went to the doctor this morning and we got a new diagnosis. our doctor changed his diagnosis from Lennox-Gastaut Syndrome to Doose syndrome. because he shows very little developmental delays that are commonly seen in Lennox-Gastaut Syndrome patients. while i am very glad that he might not have Lennox-Gastaut Syndrome (i say might becuase this is his fourth diagnosis in 10months) i dont really know that much about doose syndrome and what i could find on the internet was vague. the prognosis ranges wildly, and they talk about "remission" like cancer patients. does that mean it can come and go? will he out grow it and be fine? will he get worse? we started felbamate, its been two weeks and while i have seen some improvement, it isnt any better then the other meds that he was on and once she increased them he got worse not better, and today she wants me to increase his felbamate. so now i am nervous. he had a tonic clonic yesterday and while the drops are getting better and the jerks are getting better the tonic clonics have started making their presence known more. ( the same thing happened when he was on trileptal) it just seems like everytime we go to the doctor something new comes up and i spend hours on the net trying to find answers. and i get nothing.................

[epileric]

Sorry to hear about all you have to go through with so many diagnoses. I have gone through similar things with one neurologist even deciding my seizures (which were documented on numerous EEGs) were psychosomatic. It can also be very trying when looking to find the appropriate treatment. I hope it's a small comfort to know that you're definitely not the only person having gone through this.

Have you also checked Myoclonic astatic epilepsy?

Myoclonic astatic epilepsy, also known as Doose syndrome, is a generalized idiopathic epilepsy.

[Nakamova]

I hope the felbamate helps your little guy. I founds some Doose-related links in the archives -- they may help:

[doosesyndrome] - New to this forum and in panic!
New here, son with Doose syndrome
My son diagnosed with MAE/Doose

[AnnaM]

I wish I could help ..Just wanted to send ((hugs))...My almost 4 yr old has tonic clonic absence frontal seizures. He started topamax a month ago, but has had bad side effects since increasing to 30mg (was supposed to go up to 75) so, his neurologist is switching him to lamotrigine, took his first night dose, and will titrate off the top over the next week or two. I am so stressing, been checking on him every 15 min. He said he did not feel his smile before going to bed, even tho he could smile? Okay - still stressing! Hang in there...