FInally help for Sam - Epilepsy Message Board

kayakmom · 09-01-2005, 04:31 PM

Some of you know our long 3 year battle after a misdiagnosis removed medication for my son. TOO bad they did not remove the seizures as well. He has had somewhat abnormal as well as many normal EEG's. We have seen other specialists as neuros insisted to rule out cardiogenic syncope, sleep apnea, parasomnia, other sleep disorders or anything thing else that this COULD be. FINALLY our epi, after working with him for 13 months has listened and decided the only reasonable next step is to try him back on a trial of medication to see how he does. He has continued to increase his seizures as well as loose handwriting and memory............ FINALLY we are all SO thrilled that this doctor sees the light!! We have him back on a low dose of ZOnegran. The medication that helped him before all this happened.

We took with us a picture taken at camp by someone else. I was at camp with him and knew that he looked AWFUL the morning after he had a very bad seizure in sleep. I did not notice the WHOLE left side of his face had a profound droop from eye to chin!! I did see it in the picture 2 weeks after camp. The neuro was THRILLED that we had something concrete to show him after all the tests that did not give answers!

He also saw how clear Sam was in speech and he was understanding him fine. Last apt, he had a hard time with it, Sam also was not understanding any of his questions. Sam had a seizure before the last apt but we said nothing (Sam often will deny a seizure until later in the day. We did not want to say it when we were not 100%)....Hubby pointed this out to the neuro and you could SEE the lighbulb come on!! HE did remember and DID see a huge change.

We are so very relieved! Thanks for the support you have given for 3 years!! He is now 14.5!

tkdmom96 · 09-01-2005, 08:06 PM

Hi Kayakmom,

What a sense of relief you must feel! Isn't it ironic that you have an Epi that DIDN'T want to medicate, and then you have others (epi's, neuros) who want to push meds after only one seizure. Amazing.

The power of journaling and knowing in your heart what is really going on makes a huge difference...as I've said a million times here...

YOU ARE YOUR CHILD'S ADVOCATE!

All my best to you and Sam...you might need to change your signature...Sam was 11 for a REALLLLLLLLLLLLLLLY long time!

Peace,
Vicki

kayakmom · 09-01-2005, 09:12 PM

I have not been able to figure out HOW to change my sig!! I emailed the mod and never heard!! Sam is NOT 11..........I can tell as I look up to look him in the eye now...hehehe...........

Thanks! YES< we HAVE to be our child's advocate..........we cannot give up that fight EVER.............

aelisemc · 09-01-2005, 10:12 PM

Hi, I am new to this site, but not new to epilepsy. Of my four children 3 of them all boys have epilepsy as well as various degrees of learning problems, our daughter who is also the youngest has been spared totally no epilepsy and no learning problems (actually just the opposite, she graduated high school 2 years early and just started college this week). Since I dont know anything about Sam, can you give me some information about him. Have they diagnosed him at all? We had problems getting a correct diagnosis for our son Zachary also. He was Zonegran and that made a big difference in his myoclonic seizures for a long time. Our other boys have been seizure free for quite a while. Best wishes for you and Sam.

Ann

kayakmom · 09-02-2005, 04:30 AM

Sam had a diagnosis of epilepsy 6.5 years ago after his first day time tonic clonic seizure. He had been having complex partials and seizures in sleep for at least a couple of year, but we did not recognize what they were! I knew nothing about seizures. Tonic clonic seizure, blood work confirming then abnormal EEG a month later. We started recognizing the night time events once we saw thta first post ictal state! Neuro confirmed and DX'd epiepsy. We went through various med trials. They helped some, but side effects of learning and behavioral issues, pancreatitis, allergic reaction etc. ZOnegran was the best and did help him. Neuro was not satisfied wiht his control, still having a couple of nocturnal seizures a month. He insisted we go to an Epi to see if he was a surgical candidate. Epi took him off meds cold turkey, caused Periodic Limb movement disorder. Kept him off meds since VEEG did not capture seizures to try and have us come back for more VEEG> They stalled and delayed our return for 10 months OFF MEDS. First and last VEEG showed the same epileptiform bursts and focal abnormal slowing, we were told this DID indicate epilepsy was possible. Epi then told neuro that he had out grown his epilepsy. Epi told us he could see a focal point but had to see a seizure to be sure. Neuro believed Epi saying he had outgrown. insisted it had to be apnea and not seizures since he heard him snore in EEG once. Tested for that....LONG story several doctors. This first neuro did see a normal EEG with Sam early on, after DX and was the one who TAUGHT ME that you can have normal EEG and still have epilepsy. Basically we could not get past a Lying Epi and a neuro who hero worshipped and felt epi could do no wrong. (Even when he saw inconsistancy in the reports. Lies were there. I tried to show him the in patient record which SHOWS they saw epilepsy and suspected frontal lobe E........).......

It is hard to get past a lying specialist.....