My son is screaming like something is hurting him. He won't drink it seem like he ccan't swallow the doctors say he is fine I think their carzy! What else can it be?

Semantha - posted on 04/04/2009

Follow your gut! One thing that helped me greatly-since I was in the middle of a divorce during the time I was trying to figure out what was 'wrong' w/ my 4yo-is keeping a medical journal. I went back to his birth and noted the doctor, hospital, etc and the circumstances of it, then started writing down when he rolled over, sat up etc, then recorded everytime he goes to the doc, the date and time and then a few notes about the apptmt. I grab a couple biz cards of everyone we see and use a glue stick to glue a card in the back few pages of the journal. This way whenever anything happens I have his entire medical history in one quick spot. This has saved me countless times when we see a new doc and have to go back and give them his full history in a 10 second nutshell! I also did a Therapy book that I left for his Speech, OT & PT therapists to write to me in about his progress, so I had it down on paper-that way I didn't have to try & remember all their great suggestions, I could just look in the book to review! Good Luck Lisa!

Samantha - posted on 04/03/2009

lennox gastuat syndrome is a hard to treat epilepsy syndrome, there are so many different types of epilepsy seizures and syndromes, i hope that you'll get a diagnosis for your son. my son may now have another problem as he had 2 fractures and i was told he had low levels of parathyroid hormone which controls calcuim levels, he also had kidney reflux when he was younger, i understand how you feel, my son went through various test to rule out other conditions before i was told about lgs.

Lisa - posted on 04/03/2009

Who samantha I have never heard of that syndrome! I do feel like everytime I go to the doc and decribe something new that my son does they tell me a new name. Some times I just want to give up!!!

Samantha - posted on 04/03/2009

hi, my son is 5 yrs old and has lennox gastuat syndrome. he has a mixture of different seizures. before he was first diagnosed with epilepsy, i took him to the gp who said that because he's never had tonic clonic seizures there was nothing wrong with him, luckily myself and my son's nan demand a second opinion. one type of his seizures is now under good control, every eeg he's had done is always extremly abnormal with constant seizure activity even when he look fine. my advice would be don't give up and ask for a second opinion. there are over at least 40 different seizures and one of the gp's at my local surgery hadn't even heard of lennox gastuat syndrome.

Lisa - posted on 03/26/2009

Thanks I will ask for that your right the dr's are dumb half the time they don't know what the hell their talking about... Sometimes I think I should be my son's doc I know more than they do and their the ones that make all the money the know nothing... thanks again.. Hope you son is doing better :)

Jackie - posted on 03/26/2009

lisa my son lukedid the exactsame thing after a series of bad seizures dumb dr say there is no correlation betweenswallowing and seizures but yes there is - the problems continued which led to a swallow studywhich showed he was aspirating his liquids he know thicken to a honey consistentcy and he is doing better- i think that after seizures he def needs them thicken more when he is stable without seizures he does better- ask for a swallow study!

Lisa - posted on 03/25/2009

Thanks Deb!
I went to another doctor the next night and they ran other tests. Come to find out Giovanni had a virus called adnoe! Strange I never heard of it and thats what he was running the high fevers from so we spent a few night in the hospital till he was well. Thanks for the advice... lisa

Deborah - posted on 03/21/2009

hi, try not to panic, (i know, easier said than done right!)

my son is 7mths and has a seizure disorder, he is currently on epilim.

i have found doctors at our local public hospital are rude and obnoxious, they know EVERYTHING!!!

and mum knows nothing, get a second opinion, and if your still not satisfied, get a third and a fourth and so on... until you feel that someone is actually listening to you.

but for now, try not to panic. best wishes.