Stephanie - posted on 04/05/2009 ( 22 moms have responded )
Hi, i have a son who's nearly 5, who's has other illnesses other then Epilepsy, he was doing great in his developments i was told he may never walk and he may never be able to do thing for himself, but he's walking, talking, very independent, thanks to all the help from speech therapy, physio, occupational therapy an so on.. He's doesnt suffer much from seizures he went nearly 2 years seizure free and then started having them again he was on Phenobarbitone but his neuro decided to take him off it and put him on Epilim, he's been on it a year now, and my god has things changed in every way, it wasnt that bad a first but as the months have gone on things have got really really bad, from very bad mood swings, hitting other kids in school which is really not like him, anyone that knows him knows thats its not in his character to be like this and im very stressed and upset over this, then theres the tiredness he goes to pre-school for 2 and a half hours aday but since September last he started falling asleep there wanting more food, i was very worried as so the teachers at school that i ended up taking him to my family doctor and asked to have tests ran, the blood tests came back that he has an underactive thyroid, which wasnt that low to put him on medication, but i was happy to have a answer to it all, but things then got worse even more and i was due to see his neuro so i waited and when we were in with her i asked for her to put him on medication cause it was really effecting everything he done, he was missing so much school cause he was always tired, all of his therapies an so i and i was feed up with it so she retested him and it came back that he hasnt got an underactive thyroid so i ended up back at square one again, then the sickness started if he didnt get sick he was complianing that he wanted to be sick.
Now since January he hasnt done one full week in school due to tiredness and sickness when he does go in im getting a phone call after a hour of him being there saying he's after been sick and he's asleep now, its effecting everything we do i cant do anything when he does go to school cause i dont know when im going to get a phone call! He's also so unsteady on his legs he keeps falling over and bruises all over his body over it so i was fed up 4 weeks ago and caught him on camera of the way he's been for months, and took him the hospital i demanded that i wasnt going anywhere till i got answers cause we cant keep living like it, so they kept him in for a week to run tests, blood tests, an MRI scan was done and an EEG scan, but surprise surprise nothing showed up, and the little begger didnt do anything taht he's been doing in school and at home so they sent him home, i was like a bull leaving but what could i do they done everything that they could do. The only other thing now is he's medication ive thought of everything and this is the only thing that keeps coming up now, so i got on the phone to his neuro who saying that it cant be he's medication cause it hasnt been increased in a while but im trying to explain these things have been happening since the first couple of months of starting on it but have just got worse i cant complain cause the medication is keeping the seizures at bay he hasnt had one since July last but if these are epilim side effects it can't be right. Im just wondering if there is anyone else that have or is going through this, and just wondering what i can do and what you done, or anyone that has any advise for me to what i can do. All advise is very welcome ill take any advise at this stage. Sorry for the long message but i get very frustrated about it all..