DS consultants app been put back a 3rd time(epilepsy)

[Bizkit]

Fairly new here so hi, my 8yr old was diagnosed with epilespy last december after suffering 3 seizures, he was put on medication and ordered to have an mri scan (previously had ct scan) and was given his next consultants app for april 4th, which at the time the receptionist apologised for being a long wait.

Ive had subsequent letters since, one saying it was changed to june, then another saying it was changed again to july. He had been fine for a few months, but last march had two seizures in 24 hrs, he was taken to the gp and they up'd his meds and rung the consultants themselves to request the app be brought foward, and that afternoon I got a phone call that it had been put forward, we had a may 23rd.

This morning Ive recieved a letter saying its been put back again to june 11th,although its only a few weeks later Im still a bit annoyed.

Im just wondering whether to ring up and question it or leave it.

Ive been waiting along time to see his consultant, we havent seen him since he was first diagnosed, we still have many unanswered questions. I have no info on the mri he was given and the details of the eeg he had last nov.
I also have questions about his meds his gp cant really answer, his behaviour has changed and I want to know full side effects etc.

His last two seizures were a shock as even before his diagnosis and meds he only had 3 and they were 4 weeks apart from each other, so for him to have two one day after the other whilst on meds is concerning, also DP noticed his was repeatively twitching two nights ago..so could of been a mild seizure.

I must add he has focal seizures, half his body and is conscious, he's only had one full tonic clonic where he was unconcious and Im terrified of this happening again.

So what should I do,I dont really wanna ring up and take it out on the receptionist as its not her fault, but Im also dont want to keep getting pushed aside, specially as my gp rung them personally to get the app brought foward. Or is this quite a normal occurance when dealing with hospitals/consultants etc?

it is quite common to have appointments moved but the person moving the appointment may have no idea your ds needs to be seen. You can always ring up and ask if there's been any cancellations and let them know you can take a short notice appointment if someone cancels. Or try the consultants sectretary, sometimes they can be more help.

Yes this is the thing ninja I don't know who is changing the app and why, I could understand once maybe but 3 times??

In my exeprience it is quite common for some clinics to move appts a number of times either to meet waiting list targets or because the consultant or his registrar has booked leave and the clinic has been moved/changed.
I agree with theninja and I would phone up the Consultants own secretary, explain your concerns, and the fact that your GP has requested that the appt be brought forward and see if you can get in earlier. The secretaries are sometimes able to overbook clinics(depending on the consultant) - which the receptionists/appts dept cannot do. There's nothing to lose by trying!

I have to say we've had this experience several times, but now we're 5 years on from the diagnosis it's not such a problem. I would definitely agree with phoning the consultant's secretary as it's likely that the person moving the appointments is not aware of your situation. (We ended up in this sitauation when DD's epilepsy first appeared and her appointment was 6 months off and no meds prescribed. We ended up going privately to expediate her being seen but I wouldn't recommend this - it caused more problems!)

You could also try phoning the hospital and ask to speak to the epilepsy nurse specialist (if they have one). She will work closely with the consultants so would be likely to ensure that you are seen more quickly and that your appointments aren't moved back again.

Thanks for the replies, I think I will give the consultants secretary a try. Im sure I'll understand how everything works as time goes on...Im still fairly new to all this stuff. I think I will also ask about an epilepsy nurse next time Im in, be interesting to see if they have one.