Oh Sh&t more worries.

[anonandlikeit]

I've had a few things worrying me about ds2 recently discussing them at his recent paed appoint she thinks it may indicate epilepsy & cardiac problems & is refering him to both.
He already has mild CP & ASD/learning difficulties but this is potentialy a whole different ball game.

Just wanted to moan really!

Have been a regular poster for sometime but as the new name says I like to keep my rl seperate so that i can moan on here!

Sorry to hear about DS2. How old is he, and do you know how long you are going to have to wait for your appointments?

DS2 is 5, his paed is requesting an urgent appoint with Cardio as she says it is the most worrying but hopefully the easiest to rule out if it is nothing.
He has been complaining of pains in his "head" (but pointing to his chest) & just goes very quiet & lethargic. He also seems to be getting a little breathless/coughing on exercise but his inhalers aren't helping. It could be nothing or she suggested his asthma or reflux but because it could also be cardiac she wants to rule it out. He did have a very minor heart prob associated with his prematurity but this was sorted with medicine when he was a few weeks old.

He has also been doing strange things when going to sleep & on waking shw says it sounds like epilepsy. He has always had vacant episodes during the day but these have always been put down to sensory/zone out. But who knows, apparently they neurologist could eb up to 8 week wait, but she didn't seem too worried.

Oh no.

I hope the appointment comes through asap for him. xx

Thanks Coppertop
We've always known he is at increased risk of developing epilepsy so its not a complete shock, i just don't want him to have to cope with anything else.

As for the possibility of heart problems thats a complete shock, i'm just hoping that its alot of fuss about nothing.

Thanks Tclanger x

Oh that's worrying I hope it's not cardiac related and you don't have to wait too long.

8 weeks is not long to wait for a pediatric neuro appointment! my daughter was diagnosed following her EEG in Jan, still not seen one, now been referred to GOSH. She also has mild ASD, learning difficulties & a heart prob, she has 2 leaky heart valves that are going to be replaced soon. Hope you get a speedy response, but they are not usually quick to put a child on AED's unless they are having TC's. My daughter will be starting her meds on 8th September, they are just trying to find one that isn't contraindicated with cardiac probs. Are you in the north or south? Epilepsy Action is a good place for help/support Advice. Where I am, I had the choice of pediatric Neuro's of Addenbrooke's or GOSH, GOSH is easier to get to by public transport for me. Good luck, hope your son's medical probs are sorted soon!

Not heard anything from the neuro dept yet (should be Addenbrookes) but he is still the same strange sleep movements & noises & waking alot in the night as well.

Have been seen by the paed at the hospital with special interest in cardio & he does not think it is his heart. He could not detect any major problems, he thinks it is reflux but is going to monitor both reflux & cardiac.
He has given gaviscon but tbh it doesn't seem to make any difference.

He had reflux as a baby & had gavicon then but has been fine since, he is 5.6 now, do 5yr olds get reflux?
If it is reflux the gaviscon doesn't seem to be touching it.