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New worry bout Jack, bout eyesight...pls can someone help?

38 replies

caitlinnjacksmummy · 02/06/2008 13:57

Well, for all of u who dunno our story, my little boy Jack, 15 mnths old today(!!), has severe epilepsy due to dmge of his left n right temperal lobes in brain, affecting co ordination, memory, sense of smell, about 2 to 3 weeks ago, I noticed he had funny, strange look come across his eyes watching his fave programme, In the night garden, he was laughing at it, so he obv could hear it, but his eyes were sorta searching the screen as if he couldn't see it, def was something up, really hard to describe wen none of u saw wat I mean....anyway took him t childrens ward as we have open access, they got him t follow objects, but I felt they brushed it off... we waited to see Jacks consultant and I asked if it ws poss for him to lose his sight, he replied "no" very firmly and closed his eyes, shook his head, so I felt reassured then he went on to say "well I wouldn't think so"!!!! "has he had eye tsts?" Eh....am thinkin no but hell u shud fckn know!! Anyway sed he will arrange for them t b done, so obv not very reassuring, but at appointment 2 weeks ago he never mentioned eyes, but tbh I had totaaly 4got t mention it again as had no real concerns since, but yesterday and today saw that look in his eyes, mostly his left, like a cloudy look, darker, shadowy even, like a glass eye looks sort of, but he is seein wen I put something in front of him..., wat could this be? Called consultant's secretary, sed she is arranging for appointment t see consultant next mon, but she was doing that anyway as we see him every 2 to 3 weeks...but I called to sy would she remind him I want eye tests done, my reply was"oh well you have appointment nxt week anyway" As if she was sayin "tell him yr fckn self" bastard nhs!! Sik of it all, pls can someone help me out?

OP posts:
Romy7 · 03/06/2008 11:11

are you doing single jabs cjm?

caitlinnjacksmummy · 03/06/2008 11:41

dunno...jus normal mmr

OP posts:
Romy7 · 03/06/2008 11:52

ok - I'd ask at your morning appointment if they are happy for you to go ahead - not trying to frighten you at all, but if they think the eye thing could be epilepsy related and is a 'new' thing, it might be better to wait until it is settled down before he has his MMR, particularly if his last jabs triggered some szs. We've never had any problems, but I always make sure that they know history etc before I let them jab! (You'll get the lecture about how important MMR is etc - totally agree, but some paeds prefer single vaccines for epileptic kids if the epilepsy is not under good control)

caitlinnjacksmummy · 03/06/2008 11:54

No morning appointment is t get eyes tested at opticians. Do not have appointment with consultant til mon afternoon, mmr is tomorro aftrnoon, quite happy 4 me t go ahead, but am just worried

OP posts:
Romy7 · 03/06/2008 12:04

oh ok - see what the optician says then. if you are having the mmr at the surgery you can always tell the hv that you would appreciate a second opinion from the gp if you are concerned it might trigger more szs... ours are usually happy to pop in and give the little one a once-over - it's not unusual, particularly for things things colds or chest infections, for the hv to get the doc to give the go-ahead...

caitlinnjacksmummy · 04/06/2008 15:32

Well....Jack's eyes were tested, and....sed he is fine, no film over eye or anything, nice and bright, both moving together at same time etc, and sed that he noticed wen Jack was taking his dummy from him that his eyes glazed ovr, but he sed that is normal, as he is concentrating on just getting his dummy and nothing going on around him....so pleased to say the least, but still will prob get consultant t refer him, t b on safe side, wat du think? Had his MMR today too, and was a little star getting it done, two jags either leg at same time, ouch!! But he just gave a little squawk, cried loads at last jag too, but just a case of waitin and seeing how he will react, fingers crossed, everythin' crossed everyone pls

OP posts:
Tclanger · 04/06/2008 15:45

This reply has been deleted

Message withdrawn at poster's request.

caitlinnjacksmummy · 04/06/2008 15:55

It is hard, is it a little boy or girl u have? Wat do the eyes look like during absences? I asked my consultant if that cud b case with eyes, he sed didn;t think so, but before Jack was EVENTUALLY dx with epilepsy, he told me several times it wasn't epilepsy!! Than eeg showed it was, makes u mad, plus I knew from Jack was an early age he had it, they don't bloody listen to you...my msn is [email protected] if u wanna talk sometime? I asked the consultant TWICE about Jack's mmr, as the nurses on childrens ward told me that he cud have his mmr in hosp n be kept in t monitor him, as last jag he had seizure every hour, I asked consultant and HE DID NOTHING t set this up, so Jack was now 2 mnths overdue on gettn the jag, n I can't risk him gettn anything else, like measels etc, so went ahead n got it done, but if he does have a reaction like last time then I will b calling an ambulance and giving the consultant hell so fed up of feckn nhs

OP posts:
Seuss · 04/06/2008 17:21

Glad you got good news about the eyes - must be a huge relief! I hope he isn't too poorly from the jabs.

caitlinnjacksmummy · 04/06/2008 20:21

Hey, well so far so good, Jack still ok, little star, my wee hero, and yeah great news bout his eyes...du think I should still get hospital t refer him t make sure or leave it ?

OP posts:
Tclanger · 04/06/2008 20:27

This reply has been deleted

Message withdrawn at poster's request.

Seuss · 04/06/2008 22:44

what Tclanger said. It does sound fine but it might be worth taking the belt and braces approach - plus all details would be in hospital records then for further reference (one would think??). I think I would def. bring it up again in your next appointment with consultant if only to make sure he doesn't keep fobbing you off about things.

Romy7 · 05/06/2008 11:17

if you think he is having an absence, you could try the old trick of tossing a cotton wool ball towards his face - if he reacts, chances are he's not having an absence, if he doesn't feel it or respond at all, might be something neuro going on and you should get it checked out. DD2 had about a year of absences lasting 20 -30 seconds, but appears to have grown out of it now...

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