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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?

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jajoom · 02/06/2008 19:22

when you say his eyes are searching, do you mean flickering or making jerky movemnets? My son has nystagmus which comes and goes depending on what he's doing or how tired he is. And you say they look cloudy, but with dark shadows? Cloudiness is usually a whiter shade when associated with sight loss (I believe), my lo has also had cataracts in both his eyes, but he had milky grey shadows at the time. If the consultant didn't seem too alarmed then I wouldn't worry too much, but definitely raise your concerns at the next appointment.

caitlinnjacksmummy · 02/06/2008 19:41

This is soo hard to describe, wish you's could see what I mean, his left eye is a milky colour, cloudy is only way I can describe it....you can see it better in the daylight, looks like a glass eye...., sorry only way to describe it, worried sik

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Tclanger · 02/06/2008 19:59

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caitlinnjacksmummy · 02/06/2008 20:00

Yeah course I could, but how wud they test a 15 mnth old's eyes/ He can't talk xx

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LIZS · 02/06/2008 20:04

dd was tested before she could talk(at 2 months and about a year later). Obviously it becomes easier when they do but they can look at focussing through the instruments etc and pointing at pictures/shapes on wall. You really need a trained paediatric opthamologist though, not Boots etc.

caitlinnjacksmummy · 02/06/2008 20:15

Yeah thats wat I thought, the hospital will have to do it, there is def somethin wi his left eye, looks darker at the minute wen I look at him n sort of like a glass eye, but not got appointment with consultant til next week (n t b honest I told him bout my concerns n he more or less sed he will arrange tests but he hasn't.. he is pretty f useless tbh) n then will have t wait t b referred to get appointment t eye clinic. Wat am I supposed to do? I mean is it poss he cud b losing sight? Does anyone know what part of brain controls sight? His left n right temporal lobes are malformed, that is why he has the epilepsy and has developmental delay...I really couldn't bear anymore heartache......

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Tclanger · 02/06/2008 21:52

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Tclanger · 02/06/2008 22:11

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wannaBe · 02/06/2008 22:22

You said that his eyes clouded over while he was watching a particular programme on tv, are they constantly cloudy or is it something that happened and then has passed? if you look into his eyes while he's not watching anything are they still cloudy? or is it just something that has come and gone?

I may be clutching at straws here, but, as he has epilepsi is it possible that this is something that is being brought on by the watching of certain programmes on tv? not a full-on fit but maybe some kind of absence?

jajoom · 02/06/2008 22:32

Could you ask your GP to send a referall? Or ring the consultants secretary and tell her you want to speak with him personally (usually possible with a little badgering), and tell him how concerned you are.
Try not to worry too much though honey :-), if your little one still seems to be seeing things ok, then that's a very good thing!

sarah293 · 03/06/2008 08:27

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caitlinnjacksmummy · 03/06/2008 09:11

Well, one of the dr's in hospital sed that it is apparently 1 of the lobes at the bk of the brain tht controls sight, but it is Jack's left and right temporal lobes that are affected..so...but the consultant didn't exactly put my mind at rest so fuckn annoying, his eye looks cloudy all the time, not just at telly time..seems to be more his left eyehis eye looks slightly swollen too, oh god....wish you's could see it, so frustrating this.

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caitlinnjacksmummy · 03/06/2008 09:14

It doesn't come and go, hosp sd didn't sound like an absence altho with his condition he can get any type of seizure, he used t have infantile spasms, now myoclonic, n tonic clonic, he will eventually take grand mal ones

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caitlinnjacksmummy · 03/06/2008 09:24

A cud try catch it in a photo(dunno if it'll catch it) but how do a put it on here after downloaded t computer?

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caitlinnjacksmummy · 03/06/2008 09:35

Du no wat I've noticed...his left eye is slightly drooping ..............his eyelid

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Seuss · 03/06/2008 09:59

I had a bad eye a while ago (not same symptoms - turned out to be ulcer - irrelevant but bear with me) so went to GP and she sent me straight up hospital to eye doc with an emergency note. Don't know if your GP could help in same way but thought I'd mention it.

Romy7 · 03/06/2008 10:04

Get a gp appointment - forget the paed and his useless secretary. If the gp is worried he will arrange an emergency appointment at the eye clinic at the hospital and they will see you today. DD2 has had eye appointments since 3 months of age - as soon as you are in the system it will be fine. Just get an apppointment at the gp today or you will spend the day worrying yourself sick...

Romy7 · 03/06/2008 10:04

lol seuss - great minds

magso · 03/06/2008 10:12

Caitlinnjacksmummy you sound concerned - .
Has his specialist (or anyone medical) looked at Jacks eyes since this new worry developed? It sounds like you have noticed a ?difference in the appearance of Jacks eyes (but not runny, sticky or red) but he seems to see things as usual and is his normal self? Is it the eye that looks swollen or the eyelids around looking swollen or puffy? Is it something your GP might see also as the GP may be able to reasure or refer to the childrens eye clinic to assess.
If the GP is fully booked, Tclangers suggestion of popping into the local optometrist is an idea (preferably one accustomed to assessing children)- they may not have the specialised equipment to assess Jacks vision, but they will be used to looking at eyes and could at least look for routine (non epilepsy related) things. HTH

magso · 03/06/2008 10:15

Sorry crossed post! Yes get GP to have a look!

Seuss · 03/06/2008 10:21

Don't forget to mention he's so young and that you've noticed the drooping

Seuss · 03/06/2008 10:22

Sorry not trying to panic you - just thought anything that might get you seen sooner...

caitlinnjacksmummy · 03/06/2008 10:29

Thanks guys, ad say it is the eyelid that looks droopy, my friend's dad runs a chain of opticians and he is gonna look at Jack, waitin on her callin me wen she gets a holda him, so feelin wee bit better, wen we were t the hosp the day a took him there wen a was worried first time, not one of tham shone a light in his eye or anythin!! They waved a stethoscope in front of him n he followed it, fair enough, n they sed he was ok!! But it is a mums instinct, I knew he had epilepsy and was told on several occasions by SAME consultant it was reflux!! Took nearly a year t b diagnosed, fuckn useless nhs

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Seuss · 03/06/2008 10:35

Good news on the opticians - hope it goes well. I can't believe the hospital didn't take you more seriously - especially since you've been dealing with the epilepsy and are used to looking out for signs etc. Good luck.

caitlinnjacksmummy · 03/06/2008 11:07

Thats shitty nhs for u, his appointment is at 11.40 tomorro mornin, n he has his mmr at clinic at 1.15pm tomorrow, which I am dreading, last jab 6 weeks ago, he had a seizure every hour...so beside myself about it

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