Son went for check up at hospital yesterday and it was a fiasco. Firstly told by nurse that they had lost his notes - even though he had been to see contact lens optician on 8 September. Went in to see doctor who didn't seem to know anything about the condition. She said that without the notes there was nothing she could really do.
Well to say that I was angry would be an understatement. Not only had I had to take time off work to take him but he had also had to take time off school. She ended up going out of the room to speak to the Consultant and after about 15 minutes he came in to the room with her. He had a thorough look at son's eyes and said that the dry eye disease was not under control and that he must use his drops more regular - easier said than done with a teenage boy. The Consultant now wants to see him again in February next year and hopefully the notes will have turned up by then!!!
With regards to the contact lens - they had it there but there was nobody around to show him how to put it in and take it out (first time with a lens) - he has to wait until 8 December. Shouldn't be surprised at this after reading through the postings on this site but think this is absolutely awful.
HOSPITAL VISIT
Moderators: Anne Klepacz, John Smith, Sweet
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eileen hughes
- Contributor
- Posts: 20
- Joined: Tue 14 Jun 2005 10:46 pm
- Location: Liverpool
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Hi Eileen,
Appreciate this is does not help your situation, but my visit could not of been more different. It just emphasises the post code lottery regarding quality of treatment.
This debate has already raged here many times so I emplore people to refrain from going over old ground again.
However you are entitled to see your sons medical notes, so a trip to your GP may be in order to request a copy and keep on until a copy appears. Hopefully you will have them come the next visit you can present your set if they still claim not to have a set.
Good Luck.
Gareth
Appreciate this is does not help your situation, but my visit could not of been more different. It just emphasises the post code lottery regarding quality of treatment.
This debate has already raged here many times so I emplore people to refrain from going over old ground again.
However you are entitled to see your sons medical notes, so a trip to your GP may be in order to request a copy and keep on until a copy appears. Hopefully you will have them come the next visit you can present your set if they still claim not to have a set.
Good Luck.
Gareth
Gareth
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eileen hughes
- Contributor
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- Joined: Tue 14 Jun 2005 10:46 pm
- Location: Liverpool
Hi
Jayuk - yes he does have KC in his left eye but at the moment they say he has 20/20 vision in his right eye. As far as the dry eyes goes, the consultant said yesterday that until he gets this condition under control he doubted whether he would be able to wear contact lens at all.
Gareth - all they had available yesterday was copies of letters that had been sent to GP, genetics team (being referred there as they think it may be an underlying genetic condition that has caused KC) and for an Orb scan (still waiting for appointment after 3 months). I had already received copies of all these letters. What they didn't have was a copy of the original opticians letters/GP's letter referring or the notes made at his last visit.
If these are not available at the next appoinment I will not be a very happy person.
As for postcode lottery, knew there were problems but until it happens to you you don't really think about it.
Jayuk - yes he does have KC in his left eye but at the moment they say he has 20/20 vision in his right eye. As far as the dry eyes goes, the consultant said yesterday that until he gets this condition under control he doubted whether he would be able to wear contact lens at all.
Gareth - all they had available yesterday was copies of letters that had been sent to GP, genetics team (being referred there as they think it may be an underlying genetic condition that has caused KC) and for an Orb scan (still waiting for appointment after 3 months). I had already received copies of all these letters. What they didn't have was a copy of the original opticians letters/GP's letter referring or the notes made at his last visit.
If these are not available at the next appoinment I will not be a very happy person.
As for postcode lottery, knew there were problems but until it happens to you you don't really think about it.
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Eileen,
At the risk of the wrath of the non-Systane supporting crowd here is the link (I hope) giving more information regarding systane which I believe was originally meant for the relief of dry eyes.
http://www.systane.com/consumer/default.asp
Hope it helps.
Gareth
At the risk of the wrath of the non-Systane supporting crowd here is the link (I hope) giving more information regarding systane which I believe was originally meant for the relief of dry eyes.
http://www.systane.com/consumer/default.asp
Hope it helps.
Gareth
Gareth
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eileen hughes
- Contributor
- Posts: 20
- Joined: Tue 14 Jun 2005 10:46 pm
- Location: Liverpool
Gareth and Jayuk
Thanks for your replies and words of comfort. The Consultant has prescribed Alomide for his dry eyes - not sure what the difference is between them and Systane, the problem is actually getting him to remember to put them in. Think it is going to have to be me having to constantly on at him to put them in. Oh well, whats new Mum's always the big bad wolf!!!
Thanks for your replies and words of comfort. The Consultant has prescribed Alomide for his dry eyes - not sure what the difference is between them and Systane, the problem is actually getting him to remember to put them in. Think it is going to have to be me having to constantly on at him to put them in. Oh well, whats new Mum's always the big bad wolf!!!
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Hi Eileen,
I had something similar to Alomide back ion June and had to use it 4 times per day. Systane is very different and I only need that twice aday to get far better results than the Alomide. The pharmacy at the hospital told me Systane is not prescribed as it is too expensive, however from Postoptics, I get it for about £5 a bottle that lasts a month. The alomide stuff ws in single use ampules and I needed four boxes to last the same period.
My mum told me she knew she had given me good advice as I would ignore it and look very sheepish once I ha learnt the hard way. We needs mums to bully us at times and Systane which you can make him put in may be the route. Otherwise he will learn the hard way as he finds life difficult without lenses. As soon as not using the drops prevents him doing somthing he really enjoys, he will gradually come round and he will see mum knew best.
I had something similar to Alomide back ion June and had to use it 4 times per day. Systane is very different and I only need that twice aday to get far better results than the Alomide. The pharmacy at the hospital told me Systane is not prescribed as it is too expensive, however from Postoptics, I get it for about £5 a bottle that lasts a month. The alomide stuff ws in single use ampules and I needed four boxes to last the same period.
My mum told me she knew she had given me good advice as I would ignore it and look very sheepish once I ha learnt the hard way. We needs mums to bully us at times and Systane which you can make him put in may be the route. Otherwise he will learn the hard way as he finds life difficult without lenses. As soon as not using the drops prevents him doing somthing he really enjoys, he will gradually come round and he will see mum knew best.
Gareth
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Ali Akay
- Optometrist
- Posts: 201
- Joined: Thu 09 Jun 2005 9:50 pm
- Keratoconus: No, I don't suffer from KC
- Vision: I don't have KC
- Location: Hertfordshire, UK
Hi Eileen
As your son sees 20/20 in the good eye and appears to be coping well he doesnt appear to be highly motivated and probably will not persevere with the contact lens when he eventually gets it.If his right eye deteriorates then he is likely to have better motivation then. Hence, my feeling is dont worry, there's no great problem with him managing with the good eye until he is ready for lenses unless he is having any symptoms. Alomide is actually prescribed for allergy rather than dry eyes. The problem is lid allergies can cause dry eyes indirectly, and it would appear that the main problem is allergic conjunctivitis which is likely to have an adverse effect on contact lens tolerance. The good news is he may very well grow out of the allergic conjunctivitis and by then may be more mature and perhaps in more need of the contact lens and have more chance of being able to wear it.All you can do is keep nagging him to take the drops.
As your son sees 20/20 in the good eye and appears to be coping well he doesnt appear to be highly motivated and probably will not persevere with the contact lens when he eventually gets it.If his right eye deteriorates then he is likely to have better motivation then. Hence, my feeling is dont worry, there's no great problem with him managing with the good eye until he is ready for lenses unless he is having any symptoms. Alomide is actually prescribed for allergy rather than dry eyes. The problem is lid allergies can cause dry eyes indirectly, and it would appear that the main problem is allergic conjunctivitis which is likely to have an adverse effect on contact lens tolerance. The good news is he may very well grow out of the allergic conjunctivitis and by then may be more mature and perhaps in more need of the contact lens and have more chance of being able to wear it.All you can do is keep nagging him to take the drops.
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eileen hughes
- Contributor
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- Joined: Tue 14 Jun 2005 10:46 pm
- Location: Liverpool
Hi Ali
The consultant said that he had Allergic Dry Eye Disease and that it would take a coupel of months of persistent use of the Alomide drops for things to get a bit better. As far as wearing the lens, I think that he will try and persevere as when the optician tried a lens in his eye he realised that he could see so much better. He likes playing tennis and at the moment is finding that if he turns his head the wrong way he doesn't see the ball until it is almost too late. As he isn't geting the lens until December, at least he will have a good few months of trying before he starts playing again in the Spring.
At the moment I am the big bad old mum constantly nagging him to put the drops in. Unfortunately for him he also has an older sister who acts like a second mum and nags him as well. Poor lad!!!
The consultant said that he had Allergic Dry Eye Disease and that it would take a coupel of months of persistent use of the Alomide drops for things to get a bit better. As far as wearing the lens, I think that he will try and persevere as when the optician tried a lens in his eye he realised that he could see so much better. He likes playing tennis and at the moment is finding that if he turns his head the wrong way he doesn't see the ball until it is almost too late. As he isn't geting the lens until December, at least he will have a good few months of trying before he starts playing again in the Spring.
At the moment I am the big bad old mum constantly nagging him to put the drops in. Unfortunately for him he also has an older sister who acts like a second mum and nags him as well. Poor lad!!!
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