New member - baby with Nystagmus

[Naoisi]

Hi, my name is Laura and my 11 month old son has recently been diagnosed with Nystagmus (underlying condition is Ocular Albinism). I've read quite a lot on Nystagmus but still feel quite isolated as we don't know anyone else with this condition. The Doctor we saw yesterday almost dismissed it as something that we couldn't do anything about and would just have to see what the future brings. I'm sure to him its something he comes across frequently but me & my Husband are devastated. I'm hoping there will be other people here who have children with Nystagmus who can give us some insight to what they have been through.

Looking forward to getting to know you all

Laura

[Jenbacon]

Hello Laura

My son Joshua has Idiopathic Congenital Nystagmus and is still being tested for Occular Albinism (although the first test came back clear) Me and my husband have started a blog and it has our story through diagnosis til now (Josh is now 2 1/2) i need to update some posts as he has just started pre school. Hope you find it helpful.

nystagmusblog.co.uk

Jen x

[Naoisi]

Hi Jen, thank you for your reply. I read your blog and it is very helpful. Do you mind me asking what tests Joshua is having for Ocular Albinism? The only thing they did for us was to look in both mine & Billy's eyes and they could tell that we both had transillumination of the iris which they said was enough to diagnose him.

xx

[kathy williams]

It is so devatating to have news like this when a baby is so new and exciting, challenging and demandin gtoo, and I canunderstand how raw and vulnerable you feel.

Medicakl insensitivity is somehting with which we battle regularly!

When you go to any hospital ask whether there is an ECLO (Eye Clinic Liason Officer) who is there to support people. There aren't nearly as many as there ought to be.

It is true that a medical condition can't be altered, and that Nystagmus can't be cured, but there is a lot of help out there once you find it. There is a sort of balance between being well informed, and overwhelmed by al lthe infornation onn the net, much of which is negative and not helpful. Doctors also don't seem to react well to genned up parents!!

Having said that, despite the shock, enjoy your beautiful baby. The eye conditons are just a very small part of who is there. Meeting developmental milestones will encourage you immensely.

Very best wishes, and keep in touch!

[ruthskippy]

Hi Laura sorry for delay in replying. My daughter is 2 and half and it's 2 years ish since she was diagnosed. I've no intention of causing any upset /hurt in my note so forgive me if I do. I can be very honest I say I sobbed for a very long time when we found out and I think the stress that I've allowed myself to get into and thought I'd resolved has probably led to my recent Hiatus Hernia and stomach problems. In a round about way I'm trying to say please look after yourselves and enjoy your little one as much as possible because they will amaze you and will grow up much too fast.Things will get better.
All I can tell you about our little girl is that compared to her older sister she has been much later at hitting her milestsones but thankfully she has hit her milestones and it is only now that she is talking in little phrases that things feel infinately better.
You are doing the right thing using this network and I recommend the publications I got from NN, it answered a lot of Qns.
I would definately recommend getting 2nd opinions. I live in South East Wales and saw some people privately though they do NHS work too Pediatrician Dr Buss /Chepstow, Paediatric neurologist Phil Jardine Bristol, Prof Maggie Woodhouse at Cardiff School optometry. We go to a super VI unit GVIS and I've met other little ones with Nystagmus there( Gwent Visual Impairment Service tel 01633 645420 Sue Gray/ANn Tansley) they cover 5 counties Newport,Monmouthshire, Torfaen etc. I've basically been told by a Prof outside the catchment not to move from our area as GVIS is probably the best in the UK... all I can say is that I wish all services were as good as they are, hopefully they are. Don't give up, things will get better. As Ann Tansley (GVIS) told me "she's just a little girl that just happens to have Nystagmus" - how true. GVIS arranged for John Sanders to give us a talk on Nystagmus - that was so useful. I thought I was fairly bright with 3 degrees but honestly John puts me to shame he has accomplished so much he really is an inspiration. Keep positive things I'm sure will get better.
PS Totally aggree with Kathy, she put things so well in her earlier message

[kathy williams]

Yes, things do get better, and quickly! One mother told me that she moved from anxiety, and overprotectiveness to extreme irritation when she discovered that her girl toddler had been manipulating her, and enjoying teasing her,and was, in fact., more on top of things that she had imagined by a long way. She had her mother summed up beautifully!

All children reach milestones at differing paces too, -- some late and others early. My own brother was very late in talking. Later he said that he 'couldn't see the poihnt'. He got what he wanted and didn't see the poihnt of chat.

If you find a clinician whom you like and trust, then that is great because you will believe what you are tokld.

Intuition is a very good guide too: I still mourn the retirement of my ophthalmologist, although I am sure that his replacement is good. The easrlier one didn't go in for fancy words, but wa sdirect and honest. I appreciated this. Someone else might prefer a softer approach.


Some things can't be changed, -- but medecine develops all the time, as do surgical procedures. For some children with myopia, laser treatment may make a significant difference in their visual acuity.

But above all enjoy the brief early years!!