Help15 week old dd diagnosed with glaucoma - anybody experienced this?

[milliesmommy]

During the 8 week check up my dd was referred to children's hospital with dark red reflex in her eyes. When we went with her last Thursday she was diagnosed with glaucoma in both eyes and was given eye drops to take twice daily to be increased up to microsurgery which is on 8 April - so very soon.

I have googled congenital glaucoma but can't find anything relevant to my dd or any support groups - I know this is very rare I think 1 in 10,000 babies have it.

After the initial upset and shock I am now trying to find out as much as I can about it and would appreciate any help as we are going into the unknown here.

This is my first time on here so be gentle with me I have been referring to all you experienced mums since giving birth and you have really helped me.

many thanks.

I've heard these websites are good:

www.pgcfa.org/glaucoma.htm

www.viscotland.org.uk/eyeconds/glaucoma.html

Thanks very much will look at those today.

Hiya Milliesmommy

Orh i hope your all ok and have got over the shock. My baby boy is now 15 weeks and was diagnosed with Glaucoma at 6 weeks, he went into hospital the following day for surgery, its sooo awful isnt it because they are so small and helpless, also you just get your head around becoming a new mammy then your hit with this :-(

We are also like you going into the unknown apart from what we've read on the internet which can drive you crazy!! and from what we've been told at the hospital etc. ive spoke to a few familys and they tell me it gets easier so thats reassuring.

I think there is a Glaucoma supprt group in Hertfordshire somewhere, ill see if i can dig out the website and send it on to you.

Which hospital are you going to?

Hope all went well on the 8th

Lyndsey xo

hiya nice to hear from someone in same boat - my little one had goniotomy on both her eyes a couple of weeks ago and we went back to hospital this week but couldn't check the pressures because she was crying - which apparently puts them right out - how have you got on with this? Anyway we are due back this wednesday to see the consultant and to try and check the pressures but we have been told that she will need the surgery repeated - she's currently on 3 lots of drops, 2 twice a day and 1 at night we are with Birmingham Children's hospital -how about you?

Would be great if you could send me the link.

Was quite surprised that mumsnet didn't have a discussion on this already but it is very rare i think 1 in 10,000 babies have it. The main worry of course is the thought of them going blind poor things but i asked directly about this and the hospital said there is only a small chance of this happening as they have many operations and procedures to try before this - horrible having the surgeries though isn't it what have they said about your little boy now will he need a further surgery?

Presumably your little boy is having drops now how do you get on with them our little one hates them and cries every time;-(

Be lovely to hear from you again x

Hiya, soooooo sorry for late reply, internet down (suprising how lost you feel without it)!! How is your little one doing? Did your last hospital visit go well?

Yeah we have this problem too with trying to get eye pressure checked but the easiest way we've found is if we hold our LO so hes looking over our shoulder then the Dr takes him by suprise, hes getting better though, thinks hes getting used to it now.

Our LO had to have a drainage tube fitted in his left eye just before Easter as his pressure went really high (35), we are back there this afternoon to check pressure etc so ive got everything crossed. He's now on 5 drops 4 times a day which was ok at first as i would do it while he was asleep but hes cottoned onto it now and waves his arms all over as soon as i touch his head, now putting eye drops in while hes in his gym so hes occupied and this seems to work well.

We are at Moorfields eye Hospital London, we are very lucky to live 20mins away on the train so thats good.

Let me know how your getting on

Heres the support groups (havnt got in touch with them yet but hospital told us about them)

International Glaucoma Associations
Kings College Hospital
Denmark Hill
London
SE5 9RS

Tel 020 7737 3265

also

Jackie Drewitt
TADPOLES
65 Bushbarns
West Cheshunt
Hertfordshire
EN7 6ED

Tel 01992 627490

Take Care, speak soon X x

hiya no worries i haven't been on here for a while as you can see.

How did you get on with the check up - you tend to not get your hopes up don't you, is it only the left eye that's affected? creating drainage channel sounds painful how was lo following this?

just back from hospital following lo's 4th surgery she's now just had trab (can't remember rest of word) on both eyes - her left eye was operated on 11 days ago and today the right was - she apparently heals well which is a negative for this kind of surgery as you need the drainage channels to stay open, the operated eye's pressure had shot up from 14.4 last week to 26 this week so had needling done. did your lo have these surgeries done then, as our surgeon has said we have to try this before he will create drainage channels? you are really good with the eye drops i have enlisted the help of the two grandmas who help out holding lo while i do the drops - i feel like i've been giving hourly drops forever now and getting cabin fever too;-(

got check up tomorrow and monday but nice to know at least at moment the pressures are where they should be;-)

thanks for those contacts that's really useful x i may contact them and i'll let you know how i get on quite isolating having something so rare isn't it;-(

hope to hear from you soon we aren't very good with this are we;-)

Hello,

Im v.sorry im getting slower and slower at replying!! My LO is clearly keeping me very busy ;-)

How is your little girl getting on? Hope all is good and the pressure has stabilised, are you still having to give hourly drops? thats a nightmare...its hard enough having to do it four times a day, although shes probably used to it now (as its that long since ive been on here) still not nice though :-(

No my LO had goniotomy in both eyes when he was six weeks old, he's right eye has been fine since then but the left eye is the problem eye, they did talk about doing a trabeculectomy but the specialist decided the drainage tube would be better option for him, it usually takes 6 weeks to start working after its been inserted but after 7 weeks the pressure was still too high. He then went in to get the tube flushed out and that seems to have done the trick, back there next week to check pressure but yes i know what you mean about not getting hopes up, i think the last visit we had was first one where we'd got good news. We are having to patch his right eye for 2 hours a day to make his left stronger because hes stopped using it...so hes a little pirate at the mo + glasses.

How old is your LO now? Mine is 6 and a half months, not sure where the time has gone, it just flys by. I took him swimming (finally) last week, starting to do the normal mammy baby things now which is nice.

Well let me know how your getting on, really hope the last op has done the job

Take Care X x