two year old with ebmd omg!!

[sammygirl32]

Hi all,
iI have a two year old daughter who is the most gorgeous little thing eva but she suffers from this alfull and very rare in children condition called ebmd, alway for young children to have and she wakes with it every morning its the layers in her eyes that stick together causes severe pain and very bad photophobia! we are trying to start living with it but it makes everyday things a nightmare eg Like going to the shops to get a bottle of milk a no no! going for days out to the seaside a nightmare! We are under gosh and now have been transfered as we are following the consultant that diagnosed my daughter (baring in mind it took 18 months for this) to a hospital in east grinstead kent! soo im hopping to find anyone who suffers from the same rare condition to talk too many thanks sam

[littlemermaid]

Sammygirl, I just PMed you to talk docs.

Why are you transferring to East Grinstead for EBMD? Is SH offering this NHS now? It'll bankrupt you in private practice. Please, you must meet the truly excellent WM at GOS before you decide anything.

You've also got Moorfields Childrens NHS - ask GP for urgent referral to Stephen Tuft, if you want second opinion.

Please someone reply to Sammygirl about Epithelial Basement Membrane Dystrophy and corneal erosions treatments. Have they tried bandage contact lenses?

[sammygirl32]

hi little mermaid
Ive been up GOSH with my daughter since she was 7 months old and went under the care of dr kn he diagnosed my daughter with coldsores in her eyes! (which she didnt have) then doctor hamada came along when ken left looked at issie and in her notes it said she didnt have this condition all the test results came back negative!! ( funny enough pinklady@s daughter was also diagnosed with the same condition that she didnt have too by kn)
I was soo plsd when sh came along it took him a while to to diagnose her and he gave us great care at gosh ( because its such a rare condtion in children) that when he said he was leaving we were devastated so as he was only going to east grinstead we said we would follow as its only 45 mins from where we live and cheaper to get too ( and under nhs) as he has been the only doc to get issie to where she is today no screaming in the morning! have you eva had a child not stop screaming at you in pain for hours?? not nice! he gave us direct contact with him by email and is very quick to respond and if we are that bad he even calls us to see how we aer getting on thats good sevice aint it lol! so i would recomend him xx

[littlemermaid]

Hi Sammygirl, That's fantastic! So happy to hear SH is in the NHS (yeah!), and that Cornea team so handy for you and you've got it all in place. Is there 24/7 cover?

Yes we get burning surface pain - not as bad as your poor Issie and Pinklady. When LM's in pain we can't manage without being seen within 4 hours so phone round Oxford, Moorfields A&E, GOS, and I've made sure there's notes at each. Our county PCT eye service has no paediatric knowledge, misdiagnosed her one year. I was furious about Oxford triage last time 'she can't be seen today, if we saw everyone we'd never go home' 'I thought it was 24/7 at Oxford' 'phone back at 5.30' ie when consultant's gone, to see random night cover (who last time misdiagnosed LM has having drusen rather than papilloedema on the optic nerve heads and couldn't work the ultrasound). I took her to WM who sorted it all out so calmly and beautifully <happy!> Moorfields A&E have been fantastic too, esp first thing in the morning when there's no other patients, although we get up before 6 to get there. They examined, swabbed and sorted things out, then referred to Cornea clinic within 4wk

Paying peak rate train for London is awful, isn't it. To the point where it can be more cost effective to see a private doc for a one-off if I have got work. I can't even take regular 1-year teaching assistant contracts in school because of travelling about to different hospital appointments. Plus school phone to collect her when she has red eye, photophobia, or head pain (intracranial hypertension) so I treat it or get her to ophth or neuro. I think when they are 16, the child can apply to NHS for travel costs plus carer fare <sob>. One lady with baby told me a local volunteer driver took them to GOS from home - this volunteer was a retired surgeon, he said 'I do this because I know what it's like' <saint>.

Did Issie not have a rash around the eyes when she was a baby and this all started? I guess a negative swab doesn't mean no virus previously because they can only swab the surface and under eyelids without using a needle. I don't know why they don't swab first thing though. I have seen memos pressing docs to minimise microbiology tests on cost <fume>.

Is this right, do you think? 'While an entity designated epithelial basement membrane dystrophy (map-dot-fingerprint or Cogan microcystic dystrophy) is widely regarded as a "corneal dystrophy" by many ophthalmologists, this condition is not a distinct inherited disorder, but rather a non-specific reaction to a variety of corneal insults.' http://www.ojrd.com/content/4/1/7

I've found these terms are descriptions of what different docs are observing and that's why we don't seem to get 'diagnosis'. Diagnosis has been more like picking apart a tangle and sorting out components of a mess and then describing what's happening, and I like to keep an open mind while we look at this together. Even now, experienced docs mutter about effects post-virus, systemic autoimmune conditions they don't know much about, how antibacterials and steroids could even work at that low dose (eg 2/wk), with LM.

This doesn't panic me like it used to as long as she's healing or well maintained. She certainly gets eye flareups during common viruses and has some immune problems. Some systemic conditions show subtle but serious in the eyes. LM started post-virus, post-steroids, puberty, stress of new school. Now she has systemic inflammatory and face skin problems with chronic mgd eye inflammation. Who knows what the triggers were. A negative test doesn't even seem to mean you haven't got or have had something - my cousin is a histopathologist and she says to get a postive depends on how clear the doc instructions are on suspicions and site and type of sample as to what tests they do, which are various.

Have you got help at home, Sammygirl? This must be so hard.

have you eva had a child not stop screaming at you in pain for hours?? not nice!