Hi there! Pls offer some guidance.

[jaytor777]

Hi there,
On the 27th June my 17 year old daughter presented with redness, pain, photophobia of her left eye. We
went to a gp who referred us immediately to a general opthamologist. His bedside manner has been appalling
offering very little information.He simply told me my daughter had inflammation in the middle of her eye
and gave us steroid drops. I came home googled her condition and discovered she has Uveitis! I was shocked
as some of the info on the net is flat out scary! Anyway he advised Pred forte hourly with a nightly dose of
Maxidex and a daily dose of Atropt. He wanted to see us two days later, said the inflammation was still there
to stay on the meds and to see him 5 days later. Have just been to see him again, he said the inflammation has
gone down somewhat but is still there, to stop the Atropt, but continue Maxidex and reduce the Pred forte to
every 3 hours for the next two weeks then go to four hourly. He doesnt want to see us again for another month!
I asked him many questions, re steroid use, auto-immune illnesses etc and he seemed to be dis-interested.
He never explained the long term use of Steroids, or the condition. I know nothing about Uveitis other than what
I have googled and I feel like Ive had to learn fast! He simply said when we stop the steroids the Uveitis may
flare up again and to come back immediately if she presents with pain, light sensitivity etc. It seems
irresponsible to go a whole month without checking her eye. What are your thoughts please?

My concern is this, my daughter starting collapsing aged 11. She looses consciousness and defecates with terrible
pain. Specialists have diagnosed her with IBS and Vaso vagal syncope. She has debilitating fatigue, and has been
off school most of this year. Currently we were wating for scopes of the GI tract to take biopsies as I have always
been concerned about inflammation, possibly Colitis, Chrons etc. The specialists have seemed reluctant to
investigate her bowel. She had a sigmoidoscopy in 2012 which showed nothing. She has poor immunity developing
shingles and bronchitis. Shingles in Feb of this year, Bronchitis in May. The bronchitis prevented the scope op from
going ahead, so Im waiting for clearance for this. In Feb this year her weight was very low 42kg due to constant
nausea and feeling unwell most of the time, so the doctors put her in hospital for two weeks to re-establish
eating habits.
My understanding from all I have read is Uveitis is primarily an auto-immune illness. My daughter has been struggling
with poor health which we really have found no answers for since she was 11!. She is underweight, has poor skin,
etc. Ive tried so many things and have not been able to get to the bottom of her problem. With her recent collapse
three weeks ago, she became unconscious, defecated on the floor and lost her bladder. This is fairly common and
she would usually have one of these every few months, typically they come in clusters almost always triggered by
her bowel. She has never lost her bladder though. The pain she suffers during one of these clusters is due to a Vagal
nerve response, so very low blood pressure, sweating etc. The last attack lasted about 40 mins...its not a seizure
and its not a faint as she will lie down to prevent herself from falling and still become unconscious. As usual I called
an ambulance they took her to the hospital and the Emergency doctors suggest we wait to see the specialists
who continue to say, well we are wating for scopes. Bloods have not shown anything conclusive, although her
Chrons stool test pointed to something suspicious which is why the scopes procedure was ordered.

Given this new diagnosis of Uveitis and the poor bedside manner of the Opthamologist along with my daughters
history my intention is to get her to a trained uveitis specialist. I have spoken with a Prof in Sydney who
referred to me to Dr. Jo. Simms in Auckland. The only good thing to come out of this is perhaps this latest
diagnosis will help the specialists narrow their search for answers.

Im wondering what your thoughts are as Im extremely worried. Shes been off Atropt 3 days and her pupil is still
dilated, no pain, no redness and yet he said there was still inflammation.
Ive read Stephen foster's website and he says low grade inflammation is unacceptable and can cause problems if
its not carefully monitered. So a month seems ludicrous.

[Mike Bartolatz]

welcome to the group!
ask your primary care physician to do an HLA B27 blood test to see if this could be a contributing factor. it is linked to uveitis and Crohn's disease as well as to ulcerative colitis and ankylosing spondylitis, psoriasis/psoriatic arthritis and reactive arthritis.
intermediate uveitis (inflammation in the middle of the eye) doesn't respond to topical corticosteroids and oral steroids or injections to tissue surrounding the eye are required to treat it. sometimes the front of the eye is also inflammed and the steroid eyedrops WILL treat this part but the injections and oral steroids will treat the entire eye.
find out if it is 'granulomatus' uveitis as well.

the specialist in Sydney may be able to help with care if you can get an appointment and then ask him to work through email or fax with your local doctors.
there are other genes that can play a role as well that are liked to this but those could be tested for later on if the HLA B27 gene test proves negative.

the DMARD class of drugs is often used along with Remicade or Humira, TNF A blocking drugs to stop the immune system attack on the digestive tract and the eyes but steroids are needed to get the eye quited down as the immune system takes several weeks to react to the DMARD and TNF A blocking drugs.
Methotrexate, Cellcept or Imuran are DMARD drugs frequently used. try to select from one of them and one of the TNF A blocking drugs above.

other autoimmune or inflammatory conditions that can cause GI problems and uveitis are Sarcoidosis, Systemic Lupus Erythematosus and they can have vascular disease present with them and skin rashes.

ask your daughter if she has dry eyes usually signaled by a gritty sensation. then get her evaluated with dye on the surface of the eye and a litmus paper test to see how much fluid is produced by the lacrimal gland. often what is known as keratoconjunctivitis SICCA occurs causing dry eyes and dry mouth, dry skin etc. with all of the above conditions and it has to be treated to protect the cornea from inflammation, infection etc.

join us at http://www.uosg.org where there are individuals from around the world with kids with uveitis. the PARENT"s forum is the place to post and I help out there for Dr Foster and his Ocular Immunology and Uveitis Foundation.

wishing you and your daughter the very best,
Mike Bartolatz