Since mid of december Zoé is fighting an inflamation in the left eye. Everything started around the time when she also had a rhynopharingyte/angyne. Mathieu saw her waking up one day with dry things from her know on a hair on the left side. This due of the coughing in bed and sleeping on her belly. The first day she had only drops to clean the eye.
Begining of January the situation was not better and the German general doctor gave an antibiotic cream.
Then Mathieu left for Kourou 4th Jan and the girls to Greece the same day.
After 6 days in Greece her eye started to close more and more and the pain increased accordingly.
She had her first Crisis. Crisis goes as follow:
- First day the eye is pink almost red. The iris seems clean and the eyelid is closing.pain is very severe and had prococed vomiting. She is not rubbing her eye. We tend to think of headache pain.
- Second day she is a Zomby. No energy. Barely eating and sleeping long hours. Her eye is very small. Continuously asking for hugs.
- After one complete day of treatment with atropine and cortison she feels better. Pain seems to be away and energy comes back slowly.
Bebou visited the Athens eye hospital where she got treated by Dr Rallatos Gerasimos (specialised in pediatric Uveitic Cases).
Posologie per day:
- 1 drop: Atropine
- 4 X 1 drops: Maxidex (cortison) with progressive reduction of drops when the inflamation is under control.
Everything went well until the end of January. Papa is back from the launch campaign of his satellite. The last week of treatment Zoé had one drop of Maxidex on Monday and another one on Thursday. Unfortunately on the friday her eye started to be bad again. And she had another crisis as described above.
In the meantime Tati Marion came to visit us in Bremen for a week. She will be with us the whole and she is a great support. One friend made us the favor to see Zoé in the eye hospital in St Joseph stift on Saturday. Bebou is nervous and she can’t see the problem. Inflammation of the eye is clearly observed. On Monday 13th of February we go to Hamburg to the hospital eye university. Doctors says it is too early age for viral infection and don’t have other idea. They mentioned a possible rare decease: Juvenile idiopathic arthritis. But Zoé should have other symptoms like pain in the joins / bones and a clear mark in the cornea which is not the case. We are instructed to continue Cortison drops and Atropine.
Posologie per day:
- 2 x 1 drops: Antropine
- 4 x 1 Dexa-sine (Cortison)
On Tuesday 14th we took blood sample from examination. This is to exclude mainly Autoimmune decease and Leukemia.
On Thursday 15th we came back to hamburg to meet Frau Prof. Dr. Nicole Stübiger. Expert in pediatric uveitis. Bebou’s eye is much better. But the doctor take our case seriously and indicate to follow the cortison therapy.
Friday 16th of February, we had to go Greece for professional and personal reason.
We arrived from the airport and leave Zoé to the grandparents in order to attend the Space New Generation worshop. Saturday is also dedicated to the workshop. Sunday is relaxing at home. With a bit of gym in the afternoon.
Monday appointment at the Athens eye hospital for a checkup. Nothing particular is recommended. We continue the therapy with the instruction to avoid inflammation. This was not said clearly before. The afternoon we went all together to do some shopping in one of the big mall in Athens.
On Thursday 23rd Bebou had again a crisis. We just came back from the playground and within 1 hours she was very bad again. Crisis as decribe above.
Friday we had to go to Patras for a wedding. The grandparents took her to the Athens eye hospital. Directly an examination under sleeping condition is planned. There is blood in the iris. We came back to Athens immediately and the doctor explained us the situation at the end of the day.
After excluding several option:
- Family genetic disease: No
- Recent hit on the eye: No, She hit between the night of tuesday and thursday on the bone of the chick just below her left eye (but not in the eye).
- Pain in the join / bone: No
- Mark of dots on her skin: No
Then one suspicion would be juvenile xanthogranuloma iris. Basically a type of tumor.
We are devasted.
Doctor cant make the diagnosis but take our case very seriously. Appointment is taken the next Wednesday for additional front eye scan “UBM“.