The diagnosis is ... and now?
On 04/16/2013 we were therefore allowed to go home.
Medication at the time:
Prednisone: 60 mg (to 20:04.), From 21.04.-27.04. 40 mg, 28.04.-05.04. 30mg, 05.05.-11.05. 20 mg, 12.05.-19.05. 10 mg, from 20.05. 5 mg. (That's cortisone).
Azathioprine 75 mg to 29.04. from 30.04. 150 mg (immunosuppressants)
Omeprazole 40 mg 1x daily (stomach protection).
Ideos chewable tablet 1x daily. (Vitamin D and calcium)
Circadin 2 mg at night (melatonin helps against insomnia)
The doctor timetable:
10 days - later presentation in the outpatient clinic next city.
- University Hospital Essen clinic in 3 months
- 1x a week for four weeks bloodwork monitoring by the family doctor.
Liver function tests at this time:
- GOT 873
- GPT 878
- GGT 72
Now I shorten time from something. There followed a long time weekly blood draws, meshed appointments with GP, Day Clinic and University Hospital.
On 29/07/2013, we were once again at a outpatient appointment in Essen, as a Fibroscan was taken.
The value should be in a healthy person <3 ... with my mouse a value of 14.4 kPa was measured ..... the doctor said no longer so convinced at once, it would be even fibrosis grade III and not already cirrhosis. In the letter he described it then as "... may correspond fibrosis grade III". This was the first time I had the feeling that doctors are not honest with us. Probably doctors often think that a mother will turn crazy immediately when they tell her the truth ... I had this feeling a few more times.
That time I surprised any doctor, because I was always well informed and have asked. I had always immediately pull all documents always as a folder and was able to get anything needed for all questions.
Then a medical report, the copper value was borderline and so had to be tested for Wilson's disease, which thankfully was negative.
On 04/09/2013 then facilitating clinical remission ...
10/03/2013 hospital
My angel got the day before fever, malaise, difficulty swallowing, headache and body aches, vomited and had a hoarse voice.
We drove to the emergency medical services and everything went normal, exactly up to the time when I mentioned the AIH. Since this you could almost see the panic in the eyes of the physician. I know it is a rare disease, but when he simply wrote down me an antibiotic, put it into my hand and pushed me out together with my nearly collapsed child with the phrase "If it gets worse, please go to the Children's Hospital", was I nevertheless shocked and speechless.
I stood there ... recipe in one hand, painful child in the other arm and the way to the parking lot in front of us. Somehow I dragged my mouse into the car, told her I leave the door open, told her I must go to the parking machines to validate the card and than ran back ... Then back to the pharmacy and ... at the pharmacy, I asked the woman to be a little faster cause my child in the car built down by every minute ...
When we were at home, I put my angel to bed and tried not to panic, gave her the antibiotic and measured fever again. Seeing then that we were now arrived at 41 °, I called the emergency department of the Children's Hospital, where we are also in the outpatient clinic for treatment. Since all data is there in the computer, the doctor could see there immediately what he had to do it at my daughter and said to me, "Come here"
My mouse was hospitalized and after 1 day on a drip she was back fever free and doing well, so we were allowed to take home. What was the purpose of this fever, we do not know until today.
12.10.-15.10.2013 Hospital
After KRH stay until just preceding my mouse diarrhea developed. Did not stopped, no matter what we tried. At the 09:10. in turned bloody and the frequency increased to 11x daily and 3x night. No fever. And when I say bloody, I mean ... it looked as if only came blood ...
It turned out she had captured Yersinia.
The first dream career choice blurted ... My mouse wanted to be a veterinarian and had at the time when the first fever forced into KRH just 3 days (!!!!) worked in the dog house of the shelter. You got IMMEDIATELY animal ban what strange animals concerned. We were told that she could not do this job. It met my angel already very much, but after a short time she pulled herself together and then made up his mind criminologist in the laboratory to be ... A small Abby (NCIS) wanted to be.
Now some of our everyday lives ...
My angel gave everything at school. Struggled, but often she found it very difficult, because almost every day we had to fight with joint, bone and muscle pain, headaches, stomach pain, abdominal pain and an infinitely heavy leaden fatigue.
When my mouse came home from school at 1 p.m. , she was so exhausted that she had to lie down often only 2 hours sleep before she made homework. Almost every other week she could not go to school 1-2 days. In sport always been one of the best, she was now always the slowest, worst and last and lost all joy for it, because sport meant pain. After particularly stressful days she usually got temperature. We had announcements from 38 ° temperature to go to the doctor and more than once I found out why ... When my angel was at 38 ° first time, the temperature was sometimes soar to 40 ° within 30 minutes.
She often had a cold or cough, and ended at the beginning of each of these infections in KRH.
Eventually I had to bow out and they no longer had to at least every time the infection KRH. In my feeling she was always sick ... I started a diary of her being to write. She no longer went out, made no friends more ... given it lacked just the power, not adjourned any food and they adjourned, and the food she could eat regarding the drug, sometimes tasted good and sometimes tasted EVERYTHING oversalted. ..
We reported on the hip-hop dance class, because we wanted to bring her out of her isolation. That was not long well ... Actually, she enjoyed, but after each hour everything hurt even more and she could not keep up, so she asked us after 3 months, she wanted to terminate again and no longer need to go.
After each trip we took, she had a fever. Was exhausted already after 30 minutes slow walking.
That was our daily life and it is also just as today!
I do not know how my mouse has so far managed to bring us every time truly wonderful testimony. What she must have invoked that.
Sequel follows ...