It started in Grade School, my daughter had Raynauds,(hands and feet purple) She went on to high school was a honour student, then in Grade 10, 2006 she found it more difficult to be active in sports, was so tired she could sleep 14 hours and still not be refreashed. She had daily headaches and had trouble studying (brain fogg). I suspected Lupus and booked in with GP then had a positive ANA nothing else convincing. Saw Rheumatology in the Spring, nothing, saw her again in June and symptoms were magnified, if you look at the list for Lupus symptoms she had all but two. Rheum thought she had Juvinile Arthritis, no bloodwk, xray nothing, 3 minute appointment the Arthritis society will contact you.
Luckily I have a Doctor friend and was referred to Sick Children Hospital as he felt as I did, this is not the diagnosis. We went to sick kids and a battery of blood tests---None were alarming them to Lupus. We heard the word Chronic Fatigue, Fibromyalgia---My daughter was so frustrated she thought they didn't believe her. She was then refered to a Rheum Psycyiatrist( and I am a lousey speller). I was so shocked that my daughter was telling her the little hallucinations she was having upon her questioning. She told us that she has seen this before and felt she had Lupus on the Brain?
The next month we went to the Rheum and she said your daughter has Lupus a mild form and we will start her on Prednisone 60 mg and Imuan etc. O.k. we have a diagnosis not that we wanted Lupus but we knew something was really wrong even her school work had suffered.
Then only 1 mth later we received a call from a country hospital, our daughter was fine but she had a seizure, her friend and her had been shopping 2 hours away and this happened in a intersection. Luckily a parametic on the street saw my daughter turning blue and quickly took over. She had another one shortly after I arrived at hospital the longest drive I ever took. She stayed in this hospital overnite in ICU, after a spinal tap, CT scan and bldwk.
She was transferred to Sick Kids the next day by Ambulance and proceeded to loose speech and balance, the was unresponsive. Now I as a mother at this point was freeking. They tried to do a MRI, but her vitals dropped it was at this time they think she had her stroke. They tried to stablize her then to go for a quicker test CT scan with contrast and saw the massive blood clot to ber sagital sinus in her brain. This was July of 2007.
Once on the floor it was 1000 mg times3 for Methylprednisone and Heparin Etc. Rheumatology was so surprise to see her so sick. We were lucky though they at least knew us.
We went home after some time, her speech was a bit off, balance and short term memory was affected. We here closely monitored then it all started again.
She started to loose speech and balance, and memory again. Since she was on a low molecular Heparin injection they knew this was more than the clott so they told us the prednisone wasn't working and started her on a cancer, chemo drug Cyclophosamide. ( plus 3 pulses of 1000mg of methlpred.) This was August 2007. On leaving she was having another side affect her bowels woundn't move. We were hospitalized 3 times after that for clean out, one stay was 5 litres of Peg-Lyte (same as for a colonoscopy) through a nasal gastric tube and 16 peg-lyte enemas.
So right now she is finished her 3 chemo treatment (has lost a lot of hair but now all yet-----). We are going to more tests on her colon as it may be affected by the lupus. We are seeing a compliciated Gyne as she is having her period all the time. Neuro,Thrombo,Rheum,Psy,Opth. She is on many meds, antiseizures,prednisone, G.l meds etc etc.
I know this is a long story but like many who will read this it took years for her progress to this stage of Lupus. She was a pretty normal kid with school and a job right up to July the 17th 2007. She at present slowly getting better, her speech and balance is much inproved. Her memory is a bit of a problem. She is sitting out this semester from school. She is dealing with alot of fatigue. She will still have several more treatments of chemo.
It has been the most worrysome time of my life. It is very hard to see your lovely child suffer. I just count each day with her a blessing. I hope to gain strengh and knowlege from this website. Thanks ahead to all who help me.