My name Tiffany and I live in Boise Idaho. My daughter Meranda is 8 years
old. She has PAN.
When Meranda was almost 7 she had a physical. No particular reason for a physical, but I just thought it was a good idea since she had never had one.
At the physical her blood pressure reading was 145/100. This was not good as we all know. We went to a heart doctor. It was not the heart. We then went to the pediatric kidney specialist. After every test possible and no answers she had an arteriogram.
With medicine Meranda's blood pressure is at 110/70. The arteriogram showed several stones or pinched arteries in both kidneys. The first arteriogram was 10/01. The radiologist who did the test decided it was PAN.
Our doctor at the time put Meranda on the medicines for that and then a couple of weeks went by and he changed her diagnosis. I was not happy about this change in diagnose because it did not feel right.
Our doctor left Boise summer and went home to Texas. We now see a doctor who is kind of enough to travel to Boise 2 to 3 times a month. After looking at Meranda's arteriogram films he was shocked that our old doctor changed her diagnosis. Therefore he ordered another arteriogram.
She had that 01/02/03. Lucky for us the same radiologist was available and he did the arteriogram. This time they looked in her kidneys and her intestines. Again the
diagnosis is PAN. This time both doctors agree. We are now being sent to a doctor in Seattle.
Unfortunately Idaho is not a very populated state and therefore there are not a lot of pediatric specialists here. If I understand my daughter case very well I would say she
is currently in remission, if that is what it is called. In Meranda's case the PAN has shown itself in her kidneys and in her memory.
Looking back now and know what I know I would say there were things that were not right. One is that one day Meranda could not read anymore. She was going into the second grade so her reading was not awesome but she could read. One day we sat down to do our reading and she couldn't. The first word Meranda learned to recognize before kindergarten was the word: the.
When we sat down that day she did not know that word at all. There have been several memory things sense then. Meranda saw a doctor for that and she said that her working memory is messed up. As far as her kidneys go, we just keep her blood pressure good. She takes medicine for that everyday.
I am very grateful for those of you who have started this group. After meeting with our doctor today and I asked him if there was anyone else in Idaho with this he said no.
Meranda is probably one out of 10 to 20 children in the country with PAN. Thank you for being there. Thank you!!!!!!!
This story had originally been published on the Pan-Support-Website of Ed Becker. Thank you for letting me publish it here.