Lorrie
07-16-2006, 09:50 PM
Hi! My name is Lorrie mom to Jakey who just turned 5. In March he was diagnosed with SLE. He has alot of other issues that do not seem to be related to Lupus (but seriously, how many times can lighting stick the same spot?) He was born with Agenesis of the Corpus Callosum, meaning he is missing the part of his brain that connects the two hemispheres. It is usually a symptom of another disorder (although you can be missing it and be perfectly normal). He cannot walk or talk, but he can do alot of other things (he just started climing the stairs). He has extemely low muscle tone that caused scoliosis (he had growth rods placed when he was three.) We know he has a gentic disorder, but we have no idea which one. He keeps his doctors stumped. He also has lots of calcium in his urine that causes him kidney stones, but the doctors have no idea why.
We noticed something was wrong with his kidneys in November of 03 when he was two and a half years old. He had blood in his diaper (it was only one diaper). The ped ran some urine tests and found nothing and called it a fluke. In January of 04 he had lots of blood and we finally got to see a nephrologist. It was then when we discovered he had lots of blood, protien and calcium in his urine.
A kidney biopsy in June of 04 provided mixed results. The pathologist here said it was Lupus Neph. The nephorolgists did not think that was the case because he was so young, male and had a negative ANA. The pathologist at NYU diagosed him as having IGA Neparthopy. They went with that diagnosis. He has been on CellCept since then.
A new biopsy dianosed him with Lupus SLE this past March. Luckly he is treatment is the same as IGA. He still has a negative ANA. It is hard to now how he feels because of his ACC he has a high pain tolerance level than most people and he is nonverbal. He does sleep alot (15 hours every day) and run fevers.
Wow. I did not mean for this to be a novel. Thanks for reading. Sorry if I hurt your eyes. Feel free to ask any questions. I love talking about Jakey.
We noticed something was wrong with his kidneys in November of 03 when he was two and a half years old. He had blood in his diaper (it was only one diaper). The ped ran some urine tests and found nothing and called it a fluke. In January of 04 he had lots of blood and we finally got to see a nephrologist. It was then when we discovered he had lots of blood, protien and calcium in his urine.
A kidney biopsy in June of 04 provided mixed results. The pathologist here said it was Lupus Neph. The nephorolgists did not think that was the case because he was so young, male and had a negative ANA. The pathologist at NYU diagosed him as having IGA Neparthopy. They went with that diagnosis. He has been on CellCept since then.
A new biopsy dianosed him with Lupus SLE this past March. Luckly he is treatment is the same as IGA. He still has a negative ANA. It is hard to now how he feels because of his ACC he has a high pain tolerance level than most people and he is nonverbal. He does sleep alot (15 hours every day) and run fevers.
Wow. I did not mean for this to be a novel. Thanks for reading. Sorry if I hurt your eyes. Feel free to ask any questions. I love talking about Jakey.