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TracyDawn
05-24-2005, 08:46 AM
We opted NOT to do the Lupus labs. Since there is no "cure" and it's not a positive that he has it, we opted to take a wait and see approach to the issue. He's just turned 7 so didn't want to put him through it unnecessarily. However, they have noted it in his chart and will keep an eye on things in the future. For now we are just going to wait and watch, and take a couple preventative measures. He will now be wearing a hat at all times when outside, as well as sunscreen, even at school. She said he really needed to do that anyway due to his fair skin and light blonde hair. But since the sun seems to be the trigger for him we'll try to his and see if it helps. We also got a prescription for migraine meds. BUT we are going to give his glasses another week or so and see if the migraines calm down (having 4-5 a WEEK for the last month or so :( ) before filling the presc. She's like me in that she doesn't want him on meds unless he needs them, and if we can prevent them using other methods then I am all for it.
You guys don't know this but when he was 18 months old he was diagnosed as "Failure to Thrive" Man I hate those words. He lost 7 lbs within ONE month and we have been seeing a gastro dr at Shands Children's Hospital ever since. He just turned 7 last week. So a long time and we are JUST NOW getting his weight where it is "normal" It's been a long battle. They have yet to find a reason for it but he gets bad stomach pain, as he did this past weekend, so we'll be seeing those drs again for a check up. :( I LOVE our dr there but will be so glad when we are not seeing them anymore. He is a Miracle Child with the Children's Miracle Network because he has come so far. :) For the first time we are on the POSITIVE side of those growth charts, at 20% for weight and 10% for height. For the longest time he was at those percentages on the NEGATIVE side of that chart so we always do a happy dance when he's gained weight. LOL
Anyway that's where we stand right now. Thanks for your thoughts and prayers as we continue to navigate this pathway. He's been through so much medical wise that it really would NOT be fair for him to have this too. :( Thanks again, and I hope you are all having a great day/week.

Saysusie
06-03-2005, 11:25 PM
Hi Tracydawn;
I completely understand your not wanting to put your son through the testing process for Lupus. He is so young and, like you said, has been through so much already.
I am truly happy to hear that he is now on the positive side of his numbers and will pray that this trend continues. Keep us informed and know that our thoughts and our prayers are with you and your precious son!!

Peace and Blessings
Saysusie