Daniel'sFight w/ Evans Syndrome
What we found out in the wrap up meeting.
Daniel has been misdiagnosed the past 5 years. Daniel does not have Evans Syndrome, ALPS, CVID.
The reason Daniel got fungal pneumonia because of the mold and the rest of us only asthma is because he has a Hyperactive Immune System and it attacked him differently. Also because the retuximab killed off his t and b cells which is why he has no immune system igg, iga.
Treatment is cellcept to shrink the nodules in his lungs. Ivig every 3 weeks to boost his immune system. Every 3 months back to NIH for ctscans of his lungs. He has 61 percent lung function if this med does not shrink the nodules and they keep growing he will need a lung transplant in the future. Please pray this treatment works. We were advised not to go back to CINJ because they are not equipped or knowledgable in Daniel's diagnose and he will continue to be treated through NIH from now on. Still waiting on genetic testing. That could be weeks before we know anything. Thank you for your support through all this.
Daniel and I will be staying in the hospital. Daniel is suffering the worse. He is down to 116 pounds cannit eat or drink. He is on IV nutrients. Still very very ill. The nihl is looking at Daniels case and as soon as they tell us we are going to Maryland as in patient to get Daniel better. We are looking to get out asap. Daniel refuses to go back the place. We all do. We will be trashing all belongings and starting over fresh as with the toxic mold is airborne so everything must go.
All of this could have been prevented if the tenants above us didnt have an illegal washing machine and management took care if it years ago when we first reported it. In the years they kept flooding our bathroom. This past November we noticed mold growing. Still nothing done until Infectious Diesease contacted the health dept on our behalf.
Daniels dad is out on family leave and not getting paid. He needs to be with the kids before and after school for the bus.
The infectious disease team is testing our whole family on Monday full work up to tie all our illnesses that we been suffering with since January when Daniel first got sick. Jessica and Matt asthma and Jrs. Hashimotos disease and swelled nodes.
Please keep our family in your prayers.
This will be the cause of the day on Thursday on the Tommy G Show. We are the 3-6PM show on 1450WCTC. I am also mentioning the blood drive. Good luck, you are in our prayers.