Presentation

On Dec. 16th I had the privilege to give a presentation to the staff of 2 medical at Ridgeview Medical Center about Lucas and TRAPS. It went very well and soon I hope to have it up online for others to read and learn from.

Going beck to September

In September Lucas was able to start preschool at Watertown Mayer. He seems to really like it and has not had to miss to may days due to illness. We decided to let him try school and see if his body would let him do it.
Lucas is receiving help at school through special ed and a group of wonderful people. They have set up a plan to help him throughout the year so that he can have all the experiences of a normal child. HE gets really upset when he has to miss a day, but it is going well.

Update

Okay so instead of trying to find time to get all of Lucas' medical history on here. I have decided that I need to just work on updating everyone about how he is doing currently. This way I will not fall further behind. We have been so busy that nothing is getting done.
So the first thing to update about is that Lucas experienced his first surgery in October. He has to have dental surgery. He now does not have his two front teeth and has many fillings and caps to get him through until his permanent teeth come in. Hopefully these teeth will be strong because he will not have to be on so many antibiotics anymore. He did well with this and now daddy has nicknamed him fang. He likes to show off his missing teeth.

                                                                           Before

                                                                      Right After Surgery

The New Look

Last week Lucas developed fevers of up to 105 again. We took him into the er and found out he had pneumonia. HE was put on antibiotics and sent home. It was a long had week of fevers and doctors visits but I think he has now turned the corner and is starting to feel better. He still is very tired and runs low grade fevers, but this is much better than a week ago.
We are busy getting ready for Christmas in our house so it is crazy like always. I will try to get a few more updates done about his last few months. I can make no promises though as everything is always so busy.

Lucas' Doctor

Lucas is being treated for his TRAPS at the Pediatric Specialty Clinic at the University of Minnesota. He sees Dr. Bryce Binstadt there. The following is a link to a page about Dr. Binstadt.
http://www.umphysicians.umn.edu/FindaPhysician/phys_4432.htm

TRAPS What is it?

TRAPS stands for Tumor Necrosis Factor Receptor-Associated Periodic Syndrome. It is a rare autosomal dominant disorder characterized by prolonged episodes of periodic fever and erythematous macules, patches, and edematous dermal plaques. The skin eruption usually lasts for 4-21 days (mean 13 days). There are numerous other systemic signs and symptoms associated with the syndrome including:




Conjunctivitis




Periorbital edema




Abdominal pain




Myalgia




Arthralgia




Pleuritic chest pain




Headache

This picture is how Lucas looked, when we first realized this was something more than him just getting sick all the time.

A trade off

Ok because I have been so busy going to school full time and being a mom. I have decided that I am going to just copy and paste the information that I have on Lucas' facebook group to get the information on the blog. I will then after that work on getting Lucas medical history caught up and get some new information on the blog. Thanks to everyone for all your prayers and support. So I will try and get all this information up on here in the next few days so that I can move onto more medical history. It just takes so much time going through all the information that I have.

Sorry

Sorry all I have not gotten much on the site yet. We have had many things going on in the last few months. I am going to try to get some more information on here soon along with an update on how Lucas is doing, and how his more recent U of M appointment. It will be soon promise!