02/03/2016
Well we have been up since 530am and just getting back to hotel. Im so exhausted. We had a productive day but lots of information. We have a lot to learn about Elhers Danlos and how its seriously affecting my active, busy little boy. We had 2 xrays done today on the ankle as well as numerous other exams. Morgun has Ligamentous laxity which basically means loose ligaments.
See with Ehlers-Danlos syndromes (EDS) have a genetic defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in patients with EDS are the result of faulty or reduced amounts of collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue. Its causes skin wounds to not heal, dental issues and gum disease, feeling dizzy and faint with headaches, brusing, and so much more. Basically morgun doesnt have much supporting his ankles and feet and its causing pain and swelling.
Yes Morgun looks normal, he runs, he plays, he plays sports, we dont want to take that away from him but we have to start putting restrictions on things, like jumping from high areas, no monkey bars, no physical cotact sports like football or like playing a position like catcher or pitcher on a baseball team, since its harsh on the joints, but he can be the best short stop ever. :) We have to get a new mattress so he is comfortable and his joints are okay. We also have to tell him no more jumping from his bunkbed ladder. This is all going to be an adjustment, but
I know we will eventually do it and it will be come our normal, but right now its breaking my heart. If we dont it leads to arthritis, osteoarthritis, and basically wheelchair bound if gets that bad. We found out the Headaches Morgun has been getting are from elhers danlos also. Its from posture and sitting and etc.. Morgun is 6 and yes we get the laughs of why is he in a stroller, he tires out and what normal people can handle walking a few blocks Morguns body doesnt allow it. Morgun pushes himself though cause he wants to be like everyone else, so we have lots to learn so we can intervene when he wont stop. We also were told today by his physical therapist that he is measuring tight with his muscles and ligaments and they are sending a prescription to an inhome indepentant physical therapist for him. Its alot to take in. They want me to ask the special education department if there is any recommadations of a good pt that will do home vists. They also gave us the stroller prescription and we will have someone out to our house on feb 9th at 4pm.
Well then we talked about the urology issues on his ge****ls and dr. Grom is not sure if its truly from the behcets. See morgun has familiar mediteranean fever syndrome and its linked with behcets. He shows signs of both. Morgun is on a medicine that keeps the inflammation down. We are running some labs and a urinalysis. We also meet up with one of the best urology Drs in the nation tomorrow. So him and Dr Grom will be hand and hand with this. We have had trace blood in the past in his urinalysis test and his creatine levels have been off and recently his bladder showed some residual urine which is voiding. so we want to make sure there is no amoyldosis going on. The disease he has can cause buildup of amyloid proteins in the heart, kidneys, liver, or other organs. So we wait and see what the blood work looks like and tomorrow we will have an ultrasound done of the bladder and kidneys.
Im overwhelmed but we are in the best place for help, and its nothing we wont get threw together and with all my support I have. Right now Morgun is exhausted and freaking out with the lighting and thunderstorm, if u all know my son he is one brave boy but freaks out bad with thunder and he shakes and gets anxiety. So headphones and netflixes on mommies computer it is. Im going to take a bath and soak all this knowledge in and reasearch and read the 32 pages of information I was sent home with today. Tomorrow is another day and we will go into it with open eyes and more learning. Thank you all who have been texting, calling, fb or whatever it is. It means the world to us. Love you all Team Morgun. We will carry on with the Lord guiding us.
