Such a good thing when I get a note from you! Someone speaks my language! I feel my shoulders relax. We have windows covered with shades to block sun because it will cause problems! Traveling increases vomiting chance. We feed every two hours (high carb with sugar). My watch alarm goes off and that seems to help. We get "motor time" with crash mats, jumping in spurts because if he goes too much (20 mins) he is red in the face like heat exhaustion, immediately sick to his stomach, and most likely will have to throw up. I LOVED the info from you about the leg pain and using the trampoline. I had not bought one and NO ONE seems to address his leg pain here. I tell them he complains since he was so young about pain and that he still has to take "breaks" in the stroller at 5 to recover and drink. Have others joined? THANK YOU for writing. LOVE all you can tell me.
Thanks for writing! House still on market. Travel to Austin on weekends only. Husband living there and me and boys here. We added L-Carnitine and CoQ10 and it took awhile but some real improvement. What did you mean by good sugar? I would like to hear more. Still complains of his legs hurting him all the time! He manages to walk but does not do well with exertion or exercise. We are going to run several tests (blood) when he has his next "sick" episode that is a good one so they can capture levels during it. That is so hard at times because it hits hard in the late hours of the evening or wee hours of morning and I have to take his brother and we are going to have to go to ER to get the draws done. How are you? How is your son doing? Love to know more. Thanks for keeping in touch.
Good to hear from you! I must say I am not good at using the web site but want to stay on board. Saw Geneticist who is sending us to Biochemical Geneticist..more appointments..much advocay on my part. Having some problems since recent changes in meds...sick since Christmas with headaches, overall ache/pain with exercise, and can literally just have to rest from eating supper--as if it wears him out and he needs much sleep to recover. We are moving to Austin, Texas due to husband accepting new job and much fear about finding new docs and finding a doc who really "gets" that I have a son who is 30% perfect with 70% time he is in pain, headache, throwing up or weak with muscle pain. I still want to travel to California and see Dr. Boles but must figure out if insurance is going to pay for testing. How is Zachary? How come new genetic counselor? Thanks for writing!
I added a fun quiz called Visual DNA on the side bar on the main page. Those are my results but I am about to give my son an chance to choose what images he likes best. Cool.
mitochondrial DNA genetics
Discussing mitochondrial myopathies
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